Dec 2, 2017 - HEALTH UPDATE
After 6 long, hard years... My blood work seems clear of the spirochetes/Lyme. It was tested at John Hopkins Hospital on the East Coast.
My Doctors said my blood work is still showing my inflammation is more than 3 x’s what it should be on three different tests. They do not know what is causing the inflammation. It could be that the Lyme did a lot of damage to my system.
It’s a vicious circle of my inflammation causes pain & then the pain causes inflammation. All this inflammation can be causing my chronic fatigue & joint pain.
To get the inflammation down, the doctors are doing a process of elimination.
1) My blood work and photo of my blood shows that I have Candida, so I am being treated for that. Taking antibiotics to treat the Lyme for many years can turn beneficial yeast into a harmful fungus.
2) The Dr. is also pulling toxins out with compound pharmacy suppository, which may help the inflammation.
3) Building up my immune system with high-grade supplements & B12 shots.
4) My blood work shows that I am borderline anemic, so taking a strong Iron supplement.
5) Continue to do no sugar – sugar can cause inflammation.
6) Getting my Back pain down may help as well. I am doing an epidural for my low back Dec 22.
7) Continue to go down on my Pain med. Sometimes if you are on pain meds too long; it can have the reverse effect. However, it is a slow process. It may take about a year. The problem also is I am in so much pain (8 -10 daily) because of the inflammation. So my pain is high, but I am taking more than half less of the pain med. It has been a rough year for those reasons.
8) Finally, I was tested, and I have Fibromyalgia, which I got most likely because of the Lyme. So I am monitoring that.
For anyone who has Lyme, getting the right doctor who specializes in Lyme is recommended. It may take a few consultations from different doctors to find a good fit. They must know the most recent ways/medicines to combat the spirochetes. If you just got bit, then maybe take an oral antibiotics for 1 -2 months. They may suggest 2-3 weeks. Ignore that, and make sure you kill them right off the bat.
For those who are really sick- IV antibiotics are the best. Please see your doctor for the right amount. This is the cocktail that killed my spirochetes. It is latest research. It is a cocktail of 4 antibiotics which kills the spirochetes that lay dormant.
1) IV Minocycline 2 x a day for 5 days a week for 1 month
2) IV Doxycline 2 x’s a day for 5 days a week for 1 month
3) IV Dacptomycin (cubic n) 1 x a day for 14 days in a row.
4) Claforan (sanofi) is subcutaneous once every 4 days for 15 times
Do not give up hope if you have Lyme, especially Chronic Lyme. It is a scary illness to have. However, there are new treatments out there. Lyme Disease can turn into Alzheimer’s, Parkinson’s, and ALS (Lou Gehrigs Disease), so make sure you take the treatment seriously. * You must be proactive with the doctors and your treatment.*
March 25, 2017 - MEDICAL UPDATE (from Renee):
Hi, I have been asked to do an update by several people.
It is hard to sum it all up, but I will try.
1) I just saw my Lyme Disease Specialist. I am doing better than last year for sure.
The IV therapy that I did last Spring definitely helped. We sent my blood work to John Hoptkins Hospital on the East Coast, and they think
that the lyme spirochetes are no longer in my blood. This is great news, because it means that I am cleared for Lyme Disease.
We will do a recheck with John Hopkins at a later point to double check with my blood work.
2) I get extensive blood work done every 3 weeks so we can monitor my overall health and chronic issues. I have some on going damage that was done to my body with the past 5 years of having the spirochetes in my blood.
My immune system is not functioning, and when that happens; other diseases and infections can occur.
My Lyme Specialist is also an auto immune specialist.
We are also working on Candida and Inflammation which are causing some problems.
3) My Pain symptoms seem to similar to Fibromyalgia- so I will find a specialist and get tested for that. My Lyme specialist said that many of her patients have gotten Fibromyalgia
since their immune systems were not working. Fibromyalgia is a disorder which can begin after a trauma and is characterized by widespread musculoskeletal
pain accompanied by fatigue, sleep, and memory. Fibromyalgia amplifies sensations by affecting the way the brain processes pain signals.
4) I have also been working with my Pain Specialist. He is the Chief of Neurology at USC.
I take medicine for Pain, Nerves, and Muscle Pain.
I see him every 3 months and we are going down on my meds little by little. It is tricky so we have to do it at a slow pace.
5) Besides the doctor appointments- I am still doing 3 Pain management Sessions a week (Massage, Chiropractic, or Acupuncture).
This helps me function on a day to day basis. It breaks up my frozen muscles and ligaments and gets blood flowing and the pain down.
6) I have a great team of doctors and I am proactive with my care.
I would say that the Pain and Fatigue is my worst 2 symptoms right now. It is not just a little bit, it is a huge factor.
I feel about 60 percent compared to how I felt before I got sick. However, I know it is so much better then how I have been doing the past 5 years.
I could not have gotten better without the IV Therapy. Since that was all out of pocket, thank you so much for donating to the medical fund.
I no longer need to do IV therapy, so we no longer need to do fundraising. Ugo is able to handle all the other out of pocket. Thank you so much for
all that you have given me financial and emotional support through these past years.
I do not even have words to say how much I appreciate the kindness that has been given to me from all of you.
If you would like to reach out, please email me or text. I do not check Facebook.
Love you,
Renee
Some of you want to know in specifics what I am taking.
Here is a list:
Meds:
B12 Shots every 3 days - Fatigue
Oxygen Tank at night - Auto Immune
Methodone - Pain
Flexeril - Muscle Relaxer
Gabapentin - Nerve Pain
Oantoprrazole Protenix - Acid Reflux for the pain med
Serquil - To Sleep
Armour - Thyroid
Supplements
Biotagen - Probiotic
Ultra Flora - Probiotic
Co Q10 - Cardiovascular
Inflammablock - Inflammation and Pain
Vitamin D - Immune and Muscle Pain
Live 52 - Helps Liver Cells
SPM Active - Immune System
Borage- - Inflammation
Ultra GI - Digestive Disorders
Melatonin - Sleep
L- Theanine - Sleep
3 P- Powder - Dietary Supplement
CBD vapor - Pain
Feb 7, 2016
MEDICAL UPDATE: I am in the middle of the 60 day treatment - a John Hoptkins study. It is 3 antibiotics at once and one is through the IV.
The side effects are I am exhausted and in pain. The pain feels like all my old injuries that have come to the surface and feels pain in all the joints (ankles, knees, hips, back, & neck).
The muscles are all so tight and feel like pressure all the time. For now I am getting some type of pain management to help make it through the day.
Weekly Lymph drainage & Neuromuscular Massage 3 - 4 times, Physical Therapy 2 x week, Chiropractic 1 week and Acupuncture 1 a week. It is a lot, but if I did not do
them; I would probably tap out from this treatment. It is intense and causing my body to go haywire.
The Picc line has had all sorts of problems. First the line was stuck and it would not letting the medicine inside. Then the line was leaking blood. I had to go to the emergency room a week ago, because of complications with the treatment. The last time I was on my Picc line, I could barely leave the house. This time I can drive myself to appointments near by, and I can see my friends for a few hours which helps emotionally and spiritually. It literally raises my spirit.
The reason I was a candidate for this type of harsh treatment is that the spirochetes and the other parasites have attacked my immune system as well as my other systems - Heart, Bladder, Ovarian Cysts, and have Arthritis, and Fibromaylgia. The spirochetes can get into the spinal fluid, ligaments, tendons, and cause damage to the organs. I am seeing all the specialist weekly and have routine blood work to make sure the medicines I am taking are doing more good than bad. The team of doctors I have are specialists and I am so happy that they are all on the same page. All of them are Western medicine driven but are open to eastern philosophies and pain management. There are so many new ideas how to treat lyme disease, and this has had the best results to actually kill the spirochetes in every form they are. They can hide, change form, adapt to antibiotics, and thrive and multiple. This protocol has specific antibiotics mixed together, and are administered for 60 days every day.
In 3 weeks, once the IV treatment ends; I will wait one month and then re- test all my blood work to see if I have any Spirochetes left in my blood. There are tests where you can ac
Also they will look to see if the parasites that I got by the tick. are gone. BABESIA is caused by the Babesia microti and Babesia divergent parasites, both of which are members of the protozoan kingdom. They can affect the red blood cells. BARTONELLA are intracellular parasites that generally show preference for erythrocytes and endothelial cells in humans.
Bartonella are bacteria that live primarily inside the lining of the blood vessels. * All those can be why I am so fatigued and have joint pain.
On a side note: I am getting a hysterectomy April 20th which takes 6 weeks to heal - for me maybe longer for me since my body has a hard time healing with this illness.
The lyme disease has not allowed my body to heal by itself and my cysts are quite large and are a concern.
I have thought long and hard about getting the hysterectomy. I have talked to many women who have had one, and my menstrual cycle is 2 weeks long and horrible, which makes me bored line anemic. The Oncologist wanted to do this so long ago. I have had 3 or 4 ovarian cysts surgeries due to endometriosis. Hopefully after getting this done my inflammation will calm down. Right now the blood work shows my inflammation is triple what it should be. That can be dangerous and cause problems with your heart and can cause strokes.
By having this surgery it should help, and if my body is not constantly in pain and inflamed maybe my immune system can get better.
I know this is all a lot for someone who just took herbs and one little pill for thyroid.
It is what it is. I just want to educate others to wear the right clothing while being near grass and to get tested right away if you have flu symptoms that don’t seem to go away.
If you get on antibiotics right away you will be okay and heal faster. The usually dose is 2 weeks of antibiotics but please request 2 months if you are diagnosed with LYME DISEASE.
However, if you have been sick for awhile- your treatment may be like mine. More and more people are getting sick with Lyme Disease. All my doctors and pain management workers are all telling me they have 3 or 4 patients with lyme and some are just as sick as me. More and more celebrities are getting sick with Lyme as well. Hopefully they will use their position to educate. So please read up on it, and watch the movie UNDER OUT SKIN if you have not already. Google it, and it’s on Netflix.
Children have better immune systems to fight it off but they also don’t know the language to describe when they are not well. So just listen and do your research.
All my love,
Renee
MY MEDICAL GOALS FOR 2015 and 2016
• I have hopefully 1 last intravenous antibiotic treatment that will be over 2 months long. It a brand new study consisting of 4 medications that pulses and blasts the spirochetes. One of the medications is obnoxiously expensive and my insurance has denied it even after an appeal by the doctor. This treatment is supposed to be really hard to go through, but my doctor is confident that the results will be worth it.
• Continue to work with the Chief of Neurology & Pain at USC. I need to slowly decrease all the pain medications I take, and hopefully eventually go off them. * Besides my recent back fusion, a lot of Lyme patients have an incredible amount of pain in their joints and muscles. Some would say it is similar to someone with severe arthritis, fibromyalgia, chronic fatigue, or systemic lupus.
• I also need to work with the Neurology Specialist for cognitive impairments. * The spirochete Borrelia burgdoreri can invade the brain and spinal cord. Once inside the central nervous system, the organism can invade the spinal nerves. I not only have a hard time recalling names but also moments in time. I may forgot an obvious name like Jack Nicolson to forgetting the name of someone in my family. I also can forget an entire conversation or something I did or did not do. It was a lot worse, but it is still alarming and scary.
• Begin to work with a Specialist at the USC Sleep Disorder Clinic to help with my insomnia.* Lyme disease interferes with the endocrine system as well as the thyroid functions. Neural targets that control thermogenesis - sleep, and mood can be affected by pro-inflammatory cytokines; which are released by activated macrophages and monocytes during infection. Without sleep, healing cannot occur. Most Lyme patients have to take sleep medications as well as a supplement such as melatonin.
• Continue working with my Cardiologist. * My blood test CRP (C-Reaction Protein) indicates there is inflammation near the heart. The blood report should be 0-3, and mine was at 6.82. The bacteria can enter the tissues of the heart, and infection can cause a 2nd or 3rd degree heart block. This is an alarming number, however my EKG was okay. I still need to do a stress test, and follow up with the cardiologist.
• Continue working with my Oncologist: In my 30’s I was diagnosed with severe endometriosis, which has caused infertility, pelvis pain, and large cysts to form on my ovaries. Lyme disease causes chronic inflammation and these symptoms tend to be 10 x ‘s worse. Throughout the year I have to do blood work and ultrasounds to monitor the size of the cysts. Unfortunately the specialist cannot determine if the cysts are cancerous tumors or just large cysts full of fluid unless they do surgery. After 3 surgeries related to this medical illness, my oncologist said my lyme disease is probably causing the cysts to be even more of a concern, and he recommends a hysterectomy as soon as my Lyme Specialist feels comfortable with it.
• Continue working with my pain management team. * At the moment I can not function or make it through the week without assistance from my pain management team (massage, acupuncture, sports chiropractor). The spirochetes got into my ligaments and tendons. The pain management helps decrease the inflammation around my joints, and help with the joint flexibility. They help the week and atrophied muscles while alleviating pain by pumping oxygen into the tissues. IN ADDITION TO MY PAIN MANAGEMENT TEAM - Every morning I have to massage hot rocks on all my joints to be able to walk in the morning. I then have to stretch for 20 minutes in the morning and at night to be able to move throughout the day. Sometimes I can stretch up to an hour at each time using tennis balls, and different tools. At night I take an Epsom salt bath and then use my tens unit with patches for 20 minutes. I also use my hydroculator moist heating packs for 30 minutes. I also do fire cupping on myself 1 - 2 times a week, and Ugo does my back 1 x a week. My goal is to be able to go through a week without relying on the pain management and lead a normal life without pain.
• To be able to drive more than 10 minutes by myself. * Due to my memory problems, and also certain times of the day I have to take medication; I am not able to drive far and Ugo has to drive me to all my medical appointments; because they are almost an hour away. It would be great to let him have a day off. Also I miss being able to drive to visit a friend who lives farther away then my town. Hopefully this will change the more I work with my neurologist.
• To be able to do chores by myself. * My community has a program where they send a volunteer to go get my groceries, and someone to come do laundry and clean the house. Along the way, I keep trying to do these tasks, but I end up in a lot of pain or I can’t get out of bed due to fatigue. I am trying to find a balance of not doing to much, but keep moving forward.
• After my final 2 month IV infusion – I need to do a long cleanse to clean out my body as well as my gut.. * It can take months to detox after harsh antibiotics. My Lyme Disease Specialist said with this medication combination and dose it is common to have a severe Harisch-Herxheimer Reaction (Herx). When fed high doses of antibiotics intravenously, symptoms exacerbate when injured or dead bacteria releases their endotoxins into the blood and tissue faster than the body can comfortably handle it. Usually I feel like I have the worst flu imaginable. I am extremely weak, fatigued, all my injuries throughout my life feel as though they happened all at once – incredible pain throughout the body, as well as low grade fever, chills, nausea and vomiting.
• Continue to heal and strengthen my back. * I ruptured my back and needed surgery, but I was not able to get it because of my Lyme disease. The surgeons did not think I would heal well due to all the inflammation that the disease causes. For almost 3 ½ years I was walking in a forward position due to pain. I was finally got my disc fusion, but my muscles are extremely weak and do not activate when they are suppose. There is a lot of compensating, and all the muscles throughout the body have to be retrained. This will take a lot of time. On top of that, Lyme causes inflammation, and I have had many relapses throughout the year. The Orthopedic surgeon can’t do some procedures he would like to speed up the healing process. But a steroid injection to the ligaments suppresses the immune system, and my immune system already does not function.
• Continue my subcutaneous IVIG Immunoglobin treatments. * This therapy is used with auto immune diseases and antibody deficiencies. My infusion takes 3 hours and is administered at 6 sites on my body. Each site swells up and burns during and after treatment. It causes nausea, headaches, and fatigue. The night of my infusion I can usually sleep 12 – 14 hours. This creates and builds an immune system to one that is not working. The dose and duration may change, but my specialist said I will need to do this for life.
Getting better has been more than a full time job. It is full of Blood work, X-Rays, MRI’s, Cat Scans, Ultrasounds, ER Episodes, Infusions, Prick, Prodded, Probed, Pain Management, Several different Pharmacies, Days where I can not get out of bed, Phone Calls, Insurance Paperwork, Nurses, and all day Doctor’s appointments.
You may be thinking why has the antibiotics some of those medical issues? Last year I could not go to an event without a wheelchair. Last year I had to constantly canceled plans with friends who wanted me to get out of the house. I mostly only left the house for doctor appointments or if best a movie. I had been sick for a really long time before finding the right team of doctors. It takes a long time at a snail pace to get better. In the past few months; I am saying yes more than no, I can leave the house longer, and I started walking around the neighborhood. Each year to the next I am getting better. I have made the most improvement in the past 6 months. I have my life back in my eyes.
Watch 5 star documentary Under our Skin
http://www.hulu.com/watch/268761
Under our Skin 2: Emergence
http://www.underourskin.com/sequel/
Lyme Disease New Information - All your questions may be answered: Lyme is a bacterial infection contracted from the bite of a disease carrying tick. The illness is cause by the organism Borrelia Burgdorferi. This bacterium is known as a spirochete that is carried by a black-legged ticks and deer ticks. These ticks collect the bacteria when they bite diseased mice, deer, birds, etc. The first signs of Lyme Disease may develop within days of months.
Although Lyme disease can be transferred in many ways, ticks are a prime host for transfer to humans due to the amount of time they feed (typically for 1-3 days although infection can occur immediately). Tick feeding practices are also designed to counteract host immune responses. This gives the Lyme bacterium time to familiarize itself with the host's DNA and immune system; allowing it to travel within the bloodstream undetected.
The movie “Alien” or some other sci-fi movie comes to mind when reading what the spirochetes are capable of- keep reading!
The Lyme spirochete (Borrelia species) is a uniquely opportunistic bacterium with an unusual ability to self-preserve. It acts more like an exceptionally intelligent protozoan parasite than a common bacterium. It is highly motile, and can penetrate blood vessels easily. It uses the bloodstream to quickly find opportune sites to hide from immune responses and prefers to colonize in collagenous tissue such as the brain and central nervous system, joints, organs, etc....
Once initial infection occurs, the spirochete takes the opportunity to activate genes that will ensure its ability to survive and thrive within the new host. One way in which it does this is by altering the expression of surface proteins further confusing the host immune system. These surface proteins are what kick-starts the immune system into creating antibodies. Essentially, the host immune system can't keep up.
Once isolated within the brain it can divide and change many times into an undetectable strain that the peripheral immune system will simply ignore. The result is an infection that can quietly inhabit the brain and other tissues for years or decades. * This is why blood tests are unreliable. * If our immune system cannot detect the infection to create antibodies, or if the infection is in a non-active state, there is no way of finding a positive result in a blood sample. Therefore, it is especially difficult to find a positive test result in someone who is in late stage Lyme infection. However, Clinical diagnosis remains the most important way of determining if someone is infected with the Lyme spirochete. It is crucial once diagnosed with Lyme disease and treatment has begun, that treatment is not stopped prematurely. Relapses can be much more dangerous and difficult to eradicate than the initial treatment.
* Immediate treatment is important or the patient can become in the “Chronic Stage of Lyme Disease”. *
The division time and life cycle of Borrelia spirochetes is longer than typical bacteria, which is why standard treatments fail. The Lyme bacterium can become metabolically inactive for long periods of time making antibiotics ineffective as they can only kill bacteria when they divide. No antibiotic can kill a bacterium that is metabolically inactive and spirochetes are well known to have mastered this form of survival. Many naturally occurring simple bacteria, such as the bacteria that cause acne, successfully survive antibiotic treatment. Simultaneously killing all the surviving bacteria in late infection with short courses of antibiotics is impossible and may not even be possible with extended courses of antibiotics.
* In its basic form, the Lyme Spirochete is spiral shaped and can literally bore deep into tissues, hide, and colonize. When it senses "danger", such as an immune response or antibiotics, it has the ability to change its structural identity into two different forms to ensure survival. The L-form occurs when it discards its cell wall and integrated surface proteins. This form often evades the immune system and many antibiotic treatments, and is capable of intracellular infection. In some cases, it can trigger an auto-immune response which then attacks our own tissues.
The cystic form creates new challenges for the immune system which can be ineffective against all various defense mechanisms of this bacterium. It mimics good cells in the host body so it can remain invisible, similar to putting on a costume. This form is resistant to antibiotics, does not present antigens to the immune system, and can shift into a reproductive state while encysted. Quite simply, the Lyme spirochete is a survivor at all costs.
Once conditions improve, the Lyme bacterium can change back into the spirochete form and "re-infect" the host. It can change forms within 1 minute of expression and survive up to 10 months before reconversion. The preferred form of the Lyme spirochete is dependent on its physical surroundings and environmental cues. It can also survive both freezing and thawing and successfully infect the host 12 months of the year.
This unique ability to shift forms and hide from our natural immune responses and antibiotics makes it difficult, if not impossible, for some to achieve full recovery. This is why relapse rates are so high in Lyme patients. It also explains why some people do not show symptoms right away, and may not show symptoms for weeks, months, or years after the initial infection. The Lyme spirochete is a highly evolved pathogen with many mechanisms of evasion and survival. Believing this disease can be easily eradicated and cured is arrogant, unfounded, and dangerous.
Definition of Chronic Lyme Disease: Chronic or persistent Lyme disease occurs if a patient who is treated with antibiotic therapy for the disease continues to experience symptoms. Doctors treat cases on an individual basis, using patient’s specific symptoms, medical history, and the latest research to guide the treatment.
TESTING FOR LYME DISEASE:
Brand New Test! Advanced Laboratory Services has developed a revolutionary new blood test Poly Borrelia Culture Test for the detection of Borrelia spirochetes that clearly will change how Lyme Disease is diagnosed and treated. Blood is collected from patients and transported to ALS at room temperature by overnight express. Specimens are immediately placed into culture media under proprietary conditions, and after one to two weeks it is tested by darkfield microscopy, polyclonal and monoclonal immunostaining, and by multivalent nested PCR (this nested technique is tough to do, but can detect femtomoles of DNA!). If Borrelia are seen then, a final report of a positive result is generated and sent to the practitioner. If no Borrelia are seen at this time, then the sample is placed into Long Term Culture that is looked at once, at two months, and a final report is generated then. Selected positives are sent out for DNA sequencing.
The test most doctors are doing and is not very accurate is called the Elisa Test. The “Western Blot Test” is much better than the Elisa Test; tell your doctor you want the Western Blot instead. The western blot use electricity to separate proteins called antigens into bands. The read-out looks like a bar code. The lab compares the pattern produced by running the test with your blood to a template pattern representing knokwn cases of Lyme disease. If your blot has bands in the right places, and the right number of bands, it is positive. The CDC requires 5 out of 10 bands for a positive test result. However, because some bands on the Western blot are more significant than others your doctor may decide you have Lyme disease even if your Western blot does not have the number of bands or specific bands recommended by the CDC. Different laboratories use different methods are criteria for interpreting the test, so you can have a positive test result from one lab and a negative test result from another. * In a nut shell the Poly Borrelia Culture Test is the best test so far to date. Make sure you have not taken antibiotics 4 -8 weeks prior to testing.
LYME DISEASE PREVENTION
AVOID TICK HABITAT - Ticks tend to be near the ground, grasses, bushes, and fallen logs. High risk – gathering firewood, leaning against tree trunks, playing in leaves, hiking in grassy fields instead of on groomed trail.
DRESS DEFENSIVELY – Wear shoes, socks, long pants, and long sleeves. Tie back long hair and wear a hat. Light colored clothing helps you spot ticks before they cause trouble. You can purchase clothing that has been pre-treated with the repellent permethrin at outdoor recreational stores. (Protection lasts through 70 washings). Or you can purchase permethrin and spray clothing yourself. (Protection lasts 5-6 washings). Be sure to treat both the inside and outside of the clothes. Spraying footwear with permethrin will prevent ticks from crawling up your shoes!
USE REPELLANT ON EXPOSE SKIN- Studies show that repellents with DEET picaridin or lemon eucalyptus oil are the most effective.
CHECK FOR TICKS – When outdoors, periodically inspect your clothing and skin for ticks. Brush off those that aren’t attached and remove any that are there.
SHOWER – Once home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect yourself. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places, including groin, armpits, back of knees, belly button, and scalp. Parents should check their children.
HOT DRYER – Running your clothes in a hot dryer for 10 minutes before you wash them will kill any ticks that may be there.
CHECK AND PROTECT YOUR PETS Ticks can infect dogs and cats too. Also their fur can act like a tick magnet, carrying ticks inside your home. Consult with your veterinarian about tick-protection for your pets.
IF you see a tick – pull with tweezers directly out – do not twist. Put in a zip lock bag with a blade of grass and wet cotton ball. Bring to your vet or doctor immediately. Ask doctor for a Lyme disease test. If the doctor does not take you seriously find a Lyme literate doctor in your area. If treated right away, the doctor may give you 2 weeks of antibiotics. Ask for 4 weeks of antibiotics to make sure you got everything.
First signs of Lyme Disease:
• Red, expanding bull’s eye rash at the site of the tick
• Fatigue, chills, and general feeling of illness that longer than a week
• All-over itching
• Headache
• Feeling dizzy or faint
• Muscle or joint pain
• Neck stiffness
• Swollen lymph nodes
My medical report that is condensed is about 30 pages. Email me at renee.avis2@yahoo.com if you have lyme disease and would like to view it or have questions.
A LOOK AT THE PAST YEARS WITH PROGRESSION OF TREATMENT
JANUARY - MAY 2011- FIRST FEW MONTHS BEFORE BEING DIAGNOSED
Living in Pajamas and can’t get out of bed -
So fatigued feel as if you had a horrible 24 hour flu…. but it doesn’t go away.
So tired I can barely take a shower- Fatigued and Exhaustion
Low grade fevers
Night sweats- changing pajamas 2- 3 x at night (no its not hormonal)
Problems with hearing- feeling as if I am in dark cave.
Hearing a high pitch constant ringing
Problems with seeing visually,white spots everywhere, trails, & major sensitivity with light
Can not process information while talking to someone AND Can’t process information with reading.
They call this cognitive impairment or Lyme Fog , I call it “scared sh__less"
Extreme pain in my joints and muscles
Bottom of my soles hurt, it hurts to walk on my feet
AND deep cracking like bones breaking the spirochetes have cross the cell membrane & into the ligaments,tendons, and muscles
Sleep disturbances - can not go to sleep at all, I started taking Ambien
Need Surgery for Ruptured L5 Disc and Ovarian Cysts Surgery - but they don’t recommend it since I have a virus in my system.
JUNE - DECEMBER 2011 -First 6 Months Treatment with Oral Antibiotics
After 20 Doctors and Many Blood Work Tests Found:
Mychoplasma Pneumoniae AB High
Human Trans Growth Fact Beta 1 High
41 Band IGG Reactivie
Stool Test Parasites Positive
Lyme Disease - Positive
Babesia Ducan - Positive
Babesia Fish - Positive
Bartonella Henselae - Positive
We drove once every 3 months to see a Lyme Specialist who was 4 hours away. The doctor said some people only get Lyme Disease when bit by the deer tick, and some people get a co-infection, however, I got 6 co- infections. Each of them need to be treated separately.
He plans to treat my co-infections first and then treat the lyme disease
I was in so much pain to be in the car for 4 hours, I would get my low fevers, body aches, I would lay back and wish it was over.
We would have to get a hotel because I was in too much pain to drive back, and look for a place that did massage to get swelling down.
Doctors bombarded me with so much medicine and herbal supplements at one time that my body went hay wire
I now need to get blood work once a month to check how my liver and kidneys were from all the medications.
I had to go to the Emergency 2 times due to allergic reaction to medications.
Medications were working - some of my neurological symptoms got better, I could read and understand, and the white floaters were gone visually
I was still in my pajamas - so fatigued, felt like horrible flu, and in pain
JANUARY - JUNE 2012
Started IV antibiotics - I has so much nausea from the babesia and oral antibiotics, I could not get any medicine down
First few months was extremely stressful- we could not find a home care nurse that was good. She would rip off my skin changing the bandaids
Ugo had to learn how to do my morning and nightly infusions
I was overwhelmed with the Oral Medications, Supplement Medications, IV Medications, Constant Blood Work
Lyme Doctor, Pain Doctor, MRI, Cat Scans, Nurses, Pain Management Team for My Lyme and Back Pain
The IV antibiotics made me nauseous, weak, headaches and flu symptoms seemed to be even worse. I was in bad shape getting sicker
JULY - DECEMBER 2012
I hit a plateau and did not seem I was getting better: the drive was so hard on me, and I could the Lyme Doctor could not meet more often.
We researched another Lyme Specialist and started seeing her - she’s now in Newport Beach
She said that you have to switch the IV antibiotics every 3 months and my other doctor never did, she said the Spirochetes change form, and hide from the antibiotics.- you have to be smart and change the antibiotics so they can not hide from it or mutate.
She was really concentrating on antibiotics, probiotics, vitamins, supplements, nutrition,
I was starting to be able to shower, dress and leave the house a few times a week for an 1 to 2 hours.
I still could not do chores like laundry, dishes, cooking, grocery shopping. I was finding the more I did the more I relapsed. I had to find the balance.
JANUARY - JUNE 2013
I stopped antibiotics for 2 months so I could do a brand new test called: Poly Borrelia Culture Test: It can actually see the spirochetes in your blood. It is still not recognized by insurances, because insurances do not want to pay for the expensive treatments that lyme disease causes. In this test they draw your blood and spin in (culture it). Sometimes it can take 2 -4 months to culture it and see your spirochetes if you have any. Within 10 days my blood was saturated with spirochetes. After an entire year of doing IV antibiotics and 6 months of oral antibiotics - my blood was saturated with spirochetes. It meant I had to continue IV antibiotics and being even more aggressive with my treatment.
I also got a government approved Cardiopulmonary Exercise Test -It was a 2 day test where they hook up patches to my heart and head and ride a stationary bike. It concluded that a simple task exacerbates my oxygen levels so much that the anaerobic threshold was showing a significant metabolic impairment. The tester basically said for me to shower and get dress I use so much oxygen due to my illness it is like running someone who just ran a marathon.
I was no longer scared I was tired. I could not believe that the spirochetes were still in me after a year and half of treatment. I thought I would be 90% better by now. I feel horrible.
I was tired of all the people pocking needles into me, I was tired of my skin being ripped off once a week from the picc line, I was tired of the nightmares I had over and over that someone was hanging on my Picc line and blood would flood out, I was tired of waiting rooms at the doctors offices. I was tired of all the time I spent on the phone dealing with doctors, pharmacies, insurances, appointments.
I was angry as well as depressed. Why me? Why did this happen to me? Everyone is so happy living their lives, and I am in a cave watching the world go by. I am not well enough to go live life, so I hide in my cave and wait it out hoping the next day may be better. The pain is a 10 high even the best medications does not touch the pain. The pain moves from one joint to another and is like a migraine where you cannot think of anything else. I am lucky if I accomplish more than 2 things a day. I am useless. I feel useless. I have no purpose in this world any more. I am not sure I can make it.
JULY - DECEMBER 2013
This year I switched and found a great team of doctors to work with
Lyme Specialist, Acupuncturist, & Massage Therapist NEW: Neurosurgeon & Pain Specialist, Oncologist, Endocrinologist, Urgent Care Physician, Cardiologist, Orthopedic Surgeon,
I definitely am having better days where my joints are swollen every morning, but the more I do the more I relapse.
I am depending on Massages and Acupunture do get through the weeks, the pain is still really high. I can barely walk to my car without being in pain.
The pain has kept me from seeing all my friends. I cancel everything cause I am in pain. I am lonely but in too much pain to see friends. I have cabin fever, but I don’t want to leave the house. I am lonely and sad.
JANUARY - JUNE 2014
Lyme Doctor is adding an infusion that targets the immune system.
She said if the immune system starts to work, it will get the inflammation down and that in turn will help with the pain and fatigue.
The infusions make me really sick - nausea, committing, headaches, and swelling.
She agreed this year I can finally get my Ovarian Cyst Surgery and my L5 Disc Fusion Surgery. She thinks now I am past the red flag where I will be okay during surgery and heal.
My blood work is better however the Cardio Reaction blood work (for the heart), and Sed rate (inflammation) are at high risk and she is very concerned
May I don’t have much of a choice, the Oncologist needs to do Ovarian cysts surgery- there are many and quite large.
JULY - DECEMBER 2015
All Summer interviewing Orthopedic surgeon & getting new X-rays, & MRI’s for L5 Disc Fusion
September L5 Fusion Surgery ; Surgeon goes through the front with a Vascular Surgeon- take out my disc which was shredded and put spacers in and fused it together
All This fall I did Physical Therapy and saw all my doctors
I am relapsing with my back a lot; trying to find the balance- but the first time I can stand up longer than 10 mins. I can now walk for more than 5 minutes without being in pain.
My lyme symptoms are getting better. I have more better days then worse days. I still rely on the acupuncturist and massage therapist to get me moving and less inflamed.
I still had to cancel with friends due to lyme flare ups, but I am able to do more by myself some days like drive myself to a close doctor appointment, or an errand, or even cook once a week.
JANUARY - JUNE 2015
I had a relapse with my back for 6 weeks. It was frustrating, but I am learning to be patient. My lyme causes the body not to heal quickly and to be in constant inflammation.
My SED rate Inflammation blood work should be 0 -20 - mine is 64. However, my other blood work I get once a month is getting better and better.
Although I still am getting weekly body work to help my joints and pain, I am can do about 4 things a day now which is so much better.
I had to go back to an ENT - I have ringing in my ear, and it is hard to hear. Lyme did this in the beginning, or it could be related to my TMJ..
I am starting to be able to be a little more social with friends that raise my spirits.
Lyme Doctor have me do a new test this month - Cheek Swab test that is sent to genetic testing laboratory to determine your unique drug processing genetic characteristics. It can help your physician improve effectiveness of medicines you take, reduce negative side effects, prevents serious drug reactions, avoid buying medicines that won’t work.
My infusions are better, they slowed it down, so now it is 3 hours but I only have some pain and swelling. I don’t have headaches, nausea, and vomiting any longer.
I am going to continue physical therapy for my back. I am really behind with what I can do because of my relapses and inflammation.
JULY - DECEMBER 2015
Work with the USC Pain Specialist to start using less pain medication.
Try to find a sleep clinic and get help getting sleep so my body can heal. Most lyme patients can not sleep due to the disease because it attacks the nervous system.
Continue doing physical therapy. If my back gets better, I can exercise and get oxygen & circulation in my body, which the spirochetes do not like. They cannot thrive in an oxygenated environment.
Continue doing my infusions for my auto immune system which will help the pain and fatigue.
My Lyme Doctor plan was to have me do another Picc Line Antibiotic Infusions for 3 months. It will be $16,800, so I will ask a lot of questions at my next appointment.
Due to all the co-infections and how complicated it is to treat Lyme Disease; it has been a snail crawl to get better. It has been almost 4 1/2 years since I first was bed ridden.
No one should have to ever endure this amount of pain.
- EDUCATION IS EVERYTHING -
The United States are getting more and more populated with lyme disease. It is now 80 countries world wide. It is not just for hikers any more,
The ticks are not just spreading it with deers. They are spreading the disease with birds, squirrels, mosquitos, mice, and pets.
Google and research Lyme Disease so you can look for symptoms with your family and friends.
Award winning Documentary http://www.underourskin.com/#home-emergence
UPDATE FROM RENEE – 9/18/14 - PRIOR TO IMPORTANT BACK SURGERY
Several months ago, I had a blod clot in my IV line. It is extremely dangerous, so I went to the ER. They pulled out my “PIC” IV line (which was connected into my heart) since I had been doing IV medications for over 2 1/2 years. My Lyme specialist switched me over to strong oral antibiotics and the nurse comes to my house to give me a subcutaneous drip of medicine to help my immune system. The needles and medicine hurt as it goes in, but it is not daily. After 2 1/2 years I can now take showers and swim in a pool. I feel so free. I will probably have to do this for another full year.
Meanwhile I will need to switch my antibiotics every 3 months so the spirochetes in my blood will not get used to it.
My blood work needs to improve. My Lyme specialist says the infusions will help my immune system to kick in and work, and my inflammation, fatigue, pain, memory fog, and other symptoms will improve. She had a plan in mind. She said to just stay strong and keep moving forward.
I believe that surgery should be the very last option after trying Eastern and Western medicine . Having a sports massage background, I research everything before having surgery. However, a few months ago, my oncologist had to remove several cysts that got to an alarming size. On September 24, I will have my L5 disc that collapsed years ago fused together. I had several procedures performed that indicate it needs to be done. (the pain from Renee’s L5 back problems have complicated her pain management and ability to improve her overall health)
I move between having a positive mind and feeling defeated. I get exhausted by doing the littlest of things. The weeks are like roller coasters. One day I feel like I am doing okay, and the next I feel like someone pulled the rug from under me. It’s an effort to even get dressed.
Thankfully, I am better than a few years ago and am happy for the IV medications doing such a great job. It amazes me how far I have to go to have a “normal day” or a “normal week”. I just have to hang in there, and keep taking each day as it comes.
Dr B said the Lyme inflammation is attacking my heart. The EKG and echo is okay but she is very concerned. I have to add a bunch of supplements. She said I have to let the surgeon know my labs. She said after I recover from back surgery that she wants me to get an IV again and do hard core IV antibiotics for 2 to 3 weeks to bombard the spirochetes.
My husband Ugo and I were at Cedars earlier this month. We saw the internist and vascular surgeon.
They are concerned about the blood work that showed my heart inflamed. They did more blood work, took an X-ray, then injected a serum into my veins that effected my heart and stressed it while I walked on treadmill. I felt nauseous , dizzy, and had a massive headache.
They took images of my heart for half hour while dye was in there. Good results came back…I was cleared for having back surgery. Recovery from back surgery for a Lyme patient is expected to take significantly longer than normal because of the weakened immune system.
-Renee
July 7, 2014
Today, the list of symptoms has shorten by half. However, the fatigue and pain is pretty horrible. On our 10 year wedding celebration last month-
I could barely make it through an hour ceremony. It was so good to see friends I had not seen in months. I put on a brave happy face, but inside I was in bad shape.
All my lyme symptoms had flared up, and I had so much fatigue and pain. I have a few bad days like that a week, where I don’t want to get out of bed.
Imagine the worse flu you have. You want to crawl in a bawl and sleep it off. I could not even go to dinner after the wedding ceremony with friends who some drove a long distance to come to it. I went home straight to bed.
It is a roller coaster. My recent blood work is not good. I had to see a cardiologist because the inflammation was showing it has even started to affect my heart.
The cardiologist is keeping an eye on me. The spirochetes have dug there way into my tendons and ligaments and they ache all the time.
To put it terms of understanding - it is a combination of having the fatigue of a severe flu, with arthritis in every joint, and nerve pain.
It affects my sleep, bladder, the understanding of simple things like directions and numbers. The list goes on.
I may get together with a friend once a week but it is a very quick lunch or movie- but I have to rest the entire day to prepare for something easy like that.
In a nutshell I still have a ways to go. I am getting blood work every few weeks and seeing the lyme specialist once a month.
There is a clinic in northern california called Gordon Medical in Santa Rosa with a whole team of doctors that I may look into. I don’t think we can afford it, and I am not sure I can even fly back and forth with the pain and fatigue. We will see.
The lyme affects different parts of my body’s systems so I see a Lyme Specialist, A Pain Specialist, An Oncologist, An Endocrinologist, A Cardiologist, A Orthopedic Specialist, My nurse and healers. It is a lot of going to appointments and paperwork and a full time job trying to get better and manage the pain and fatigue.
It is one day at a time for sure while staying on top of it all.
After 6 long, hard years... My blood work seems clear of the spirochetes/Lyme. It was tested at John Hopkins Hospital on the East Coast.
My Doctors said my blood work is still showing my inflammation is more than 3 x’s what it should be on three different tests. They do not know what is causing the inflammation. It could be that the Lyme did a lot of damage to my system.
It’s a vicious circle of my inflammation causes pain & then the pain causes inflammation. All this inflammation can be causing my chronic fatigue & joint pain.
To get the inflammation down, the doctors are doing a process of elimination.
1) My blood work and photo of my blood shows that I have Candida, so I am being treated for that. Taking antibiotics to treat the Lyme for many years can turn beneficial yeast into a harmful fungus.
2) The Dr. is also pulling toxins out with compound pharmacy suppository, which may help the inflammation.
3) Building up my immune system with high-grade supplements & B12 shots.
4) My blood work shows that I am borderline anemic, so taking a strong Iron supplement.
5) Continue to do no sugar – sugar can cause inflammation.
6) Getting my Back pain down may help as well. I am doing an epidural for my low back Dec 22.
7) Continue to go down on my Pain med. Sometimes if you are on pain meds too long; it can have the reverse effect. However, it is a slow process. It may take about a year. The problem also is I am in so much pain (8 -10 daily) because of the inflammation. So my pain is high, but I am taking more than half less of the pain med. It has been a rough year for those reasons.
8) Finally, I was tested, and I have Fibromyalgia, which I got most likely because of the Lyme. So I am monitoring that.
For anyone who has Lyme, getting the right doctor who specializes in Lyme is recommended. It may take a few consultations from different doctors to find a good fit. They must know the most recent ways/medicines to combat the spirochetes. If you just got bit, then maybe take an oral antibiotics for 1 -2 months. They may suggest 2-3 weeks. Ignore that, and make sure you kill them right off the bat.
For those who are really sick- IV antibiotics are the best. Please see your doctor for the right amount. This is the cocktail that killed my spirochetes. It is latest research. It is a cocktail of 4 antibiotics which kills the spirochetes that lay dormant.
1) IV Minocycline 2 x a day for 5 days a week for 1 month
2) IV Doxycline 2 x’s a day for 5 days a week for 1 month
3) IV Dacptomycin (cubic n) 1 x a day for 14 days in a row.
4) Claforan (sanofi) is subcutaneous once every 4 days for 15 times
Do not give up hope if you have Lyme, especially Chronic Lyme. It is a scary illness to have. However, there are new treatments out there. Lyme Disease can turn into Alzheimer’s, Parkinson’s, and ALS (Lou Gehrigs Disease), so make sure you take the treatment seriously. * You must be proactive with the doctors and your treatment.*
March 25, 2017 - MEDICAL UPDATE (from Renee):
Hi, I have been asked to do an update by several people.
It is hard to sum it all up, but I will try.
1) I just saw my Lyme Disease Specialist. I am doing better than last year for sure.
The IV therapy that I did last Spring definitely helped. We sent my blood work to John Hoptkins Hospital on the East Coast, and they think
that the lyme spirochetes are no longer in my blood. This is great news, because it means that I am cleared for Lyme Disease.
We will do a recheck with John Hopkins at a later point to double check with my blood work.
2) I get extensive blood work done every 3 weeks so we can monitor my overall health and chronic issues. I have some on going damage that was done to my body with the past 5 years of having the spirochetes in my blood.
My immune system is not functioning, and when that happens; other diseases and infections can occur.
My Lyme Specialist is also an auto immune specialist.
We are also working on Candida and Inflammation which are causing some problems.
3) My Pain symptoms seem to similar to Fibromyalgia- so I will find a specialist and get tested for that. My Lyme specialist said that many of her patients have gotten Fibromyalgia
since their immune systems were not working. Fibromyalgia is a disorder which can begin after a trauma and is characterized by widespread musculoskeletal
pain accompanied by fatigue, sleep, and memory. Fibromyalgia amplifies sensations by affecting the way the brain processes pain signals.
4) I have also been working with my Pain Specialist. He is the Chief of Neurology at USC.
I take medicine for Pain, Nerves, and Muscle Pain.
I see him every 3 months and we are going down on my meds little by little. It is tricky so we have to do it at a slow pace.
5) Besides the doctor appointments- I am still doing 3 Pain management Sessions a week (Massage, Chiropractic, or Acupuncture).
This helps me function on a day to day basis. It breaks up my frozen muscles and ligaments and gets blood flowing and the pain down.
6) I have a great team of doctors and I am proactive with my care.
I would say that the Pain and Fatigue is my worst 2 symptoms right now. It is not just a little bit, it is a huge factor.
I feel about 60 percent compared to how I felt before I got sick. However, I know it is so much better then how I have been doing the past 5 years.
I could not have gotten better without the IV Therapy. Since that was all out of pocket, thank you so much for donating to the medical fund.
I no longer need to do IV therapy, so we no longer need to do fundraising. Ugo is able to handle all the other out of pocket. Thank you so much for
all that you have given me financial and emotional support through these past years.
I do not even have words to say how much I appreciate the kindness that has been given to me from all of you.
If you would like to reach out, please email me or text. I do not check Facebook.
Love you,
Renee
Some of you want to know in specifics what I am taking.
Here is a list:
Meds:
B12 Shots every 3 days - Fatigue
Oxygen Tank at night - Auto Immune
Methodone - Pain
Flexeril - Muscle Relaxer
Gabapentin - Nerve Pain
Oantoprrazole Protenix - Acid Reflux for the pain med
Serquil - To Sleep
Armour - Thyroid
Supplements
Biotagen - Probiotic
Ultra Flora - Probiotic
Co Q10 - Cardiovascular
Inflammablock - Inflammation and Pain
Vitamin D - Immune and Muscle Pain
Live 52 - Helps Liver Cells
SPM Active - Immune System
Borage- - Inflammation
Ultra GI - Digestive Disorders
Melatonin - Sleep
L- Theanine - Sleep
3 P- Powder - Dietary Supplement
CBD vapor - Pain
Feb 7, 2016
MEDICAL UPDATE: I am in the middle of the 60 day treatment - a John Hoptkins study. It is 3 antibiotics at once and one is through the IV.
The side effects are I am exhausted and in pain. The pain feels like all my old injuries that have come to the surface and feels pain in all the joints (ankles, knees, hips, back, & neck).
The muscles are all so tight and feel like pressure all the time. For now I am getting some type of pain management to help make it through the day.
Weekly Lymph drainage & Neuromuscular Massage 3 - 4 times, Physical Therapy 2 x week, Chiropractic 1 week and Acupuncture 1 a week. It is a lot, but if I did not do
them; I would probably tap out from this treatment. It is intense and causing my body to go haywire.
The Picc line has had all sorts of problems. First the line was stuck and it would not letting the medicine inside. Then the line was leaking blood. I had to go to the emergency room a week ago, because of complications with the treatment. The last time I was on my Picc line, I could barely leave the house. This time I can drive myself to appointments near by, and I can see my friends for a few hours which helps emotionally and spiritually. It literally raises my spirit.
The reason I was a candidate for this type of harsh treatment is that the spirochetes and the other parasites have attacked my immune system as well as my other systems - Heart, Bladder, Ovarian Cysts, and have Arthritis, and Fibromaylgia. The spirochetes can get into the spinal fluid, ligaments, tendons, and cause damage to the organs. I am seeing all the specialist weekly and have routine blood work to make sure the medicines I am taking are doing more good than bad. The team of doctors I have are specialists and I am so happy that they are all on the same page. All of them are Western medicine driven but are open to eastern philosophies and pain management. There are so many new ideas how to treat lyme disease, and this has had the best results to actually kill the spirochetes in every form they are. They can hide, change form, adapt to antibiotics, and thrive and multiple. This protocol has specific antibiotics mixed together, and are administered for 60 days every day.
In 3 weeks, once the IV treatment ends; I will wait one month and then re- test all my blood work to see if I have any Spirochetes left in my blood. There are tests where you can ac
Also they will look to see if the parasites that I got by the tick. are gone. BABESIA is caused by the Babesia microti and Babesia divergent parasites, both of which are members of the protozoan kingdom. They can affect the red blood cells. BARTONELLA are intracellular parasites that generally show preference for erythrocytes and endothelial cells in humans.
Bartonella are bacteria that live primarily inside the lining of the blood vessels. * All those can be why I am so fatigued and have joint pain.
On a side note: I am getting a hysterectomy April 20th which takes 6 weeks to heal - for me maybe longer for me since my body has a hard time healing with this illness.
The lyme disease has not allowed my body to heal by itself and my cysts are quite large and are a concern.
I have thought long and hard about getting the hysterectomy. I have talked to many women who have had one, and my menstrual cycle is 2 weeks long and horrible, which makes me bored line anemic. The Oncologist wanted to do this so long ago. I have had 3 or 4 ovarian cysts surgeries due to endometriosis. Hopefully after getting this done my inflammation will calm down. Right now the blood work shows my inflammation is triple what it should be. That can be dangerous and cause problems with your heart and can cause strokes.
By having this surgery it should help, and if my body is not constantly in pain and inflamed maybe my immune system can get better.
I know this is all a lot for someone who just took herbs and one little pill for thyroid.
It is what it is. I just want to educate others to wear the right clothing while being near grass and to get tested right away if you have flu symptoms that don’t seem to go away.
If you get on antibiotics right away you will be okay and heal faster. The usually dose is 2 weeks of antibiotics but please request 2 months if you are diagnosed with LYME DISEASE.
However, if you have been sick for awhile- your treatment may be like mine. More and more people are getting sick with Lyme Disease. All my doctors and pain management workers are all telling me they have 3 or 4 patients with lyme and some are just as sick as me. More and more celebrities are getting sick with Lyme as well. Hopefully they will use their position to educate. So please read up on it, and watch the movie UNDER OUT SKIN if you have not already. Google it, and it’s on Netflix.
Children have better immune systems to fight it off but they also don’t know the language to describe when they are not well. So just listen and do your research.
All my love,
Renee
MY MEDICAL GOALS FOR 2015 and 2016
• I have hopefully 1 last intravenous antibiotic treatment that will be over 2 months long. It a brand new study consisting of 4 medications that pulses and blasts the spirochetes. One of the medications is obnoxiously expensive and my insurance has denied it even after an appeal by the doctor. This treatment is supposed to be really hard to go through, but my doctor is confident that the results will be worth it.
• Continue to work with the Chief of Neurology & Pain at USC. I need to slowly decrease all the pain medications I take, and hopefully eventually go off them. * Besides my recent back fusion, a lot of Lyme patients have an incredible amount of pain in their joints and muscles. Some would say it is similar to someone with severe arthritis, fibromyalgia, chronic fatigue, or systemic lupus.
• I also need to work with the Neurology Specialist for cognitive impairments. * The spirochete Borrelia burgdoreri can invade the brain and spinal cord. Once inside the central nervous system, the organism can invade the spinal nerves. I not only have a hard time recalling names but also moments in time. I may forgot an obvious name like Jack Nicolson to forgetting the name of someone in my family. I also can forget an entire conversation or something I did or did not do. It was a lot worse, but it is still alarming and scary.
• Begin to work with a Specialist at the USC Sleep Disorder Clinic to help with my insomnia.* Lyme disease interferes with the endocrine system as well as the thyroid functions. Neural targets that control thermogenesis - sleep, and mood can be affected by pro-inflammatory cytokines; which are released by activated macrophages and monocytes during infection. Without sleep, healing cannot occur. Most Lyme patients have to take sleep medications as well as a supplement such as melatonin.
• Continue working with my Cardiologist. * My blood test CRP (C-Reaction Protein) indicates there is inflammation near the heart. The blood report should be 0-3, and mine was at 6.82. The bacteria can enter the tissues of the heart, and infection can cause a 2nd or 3rd degree heart block. This is an alarming number, however my EKG was okay. I still need to do a stress test, and follow up with the cardiologist.
• Continue working with my Oncologist: In my 30’s I was diagnosed with severe endometriosis, which has caused infertility, pelvis pain, and large cysts to form on my ovaries. Lyme disease causes chronic inflammation and these symptoms tend to be 10 x ‘s worse. Throughout the year I have to do blood work and ultrasounds to monitor the size of the cysts. Unfortunately the specialist cannot determine if the cysts are cancerous tumors or just large cysts full of fluid unless they do surgery. After 3 surgeries related to this medical illness, my oncologist said my lyme disease is probably causing the cysts to be even more of a concern, and he recommends a hysterectomy as soon as my Lyme Specialist feels comfortable with it.
• Continue working with my pain management team. * At the moment I can not function or make it through the week without assistance from my pain management team (massage, acupuncture, sports chiropractor). The spirochetes got into my ligaments and tendons. The pain management helps decrease the inflammation around my joints, and help with the joint flexibility. They help the week and atrophied muscles while alleviating pain by pumping oxygen into the tissues. IN ADDITION TO MY PAIN MANAGEMENT TEAM - Every morning I have to massage hot rocks on all my joints to be able to walk in the morning. I then have to stretch for 20 minutes in the morning and at night to be able to move throughout the day. Sometimes I can stretch up to an hour at each time using tennis balls, and different tools. At night I take an Epsom salt bath and then use my tens unit with patches for 20 minutes. I also use my hydroculator moist heating packs for 30 minutes. I also do fire cupping on myself 1 - 2 times a week, and Ugo does my back 1 x a week. My goal is to be able to go through a week without relying on the pain management and lead a normal life without pain.
• To be able to drive more than 10 minutes by myself. * Due to my memory problems, and also certain times of the day I have to take medication; I am not able to drive far and Ugo has to drive me to all my medical appointments; because they are almost an hour away. It would be great to let him have a day off. Also I miss being able to drive to visit a friend who lives farther away then my town. Hopefully this will change the more I work with my neurologist.
• To be able to do chores by myself. * My community has a program where they send a volunteer to go get my groceries, and someone to come do laundry and clean the house. Along the way, I keep trying to do these tasks, but I end up in a lot of pain or I can’t get out of bed due to fatigue. I am trying to find a balance of not doing to much, but keep moving forward.
• After my final 2 month IV infusion – I need to do a long cleanse to clean out my body as well as my gut.. * It can take months to detox after harsh antibiotics. My Lyme Disease Specialist said with this medication combination and dose it is common to have a severe Harisch-Herxheimer Reaction (Herx). When fed high doses of antibiotics intravenously, symptoms exacerbate when injured or dead bacteria releases their endotoxins into the blood and tissue faster than the body can comfortably handle it. Usually I feel like I have the worst flu imaginable. I am extremely weak, fatigued, all my injuries throughout my life feel as though they happened all at once – incredible pain throughout the body, as well as low grade fever, chills, nausea and vomiting.
• Continue to heal and strengthen my back. * I ruptured my back and needed surgery, but I was not able to get it because of my Lyme disease. The surgeons did not think I would heal well due to all the inflammation that the disease causes. For almost 3 ½ years I was walking in a forward position due to pain. I was finally got my disc fusion, but my muscles are extremely weak and do not activate when they are suppose. There is a lot of compensating, and all the muscles throughout the body have to be retrained. This will take a lot of time. On top of that, Lyme causes inflammation, and I have had many relapses throughout the year. The Orthopedic surgeon can’t do some procedures he would like to speed up the healing process. But a steroid injection to the ligaments suppresses the immune system, and my immune system already does not function.
• Continue my subcutaneous IVIG Immunoglobin treatments. * This therapy is used with auto immune diseases and antibody deficiencies. My infusion takes 3 hours and is administered at 6 sites on my body. Each site swells up and burns during and after treatment. It causes nausea, headaches, and fatigue. The night of my infusion I can usually sleep 12 – 14 hours. This creates and builds an immune system to one that is not working. The dose and duration may change, but my specialist said I will need to do this for life.
Getting better has been more than a full time job. It is full of Blood work, X-Rays, MRI’s, Cat Scans, Ultrasounds, ER Episodes, Infusions, Prick, Prodded, Probed, Pain Management, Several different Pharmacies, Days where I can not get out of bed, Phone Calls, Insurance Paperwork, Nurses, and all day Doctor’s appointments.
You may be thinking why has the antibiotics some of those medical issues? Last year I could not go to an event without a wheelchair. Last year I had to constantly canceled plans with friends who wanted me to get out of the house. I mostly only left the house for doctor appointments or if best a movie. I had been sick for a really long time before finding the right team of doctors. It takes a long time at a snail pace to get better. In the past few months; I am saying yes more than no, I can leave the house longer, and I started walking around the neighborhood. Each year to the next I am getting better. I have made the most improvement in the past 6 months. I have my life back in my eyes.
Watch 5 star documentary Under our Skin
http://www.hulu.com/watch/268761
Under our Skin 2: Emergence
http://www.underourskin.com/sequel/
Lyme Disease New Information - All your questions may be answered: Lyme is a bacterial infection contracted from the bite of a disease carrying tick. The illness is cause by the organism Borrelia Burgdorferi. This bacterium is known as a spirochete that is carried by a black-legged ticks and deer ticks. These ticks collect the bacteria when they bite diseased mice, deer, birds, etc. The first signs of Lyme Disease may develop within days of months.
Although Lyme disease can be transferred in many ways, ticks are a prime host for transfer to humans due to the amount of time they feed (typically for 1-3 days although infection can occur immediately). Tick feeding practices are also designed to counteract host immune responses. This gives the Lyme bacterium time to familiarize itself with the host's DNA and immune system; allowing it to travel within the bloodstream undetected.
The movie “Alien” or some other sci-fi movie comes to mind when reading what the spirochetes are capable of- keep reading!
The Lyme spirochete (Borrelia species) is a uniquely opportunistic bacterium with an unusual ability to self-preserve. It acts more like an exceptionally intelligent protozoan parasite than a common bacterium. It is highly motile, and can penetrate blood vessels easily. It uses the bloodstream to quickly find opportune sites to hide from immune responses and prefers to colonize in collagenous tissue such as the brain and central nervous system, joints, organs, etc....
Once initial infection occurs, the spirochete takes the opportunity to activate genes that will ensure its ability to survive and thrive within the new host. One way in which it does this is by altering the expression of surface proteins further confusing the host immune system. These surface proteins are what kick-starts the immune system into creating antibodies. Essentially, the host immune system can't keep up.
Once isolated within the brain it can divide and change many times into an undetectable strain that the peripheral immune system will simply ignore. The result is an infection that can quietly inhabit the brain and other tissues for years or decades. * This is why blood tests are unreliable. * If our immune system cannot detect the infection to create antibodies, or if the infection is in a non-active state, there is no way of finding a positive result in a blood sample. Therefore, it is especially difficult to find a positive test result in someone who is in late stage Lyme infection. However, Clinical diagnosis remains the most important way of determining if someone is infected with the Lyme spirochete. It is crucial once diagnosed with Lyme disease and treatment has begun, that treatment is not stopped prematurely. Relapses can be much more dangerous and difficult to eradicate than the initial treatment.
* Immediate treatment is important or the patient can become in the “Chronic Stage of Lyme Disease”. *
The division time and life cycle of Borrelia spirochetes is longer than typical bacteria, which is why standard treatments fail. The Lyme bacterium can become metabolically inactive for long periods of time making antibiotics ineffective as they can only kill bacteria when they divide. No antibiotic can kill a bacterium that is metabolically inactive and spirochetes are well known to have mastered this form of survival. Many naturally occurring simple bacteria, such as the bacteria that cause acne, successfully survive antibiotic treatment. Simultaneously killing all the surviving bacteria in late infection with short courses of antibiotics is impossible and may not even be possible with extended courses of antibiotics.
* In its basic form, the Lyme Spirochete is spiral shaped and can literally bore deep into tissues, hide, and colonize. When it senses "danger", such as an immune response or antibiotics, it has the ability to change its structural identity into two different forms to ensure survival. The L-form occurs when it discards its cell wall and integrated surface proteins. This form often evades the immune system and many antibiotic treatments, and is capable of intracellular infection. In some cases, it can trigger an auto-immune response which then attacks our own tissues.
The cystic form creates new challenges for the immune system which can be ineffective against all various defense mechanisms of this bacterium. It mimics good cells in the host body so it can remain invisible, similar to putting on a costume. This form is resistant to antibiotics, does not present antigens to the immune system, and can shift into a reproductive state while encysted. Quite simply, the Lyme spirochete is a survivor at all costs.
Once conditions improve, the Lyme bacterium can change back into the spirochete form and "re-infect" the host. It can change forms within 1 minute of expression and survive up to 10 months before reconversion. The preferred form of the Lyme spirochete is dependent on its physical surroundings and environmental cues. It can also survive both freezing and thawing and successfully infect the host 12 months of the year.
This unique ability to shift forms and hide from our natural immune responses and antibiotics makes it difficult, if not impossible, for some to achieve full recovery. This is why relapse rates are so high in Lyme patients. It also explains why some people do not show symptoms right away, and may not show symptoms for weeks, months, or years after the initial infection. The Lyme spirochete is a highly evolved pathogen with many mechanisms of evasion and survival. Believing this disease can be easily eradicated and cured is arrogant, unfounded, and dangerous.
Definition of Chronic Lyme Disease: Chronic or persistent Lyme disease occurs if a patient who is treated with antibiotic therapy for the disease continues to experience symptoms. Doctors treat cases on an individual basis, using patient’s specific symptoms, medical history, and the latest research to guide the treatment.
TESTING FOR LYME DISEASE:
Brand New Test! Advanced Laboratory Services has developed a revolutionary new blood test Poly Borrelia Culture Test for the detection of Borrelia spirochetes that clearly will change how Lyme Disease is diagnosed and treated. Blood is collected from patients and transported to ALS at room temperature by overnight express. Specimens are immediately placed into culture media under proprietary conditions, and after one to two weeks it is tested by darkfield microscopy, polyclonal and monoclonal immunostaining, and by multivalent nested PCR (this nested technique is tough to do, but can detect femtomoles of DNA!). If Borrelia are seen then, a final report of a positive result is generated and sent to the practitioner. If no Borrelia are seen at this time, then the sample is placed into Long Term Culture that is looked at once, at two months, and a final report is generated then. Selected positives are sent out for DNA sequencing.
The test most doctors are doing and is not very accurate is called the Elisa Test. The “Western Blot Test” is much better than the Elisa Test; tell your doctor you want the Western Blot instead. The western blot use electricity to separate proteins called antigens into bands. The read-out looks like a bar code. The lab compares the pattern produced by running the test with your blood to a template pattern representing knokwn cases of Lyme disease. If your blot has bands in the right places, and the right number of bands, it is positive. The CDC requires 5 out of 10 bands for a positive test result. However, because some bands on the Western blot are more significant than others your doctor may decide you have Lyme disease even if your Western blot does not have the number of bands or specific bands recommended by the CDC. Different laboratories use different methods are criteria for interpreting the test, so you can have a positive test result from one lab and a negative test result from another. * In a nut shell the Poly Borrelia Culture Test is the best test so far to date. Make sure you have not taken antibiotics 4 -8 weeks prior to testing.
LYME DISEASE PREVENTION
AVOID TICK HABITAT - Ticks tend to be near the ground, grasses, bushes, and fallen logs. High risk – gathering firewood, leaning against tree trunks, playing in leaves, hiking in grassy fields instead of on groomed trail.
DRESS DEFENSIVELY – Wear shoes, socks, long pants, and long sleeves. Tie back long hair and wear a hat. Light colored clothing helps you spot ticks before they cause trouble. You can purchase clothing that has been pre-treated with the repellent permethrin at outdoor recreational stores. (Protection lasts through 70 washings). Or you can purchase permethrin and spray clothing yourself. (Protection lasts 5-6 washings). Be sure to treat both the inside and outside of the clothes. Spraying footwear with permethrin will prevent ticks from crawling up your shoes!
USE REPELLANT ON EXPOSE SKIN- Studies show that repellents with DEET picaridin or lemon eucalyptus oil are the most effective.
CHECK FOR TICKS – When outdoors, periodically inspect your clothing and skin for ticks. Brush off those that aren’t attached and remove any that are there.
SHOWER – Once home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect yourself. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places, including groin, armpits, back of knees, belly button, and scalp. Parents should check their children.
HOT DRYER – Running your clothes in a hot dryer for 10 minutes before you wash them will kill any ticks that may be there.
CHECK AND PROTECT YOUR PETS Ticks can infect dogs and cats too. Also their fur can act like a tick magnet, carrying ticks inside your home. Consult with your veterinarian about tick-protection for your pets.
IF you see a tick – pull with tweezers directly out – do not twist. Put in a zip lock bag with a blade of grass and wet cotton ball. Bring to your vet or doctor immediately. Ask doctor for a Lyme disease test. If the doctor does not take you seriously find a Lyme literate doctor in your area. If treated right away, the doctor may give you 2 weeks of antibiotics. Ask for 4 weeks of antibiotics to make sure you got everything.
First signs of Lyme Disease:
• Red, expanding bull’s eye rash at the site of the tick
• Fatigue, chills, and general feeling of illness that longer than a week
• All-over itching
• Headache
• Feeling dizzy or faint
• Muscle or joint pain
• Neck stiffness
• Swollen lymph nodes
My medical report that is condensed is about 30 pages. Email me at renee.avis2@yahoo.com if you have lyme disease and would like to view it or have questions.
A LOOK AT THE PAST YEARS WITH PROGRESSION OF TREATMENT
JANUARY - MAY 2011- FIRST FEW MONTHS BEFORE BEING DIAGNOSED
Living in Pajamas and can’t get out of bed -
So fatigued feel as if you had a horrible 24 hour flu…. but it doesn’t go away.
So tired I can barely take a shower- Fatigued and Exhaustion
Low grade fevers
Night sweats- changing pajamas 2- 3 x at night (no its not hormonal)
Problems with hearing- feeling as if I am in dark cave.
Hearing a high pitch constant ringing
Problems with seeing visually,white spots everywhere, trails, & major sensitivity with light
Can not process information while talking to someone AND Can’t process information with reading.
They call this cognitive impairment or Lyme Fog , I call it “scared sh__less"
Extreme pain in my joints and muscles
Bottom of my soles hurt, it hurts to walk on my feet
AND deep cracking like bones breaking the spirochetes have cross the cell membrane & into the ligaments,tendons, and muscles
Sleep disturbances - can not go to sleep at all, I started taking Ambien
Need Surgery for Ruptured L5 Disc and Ovarian Cysts Surgery - but they don’t recommend it since I have a virus in my system.
JUNE - DECEMBER 2011 -First 6 Months Treatment with Oral Antibiotics
After 20 Doctors and Many Blood Work Tests Found:
Mychoplasma Pneumoniae AB High
Human Trans Growth Fact Beta 1 High
41 Band IGG Reactivie
Stool Test Parasites Positive
Lyme Disease - Positive
Babesia Ducan - Positive
Babesia Fish - Positive
Bartonella Henselae - Positive
We drove once every 3 months to see a Lyme Specialist who was 4 hours away. The doctor said some people only get Lyme Disease when bit by the deer tick, and some people get a co-infection, however, I got 6 co- infections. Each of them need to be treated separately.
He plans to treat my co-infections first and then treat the lyme disease
I was in so much pain to be in the car for 4 hours, I would get my low fevers, body aches, I would lay back and wish it was over.
We would have to get a hotel because I was in too much pain to drive back, and look for a place that did massage to get swelling down.
Doctors bombarded me with so much medicine and herbal supplements at one time that my body went hay wire
I now need to get blood work once a month to check how my liver and kidneys were from all the medications.
I had to go to the Emergency 2 times due to allergic reaction to medications.
Medications were working - some of my neurological symptoms got better, I could read and understand, and the white floaters were gone visually
I was still in my pajamas - so fatigued, felt like horrible flu, and in pain
JANUARY - JUNE 2012
Started IV antibiotics - I has so much nausea from the babesia and oral antibiotics, I could not get any medicine down
First few months was extremely stressful- we could not find a home care nurse that was good. She would rip off my skin changing the bandaids
Ugo had to learn how to do my morning and nightly infusions
I was overwhelmed with the Oral Medications, Supplement Medications, IV Medications, Constant Blood Work
Lyme Doctor, Pain Doctor, MRI, Cat Scans, Nurses, Pain Management Team for My Lyme and Back Pain
The IV antibiotics made me nauseous, weak, headaches and flu symptoms seemed to be even worse. I was in bad shape getting sicker
JULY - DECEMBER 2012
I hit a plateau and did not seem I was getting better: the drive was so hard on me, and I could the Lyme Doctor could not meet more often.
We researched another Lyme Specialist and started seeing her - she’s now in Newport Beach
She said that you have to switch the IV antibiotics every 3 months and my other doctor never did, she said the Spirochetes change form, and hide from the antibiotics.- you have to be smart and change the antibiotics so they can not hide from it or mutate.
She was really concentrating on antibiotics, probiotics, vitamins, supplements, nutrition,
I was starting to be able to shower, dress and leave the house a few times a week for an 1 to 2 hours.
I still could not do chores like laundry, dishes, cooking, grocery shopping. I was finding the more I did the more I relapsed. I had to find the balance.
JANUARY - JUNE 2013
I stopped antibiotics for 2 months so I could do a brand new test called: Poly Borrelia Culture Test: It can actually see the spirochetes in your blood. It is still not recognized by insurances, because insurances do not want to pay for the expensive treatments that lyme disease causes. In this test they draw your blood and spin in (culture it). Sometimes it can take 2 -4 months to culture it and see your spirochetes if you have any. Within 10 days my blood was saturated with spirochetes. After an entire year of doing IV antibiotics and 6 months of oral antibiotics - my blood was saturated with spirochetes. It meant I had to continue IV antibiotics and being even more aggressive with my treatment.
I also got a government approved Cardiopulmonary Exercise Test -It was a 2 day test where they hook up patches to my heart and head and ride a stationary bike. It concluded that a simple task exacerbates my oxygen levels so much that the anaerobic threshold was showing a significant metabolic impairment. The tester basically said for me to shower and get dress I use so much oxygen due to my illness it is like running someone who just ran a marathon.
I was no longer scared I was tired. I could not believe that the spirochetes were still in me after a year and half of treatment. I thought I would be 90% better by now. I feel horrible.
I was tired of all the people pocking needles into me, I was tired of my skin being ripped off once a week from the picc line, I was tired of the nightmares I had over and over that someone was hanging on my Picc line and blood would flood out, I was tired of waiting rooms at the doctors offices. I was tired of all the time I spent on the phone dealing with doctors, pharmacies, insurances, appointments.
I was angry as well as depressed. Why me? Why did this happen to me? Everyone is so happy living their lives, and I am in a cave watching the world go by. I am not well enough to go live life, so I hide in my cave and wait it out hoping the next day may be better. The pain is a 10 high even the best medications does not touch the pain. The pain moves from one joint to another and is like a migraine where you cannot think of anything else. I am lucky if I accomplish more than 2 things a day. I am useless. I feel useless. I have no purpose in this world any more. I am not sure I can make it.
JULY - DECEMBER 2013
This year I switched and found a great team of doctors to work with
Lyme Specialist, Acupuncturist, & Massage Therapist NEW: Neurosurgeon & Pain Specialist, Oncologist, Endocrinologist, Urgent Care Physician, Cardiologist, Orthopedic Surgeon,
I definitely am having better days where my joints are swollen every morning, but the more I do the more I relapse.
I am depending on Massages and Acupunture do get through the weeks, the pain is still really high. I can barely walk to my car without being in pain.
The pain has kept me from seeing all my friends. I cancel everything cause I am in pain. I am lonely but in too much pain to see friends. I have cabin fever, but I don’t want to leave the house. I am lonely and sad.
JANUARY - JUNE 2014
Lyme Doctor is adding an infusion that targets the immune system.
She said if the immune system starts to work, it will get the inflammation down and that in turn will help with the pain and fatigue.
The infusions make me really sick - nausea, committing, headaches, and swelling.
She agreed this year I can finally get my Ovarian Cyst Surgery and my L5 Disc Fusion Surgery. She thinks now I am past the red flag where I will be okay during surgery and heal.
My blood work is better however the Cardio Reaction blood work (for the heart), and Sed rate (inflammation) are at high risk and she is very concerned
May I don’t have much of a choice, the Oncologist needs to do Ovarian cysts surgery- there are many and quite large.
JULY - DECEMBER 2015
All Summer interviewing Orthopedic surgeon & getting new X-rays, & MRI’s for L5 Disc Fusion
September L5 Fusion Surgery ; Surgeon goes through the front with a Vascular Surgeon- take out my disc which was shredded and put spacers in and fused it together
All This fall I did Physical Therapy and saw all my doctors
I am relapsing with my back a lot; trying to find the balance- but the first time I can stand up longer than 10 mins. I can now walk for more than 5 minutes without being in pain.
My lyme symptoms are getting better. I have more better days then worse days. I still rely on the acupuncturist and massage therapist to get me moving and less inflamed.
I still had to cancel with friends due to lyme flare ups, but I am able to do more by myself some days like drive myself to a close doctor appointment, or an errand, or even cook once a week.
JANUARY - JUNE 2015
I had a relapse with my back for 6 weeks. It was frustrating, but I am learning to be patient. My lyme causes the body not to heal quickly and to be in constant inflammation.
My SED rate Inflammation blood work should be 0 -20 - mine is 64. However, my other blood work I get once a month is getting better and better.
Although I still am getting weekly body work to help my joints and pain, I am can do about 4 things a day now which is so much better.
I had to go back to an ENT - I have ringing in my ear, and it is hard to hear. Lyme did this in the beginning, or it could be related to my TMJ..
I am starting to be able to be a little more social with friends that raise my spirits.
Lyme Doctor have me do a new test this month - Cheek Swab test that is sent to genetic testing laboratory to determine your unique drug processing genetic characteristics. It can help your physician improve effectiveness of medicines you take, reduce negative side effects, prevents serious drug reactions, avoid buying medicines that won’t work.
My infusions are better, they slowed it down, so now it is 3 hours but I only have some pain and swelling. I don’t have headaches, nausea, and vomiting any longer.
I am going to continue physical therapy for my back. I am really behind with what I can do because of my relapses and inflammation.
JULY - DECEMBER 2015
Work with the USC Pain Specialist to start using less pain medication.
Try to find a sleep clinic and get help getting sleep so my body can heal. Most lyme patients can not sleep due to the disease because it attacks the nervous system.
Continue doing physical therapy. If my back gets better, I can exercise and get oxygen & circulation in my body, which the spirochetes do not like. They cannot thrive in an oxygenated environment.
Continue doing my infusions for my auto immune system which will help the pain and fatigue.
My Lyme Doctor plan was to have me do another Picc Line Antibiotic Infusions for 3 months. It will be $16,800, so I will ask a lot of questions at my next appointment.
Due to all the co-infections and how complicated it is to treat Lyme Disease; it has been a snail crawl to get better. It has been almost 4 1/2 years since I first was bed ridden.
No one should have to ever endure this amount of pain.
- EDUCATION IS EVERYTHING -
The United States are getting more and more populated with lyme disease. It is now 80 countries world wide. It is not just for hikers any more,
The ticks are not just spreading it with deers. They are spreading the disease with birds, squirrels, mosquitos, mice, and pets.
Google and research Lyme Disease so you can look for symptoms with your family and friends.
Award winning Documentary http://www.underourskin.com/#home-emergence
UPDATE FROM RENEE – 9/18/14 - PRIOR TO IMPORTANT BACK SURGERY
Several months ago, I had a blod clot in my IV line. It is extremely dangerous, so I went to the ER. They pulled out my “PIC” IV line (which was connected into my heart) since I had been doing IV medications for over 2 1/2 years. My Lyme specialist switched me over to strong oral antibiotics and the nurse comes to my house to give me a subcutaneous drip of medicine to help my immune system. The needles and medicine hurt as it goes in, but it is not daily. After 2 1/2 years I can now take showers and swim in a pool. I feel so free. I will probably have to do this for another full year.
Meanwhile I will need to switch my antibiotics every 3 months so the spirochetes in my blood will not get used to it.
My blood work needs to improve. My Lyme specialist says the infusions will help my immune system to kick in and work, and my inflammation, fatigue, pain, memory fog, and other symptoms will improve. She had a plan in mind. She said to just stay strong and keep moving forward.
I believe that surgery should be the very last option after trying Eastern and Western medicine . Having a sports massage background, I research everything before having surgery. However, a few months ago, my oncologist had to remove several cysts that got to an alarming size. On September 24, I will have my L5 disc that collapsed years ago fused together. I had several procedures performed that indicate it needs to be done. (the pain from Renee’s L5 back problems have complicated her pain management and ability to improve her overall health)
I move between having a positive mind and feeling defeated. I get exhausted by doing the littlest of things. The weeks are like roller coasters. One day I feel like I am doing okay, and the next I feel like someone pulled the rug from under me. It’s an effort to even get dressed.
Thankfully, I am better than a few years ago and am happy for the IV medications doing such a great job. It amazes me how far I have to go to have a “normal day” or a “normal week”. I just have to hang in there, and keep taking each day as it comes.
Dr B said the Lyme inflammation is attacking my heart. The EKG and echo is okay but she is very concerned. I have to add a bunch of supplements. She said I have to let the surgeon know my labs. She said after I recover from back surgery that she wants me to get an IV again and do hard core IV antibiotics for 2 to 3 weeks to bombard the spirochetes.
My husband Ugo and I were at Cedars earlier this month. We saw the internist and vascular surgeon.
They are concerned about the blood work that showed my heart inflamed. They did more blood work, took an X-ray, then injected a serum into my veins that effected my heart and stressed it while I walked on treadmill. I felt nauseous , dizzy, and had a massive headache.
They took images of my heart for half hour while dye was in there. Good results came back…I was cleared for having back surgery. Recovery from back surgery for a Lyme patient is expected to take significantly longer than normal because of the weakened immune system.
-Renee
July 7, 2014
Today, the list of symptoms has shorten by half. However, the fatigue and pain is pretty horrible. On our 10 year wedding celebration last month-
I could barely make it through an hour ceremony. It was so good to see friends I had not seen in months. I put on a brave happy face, but inside I was in bad shape.
All my lyme symptoms had flared up, and I had so much fatigue and pain. I have a few bad days like that a week, where I don’t want to get out of bed.
Imagine the worse flu you have. You want to crawl in a bawl and sleep it off. I could not even go to dinner after the wedding ceremony with friends who some drove a long distance to come to it. I went home straight to bed.
It is a roller coaster. My recent blood work is not good. I had to see a cardiologist because the inflammation was showing it has even started to affect my heart.
The cardiologist is keeping an eye on me. The spirochetes have dug there way into my tendons and ligaments and they ache all the time.
To put it terms of understanding - it is a combination of having the fatigue of a severe flu, with arthritis in every joint, and nerve pain.
It affects my sleep, bladder, the understanding of simple things like directions and numbers. The list goes on.
I may get together with a friend once a week but it is a very quick lunch or movie- but I have to rest the entire day to prepare for something easy like that.
In a nutshell I still have a ways to go. I am getting blood work every few weeks and seeing the lyme specialist once a month.
There is a clinic in northern california called Gordon Medical in Santa Rosa with a whole team of doctors that I may look into. I don’t think we can afford it, and I am not sure I can even fly back and forth with the pain and fatigue. We will see.
The lyme affects different parts of my body’s systems so I see a Lyme Specialist, A Pain Specialist, An Oncologist, An Endocrinologist, A Cardiologist, A Orthopedic Specialist, My nurse and healers. It is a lot of going to appointments and paperwork and a full time job trying to get better and manage the pain and fatigue.
It is one day at a time for sure while staying on top of it all.
Dec 2013
Thu, 5th December, 2013
I had a great hour long meeting with my Lyme Doctor Dr. Bhakta yesterday. We went over recent blood work results and discussed which of my symptoms were better and worse.
The Lyme Specialist Recommends:
* Continuing on my IV medications. She switches the medicine every 3 to 6 months so the Lyme spirochetes do not adapt and become resistant to treatment. My medicare and health insurance still does not pay for my IV medicine and supplies.
* Taking oxygen each night while I sleep. I hope to get this started asap. The Lyme spirochetes do not like oxygen, and it will help me have less pain and more energy.
* Doing an IVIG drip once a month that is 5 hours long. This will help my immune system. Lyme inhibits immunoglobulin G; it survives by turning off long-term immunity.
* The blood work also showed that I was lacking in some minerals and vitamins to keep me healthy. So we are adding some concentrated compound supplements.
* The severe nausea that I have been experiencing has become a daily issue. We are working on solving that problem.
Thank you for caring and your support through this battle.
Happy Holidays to all of you!
Love Renee and Ugo
The Lyme Specialist Recommends:
* Continuing on my IV medications. She switches the medicine every 3 to 6 months so the Lyme spirochetes do not adapt and become resistant to treatment. My medicare and health insurance still does not pay for my IV medicine and supplies.
* Taking oxygen each night while I sleep. I hope to get this started asap. The Lyme spirochetes do not like oxygen, and it will help me have less pain and more energy.
* Doing an IVIG drip once a month that is 5 hours long. This will help my immune system. Lyme inhibits immunoglobulin G; it survives by turning off long-term immunity.
* The blood work also showed that I was lacking in some minerals and vitamins to keep me healthy. So we are adding some concentrated compound supplements.
* The severe nausea that I have been experiencing has become a daily issue. We are working on solving that problem.
Thank you for caring and your support through this battle.
Happy Holidays to all of you!
Love Renee and Ugo
Sept 2013
Tue, 17th September, 2013
Update: I had some symptoms get better, but my inflammation, pain, nausea, and headaches has been pretty horrible this month. However, the symptoms that have gone away were serious, and I know I am getting better with my IV medications. I looked at an old list of symptoms, and I have come a long way.
I saw the doctor yesterday and we are changing up a few things. She said if everything goes well, I can switch to oral antibiotics in about 14 months.
I have a doctors apt every day this week. I am so exhausted. On top of it, I thought having Medicare as my primary insurance would help, but it was a mistake. I am now stuck for a few months, before I can switch back.
Good News:
1) There is a great fundraiser coming up the last Saturday of this month. We are completely out of money, and Ugo just had to pay $2,000 out of pocket just for a few weeks of IV medications. The fundraiser will help.
2) My friends contacted the media about my Lyme Disease, and Channel 4 KNBC is airing it tonight. They will post it on NBCLA.com as well.
3) Also the Beach Reporter is interviewing me this Friday for next Thursday publication.
Lyme disease has become an epidemic and it is all about education and prevention.
For more information about the upcoming fundraiser, go to www.booze-n-clueshermosa.eventbrite.com or send a message to friendsofreneeavis@yahoo.com
My friends also created this Facebook page to share details on the fundraisers in general: https://www.facebook.com/FriendsOfReneeAvisFundraisingCommittee
I saw the doctor yesterday and we are changing up a few things. She said if everything goes well, I can switch to oral antibiotics in about 14 months.
I have a doctors apt every day this week. I am so exhausted. On top of it, I thought having Medicare as my primary insurance would help, but it was a mistake. I am now stuck for a few months, before I can switch back.
Good News:
1) There is a great fundraiser coming up the last Saturday of this month. We are completely out of money, and Ugo just had to pay $2,000 out of pocket just for a few weeks of IV medications. The fundraiser will help.
2) My friends contacted the media about my Lyme Disease, and Channel 4 KNBC is airing it tonight. They will post it on NBCLA.com as well.
3) Also the Beach Reporter is interviewing me this Friday for next Thursday publication.
Lyme disease has become an epidemic and it is all about education and prevention.
For more information about the upcoming fundraiser, go to www.booze-n-clueshermosa.eventbrite.com or send a message to friendsofreneeavis@yahoo.com
My friends also created this Facebook page to share details on the fundraisers in general: https://www.facebook.com/FriendsOfReneeAvisFundraisingCommittee
MAY UPDATE
Tue, 14th May, 2013
Last month I had a severe reaction to the new IV medication. I had the fever, chills, sweats, pain, and could not get out of bed for two weeks.
This month: Good news
I went to my Lyme Specialist and now we are trying a new IV medication that seems to be helping a lot.
Those horrible symptoms are only a few days a week.
We also went to the USC pain specailist and he is switching out some of my medicine that will be easier on my liver, kidneys, and overall well being.
He said I may get some energy back too.
The Oncologist (the Cancer doctor) wants me to do some more blood testing, but is not worried. He just wants to keep an eye on my blood tests and large ovarian cysts that have developed.
More good news:
We just had a fundraiser that raised almost $5,000
The Committee put together a Garage Sale that was the most successfull fundraiser yet. It came in just the nick of time as the medical fund was low, and I owe many months to the Pharmacy for my IV medications.
The battle:
My friend Jen spends hours and hours appealing with my health insurance trying to get my IV medicine, my Picc Line Supplies, as well as the Lyme Specialist covered. We are just having no luck at all.
My full time job is applying for financial aid everywhere to help with the medical bills. It is hard to do when you are sick. On the days I feel well, I spend countless hours doing paperwork. Everyone thinks I have to be bored, but I can not even keep up with the paperwork. It continually piles up. I am not bored, I am overwhelmed.
I am doing a conference call with Jen and Medicare tomorrow. Maybe that will help with some of the bills in the future! Crossing my fingers.
This month: Good news
I went to my Lyme Specialist and now we are trying a new IV medication that seems to be helping a lot.
Those horrible symptoms are only a few days a week.
We also went to the USC pain specailist and he is switching out some of my medicine that will be easier on my liver, kidneys, and overall well being.
He said I may get some energy back too.
The Oncologist (the Cancer doctor) wants me to do some more blood testing, but is not worried. He just wants to keep an eye on my blood tests and large ovarian cysts that have developed.
More good news:
We just had a fundraiser that raised almost $5,000
The Committee put together a Garage Sale that was the most successfull fundraiser yet. It came in just the nick of time as the medical fund was low, and I owe many months to the Pharmacy for my IV medications.
The battle:
My friend Jen spends hours and hours appealing with my health insurance trying to get my IV medicine, my Picc Line Supplies, as well as the Lyme Specialist covered. We are just having no luck at all.
My full time job is applying for financial aid everywhere to help with the medical bills. It is hard to do when you are sick. On the days I feel well, I spend countless hours doing paperwork. Everyone thinks I have to be bored, but I can not even keep up with the paperwork. It continually piles up. I am not bored, I am overwhelmed.
I am doing a conference call with Jen and Medicare tomorrow. Maybe that will help with some of the bills in the future! Crossing my fingers.
April Update
Sun, 7th April, 2013
Fatigue Test:
Last week I did a scientific government approved test I call the fatigue test. It was a 2 day test, and the test analyzes the way your body uses oxygen for simple to extreme activiies. They hook up ECG electrodes for monitoring of heart rhythm, a mask and headgear for collection of expired air, and a pulse oximeter for monitoring arterial oxygen saturation. Workload on the stationary bike was increased incrementally every 2 min using a protocol created for testing disabled persons. Breath-by breath measurements of oxygen consumption and carbon dioxide production were collected using an Oxycon Alpha gas analysis system.
In a nutshell due to my illness, I use as much oxygen to get dressed or to take a shower as someone who competes in the olympics. The reports show that I defintely passed for disability, and I will submitt these results to apply for medical and medicare. Then hopefully some of the $3500 a month I am paying out of pocket for my medical could be covered. There is a lot of red tape and it may take some time, but it gives me hope. My doctor says I have a long road ahead of me to knock the viruses out- so this test gives me hope for some assistance.
When I returned back home from the test, I was bed ridden and inflammed in every part of my body. I had 4 massages, one chiropractor appointment, and one acupunture appointment to help me get back on my feet. The doctor warned me that happens to most patients that are as ill as I am, but I don't think I was prepared for it. Ugo literally had to help me to the shower every day.
However, I felt great on Easter day and had a wonderful time with loved ones. It was a great day!
My illness is sometimes frustrating cause I look fine. I don't look sick at all, and of course I put on a game face with a smile when I see friends. I am so happy to not be at a doctor apponitment, or in bed.
I am still trying to find balance. The days I feel well, I may run a few errands, or do my medical paperwork that has piled up, and then I will crash hard the next day. It is a constant roller coaster.
I am so lucky to be in a community that offers help and have wonderful friends all over that give me encouragement.
Last week I did a scientific government approved test I call the fatigue test. It was a 2 day test, and the test analyzes the way your body uses oxygen for simple to extreme activiies. They hook up ECG electrodes for monitoring of heart rhythm, a mask and headgear for collection of expired air, and a pulse oximeter for monitoring arterial oxygen saturation. Workload on the stationary bike was increased incrementally every 2 min using a protocol created for testing disabled persons. Breath-by breath measurements of oxygen consumption and carbon dioxide production were collected using an Oxycon Alpha gas analysis system.
In a nutshell due to my illness, I use as much oxygen to get dressed or to take a shower as someone who competes in the olympics. The reports show that I defintely passed for disability, and I will submitt these results to apply for medical and medicare. Then hopefully some of the $3500 a month I am paying out of pocket for my medical could be covered. There is a lot of red tape and it may take some time, but it gives me hope. My doctor says I have a long road ahead of me to knock the viruses out- so this test gives me hope for some assistance.
When I returned back home from the test, I was bed ridden and inflammed in every part of my body. I had 4 massages, one chiropractor appointment, and one acupunture appointment to help me get back on my feet. The doctor warned me that happens to most patients that are as ill as I am, but I don't think I was prepared for it. Ugo literally had to help me to the shower every day.
However, I felt great on Easter day and had a wonderful time with loved ones. It was a great day!
My illness is sometimes frustrating cause I look fine. I don't look sick at all, and of course I put on a game face with a smile when I see friends. I am so happy to not be at a doctor apponitment, or in bed.
I am still trying to find balance. The days I feel well, I may run a few errands, or do my medical paperwork that has piled up, and then I will crash hard the next day. It is a constant roller coaster.
I am so lucky to be in a community that offers help and have wonderful friends all over that give me encouragement.
Difficult few months
Sun, 17th March, 2013
The past 3 months have been very difficult.
The story: Over New Years our landlord said they needed to fix a plumbing leak in our duplex. On Jan 2nd they said that we had to leave within 48 hours, and it should take about 5 days to fix the leak.
We found a place on our own and packed up my IV medicines, the kitties, and a few days of clothes.
They would not listen to us in who to hire, because they wanted fix the leak cheap. They hired a plumber who was not licensed. He broke open the entire ceiling and spread toxic asbestos all over our belongings. He did not cover or seal our furniture, clothing, plates, televisions, fridge, etc.... like he said he would. Instead the toxic dust covered everything. Then on top of this nightmare the owner flooded our the apartment. The carpet was soaking wet and black mold spread in the house.
We moved from hotel to hotel and my illness got worse and worse. My nurse would find me crying in pain under the bed covers. The inflammation and joint pain got out of control. My one cat even got an eye infection from the stress.
Our friends mom took us in at one point for several weeks. Thank you Nancy!
An agency that works with the government had to throw away 75% of our belongings into a toxic dump. It was tested several times, and considered hazardous and cancerous.
With all my pain and with Ugo's exhaustion, we had to go out looking for a place to live. We finally found a place that fit our needs and was close to our friends.
I was so sick from all of the stress, that I laid in bed for 4 days after we moved in. Our friends came over and brought us lamps, towels, plates, furniture, and hung curtains and put away my laundry.
I really felt like I was in some Omish community- where they all came build a new life for Ugo and I.
I am now having 2 or 3 better days a week. Ugo is getting a little more rest, and our cats are really happy.
The Southbay is so special because there is a sense of community, and everyone is helping me throught this difficult time. Also while all this was going on my friends held a poker fundraiser to help pay for my IV medicaitons. It was very successful and I heard a lot of fun!
I still am not sure why we had to go through that 3 months of hardship and stress, but I am grateful for everyone pulling together to keep me on the right track for healing.
Medical Update:
The little company of Mary hospital is helping me with my financial aid, and I was able to do a lot of testing there last week that the doctors wanted. I will get the results soon.
Next week I am getting a very specific test at a different facitlity. Over 2 days I will be put through a series of tests will show how much oxygen my cells are getting and how that relates to my extreme fatigue.
Love Renee
The story: Over New Years our landlord said they needed to fix a plumbing leak in our duplex. On Jan 2nd they said that we had to leave within 48 hours, and it should take about 5 days to fix the leak.
We found a place on our own and packed up my IV medicines, the kitties, and a few days of clothes.
They would not listen to us in who to hire, because they wanted fix the leak cheap. They hired a plumber who was not licensed. He broke open the entire ceiling and spread toxic asbestos all over our belongings. He did not cover or seal our furniture, clothing, plates, televisions, fridge, etc.... like he said he would. Instead the toxic dust covered everything. Then on top of this nightmare the owner flooded our the apartment. The carpet was soaking wet and black mold spread in the house.
We moved from hotel to hotel and my illness got worse and worse. My nurse would find me crying in pain under the bed covers. The inflammation and joint pain got out of control. My one cat even got an eye infection from the stress.
Our friends mom took us in at one point for several weeks. Thank you Nancy!
An agency that works with the government had to throw away 75% of our belongings into a toxic dump. It was tested several times, and considered hazardous and cancerous.
With all my pain and with Ugo's exhaustion, we had to go out looking for a place to live. We finally found a place that fit our needs and was close to our friends.
I was so sick from all of the stress, that I laid in bed for 4 days after we moved in. Our friends came over and brought us lamps, towels, plates, furniture, and hung curtains and put away my laundry.
I really felt like I was in some Omish community- where they all came build a new life for Ugo and I.
I am now having 2 or 3 better days a week. Ugo is getting a little more rest, and our cats are really happy.
The Southbay is so special because there is a sense of community, and everyone is helping me throught this difficult time. Also while all this was going on my friends held a poker fundraiser to help pay for my IV medicaitons. It was very successful and I heard a lot of fun!
I still am not sure why we had to go through that 3 months of hardship and stress, but I am grateful for everyone pulling together to keep me on the right track for healing.
Medical Update:
The little company of Mary hospital is helping me with my financial aid, and I was able to do a lot of testing there last week that the doctors wanted. I will get the results soon.
Next week I am getting a very specific test at a different facitlity. Over 2 days I will be put through a series of tests will show how much oxygen my cells are getting and how that relates to my extreme fatigue.
Love Renee
Medical update 2013 Post 6
Fri, 11th January, 2013
I saw my Lyme doctor on Monday. The last time I was at her office, they drew some blood to send
out for a Lyme Culture Test. The Lyme Culture test is a new test where they can actually take a photo
of the Lyme bugs inside of you if you have Lyme Disease, or if you are better - it will test negative.
It can take up to 4 months to do the culture test. I had so many spirochete that it took only 10 days to find the bugs in my system. A spirochete or (Borrelia (B.) burgdorferi) is a bacteria-like organism with a cylinder-like shape surrounded by an outer membrane.
Along with the Lyme Disease Culture she also did a MDL blood test that showed that I am infected with 7 other viruses.
The doctor is great and has a distinct direction on what my treatment will be.
She is first going to focus on the Lyme Disease for 6 months, and then she will focus on Babesia and Bartonella
for 6 to 12 months each.
The Lyme Disease is what is causing my nerve and joint pain. Sometime I have burning radiating pain that feels like nerve pain, and sometimes I have severe joint pain like I just broke a bone or sprain my joint. The type of inflammation is hard to control by basic medication. Some of my medication is a compound specially made and is a mix of many medications into a gel that I massage right onto the joints and tissue. This way it is a high dose, but does not effect my liver. But some days the pain is so bad, it may not help as much as I would like.
The bartonella and babesia symptoms are similar to malaria. The exhaustion and fatigue is at a high level.
On some days I can run a few errands or go to a movie, and some days I am in bed all day.
The doctor said that these spirochetes can change form to bombard the antibiotics and become antibiotic resistant.
My immune system got extremely suppressed due to my years of cortizone shots for my budlging discs in my back (from a terrible car accident and 12 years of gymnastics). Everyone's system is different and depending on how many viruses you have- depends on how long it takes for a patient to get better.
She is concern that my inflammation is at such a high level that it can cause a number of serious cardiovascular problems that can lead to or worsen heart disease. The reason for this is that, as Lyme disease spreads through the body, weakening other body systems, it can create an ongoing strain on the heart and overall cardiovascular system. Left unchecked, Lyme disease can also cause permanent damage to the heart and even death by heart attack. My blood tests showed that there are high cardiac levels, and she has a treatment protocol for this.
At the moment we are doing what is called a pulse with my IV treatment. I do 3 weeks of one IV antibiotic and the 4th week I do a different IV antibiotic 2 times a day combined with a hydration IV. That is 3 IV's in one day. It has made me feel horrible, and I have been in tears daily. I feel weak and everything hurts. The nurse came today to change my Picc line bandage, and I could not get up to greet her. Ugo had to stay home from work, because I could not take care of myself.
I remember when I was younger I fractured my leg playing soccer and did not tell my parents, because I wanted to do a sleep over.
I can push through a lot of pain, and always had a high pain tolerance. This week I felt completely defeated.
Nobody should ever have to endure this type of pain or suffering. All I can say education is everything.
www.lymemd.org
Thank you for your continued phone calls, texts and all the support!
It gives me the internal strength on the days when I have no strength to fight.
Love Renee
out for a Lyme Culture Test. The Lyme Culture test is a new test where they can actually take a photo
of the Lyme bugs inside of you if you have Lyme Disease, or if you are better - it will test negative.
It can take up to 4 months to do the culture test. I had so many spirochete that it took only 10 days to find the bugs in my system. A spirochete or (Borrelia (B.) burgdorferi) is a bacteria-like organism with a cylinder-like shape surrounded by an outer membrane.
Along with the Lyme Disease Culture she also did a MDL blood test that showed that I am infected with 7 other viruses.
The doctor is great and has a distinct direction on what my treatment will be.
She is first going to focus on the Lyme Disease for 6 months, and then she will focus on Babesia and Bartonella
for 6 to 12 months each.
The Lyme Disease is what is causing my nerve and joint pain. Sometime I have burning radiating pain that feels like nerve pain, and sometimes I have severe joint pain like I just broke a bone or sprain my joint. The type of inflammation is hard to control by basic medication. Some of my medication is a compound specially made and is a mix of many medications into a gel that I massage right onto the joints and tissue. This way it is a high dose, but does not effect my liver. But some days the pain is so bad, it may not help as much as I would like.
The bartonella and babesia symptoms are similar to malaria. The exhaustion and fatigue is at a high level.
On some days I can run a few errands or go to a movie, and some days I am in bed all day.
The doctor said that these spirochetes can change form to bombard the antibiotics and become antibiotic resistant.
My immune system got extremely suppressed due to my years of cortizone shots for my budlging discs in my back (from a terrible car accident and 12 years of gymnastics). Everyone's system is different and depending on how many viruses you have- depends on how long it takes for a patient to get better.
She is concern that my inflammation is at such a high level that it can cause a number of serious cardiovascular problems that can lead to or worsen heart disease. The reason for this is that, as Lyme disease spreads through the body, weakening other body systems, it can create an ongoing strain on the heart and overall cardiovascular system. Left unchecked, Lyme disease can also cause permanent damage to the heart and even death by heart attack. My blood tests showed that there are high cardiac levels, and she has a treatment protocol for this.
At the moment we are doing what is called a pulse with my IV treatment. I do 3 weeks of one IV antibiotic and the 4th week I do a different IV antibiotic 2 times a day combined with a hydration IV. That is 3 IV's in one day. It has made me feel horrible, and I have been in tears daily. I feel weak and everything hurts. The nurse came today to change my Picc line bandage, and I could not get up to greet her. Ugo had to stay home from work, because I could not take care of myself.
I remember when I was younger I fractured my leg playing soccer and did not tell my parents, because I wanted to do a sleep over.
I can push through a lot of pain, and always had a high pain tolerance. This week I felt completely defeated.
Nobody should ever have to endure this type of pain or suffering. All I can say education is everything.
www.lymemd.org
Thank you for your continued phone calls, texts and all the support!
It gives me the internal strength on the days when I have no strength to fight.
Love Renee
Good News! Post 5
Fri, 21st December, 2012
I was in and out of the doctors office everyday this month. It took everything out of me!
However, I got great news today. I was cleared for Ovarian Cancer and Breast Cancer. The blood numbers went down, and I do not have to do surgery.
I will recheck in 4 months- but we are heading in the right direction. That is a huge relief!
Also I ran into a lyme patient who was as sick as I am. He said my Lyme Doctor is fantastic and to stick to her Lyme Diet, Supplements and IV antibiotics. He feels so much better, and said there is a light at the end of the tunnel. It he said it takes time and continue being proactive.
I got my Christmas wish!
However, I got great news today. I was cleared for Ovarian Cancer and Breast Cancer. The blood numbers went down, and I do not have to do surgery.
I will recheck in 4 months- but we are heading in the right direction. That is a huge relief!
Also I ran into a lyme patient who was as sick as I am. He said my Lyme Doctor is fantastic and to stick to her Lyme Diet, Supplements and IV antibiotics. He feels so much better, and said there is a light at the end of the tunnel. It he said it takes time and continue being proactive.
I got my Christmas wish!
PRIDE & EGO : Post 4
Wed, 12th December, 2012
My entire career of being a Sports Massage Therapist was healing and helping others. It has been so difficult to be on the other end asking for help. I am learning to put my ego and pride to the side. It has been so hard, because I want to do everything for myself. I have always been like that. The pain has won this battle - for the time being. A program in Redondo Beach sent a care giver to help me with grocery shopping and doing laundry. Simple activities I took for granted are now a goal I look forward to do by myself.
Wish For Christmas: Post 3
Fri, 7th December, 2012
Over the next few weeks I am seeing all my doctors, and they will be going over my new blood tests. I will also have an Ultrasound, a CT Scan, and an MRI. For Christmas I just want some good news!
I can not believe I have been in this much pain for 2 years. I am truly lucky for all my wonderful friends, family, and husband! I honestly do not think I would have made it through these past 2 years without everyone's encouragement.
Treatment: Post 2
Fri, 7th December, 2012
Dr. Bahkta, my new lyme specialist, agreed with Dr. Harris and Dr. Thoring that it will take at least 18 more months of IV antibiotics before I will feel at 70%.
My major complaints now are severe nerve and joint pain that moves around, extreme fatigue, and feeling like I constantly have the flu. I also have nerve pain that is horrible if I stand up. The Orthopedic surgeons said it is related to the disc rupture. My L5-rupture nerve pain should travel down now up. The lyme specialist said that it is the virus.
Dr. Bahkta has a different plan of attack for my treatment. She would like to change up my IV antibiotics every 3 months while building up my autoimmune system. She said that Chronic Lyme Disease is similar to Cancer or Aids in the way that the autoimmune system is not functioning. The body cannot process the medication if the autoimmune system is not working.
Changing Doctors: Post 1
Fri, 7th December, 2012
For the past year I have been seeing one of the best Lyme Specialists on the West Coast, Dr. Steven Harris, who is based out of San Francisco. Every 3 months Dr. Harris would come down to Pismo Beach and team up with Dr. Thoring. The past year I saw a significant positive change with my neurological symptoms. I really liked the team of doctors; however, being in a car for 4 to 5 hours took a toll on my health. I recently decided to switch to a highly recommended Lyme Specialist, Dr. Bhakta. She is in Santa Ana which is only an hour away.
The tick gave me several bacterial infections that has drastically had an impact on my entire system, so I have acquired a team of specialists who I see on a regular basis. * Oncologist, Endocrinologist, Urologist, Pain Management Specialist, Chronic Pain Counselor, Acupuncturist, Massage Therapist, and a Physical Therapist. I get blood taken so much that I have gotten to know the Phlebotomists by name. It seems I have an appointment every day.