NEWS: Part 3 of California doctor’s own Lyme story
The concluding portion of the series, Dr. Jon Sterngold discusses how the IDSA guidelines impede the treatment of Lyme disease.
From the Willits News:
By Jon Sterngold, MD
It is difficult enough for someone suffering debilitating symptoms due to late-stage Lyme disease to get well with the judicious, but adequate, use of long-term antibiotics. Almost no one gets better without these.
To deny patients access this care is a travesty. But this happens all the time and patients often travel hundreds to thousands of miles to see one of the small numbers of Lyme experts in this country.
How can that be?
Doctors are taught to practice medicine that conforms to “guidelines,” thought to be consistent with the best approaches to disease based on what is known about the disease and effects of treatment. These guidelines are usually produced by the professional and academic organizations that represent specialty knowledge in medicine.
Guidelines for evaluation and treatment of Lyme disease are issued by the Infectious Disease Society of America, or IDSA.
The guidelines have been created by a small number of ‘experts’ in the IDSA, and there are a few punch lines to their conclusions. One is that the disease is hard to catch and easy to treat. Another is that anyone with Lyme disease who has persistent symptoms after a several-week course of treatment with antibiotics no longer has Lyme disease and should not be treated with more antibiotics since this just increases risk of untoward side effects and produces no clinical improvement.
They conclude many sufferers of neurologic and psychological symptoms from late-stage Lyme disease are simply deluded or depressed and should be referred for psychiatric evaluation.
Because the IDSA guidelines have been embraced by medical boards in most states, physicians risk losing their license to practice if they do not follow the guidelines. This is the primary reason why effective care is limited. The few physicians who have braved threats to their licenses and actually taken on the challenge of getting Lyme sufferers well have found most patients can be helped, if not made well, by the careful use of long-term antibiotics. Many have found it often takes one to three years of antibiotics for these patients to turn the corner.
It is now understood why that is, but this has not yet changed the position of the IDSA guideline creators. We also know the same folks who issue these guidelines have huge conflicts of interests in this realm. One has ownership of the Lyme bacterial DNA, several have financial relationships with insurance companies that do not want to foot the bill for this expensive care, one or more have a stake in a new Lyme vaccine, and all of them have professional and economic liability if and when proven wrong.
It is the experience of scores of physicians treating many tens of thousands of Lyme sufferers over the last 25 years that they are, indeed, dead wrong. There is an increasingly massive pile of literature that supports the science and clinical management of late Lyme, flying in the face of the “guidelines.” And in the past year, the IDSA has been legally challenged by the Connecticut Attorney General for creating guidelines in a manner both ethically and scientifically flawed.
This affords some hope for the future.
Another pressing reason why most doctors do not want to treat late Lyme disease is that it is a phenomenally difficult thing to do. Testing is deeply flawed and expensive. Response to treatment is slow and peppered with setbacks. Treatment is expensive and patients often suffer horrendous debilitating symptoms. As a prior ER doctor who liked to sew up wounds and send repaired folks home, I know it would take a very special demeanor to rise to this challenge.
I don’t think I’d want to manage a case as complicated as my own.
In these articles, I’ve shared a minuscule and space-limited fraction of what I learned during the past three and one-half years of living with late Lyme disease, as a patient and as a physician. There is so much more.
ABOUT THE AUTHOR: Jon Sterngold is a Willits, CA, resident and physician.
Reprinted by permission from the Willits News.
Read part one of the series here.
Read part two of the series here.
What kinds of things can happen to the heart? My husband had a circular rash for several days. Didn’t have any symptoms but I made him get a Western Blot test. No lyme. He has had a heart operation to redo the Aorita valve and other blocked valves. He is always tired, has arthritis and knee pain. Could the fact that the Aorita was bad be from lyme even though it was blocked? I have lyme and now starting to have heart things show up. Sinus Arithmeia? Does lyme cause this?
Sorry your post is over 6 months old. But I want to point out that a negative Western blot (especially if not from Igenex) does not rule out Lyme disease. No test can rule it out. Rash is highly suggestive and should have been treated with antibiotics immediately. I don’t think Lyme can cause aortic stenosis, but it definitely can cause heart block and sick sinus syndrome. Sinus arrythmia is actually a sign of a healthy heart; lack of heart rate variability is a bad sign.
I have had late stage lymes for 21 years. iam afraid I am goig to be misdiagnosed with m.s. , I was a nurse practioner before I got so ,so sick with lymes. just feel like giving up. thanks eileen
I feel like giving up too, Eileen, but let’s keep going! there might be something coming around the bend.
Sandy Curtis
I am a 27 yr survivor. I’ve had numerous bites, too many to count at the age of 58 I am now bedridden. 6 weeks ago I began using cannabis oil. Almost overnight my suicidal thoughts and depression were gone. My next goal is to be able to get out of bed and walk. After 45 rounds of abx over 12 years, both oral and IV I have not been able to recover. Although I live in an endemic area in CT all the Dr’s are following IDSA guidelines. I’m now watching this disease take my husband because the only info in the newspapers was the negative propaganda posted by IDSA denialists trying to save themselves from Attorney Blumenthal. I still wish I could die. I have an autoimmune blood disease causing low platelets. I am crippled by severe artritis pain and depression. I don’t think I can survive any more abx treatments. I’m praying cannabis oil will save my life like ithas cancer patients. It seems the only Dr’s who will touch this disease are those who have been affected personally or their families. Even George Bush the 2nd had it. We got to see his colonoscopy but not his Lyme treatment. Now I’m left toive at the povertylevel on disability. What a life…not.
I don’t think you will see this, since you wrote it 2 years ago, but I hope you are doing better! As a lady having suffered as long as you, look at all the empathy and knowledge about suffering we have accumulated! No, not funny, but I hope we get something good from this. I’m 65, so you are younger than me. i have had a wonderful husband by my side, fantastic children and, so for, 25 grandchildren. Don’t know if I will ever get better, but Ive experienced this.
Lets hope and pray for a cure! in the mean time, strive on; there’s got to be something good in this
Sandy Curtis
We’ve had excellent results with hyperbaric oxygen treatment for my son, and Dr. Zhang’s traditional Chinese medicine herbal protocol for myself. Both are excellent in addition to or in lieu of antibiotics.
Thank you for sharing all this – as a doctor, I hope you are communicating or at least attempting to communicate with other doctors about it all!
I take 98alive to disolve the biofilm and take DOXY.
Drink Alkaline Water with Ozygen Drops. My life has changed from night to day.
I would love to hear more about your LD How long have you had it? I have not heard of 98alive; where do you get it? Are you taking DOXY for the rest of your life? Alkaline Water? I do’t even know where to get that? Or do you make your own? And how do you do it? Oxygen drops, also have no idea where to get those? Would love for my life to change from night to day! I have had it for 23 years. Jeanette Stamm I might add that I have been living in hell for 20 of those years. Well it seems like hell to me anyway. Feet and legs hurt and bother me so much it is impossible to get a good night’s sleep.
My son in law had the classic bullseye rash after a bite (working in woods near Winston-Slem, NC and symptoms off and on for 9 yrs. He never got any treatment. In Aug of 2014 he came down with unbearable shoulder pain and was finally diagnosed with Parsonsge-Turner syndrome- he has had a 6 weeks regimen of steriod by IV and 5 months of morphine and another pain killer. His left arm has atrophied to the point that he can’t use it at all- lost 45 lbs- he never tested positive for lyme but the did the antibiotic treatment with no effect whstsoever. He is 50. He thinks it is connected with lyme.,but no evidence other than the occasional appearance of the bullseye rash. Doctors from UNC and Duke Univ Medical are stymied as to what to do to help him- any ideas??
Sue, recommend your son be thoroughly evaluated by a Lyme-literate MD. You can contact ILADS for names.
Sue, my LLMD doctor warned me to never have a cortisone treatment unless it was to save my life or eyesight. It apparently makes Lyme very difficult to treat. Get to a Lyme literate MD asap. Taking the abx is a drag but I got my life back. Make sure to take enteric coated Jarrodophilus to add good bacteria to the digestive system. Good luck
Sue, I live near Greensboro, nc. I did not acquire my lyme disease here but many of my other friends. Your loved one should contact Piedmont wellness in Greensboro. Their practice is very lyme literate and are caring and compassionate on your conditions. They will help treat your condition in the best way possible. Don’t give up the fight-there are many new ideas and bright minds working to help us all.
Anita
First of all… Thank you so much for sharing your experience Dr. Sterngold. My niece has been seeing Doctors and specialists for the last year. We live in Grand Junction Colorado. She has been ill with many symptoms over the past 8-10 years with the worst over the past year and a half. She has now spent her life savings on different specialists. All of which prescribed an anti depressant after many tests and negative results. On a trip to Denver to visit her family, her mom suggested a visit with a naturopathic doctor. The doctor questioned her and right away said she thought she had late stage Lyme disease. (As this doctor had it earlier in life herself.) I, myself started pushing for the anti depressant in hopes she could get her life back. It was scary watching her health and her life deteriorate with this illness. The first two tests were negative, the third test was positive. There are 3 Specialists in the state of Colorado. None of them are close. I hear there is a treatment in Chicago, but it is still experimental. She is relieved to finally know what is wrong, but she is scared for the treatment and long term affects of this disease. Don’t give up for yourself. Stay supportive for the family member going through this. Their life is a living hell. We have the internet, it is loaded with knowledge. Push! Push! Push! until you get your answers. Research as much as you can. Odds are good that someone out there has had the same or similar experience or symptoms. Make your Doctor listen to you.
I was a victum of late stage Lymes. In my case, I was struck with muscle paralysis in the throat and face. The area was also extremely inflamed. This was the fall of 2008. It took 25 days to get me stable enough to go home with a feeding tube. I had sleeping, breathing and vision problems. I even stumped the Doctors at Mayo in January of 2009. I lost 50 lbs. After several months of rehab, I was able to eat again and sleep normal. However I still had the continuing “fog” on my brain.
Jump to the spring of 2011 and yet another attack of what ever this is on my throat, can’t eat so the tube goes back in and the process is repeated. This time we try steroidal treatment and it reduces the recovery time to six weeks from six months the first time.
Durring all this, I’m diagnosed with Myasthenia Gravis and being treated for it. All tests for Lymes have been negative, BTW. I had spells of double vision and joint pains.
Jump now to the spring of 2012. I continue with brain fog and sporadic double vision. I contract Rocky Mountain spotted fever in Feburary and I’m treated. My GP has a wife with Lymes and recommend another test for Lymes.
This time it came up positive. I begin treatment of Antibiotics. I was taking two types, 3 days on 4 days off for six weeks. Then off all antibiotics for 6 weeks. He doctor would also introduce third kind of antibiotic occasionally. Or as he called the procedure: whack a mole! Or in this case the Lymes.
Unfortunately a third episode took place in the fall of 2012. Another feeding tube, more rehab. At least I was familiar with the recovery process.
By the spring of 2013 I was still in a fog but my vision stayed stable. I was still on MG meds and still on antibiotic rotations.
Finally in August I was given Cifro as an additional antibiotic. In mid October 2013 I noticed the fog was gone! I got off the MG meds in December and I’ve felt great ever since. My GP, the Mayo team and my Neuro all commented on my return to health. As a precaution I did do a follow up dose of Cifro in January this year to play a little more Whack a mole with any dormant Lymes.
Steve I don’t know if you will ever see this but your post looked similar, perhaps, to my brother’s condition. He is presently slated to die from ALS which, as far as I have learned, is not anything but a symptom. The question is, what is the cause. MY brother has been bitten by ticks in CA and he knows this for sure, that were not treated. He had night sweats, etc. He tried the standard antibiotics for treating Lyme with no reaction, according to him. He has had the Igenex testing, etc. and everyone has given up finding any sort of treatment. He is, or was, an EXTREMELY healthy, strong and athletic 50 years young male. Any thoughts on this? Would you mind responding to my better email, jenkettle@hotmail.com? He is just getting a feeding tube inserted now for the first time.
I believe I contracted Ehrlichiosis in 1980. I had a severe flu and never recovered. I then spent 15 years of going to doctor after doctor, being told I was crazy, that I was making things up for attention, laughed at, etc. by the medical community. In 1995 I was finally diagnosed with Ehrlichiosis and was given a month of antibiotics with no follow up what so ever. I felt better for a few years but have since had relapses and now feel like it never really went away. I don’t know where to even start. I don’t trust my primary physician I have currently to know what to do. How on earth do I find someone to help me without spending another 15 years searching and being abused by the medical community?
Recommend you be evaluated by an ILADS-affiliated doctor. (ilads.org) Also recommend you look into LymeTAP, which is a program to help you pay for diagnostic testing of tick-borne diseases. (lymetap.com)
Thank you!
Suffered for 9 mo until I found an LLMD, she saved my life! Detox and traditional ABX, then I transitioned to cowden protocol then onto transfer factor protocol… And I have been off all medication for about 1.5 years now! Get to an LLMD!
i have had a combination of lyme (my 3rd) ihfection and this time it joined up with bartonella. that was in june of 2012 by the fall of 2014 i had gastrointestinal problems then in early 2015 i had a stroke ( lymes related) i had to get help getting around……. then in May i succumbed to congestive heart failure (lymes related) because my heart doctor said all my arteries were clear as a bell the recovery from that has taken me many months i am due tomorrow to see my cardiac specialist he took my ddisease seriosly but i dont have any good feelings about his verdict. i think my heart is still weak. and he cant ddo anything about that i am seeing a lyme literate doctor………betsey
Thanks for your article, but WHAT DO I DO!! I got Lyme Disease in the 1980’s. I was treated aggressively width antibiotics 10 years ago. Today I am more sick than ever! My doctor has been very good to do whatever he can to help me, but we don’t know what to do next. Do you?
Sandy, I do natural anti-inflammatories, like take turmeric capsules that take down pain in joints and soft tissue; drink mangosteen juice which stops Lyme eye symptoms, clears out sinuses and regularizes the bowels; noni juice and grapeseed extract to stop lipomas, etc. I suggest you experiment with various natural anti-inflammatories to see if any of them relieve symptoms.
Great series of articles. I am not a suffered, but know people who are . . . so I was interested. Thanks for sharing the backstory of why so many physicians turn a deaf ear.
I am so very happy to have found this website. My wife forwarded it to me. I am British and live in the USA with a Green Card and have been here since 2000. When I first came here I worked as a logger in the forests of California. It was not unusual for me to get into an area of poison oak and often had the sores and rashes connected with poison oak contact. It was also not uncommon for me to get into an area where there were a lot of ticks. I remember my wife picking ticks off me at various times after I got home. At least once I was bitten and she was worried telling me that tick bites can make you very sick. She said that if ever I saw a “bullseye” rash I would have to see a doctor right away because I would have Lymes. I did get rashes but it did not look much like a bulls eye, and even if it did, at the time I had been in the poison oak so it would have been hard to tell.
Then the issues started.
I had high fever and dark foul smelling pee. I thought I had a kidney infection and may well have done. I left working in the logging industry and did eBay from home for a while. Then I got a job in mining and after a while I worked my way up to being a heavy equipment operator. I was often working 12 + hours per day and sometimes for as long as 6 weeks at a time without a day off. When I became exhausted and it was hard to get out of bed we thought it was likely to do with the hours. I developed a skipbeat in my heart, pains in my chest and joints, fevers, bodily weakness, and had to cut back on the hours I could work. The co pay on my medical was huge and I was not well but I was determined to beat this. At one point I remember traveling to Washington to visit another facility and I had difficulty focusing on our mission. The next morning my left eye was full of blood and I put an ice pack onto it and an eyepatch from the company first aid kit and carried on. I started to make errors loading trucks and trains, often overloading due to not being able to judge the flow of material or run my “bucket scales”. We moved at about that time and it ended up that we were too far away for me to drive there and work all day and then drive back home. I gave up that job and worked for a resort doing maintenance work on cabins and other buildings. When they laid me off for the winter I went back to mining and moved with the company out to Iowa.
Back in Britain I had been chief mate on a survey ship in the North Sea working up close to drilling rigs and oil/gas platforms, doing exploratory work, inspecting pipelines, between contacts working as “Advaced First Aid” when we doubled as a “safety standby ship” and was on course to start taking my captains certificates and be given my own ship. They had no tolerance for fools and only the best were given positions of responsibility.
I was on top of my game running heavy equipment in mining and excited about a fresh start, but as the summer came in and the humid heat came with it, so I started to make mistakes again and before long I started to see things which simply were not there. This took the form of a very bright bluish white light like the reflection of the sun off bright chrome. It started at pin prick sized and appeared to slowly roll towards me until it appeared as if it were a slowly advancing ring of light. It would get “closer” until it appeared to roll past me. Then I would feel nausea like you would not believe and I would be sent home. I went to an optometrist who told me that what I had was a form of “ocular migraine”.
My blood pressure started to go up and the company doctor told me to start taking medication for it. Before long I was having so many issues of irrational behavior, near misses, forgetfulness, and accidents that I went into the office and told my boss that I had to see a doctor before i could continue and was needing some vacation days to get things done. The following Monday I got a call from him wishing me all the best and telling me they would keep a place for me but to come back with my “A” game.
After that my life, which was already shaky, fell apart. I lost my ability to communicate properly. Huge areas of my vocabulary would come and go. I became very confused to the degree that it took me about 2 hours to figure out how to attach a simple latch to a shed door. I lost my mobility and was unable to walk the 75 yards back up the slight hill to our house. My wife would wait about 20 minutes after I had left the house and then walk down and lead me and support me back to the house where I would wait for this weakness to pass. The doctors aid who saw me at the local hospital clinic had an MRI scan done and when nothing was found she, during a light hearted conversation asked me if I would like some time off from working and I remember thinking it to be an odd question but I said yes, having worked doing farm chores since I was 7 years old and then left school at the age of 16 and gone to sea, I felt that I really was looking forward to the day when I was retired. So I was sent to a neuro psychologist as a suspected “Malingerer”. If anything I am a workoholic! When I realized that I was not being taken seriously I changed doctors twice. None of them could figure this out. I was tested for Lyme. That came back as negative.
I started to lose my orientation and whilst driving I would get lost. I did find that I had sleep apnea, an enlarged Aorta, a “benign” skip beat in my heart, and something else which they could not figure out but sent me to a neurologist- likely the best doctor I saw, and he was a Muslim here from Syria. He witnessed during my initial testing “huge discharges from my left hemisphere” and he took me into hospital as an outpatient. During the time I was there I did not have a single event. I was treated for absence seizures. He sent me to Iowa City twice to see a specialist who tested me and overturned the findings of the neuro psychologist who had called me a malingerer. About this time the company cut me loose. I had no income except for unemployment. The co pay for my medication was huge, as also was my co pay for my doctor visits. My savings were all gone and as a last resort I encased my 401k. That covered the bills. Now I was broke and sick. I went to see a psychologist from “unemployment” and started watching self help videos on you tube. There I found “fat sick and nearly dead” and took what I saw very much to heart. I did a mono fast of juice: mainly green leafy veg and apples. I thought I was going to die to begin with. As I started To go through detox and lose weight I started to rebuild my energy but there was always something wrong. Pains and cramps. Words missing. Dilated pupils and intolerance to light. Intolerance to heat. Pain in my joints. But a lot of the confusion and weakness subsided. I even got a job as a part time waiter at a pizza restaurant! Then, as I got stronger and lost weight I found I did not need my bi pap machine. I got a second job closing shift and cleanup at the end of the day in a fast food outlet at a convenience store. Then I held down a full time job at a Casino as salad chef and was promoted twice to become firstly buffet cook then lead cook. Long hours again. Then I started to get confused again and eventually left after just over a year.
I held down a part time job until about a month ago. When I deemed myself unfit to drive because I was getting so weak and confused. My little Sheltie barks at me when I am having an “event” and makes me sit down. Yesterday I achieved a lot. I planted 2 apple trees and cleaned out my dog kennel. That should have taken at most 1 hour but it took about 6 hours. The cramps and pain in my knee and shoulders are sometimes unbearable. My legs feel like as if they are skins full of water. I get so confused. My ability to communicate is so bad that I cannot hold a conversation for long. I lose words. I go numb in my hands and arms I cannot work independently, I cannot remember what I set out to do and cannot stay on task for long. I black out. My heart stops and I make myself cough hard and rapidly which action so far has made it restart. This all comes and goes and so far my day today has gone well. I am moving towards a vegan diet to see if that will create an alcoline environment because it seems humans do better and have better immunity when not acidic like most of us in the western world are.
Dr. Daniel Amen put up a very interesting video on You Tube relating to the identification of the Lymes spirochete. They are visible on a slide under a 1000 x magnification through a microscope. There is a way he describes the treatment of the blood sample where you can observe the spyrochete emerge from red blood cells. I am familiar with microscopes and at this time I intend to buy one which will display onto a computer screen. If I can capture imagery of these little fellows- my mortal enemies – I intend to forward that footage to the Amen Clinic to see if they can confirm that I have Lymes. If I do I shall go back to Britain as a citizen with the diagnosis and be treated free under their National Health Services. My son is a deep sea diver who owns a hyperbaric decompression chamber. He has helped others using oxygen in the treatment of Lymes. It is the only way that I can keep my home here in Iowa. I cannot afford health insurance in this country. My resources are all depleted. I have no pention to look forward to. If this is Lyme as I think it is, then it will kill me if I do not do this.
My “A” game seems as far away as ever. I feel worthless and lost. I am caught between a rock and a very hard place. I cannot provide for my family. I have zero income.
If you pray, please join my in prayer for this group. We need recognition and proper testing. We need healing. We need our bodies and our lives back. Many of us are the same as myself without money to get treatment with and with which to procure proper insurance … with no knowledge of what to do next. We need to fulfill our purpose here on this earth in our lifetime. Please God! Hear us!
Dave. I hope you will see this reply. I’m deeply saddened to hear of your struggles. I wanted you to know there is someone out here praying for you. (For all of you suffering with this horrible disease). I read all of the comments, but for some reason yours reached out to me. Your final plea for God to hear you….Have you felt Him? Maybe I stumbled across your comment for a reason… Maybe it was His purpose. So that I could reach out to you and offer you words of comfort and hope. And to let you know you are cared for. I will continue to pray for you and your family. I did wonder since you mentioned possibly moving back to Britain, if you had done so or not. If so, were you able to get the medical treatment you’ve long needed? Any change? I genuinely hope you have found some comfort and a path on a road towards regaining your health back.
Emily, thank you very much for your kindness in replying to my post here. I did not move back to Britain, my wife got a better job and was able to cover the outstanding bills so for the time being we are safe enough so far as money is concerned.
I have recently been doing extensive research on water fasting. It seems to help the body fight infections and all kinds of other things. I am currently almost at the end of day 11 of my fast. I feel no hunger and food does not appeal to me. I even cook for the household without any interest in food at all.
For the first time in a very long time I can honestly say I have gone more than a week without having any incidents such as absence seizures.
My mind is much clearer and I do not feel so depressed. To answer your question, yes I feel God’s presence with me. I am also using this time to devote more of my day into prayer, meditation and worship.
Thank you for praying for this group.
Yes the toxins are releasing from my fat cells and from my buddy in general, I do feel quite unwell unless I drink a large quantity of water. I find that does ease The pains.
My weight is coming down and so is my blood pressure. My heart beat is much more regular. I can focus my thoughts much better also.
It is my intention to keep up this fast for at least 21 days, but my bigger goal is 40 days. If I can make it to that point I shall be able to re evaluate at that point.
There is a Facebook group called “Fabulous 21 Day Water Only Fasting Sipport Group” should you want to find out more about water fasting for health, I am on there. I hope mentioning the fast is not offensive to anyone here. It is a recognized treatment for a variety of illnesses in Russia and Germany.
Thank you for your reply.
Wow, I didn’t realize that ‘guidelines’ actually can be a negative thing!
Thank you for sharing. The unwillingness of much of the medical community, especially military, to accept Lyme as being a viable culprit in many situations is costing lives and destroying familied
I really appreciate this 3 part article. I have been severely ill for 5 years and finally have found help through the right institution which is expensive and hard to facilitate because it’s so far away from my home. It is crucial to treat yme as it is probably the underlying medical issue and not what you’ve been actually diagnosed with. Living in the Northeast, one has to be very cautious about Lyme. It’s probably what’s wrong with you if you have any symptoms and doctors don’t believe you!
Hello, my name is Mitchell,and I just recently was diagnosed with lyme.My story of lyme started halfway through my first term in the Army.I was an American Soldier.Iinwas spring time and my platoon was doing a few weeks of training in Wisconsin.I noticed I had a few tick bites one day during a long day of training.So I did what most soldiers do.Remove the ticks I could see,and have my buddy remove the one ones I couldn’t see.I didn’t think anything of it this time around.Afterall I was stationed in FT.Leonard Wood Missouri.The woods are crawling with ticks.FT.McCoy Wisconsin seemed actually depleted of ticks compared to Missouri.My infection of lyme went unoticed to doctors for six years.Although many of my symptoms were already there.During the past six years I was misdiagnosed by several so called doctors.A few of which called my condition psychological.This would cause my blood to boil. I would get so upset with these doctors who knew nothing.I have been in immense pain throughout my entire body.I now walk with a cain,and I am in extreme pain.I had somehow contacted these conditions within the last six years.bladder Cancer stage 1 carcinoma ,Chiarri1 malformation,diverticulitis,Fibromyalgia,Multiple Sclerosis,Chronic bile duct obstruction,Billiary Dyskenesia ,arthritis,Ankylosing Spondylitis,irregular heart beat.Neuralgia in my hands,feet,neck,and back.Acid reflux diseaase,HY Pylori,pancratitis,enlarged fatty liver disease,migraines,tremors,muscle jerks and psorasis like rashes on my body.Just last week I had a western blot test come back positive for lyme and several of its parasites that go with it.I went and saw a Nutritonist who has placed me on a probiotic and theese drops that derived from the venus fly trap.I was on antibiotics before I knew I had lyme for my HY Pylori.Apparently the antibiotics did nothing for the lyme,but it did heal the bacteria in my stomach.I have been operated (surgery,procedures)on by Drs at least 41 times in the last six years.I am so tired of the nonsense I see in clinics and hospitals everywhere.I know its probably to late for me to be cured of this lyme disease. I certainly am not giving up this fight. I pray for all those who are suffering to stay strong in your Faith and ideas that have brought you to where we all are at today.God is a healer.He healed me of my bladder Cancer! I know what the days of pain feel like and how each day feels like an eternity.Stay positive out there,and know that God loves you! Mirracles can and do happen.I am living proof.My Cancer is gone,but the lyme is still there.It can be daunting to think its never going to go away.Adapt to it,but don’t ever except defeat.It’s the only way to stay on top of this horrible disease.I wish everyone the best.I pray your healing comes soon!
Thank you Mitchell. I also pray your healing comes soon
God is Great. Never stop praying & believing in Miracles. Thank you. I pray total healing for you also.
I have a question, seemingly simple. My Lyme infection went unrecognised for several years and was “treated” with a short course of intravenous antibiotics. I am left with peripheral neuropathy that affects my balance as I have limited information on what my feet are doing. I rely completely on visual cues, but am incapable of skiing – once my passion. Other symptoms I am unable to separate from the inescapable ravishes of age – shooting pains, slowness of thought, failing memory, profound fatigue, etc. My enjoyment of life is seriously diminished and death holds no fears. My question is whether there is any reason to think that my neurological damage might be repaired by some means, and that pushing through the pain of walking might improve stamina and reduce the fatigue? Or will forcing myself to physical extremes, however limited they may be, might actually cause more damage.
Dr. John Cooke. arachne1@aol.com
I would be interested to find out how I can find a Lyme expert physician who does understand late stage patients. We live in VA and would gladly travel but we desperately need guidance. Thank you for your help. Cheryl Rose
https://www.lymedisease.org/find-lyme-literate-doctors/
I would like to share some of my story here in case it may help others. I am from South Africa, and was eventually diagnosed with Q Fever, Spotted Fever, and Chlamydia Pneumonia about 10 years ago. I am now 51. Looking back I was able to identify possible time lines of infection for Q Fever – at 1-year old from unpasteurized milk. Nose bleeds. Later full-body rashes (hives) on two separate occasions at about 5 and 12 years. Treated with steroids. I engaged in a lot of sport up to about 15 years, and completed high school at 17 years. At 15 the heel of my left foot kept swinging inwards and catching the ankle on my left foot. Walking, and then climbing stairs became progressively more difficult over the years. Eventually I surrendered and began using a wheelchair at about 33 years. Advice led me to a specialist in infectious diseases at about 42. Within a few months of treatments on antibiotics (alternating tetracyclines? and some quinine at the beginning) for 2 weeks every month, extremely painful headaches were gone.
Substantial research eventually led me to believe that these infections were caused by the same family of bugs – leading to a self-diagnosis of Lyme Neuroborreliosis – rightly or wrongly. All the symptoms matched.
My point – about 6 years ago I opted to stop the antibiotics as I felt they were no longer doing much good, and were wrecking my intestinal flora. I came across cannabis oil. I started using a minute dose every night. Unfortunately, I couldn’t use more as it made me extremely sleepy, and I needed to work. After 8 months my liver ALS/ALT results were in the normal range for the first time in 8 years of antibiotics, and lab results indicated I was free of Q fever.
My circumstances changed, I tried using cannabis oil since then, and do manage intermittent regular use, but I still have to work, and the lethargy it causes me makes this difficult. Not everyone experiences lethargy from using cannabis. I would take more, regularly, if I was not dependent on an income.
My current situation is that I have had about 1 headache a year since antibiotic treatment. Unfortunately, I am in a power wheelchair, I cannot lift my arms or my legs. I lie on one side to sleep throughout the night (I now sleep, whereas before antibiotics, my sleep was minimal, resulting in intense exhaustion). I cannot bathe or shower myself, pick up a coffee cup, and physical exertion beyond the absolute necessities remains tiring due to extreme muscle weakness. I smoke cigarettes, which I assume contributes to my brain fog (a large does of cannabis oil one day led me to have a frightening anxious reaction 36 hours later when I had a cigarette. I could barely breathe for several minutes, gasping for air etc). Cannabis does not like foreign materials in the body, and I believe with sustained use it would also annihilate the Spotted Fever and Chlamydia I have. At the late stage of LNB, even ridding myself of these infections with cannabis oil, I don’t know if my nervous system would recover sufficiently to walk again, if at all.
It is sad to think that my health has been lost due to a lack of diagnosis, and treatment with steroids, which simply pushed these infections deeper into tissue.
I hope my experience can help someone else.
Oh yes, I forgot. I was also diagnosed with sporadic distal myopathy and some other myopathy over the years. Gene tests disproved these diagnoses.
It breaks my heart to read all the comments! I want you to know that I, too, was misdiagnosed for over 10 years. I had to go to Virginia to get the proper diagnosis. A customer of mine saw that I was getting worse and scheduled an appointment with her internist. He took 18 vials of blood and the tests came back that I had Lyme disease co-infected with Babesia and Bartonella, plus too many other things to mention here, after seeing over 22 conventional doctors in Pennsylvania. These diagnoses were made in July of 2017. I still am very, very sick and don’t know what my future holds but I do want to let all you Lymees know that I am now meeting with state (PA) Senators and State Representatives (I am telling them “My Story” and that I am living proof that “chronic Lyme Disease” exists. I hope to be able to meet with the Governor very soon. I feel for those of you that do not have the money for Lyme literate doctors because I have already spent over $20,000 out-of-pocket and I am running out of money. What then is going to happen to me??? I am also fighting for SS disability for us Lymees that cannot work. Trust me, I want to work! I had a very successful business! No one should have to endure all that us Lymees have to (and still am) to get proper treatment and be on SS disability. (I paid into it for over 33 years, now when I need it, they deny me!) PLEASE DO NOT GIVE UP! LIKE I HAVE READ FROM PEOPLE BELOW, MIRACLES DO HAPPEN and trust me, if I did not have a personal relationship with God, I would have committed suicide! I know how bad it can get!! I feel for each and every one of you.
If you can, please visit your Senators and State Representatives and Governor in your states. Tell then your story!! I DO WANT TO LET YOU ALL KNOW THAT I HAVE BEEN IN CONTACT WITH SENATOR SCOTT PERRY’S OFFICE. HE IS AT THE FEDERAL LEVEL and I hope my health will improve so I can make a difference at the Federal Level! We all can make a difference!! GOD LOVES YOU AND SO DO I!!