LYME SCI: Is it fibromyalgia–or Lyme disease?
When Lady Gaga recently revealed a diagnosis of fibromyalgia—a set of symptoms characterized by widespread pain that is frequently accompanied by fatigue, sleep disturbances, memory issues and mood changes—I thought of another famous singer, Kris Kristofferson.
The Country Music Hall of Famer was also initially told he had fibromyalgia. As his symptoms worsened over the next 12 years, however, Kristofferson was eventually diagnosed with Alzheimer’s—until he was later found to actually have late-stage Lyme disease.
Like others in the Lyme community, I couldn’t help wondering if Lady Gaga actually has Lyme disease. It turns out that Alfred Miller, MD, a retired doctor from San Antonio, Texas, has the exact same suspicion.
Mysterious illness from the 70s
Dr. Miller practiced internal medicine and rheumatology for 40 years, and taught at the University of Texas Medical School in Houston.
He first learned about Lyme disease at a medical conference in 1977, when he heard Dr. Allan Steere describe an epidemic of arthritis-like symptoms in children near Lyme, Connecticut. Five years later, Dr. Wilhelm Burgdorfer would identify a tick-borne species of Borrelia as the causative agent of what came to be known as “Lyme disease.” (It’s named Borrelia burgdorferi in his honor.)
Years later, Lyme disease would tragically affect a member of Dr. Miller’s own family.
A missed diagnosis of Lyme disease
Shortly after Dr. Miller retired, his 43-year-old daughter-in-law, living in Boston, came down with a mysterious illness. She was evaluated by top doctors at three prestigious teaching hospitals, and given a terminal diagnosis of amyotrophic lateral sclerosis (ALS).
But, according to Dr. Miller, something didn’t line up. Although she had all the symptoms of ALS, he thought the lesions in her MRI looked more like multiple sclerosis.
ALS, also known as Lou Gehrig’s disease, is a progressive degenerative nerve disease with no cure. Not willing to accept this diagnosis for his daughter-in-law without being extra-sure, Dr. Miller did some research.
He states, “When I went to the medical literature, the only illness that could present the MRI of the brain of MS and the physical findings of ALS was neuroborreliosis” — late-stage Lyme disease which has spread to the central nervous system.
As a physician trained at the Mayo Clinic, Dr. Miller reached out to his colleagues there and asked that they look at the possibility that she might have Lyme. However, her ELISA test came back negative, as is the case in approximately 50% of patients who actually have Lyme disease.
From there, Dr. Miller did what many physicians experienced in Lyme disease do. He sent her blood to a specialty lab that reports all the bands on the Western blot. Lo and behold, her test came back positive for Lyme.
In this video, Dr. Miller explains how most standard tests for Lyme will miss the diagnosis and why the Western blot must include all bands:
Rheumatologist turned Lyme activist
Since his daughter-in-law’s diagnosis, Dr. Miller has made it his mission to educate others about the risks of Lyme disease being misdiagnosed. He believes all patients who have been given a diagnosis of a neurodegenerative disease—including ALS, MS, lupus, and fibromyalgia—should be evaluated for Lyme disease.
While there are distinct differences in the later stages of these illnesses, they are almost all accompanied by pain, fatigue, sleep issues, cognitive issues, headache, numbness and tingling.
According to a survey of over 4000 patients with Lyme disease, “roughly 20% of those with chronic Lyme disease were initially misdiagnosed with a neurologic disease” including MS, ALS, Parkinson’s and multiple systems atrophy.
When to suspect Lyme disease
Unfortunately, fibromyalgia has no cure and a diagnosis may lead to a dead-end when looking for potential causes. Because there is overlap with the symptoms, many patients with Lyme disease are initially diagnosed with fibromyalgia. The good thing is Lyme disease is treatable and for many patients, treatment resolves their pain.
Women are twice as likely to be diagnosed with fibromyalgia, with the average patient going five years before getting a diagnosis. Interestingly, women are also more prone to false-negative testing for Lyme, leading to a delayed diagnosis of more than two years in over 60% of the cases.
Because so many patients with Lyme disease are frequently misdiagnosed, LymeDisease.org has created an easy to use checklist that you can fill out and take to your healthcare provider. Click here to check your symptoms.
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: email@example.com .
Alfred Miller, MD | Alternative Considerations for “Common Misconceptions About Lyme Disease,” The American Journal of Medicine, Letter to the Editor.
Stricker, Johnson | Gender Bias in Chronic Lyme
- October 9, 2017 at 7:12 am
Has anyone tried to send this to Lady Gaga or got a hold of her? I also suspect she has Lyme disease. Many stars are coming out with it and it is so prevalent. The diagnostic tool I used was a DNA test. I am not sure if the Western blot always works or any test for that matter. Thanks for posting this!!
- October 9, 2017 at 3:47 pm
Thank you for reading my blog. I certainly hope Lady Gaga sees it.
- October 15, 2017 at 7:18 am
I tweeted this to her. If it’s hard for celebrities to get diagnosed properly, what about the rest of us?
- October 16, 2017 at 5:55 am
Where did you get your dna test from
- November 22, 2017 at 11:14 am
Ilads doctor ordered it. I don’t think you need a doctors script. You can find the company online and order it yourself. They’re trying to help so many who can’t find or get a doctors help I believe. DNA connections. Stephen Buhner aiso lets you get his items without a doctors script. Thank goodness as his products helped us for 1.5years until we found somebody to help us!!
- October 9, 2017 at 8:01 am
The term , Fibromyalgia , is not a disease. It is an over simplified diagnosis for symptoms of muscle fiber pain of unknown origin. It’s like being diagnosed with a stuffy nose. When my mother told me that she was diagnosed with ‘ fibro’, I tried to explain to her that it wasn’t a disease but a symptom of her undiagnosed disease. Since then, I’ve met hundreds of people diagnosed with this convenient catch-all label and never demand anything more from their doctors. Dr. Miller thinks like I do and thank goodness he does and thank goodness my father taught me at a very young age to question everything. My father died from ALS and my stepfather died with MS and I now have neuro Lyme. Thanks to all the years of questioning my fathers’ diseases and the research I did, I didn’t waste any time seeking help for myself from my local Lyme Chapter to help me find a local physician, I believe that I would probably be dead or near death today if I hadn’t. But it frightens me to know that the average patient with no scientific or medical education like I had relies entirely on our medical doctors in our for profit medical industry to save them. .
- October 9, 2017 at 3:49 pm
Thank you for reading my blog. Dr. Miller’s message is spot on. So glad you didn’t settle and are getting treatment.
- October 10, 2017 at 5:31 am
Lonnie, I watched all of Dr. Miller’s videos, took notes and I learned so much!! Thank you for sharing his videos – I don’t know how I missed them. Dr. Miller is a true educator and so easy to understand. But this is why we need to keep sharing and researching. Even as often as I research, I still miss invaluable information like Dr. Miller’s. I’m still sick but I’m incorporating the Cowden therapies and acupuncture into my overall therapies which help tremendously. I was amazed at the effectiveness of the acupuncture. Seriously! After my first treatment, I had a healing crisis/herxheimer but the next morning I woke up without any pain. I was shocked and elated and began flapping my arms, jumping up and down, doing situps and stretching. That lasted for about 4 days and then I began to have mild relapse but overall I feel I’m improving and of course, adapting to my physical challenges. I don’t have insurance by choice which in many ways is a blessing because I don’t have that added expense on top of everything else I must buy that insurance won’t pay for and because my doctors are not handcuffed to insurance-dictated protocols. But, no one should have to choose between insurance and ethical quality health care.
- October 10, 2017 at 7:56 am
Well said, Liz. And yes, Dr. Miller is a great guy. I believe his years as a full teaching professor are what make his videos so easy to understand. Best wishes to you in you’re healing journey.
- October 9, 2017 at 9:13 am
My Mother was diagnosed with fibromyalgia in 1999, after two hospitals, many rehab facilities and at least thirty different doctors, of different specialties in two different states could not diagnose her “strange symptoms” which were “all in her head”. She was in and out of hospitals and rehabs for the rest of her life. My Mother died in 2006, still suffering with the “strange symptoms”. In 2015, I became very sick with “strange symptoms”. I was misdiagnosed by Urgent Cares, doctors and ERs for three months until I went to a TBIs literate doctor and was diagnosed with TBIs. I then realized that my Mother had TBIs. We both had identical symptoms! Same timelines! I also was told “it was all in my head”. My Mother had Medicare and “top of the line” health care plans. ALL of her medical needs were paid for in full, except for deductibles and co-pays. Now, eighteen years later, I am suffering from TBIs. The difference is, Medicare has refused to reimburse me for doctor, lab work, etc. So my “top of the line” Blue Cross/Blue Shield, GHI, SHIP, and AARP Long Term Health Care plans also refuse to pay or reimburse me. Now I have over $20,000 of out of pocket expenses. I am being hounded by bill collectors and collection lawyers. All the doctors recommended to me by Medicare are “not taking any more patients” or “I am out of network” or “doctor has opted out of medicare”. Here we are eighteen years later. WHAT A DISGRACE!!!!!!
- October 9, 2017 at 10:17 am
Have you tried Stephen Burners herbs, sweet wormwood and other natural remedies? I have chronic lyme and these things are helping me, so perhaps they may help you. Perhaps you can claim bankruptcy??? It is a DISGRACE!!!!!!!!! The country is paying for so many people to be on disability instead of insurance companies helping people to get well.
- October 9, 2017 at 12:08 pm
Thank you for your advice. I am still following what my TBIs doctor told me to do. All I do not have is antibiotics, followup and treatment. There is NO WAY I would file for bankruptcy. besides,Medicaid does not pay for TBIs either. I have paid into Medicare, Blue Cross/Blue Shield, GHI, SHIP and an AARP/Met Life Long Term Health Care Policy for over 50 years. Top of the line coverage, which because I was blessed with good health, UNTIL I was bitten by a tick.I rarely used. I did not smoke a tick, inject a tick, frolic with a tick in the woods, or engage in any other behaviors regarding ticks. If I had received timely treatment I would not be in this situation. I was told by urgent cares, ERs and doctors that I had an upper resp. infection and most of my illness “was in my head”. Finally I found a Bd. Certified, Congressional Advisor TBIs doctor, who saved my life. He has and is treating Presidents and president wanted to bes and their families. All I want is the same treatment they are receiving for their TBIs. We are paying for their health insurance with our taxes. Asked Medicare and a lot of other of our politicians why “we the people” are not entitled to the same. Haven’t yet received an answer, will continue to ask. As I said in my prior post, seventeen years later with little change. I was also taught we are treated by others how we allow them to treat us. I am going to continue to be a PIA!!!
- October 9, 2017 at 8:46 pm
I empathize, Phyllis. For 4 1/2 years, I’ve been in and out of treatment with oral and IV antibiotics; am now $30k in debt (charged my treatment to credit cards) and still sick. There’s no money for anything that insurance won’t cover, like herbals, supplements, alternative pain treatments, etc. How is it possible to have hope for the future when our ‘leaders’ want to take even more medical care away from us?
- October 10, 2017 at 5:33 am
And, they want to take away our natural remedies as well!
- October 10, 2017 at 8:20 am
Thanks all for your help and shared information. Keeps me semi sane that I am not alone in how I feel physically and mentally. We have to stick together! I have been contacting all my senators and representatives, by phone, mail, E Mail, etc.. We have to tell them what we want. It has to be done on a federal level. We have to demand that insurance pay for our medical needs. This is a basic human right! If we don’t pay for insurance we will be paying fines when we file our income taxes. The more I am reading these comments the more I am remembering about my Mom’s illnesses from TBIs. We were told she had dementia ( off and on which I found strange). Since I am “following in her symptoms” this is a worry. Thanks again everyone. You are tickling my brain!
- October 9, 2017 at 3:51 pm
Thank you for reading my blog. So sorry to hear of your mother. I do hope you are able to seek treatment.
- October 9, 2017 at 12:56 pm
Actually, the number of celebs with Lyme may be much greater than anyone has imagined. Glen Campbell, who of course sang with Kris Kristofferson, was diagnosed with the same thing Kris was diagnosed with.. Alzheimer’s Disease, but Kris found out otherwise in time, Glen never found out. I also suspect Robin Williams had Lyme given where he lived and grew up as well as his symptoms.
But aside from there not being any big money maker Pharma can push to treat Lyme, 3rd party payers will be on the hook for a lot if it were accepted that 20+% of Americans are infected with something so potentially devastating, where diagnosis is problematic, there is no consensus on treatment, and no lab confirmable outcome measures.
Guessing who is behind the obfuscation on this illness is like figuring out who was behind the JFK assassination, but eventually the truth comes out.
- October 9, 2017 at 3:53 pm
Thank you for reading my blog. I didn’t know about Glen Campbell. Hopefully by raising awareness we can alert others to the risks of misdiagnosis.
- October 10, 2017 at 5:45 am
Paul, I had the same thoughts about Campbell and followed his disease progression through the years. It would seem to me that they would have performed an autopsy since he had Alzheimers- do you know if one was performed? One thing that I’d like to mention re: dementia symptoms is that I’ve noticed that in my case and in many other Lyme patients including Kris Kristofferson is that we , unlike some other patients, know that something is wrong. I describe it as having Alzeheimers but knowing we do. I’ve suffered some pretty severe bouts of dementia that included, getting lost in my town, not remembering what car I drove, not remembering my own name and other personal details and yet ‘knew’ something was wrong with that even though I could do nothing about it at the time. I’m not an expert on dementia or Alzheimers but I wondered if all who suffer have some awareness in the beginning that they are dealing with cognitive dysfunction?
- October 10, 2017 at 9:18 am
Thank you Dr. Miller!!!
- October 11, 2017 at 10:24 pm
Re my fibromyalgia Lyme symptoms, I’m getting great relief from joint and muscle pain simply by taking a couple turmeric capsules every day. I get the turmeric powder from the health food store and dip empty 00-size capsules into it. Very simple, very cheap. Turmeric is a great anti-inflammatory.
- October 12, 2017 at 1:03 am
I have been suffering from amyotrophic laterals sclerosis (ALS) disease for the last three years and had constant pain, especially in my knees. my first sign that something was wrong, was my slurred speech. And then the inability to eat without getting choked, strangled, and coughing.Throughout my three years ordeal, i was able to walk with assistance nothing was really working to help my condition.I went off the riluzole (with the doctor’s knowledge) and started on amyotrophic lateral sclerosis herbal formula i ordered from Health Herbal Clinic, Just 7 weeks into the Herbal formula treatment I had great improvements with my slurred speech, there is no case of constant pain and chest tightness since treatment, visit Health Herbal Clinic official website www. healthherbalclinic. net or email info@ healthherbalclinic. net. This treatment is incredible!
- October 14, 2017 at 8:32 pm
Hellen, I looked up the Health Herbal Clinic and found it is in Johannesburg, South Africa. The testimonials on their website seem too good to be true. Please, does anyone else have knowledge of this clinic? Thank you.
- October 25, 2017 at 6:11 pm
I went to this site but was told the only way I could see the ingredients was if I purchased the formula. I would never order anything from anywhere without seeing label/ingredient/strength. Etc. I was so disappointed. I have late stage Lyme with many confections and desperately wanted to look into their formulas.
- October 12, 2017 at 1:26 am
Patients with Lyme disease: most therapies just focus on the symptoms and fight the spirochetes without involving the order of the system of your body.
None of you had been screened for disturbing foci, mercury-sensitivity, aluminum-sensitivity, a dental focus or may be a disturbing scar (tonsil), which influences the order of your system and the capability of the body to respond to therapy. This means, that you will have a different outcome, because the information, (energy,medications) , they are giving you, might not get there where it is needed.
The order of the system of a mercury-sensitive person (ApoE4), what most chronic Lyme patients are, is disturbed by chronic, daily exposure with traces of mercury by ingestion, inhalation and skin penetration. The infection with Borrelia can not be correctly counteracted and fought by the disturbed immune system, and the burden of the Borrelia infection and the unknowing new daily exposure of mercury weakens the body even further.
Medicine wants to add information antibiotics, supplements etc., find pathological, biochemical changes of the disorder , but the information is not carried to the place where it is needed, because the body is in a dysautonomic state, is out of order, and even more highly weakened by those invaders (they even have electron microscopic pictures of). It is like: You want to put tiles on a wall (treat Lyme) and someone is using a sledgehammer (mercury exposure) next door. It makes no sense in adding more and stronger glue (antibiotics, supplements); you have to stop the vibration of the sledgehammer first to be able to work in a field, which then is not disturbed.
The flair ups of the disease can only be explained by the incidence and level of new mercury exposure, because the level of borrelia is not changed from one hour to the next, like the symptoms change. All patients feel better with chelation, as long as the chelator doesn’t contain traces of mercury, and if the exposure is stopped or drastically reduced. For possible sources of mercury read my notes.
Herxheimer reaction is a dysautonomic reaction to acute mercury exposure (inhalation, ingestion or transdermal), it has nothing to do with release of toxins from killed spirochetes. It is a postulate by Dr Herxheimer, not a proven fact, everyone takes for granted.
If a factory is not organized and controlled, it doesn’t work.
Bring your system back in order, so that it helps to fight the disease.
That is why I teach my patients how to test for the ingredients, they are sensitive to, in each article they like to ingest, inhale or put on their skin.
- October 14, 2017 at 7:41 am
Thank you for reading my blog. While I agree mercury and other factors may be an issue for some patients, it is not always the case. As with all active bacterial infections (eg. syphillis, tuberculosis, strep…), antibiotics are used to halt the progression of the disease. A comprehensive practitioner will take into account all past exposures and integrate chelation (if warranted) into treatment. There are several methods for detecting heavy metals, including the “provoked” urine test.
- October 12, 2017 at 5:56 am
I appreciate your article and your insight but I think we have to be careful leading people to believe that everyone with Fibromyalgia may have Lyme Disease or that there is no appropriate treatment for Fibromyalgia. Although I agree that many people are misdiagnosed Fibromyalgia often involves multiple underlying factors that are not infection related at all. Issues like hormonal imbalances, poor sleep and nutritional deficiencies in combination can manifest as widespread pain with other associated symptoms and when properly evaluated is not a catch all diagnosis. With treatment that supports the underlying contributing issues, Fibromyalgia is very treatable. CFS and Fibromyalgia can certainly be symptoms of Lyme Disease but not always the case. Just as it’s dangerous to accept the IDSA approach to Lyme Disease it can also be just as dangerous to jump to the opposite side of the spectrum and assume everyone with these symptoms has Lyme Disease. As a mom with a daughter who has suffered with CFS and was successfully treated and a daughter with Chronic Lyme Disease I would just caution folks to stay open to all possibilities.
- October 14, 2017 at 7:59 am
Thank you for reading my blog, Denise and your thoughtful reply. As a Physical Therapist I have to agree with you on staying open to all possibilities. Too often though I see patients with a diagnosis of “fibromyalgia” as-if it is an illness when to me it is simply a set of symptoms. In most situations, we are able to find an event that triggered the situations–sometimes it is injury (head, neck, back, etc), other times it is a flu-like illness, but occasionally we can’t pin point the onset (maybe multiple underlying factors like you said.) Because the majority of Lyme patients are initially misdiagnosed, going 2+ years before getting proper treatment, Dr. Miller and I are simply recommending that Lyme disease be included in the differential diagnosis before giving patients a diagnosis of fibromyalgia or other neurodegenerative disease.
- October 14, 2017 at 1:25 pm
I’m afraid my PCP will think I’m nuts for asking to get this tested. How is one tested anyway, with just a blood test? What if it comes back negative? I’ll feel like a fool.
- October 14, 2017 at 5:13 pm
Laura, you have to be your own best advocate. Explain what symptoms you have and why you feel they are caused by Lyme. Don’t even worry about being “nuts” or foolish. It’s YOUR body and you know it better than anyone.
I had to demand the tests the first time I had Lyme (2007) and it was several months before I was treated with antibiotics.It took several years for most of the worst symptoms to go away. (I am blessed with otherwise extremely good health.)
Fortunately, my current PCP was aware of my previous Lyme, and when I came in complaining of fatigue, shortness of breath, etc., this summer, he ordered the full set of blood tests (ELISA, Western Blot) andgave me 10 days of doxy. When the ELISA came back, he said “Your test came back fine.” A week later, the Western Blot came back and he sent me immediately to the Communicable Disease doc who told me I had very high positive and started me on a more complete round of doxycycline.
- October 14, 2017 at 8:34 pm
I was tested through Igenex. You order the kit. It is free. Take to your doctor have them sign for it. Draw blood. Western Blot IgG and IgM. More accurate than most labs. Find a very reputable Lyme literate doctor. Llmd.
- October 14, 2017 at 6:49 pm
I received a diagnosis of chronic fatigue and fibromylagia only to be diagnosed later with Bartonella. It would be nice to mention in these articles that other tick-borne illness cause these same symptoms
- October 15, 2017 at 9:17 pm
My daughter had a horrible case of Bartonella. In fact, I think it caused more harm than the Lyme. I did a blog on Bart in 2016: https://www.lymedisease.org/cdc-identifies-new-species-of-bartonella/ I do need to do something more comprehensive on Bart. Thanks for the reminder.
- October 14, 2017 at 7:36 pm
i was diagnosed with fibromyalgia lately i am suffering and losing my mind I was at hospital for1 month back in 2001 they couldn’t find what had and then 1 year later with bells palsy I took the test here and i have all symptoms of lyme What should i do PLEASE HELP
- October 15, 2017 at 8:23 am
Dear Myriam, Do What dleland is saying. Find a doctor who is TBI literate. MAYBE you will find one who takes your insurance. Be aware Medicare, Medicaid and many other private insurance DO NOT PAY nor REIMBURSE for TBIs. I found out the hard way to the tune of nearly $30,000. Can’t afford to return for treatment to my TBI doctor, but at least know what I need to do. Once you know what you are dealing with, you will know how to deal with it. You only have ONE LIFE! I don’t think you want to live the rest of your life suffering with TBIs. Deal with one issue at a time. TAKE CARE OF YOURSELF! We are going to be “in the mess” we are in due to TBIs for a long time as we seem to just “preach to the TBIs choir”.
- October 15, 2017 at 8:10 am
The truth is slowly coming out and the powers that be can only hold on to their false claims and guidelines for so long.
- October 15, 2017 at 8:45 am
Dear Liz and others, Do not be afraid to question your doctor or any medical professional. If a doctor thinks you are a fool, CHANGE DOCTORS! They do not respect you! Doctors are only “practicing medicine” they haven’t got it perfect, yet! They are not “gods”. This is being said by someone who has numerous doctors and nurses in her family. I have been going to the same GP for over forty years. He “walks on water” in my mind!
- October 15, 2017 at 9:31 am
I cannot even get a test for lyme disease. My former Dr at the Fallbrook Ca health center was was annoyed I asked. I then called the health dept of SanDiego County , Ca . could not tell me where to get tested. They suggested UCSD but it takes 4 ever to get an appointment there and I don’t know if they will help. I have a fibro diagnosis, I had a tick scurry into the back of my calf approx 7 to 10years ago. I got it out but it was burrowing into my leg. A familt member has it in a northern Ca. And she has had a terrible battle with it. It is criminal that insurance won’t pay for it saying ” Its not a disease” Hence the name Lyme Disease. She has been through hell, more than once. We need it eradicated why can’t they release sterile ticks and wipe out ( without toxic, water polluting chemicals the infected ticks) , and COVERED so the huge cost of supplements, and the horrific antibiotics, malariia antibiotics and the side effects if one chooses that route. Our country should be ashamed of itself for allowing this suffering and doing n o t h i n g . Wildlife is existing with these on their 4 legged furry bodys now. With extreme fires burning NOW, if any wild animals survive, they will be on the move. with the ticks they are carrying.
- October 15, 2017 at 9:24 pm
I suggest you seek an ILADS trained doctor and at least get an evaluation. While testing can be confirmatory a negative test for Lyme does not rule out an infection because not all patients will develop the antibodies necessary for the test to show positive. You can fill out our symptom check list, print and take it with you to your doctor. We have a list of reputable laboratories here:https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
- October 15, 2017 at 2:04 pm
I have had what I think is Chronic Lyme Disease for 10 or 12 years. My neurologist has me on Intravenous Immunoglobulin about once a month. is anyone else doing this?
- October 15, 2017 at 9:27 pm
I am aware of many other patients on IVIG however I believe it is typically administered after completing antibiotic treatment. If you contact an ILADS doctor they will be much more familiar with this protocol.
- October 15, 2017 at 9:01 pm
I am 100% positive that she has gadolinium deposition disease from all of her mri scans with gadolinium contrast. Someone needs to tell her so she can get treatment before she dies from it.
- October 16, 2017 at 1:16 am
Dr D Klinghardt suggests an order of treatment for the various co-infections of tick-borne disease. He doesn’t like to call it Lyme disease.
- October 16, 2017 at 12:15 pm
After watching the You Tube video by doctors Jean J. Barry, M.D. and A. Miller, M.D., I agree with Dr. D. Klinghardt, Lyme Disease label is too limited. That is why I refer to my illness as TBIs. I KNOW how New York City rats live, what they eat, and WHAT must be in their blood that is being sucked up by ticks and vomited into us! Way beyond Lyme!
- October 16, 2017 at 3:15 pm
Does it really matter what ‘the label’ is? Michael J Fox is known as having Parkinsons BUT I have the newspaper article from 1993 in which David Letterman asked him about his “Lyme diagnosis” and Michaels’ reply was “I live in CT, what do you expect?” I just call all of these “degenerative, neurological disorders” and need (as a Holistic Dr., ND) to build the immune system, detox the body, nourish it and you will create a healthier human being. Period. I know because I almost died from lyme and its’ co-infections. My whole family and husband as well as my mom and dad. No, we all did not all grow up in the woods…..
- October 17, 2017 at 8:55 am
Unfortunately, the label does matter to Medicare, Medicaid, and other insurance plans which do not pay for “LYME” and one is paying out of pocket for hospital, doctors, etc. to the tune of tens of thousands of dollars. I my insurance plans, my nephew’s insurance plans were paying our bills I would not care what they said we have.
- October 20, 2017 at 7:40 am
I suspect that I have Lyme disease. I was diagnosed with fibromyalgia 20 years ago, but the symptoms are getting worse and new ones are showing up. I even remember the tick bite when I came back from camp, I didn’t know what it was at first because the tick was very small and there were red rings on my skin. I showed my mom and she said it was a tick, and that it bit sensitive skin, so not to worry about it. We did not know about Lyme disease back then.
I had to have my tonsils out the next year, and I had unusual swelling in my knees in high school, so much so that they would have to drain fluid, but the could not find anything wrong. I eventually went to a rheumatologist because I was having trouble walking at times. He diagnosed me with “Conditional Arthritis” I have neuropathy in my legs and feet, but no blood sugar problems. I am starting to experience times of cognitive problems as well.
I explained this to my doctor and he did the standard Lyme test, but of course it was negative, that was 40 years ago. I really don’t know where to turn at this point.
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