posted
I had been on percocet for mis-diagnosed MS, and disc issues for many years. The pain was tolerated by narcotics perscribed by my Neuro. First, (and only) spinal tap was taken 4 months ago, and came back Neg for MS, but Positive for lyme. My neuro tells me that a confirmatory test on spinal fluid using the western blot, came back neg. Therefore he says I don't have lyme. My blood work was Neg. I have been off percocet for 2 weeks now, and he's saying my burning skin, ringing in one ear, vertigo, shaking hands, and leg and arm weakness is withdrawl. Does this make any sesce to anyone? Thank you
Posts: 43 | From Suffolk County | Registered: Mar 2007
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posted
I will get my results, and yes thank you, I will post them. Thank you for helping
Posts: 43 | From Suffolk County | Registered: Mar 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Locally over the years we have had over a dozen people with MS treated for Lyme and all have been responsive- all treated with IV Rocpehin longterm- and a couple of those developed MS AFTER getting Lymed (and one ALSer got Lymed and then developed ALS)(actually I forgot- 2!! 2 of our 4 ALSers had previous Lyme diagnoses!!! years pre ALS!) ANYWAY- MANY of those people had no positive tests at all!!! Here is my favorite MS story from the old Lyme Alliance site-
**************** Our Story By Joseph P. Orban, III
Over the past year, I have been touched by Lyme disease in many ways.
Little did I know that Lyme Disease had played a part in our family for over 15 years.
This past February, I started to become very dizzy and had a mental fog. Unable to concentrate, I soon dropped out of my masters degree program, which I was attending after work. As the weeks went on, my dizziness turned into a profound "seasickness" feeling that lasted for weeks. Unable to eat much, I started to lose weight. Soon I started to have anxiety problems, blurred vision, memory loss, weakness on my right side, and flushing. In time, I started to have profound feelings of faintness.
One night, I ended up in the emergency room because I could barely keep from passing out. I had noticed how my symptoms would come and go, just as if someone had flipped a switch. Up until February, I was very happy with everything in my life, and all was going well. Suddenly, at 27 years old, my life was falling apart.
After about three months of numerous tests, (including Lyme tests, which I asked for) nothing was showing up. Not once did the doctors mention Lyme disease, even though many of the medical technicians who administered the tests mentioned it. My doctors were perplexed. At first, they told me it was an inner ear virus.
As time went on, my primary care physician started inferring there were psychological reasons for my illness. He often pointed toward work as a source of stress. I was adamant about the fact that I loved my job as an engineer, and found work to be very enjoyable. In fact, it was my inability to concentrate on projects I had handled with ease just months before that led me to believe there was a physical problem.
Something didn't fit the picture. It all came to a head when he wanted to prescribe an antidepressant.
It wasn't until I started looking around on the Internet to find what could possibly be making me so sick that I found a newsgroup about Lyme disease. I couldn't believe that others were out there with the same problems I had.
Through the net, I also started to meet many people with multiple sclerosis who actually had Lyme.
I had spent the past fifteen years watching my mother slowly digress from the effects of chronic progressive multiple sclerosis. Over the years our family had grown together to help her as best we could. She is now barely able to move her arms, and is confined to an electric wheelchair. I would read these stories to her, with the hope that maybe a miracle could fall upon our family. That was a major turning point for my family and I.
With the help of the Lyme Disease foundation, I found a very knowledgeable doctor who has since helped me immensely. He gave me the latest Lyme tests, which were positive. I am now on IV treatment, and look forward to a recovery in the future.
My Lyme doctor was very interested in my mom's health history. As a young girl growing up in Connecticut, she had rheumatic fever and was given penicillin as a prophylactic treatment to prevent strep throat.
She maintained a daily pill of penicillin for the next twenty years. In 1981, at her doctor's recommendation, she stopped taking penicillin. He told her he wasn't totally sure she ever had rheumatic fever so many years before. It was that year she began to lose strength in her leg. After many doctors and a few years later, mom was finally diagnosed with chronic progressive multiple sclerosis.
Over the years, she had strange growing rashes and periodic hair loss, which no doctor could explain. She had a Western Blot Lyme test in the late 80's, which we were told was negative.
Recently, we made her an appointment with my new Lyme doctor. He gave her the latest round of current Lyme tests, which to our amazement came back positive.
One evening, I came home to find my parents both taken by emotion.
After asking what was wrong, she told me that the antibiotics were helping her. Throughout the fifteen-year battle to fight her disease, not once did anything help her. After many months on antibiotics, she has begun to move her toes and fingers something she had lost the ability to do many years ago. Although the road ahead will be a long on, we now have hope that had all but disappeared over the years. She is grateful to be given the opportunity for improvement.
Over the past year, I have spent a lot of time reading about the different aspects of this disease; diagnosis, treatments, politics and scientific advances. Although many people are led to believe it is an arthritic disease, it is a multi-systemic infection. In my case, it attacked my neurological system. I never had one ache from it. Another misunderstanding is the interpretation of the more common antibody tests. When people take any sort of medical test, most automatically believe they are very accurate. My experience has taught me otherwise. I can only imagine the national uproar if the HIV test was as unreliable. We need more government support for education, insurance legislation to protect those who need treatments, and funding for additional treatment research. It is my hope that our experience will inspire others to educate themselves about the many complexities of this disease.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I had two spinal taps, and both were negative for lyme. The only test that picked up a positive lyme titer was the ElISA by Igenex.
Many of us never test positive for lyme, but the llmd make a clinical diagnoses.
Posts: 1603 | From ny | Registered: Aug 2006
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I too have a MS diagnosis. I never had a spinal tap for a diagnosis yet MRI's determined my fate.
Years later, I began reading about the similarities of Lyme and MS.
I found a LLMD had a Western Blot done through IgeneX and although I tested Negative -CDC criteria- I did have bands that were positive!! and happily threw away my daily injectable CRAB drug.
More importantly, I have and had "symptoms" of Lyme disease over the years.
Please remember that like MS, Lyme is a clinical diagnosis!!! Don't let any doctor tell you what your body is telling you.
Take an antibiotic challenge, and listen to your body. Do you herx? Do you recover and begin to feel better? I believe there lies your answer.
Positive Spinal? Like Tuu and others said, consider yourself lucky...you really do have an answer.
Continue to read and educate yourself about Lyme disease. Become your own advocate, and welcome to the world of healing!
This isn't an easy road, but a road well traveled back to health.
Best to you, tory
Posts: 158 | From PA | Registered: Oct 2006
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posted
Thank you both. I am really confused about the spinal tap. Majority of people tell me it's the number 1 indicator, yet i read and hear about dr.'s who don't really on it at all. My own dr. said at first it was the number 1 indicator, it was positive. Then he did a western block on the spinal fluid that came back negative, and then said i don't have lyme. I don't know now what to do, but thank you for your imput. Armand
Posts: 43 | From Suffolk County | Registered: Mar 2007
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posted
Apoligy, didn't see additional post. Yes I do Herxd, I can be reaonably well for a period of time, than feel lousy for a while. My Neuro said that this was M/S of the relapsing type! I lived with that for 18 years. My new Neuro is trying to say if a confiratory trst, Western Block, came back negative, I don't have Lyme and he won't cosider treatment. I found a doctor in plainview new york, who feels I have the disease and want's to treat. I am really in a fix now, I don't know what to do.
Posts: 43 | From Suffolk County | Registered: Mar 2007
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As a MS gal, and there are so many others like me here.....
Please continue to read the links that Tuu provided. It can be overwhelming for sure. BUT, the good news is this:
seek out a good lyme literate doctor. Consider it a second opinion.
If you only stick with your Neurologist OF CourSE he will tell you you don't have lyme. Why would he want to lose you as a patient?
On the other hand, when you see a llmd, they will test you -using a lab that tests for all the bands- IgeneX is the likely lab of choice, BUT they will then put you on an antibiotic challenge and allow your body to give you your answer! It's called a Herxheimer reaction. If you harbor a bacteria and/or a co-infection to Lyme; you will HERX!
Big difference..give your body a chance to tell you the problem? or let a doctor tell you the problem because of a test result!
Always keep in mind that MS like Lyme is a clinical diagnosis! Meaning there isn't ANY test that is 100% conclusive.
take a deep breath, read and then read some more, and call a llmd.
good thoughts, tory
Posts: 158 | From PA | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Get a LLMD and get copies of all your tests and take them to the LLMD and get treated .
The reason western blots and or elisa's or any other test looking for antigens can be possitive or in your case negative is the the ability of lyme spirochete to evade immune responce and hide from immune responce and then get recognised is the reason for having some possitives and some negatives in the progression of the disease even when you have a raging infection you can produce a negative western blot or any antigen test.
Get treated and get a LLMD the longer your infected the harder to get rid of it even years of treatment on abx's by a knowledgable LLMD may not get it But at least life is preserved.
Heres some info:
SPIROCHETE LOAD AND IMMUNE SUPPRESSION IN LYME DISEASE
The spirochete load has a direct bearing on the severity of Lyme presentation. Low spirochete loads result in mild or even inapparent infections that can be missed and remain present for years. As spirochete load increases, especially from subsequent tick bites, the morbidity of Lyme increases. Symptoms become apparent and more debilitating the larger the load, and testing for Lyme can become more accurate. Studies have shown that higher loads also begin to clinically impact the immune system, with invasion and killing of B- and T-lymphocytes, including Natural Killer Cells, and inhibition of lymphocyte transformation and mitogenesis. A corollary to the issue of spirochete load is the delicate balance between defense efficacy vs. pathogen strength. In other words, more severe illness also results from weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
The longer one is ill with Lyme, the more likely the illness will be more severe and treatment resistant. The same studies that demonstrated lymphocyte inhibition and lysis from high spirochete loads also demonstrated increased negative effects on the immune system the longer the spirochetes were present. We have seen this clinically, with the ultimate result being full blown Chronic Lyme Disease.
CO-INFECTION
A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in Lyme patients of co-infection with multiple tick-borne pathogens. Significant numbers of Lyme patients have been shown to also carry Babesia species, Ehrlichias, Anaplasmas, Mycoplasmas, Bartonellas and viruses. Rarely, yeast forms have been seen in peripheral blood. Studies have shown that co-infection results in a more severe clinical presentation, with more organ damage, and the pathogens become more difficult to eradicate. It is known that Babesia infection, like Lyme Borreliosis, is immunosuppressive. There are changes in the clinical presentation compared to when each infection is present individually, with different symptoms, and atypical signs. There may be decreased reliability of standard diagnostic tests, and most importantly, there is recognition that chronic, persistent forms of each of these infections do indeed exist. As time goes by, I am convinced that even more pathogens will be found.
Therefore, real, clinical Lyme as we have come to know it, especially the later and more severe presentations, probably represents a mixed infection. I will leave to the reader the implications of how this may explain the discrepancy between laboratory study of pure Borrelia infections, and what front-line physicians have been seeing for years in real patients.
The evaluation of a Lyme patient must begin with testing for all currently known tick borne pathogens. Serological studies for Borrelia, Babesia Bartonella and Ehrlichia should be combined where appropriate with direct antigen assays. Antigen detection tests (antigen capture and PCR) are especially helpful in evaluating the seronegative patient and those still ill or relapsing after therapy. Unfortunately, over a dozen protozoans other than Babesia microti can be found in ticks, yet commercial tests for only B. microti and WA-1 are available at this time, so as in Borrelia, clinical assessment is the primary diagnostic tool. In Ehrlichiosis, test for both the monocytic and granulocytic forms. Many presently uncharacterized Ehrlichia-like organisms can be found in ticks and may not be picked up by currently available assays, so in this illness too, serologies are only an adjunct in making the diagnosis.
Babesia are parasites, and I suggest that if a coinfection is found involving this organism, treat this first, so that subsequent therapy for the other pathogens will be more effective.
COLLATERAL CONDITIONS
Experience has shown that collateral conditions exist in those who have been ill a long time. The evaluation should include testing both for differential diagnosis and for uncovering other subtle abnormalities that may coexist.
Test B12 levels, and be prepared to aggressively treat with parenteral formulations.
Pituitary and other endocrine abnormalities are far more common than generally realized. Evaluate fully, including growth hormone levels. When testing the thyroid, measure free T3 and free T4 levels and TSH. Nuclear scanning and testing for autoantibodies may be necessary.
Activation of the inflammatory cascade has been implicated in blockade of cellular hormone receptors. One example of this is insulin resistance, which may partly account for the dyslipidemia and weight gain that is noted in 80% of chronic Lyme patients. Clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels. In addition to measuring free T3 and T4 levels, check basal A.M. body temperatures. If hypothyroidism is found, you may need to treat with both T3 and T4 preparations until blood levels of both are normalized.
Tilt table testing is another powerful tool which, just as in CFIDS, may demonstrate neurally mediated hypotension (NMH). NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. This test should be done by a cardiologist and include Isuprel challenge. This will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and sympathetic dysfunction. Therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added based on response to the Isuprel challenge.
Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but most need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared.
SPECT scanning of the brain, if done by knowledgeable radiologists using high resolution equipment, will show characteristic abnormalities in Lyme encephalopathy. What these scans demonstrate is cerebral vasculitis, which is the underlying mechanism for much of the symptoms of Lyme. This not only helps with the differential diagnosis, but if done before and after acetazolamide, it will guide in the use of vasodilators, which may clear some cognitive symptoms. Therapy can include acetazolamide, serotonin agonists and even Ginkgo biloba. Therapeutic trials of these may be needed.
Two different researchers have provided evidence that B. burgdorferi, like many other pathogenic bacteria, can produce neurotoxins. Early clinical trials aimed at removing these toxins have proven quite promising. I will discuss this in more detail in a later section.
DIAGNOSING LATER DISEASE
When reactive, serologies indicate exposure only and do not directly indicate whether the spirochete is now currently present. Because Bb serologies often give inconsistent results, test at more than one laboratory using, if possible, different methods. The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots -- but be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection. When late cases of LB are seronegative, 36% will transiently become seropositive at the completion of successful therapy.
Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the most specific but appear later or may not appear at all. You need to see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic.
PCR tests are now available, and although they are very specific, sensitivity remains poor, possibly less than 30%. This is because Bb causes a deep tissue infection and is only transiently found in body humors. Therefore, just as in routine blood culturing, multiple specimens must be collected to increase yield; a negative result does not rule out infection, but a positive one is significant. You can test whole blood, buffy coat, serum, urine, spinal and other body fluids, and tissue biopsies. Several blood PCRs can be done, or you can run PCRs on whole blood, serum and urine simultaneously at a time of active symptoms. The patient should be antibiotic free for at least six weeks before testing to obtain the highest yield.
Antigen capture is becoming more widely available, and can be done on urine, CSF, and synovial fluid.
Sensitivity is still low, but specificity is high.
Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb most commonly are found in Lyme meningitis, but are rarely seen in non-meningitic CNS infection, including even advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 20% of patients with late disease. Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb antigens or nucleic acids are present. It is especially important to look for elevated protein and mononuclear cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.
I strongly urge you to biopsy all unexplained skin lesions/rashes and perform PCR and careful histology. You will need to alert the pathologist to look for spirochetes.
RISK PROFILE (PLEASE CHECK)
Tick infested area ___ Frequent outdoor activities ___ Hiking ___ Fishing ___ Camping ___ Gardening ___ Hunting ___ Ticks noted on pets ___ Other household members with Lyme ___ Do you remember being bitten by a tick? No ___ Yes ___ when ________ Do you remember having the ``bull's eye rash?'' No ___ Yes ___ Any other rash? No ___ Yes ___
Have you had any of the following? CIRCLE ALL YES ANSWERS
Unexplained fevers, sweats, chills, or flushing Unexplained weight change (loss or gain -- circle one) Fatigue, tiredness, poor stamina Unexplained hair loss Swollen glands: list areas _______________________________________________ Sore throat Testicular pain/pelvic pain Unexplained menstrual irregularity Unexplained milk production; breast pain Irritable bladder or bladder dysfunction Sexual dysfunction or loss of libido Upset stomach or abdominal pain Change in bowel function (constipation, diarrhea) Chest pain or rib soreness Shortness of breath, cough Heart palpitations, pulse skips, heart block Any history of a heart murmur or valve prolapse? Joint pain or swelling: list joints _________________________________________________ Stiffness of the joints or back Muscle pain or cramps Twitching of the face or other muscles Headache Neck creaks and cracks, neck stiffness, neck pain Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity Facial paralysis (Bell's Palsy) Eyes/Vision: double, blurry, increased floaters, light sensitivity Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity Increased motion sickness, vertigo, poor balance Lightheadedness, wooziness, unavoidable need to sit or lie down Tremor Confusion, difficulty in thinking Difficulty with concentration, reading Forgetfulness, poor short term memory, poor attention, problem absorbing new information Disorientation: getting lost, going to wrong places Difficulty with speech or writing; word or name block Mood swings, irritability, depression Disturbed sleep -- too much, too little, fractionated, early awakening Exaggerated symptoms or worse hangover from alcohol
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Armand.
Hope we haven't drowned you in information.
But in order to regain your health, you have to know more about lyme than your neuro.
Fortunately, this is easy!
Here's a couple scientific articles related to how AWFUL the western blot can be when performed by standard labs. Too bad your neuro doesn't know about these studies. This is not hogwash but FACT. It's one of the reasons why so many people fall through the cracks.
Don't be one of them, please!! I have the "MS presentation" also but I don't have MS. You've already tested positive for lyme and no way could it get into your spinal fluid without being in your body!
Michelle
________________________________________
Performance of 45 laboratories participating in a proficiency testing program for Lyme disease serology. Authors: Bakken LL, Case KL, Callister SM, Bourdeau NJ, Schell RF Source: JAMA 1992 Aug 19;268(7):891-5 Organization: Wisconsin State Laboratory of Hygiene University of Wisconsin Madison 53706.
Abstract: OBJECTIVE--We show that significant interlaboratory and intralaboratory variations exist in Lyme disease proficiency testing.
DESIGN--Six case-defined Lyme serum samples and three serum samples from individuals with no history of Lyme disease were randomized in four shipments and distributed to 45 participating laboratories.
RESULTS--Interlaboratory and intralaboratory performances were highly variable. Approximately 4% to 21% of laboratories failed to identify correctly positive serum samples with titers of 512 or more using polyvalent serum or immunoglobulin G conjugates. With lower levels of anti-Borrelia burgdorferi antibody in the serum sample, approximately 55% of participating laboratories did not identify a case-defined serum.
CONCLUSIONS--Our results indicate that there is an urgent need for standardization of current testing methodologies. Until a national commitment is made, serological testing for Lyme disease will be of questionable value for the diagnosis of the disease. _________________________________________
"...The routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding.
They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990).
Posts: 3193 | From Northern California | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
He had only negative Lyme tests and a negative spinal!!! He believed he had Lyme because he had a tick bite and bulls-eye rash and onset of progressive neuro illness. He died bedridden at age 36 after he could no longer walk and was going into dementia.
His mother and widow sent brain and tissue samples to Dr. Paul Duray at the NIH.
Dr. Duray found Lyme spirochetes in his heart and brain.
Glenn Killion was right.
That is not the way you want to be right.
Lyme disease is a clinical diagnosis because serology and spinals can BE NEGATIVE but you can still have it. Glenn Killion proved it.
I still cry every time I see his page. His mother btw Beverly who was a great Lyme advocate died recently- she was a wonderful wonderful woman who loved her son very much and who made Lyme disease advocacy her life after his death-
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
OK..."Tincup" is better at this than me....But a spinal tap is like having a swimming pool full of ping pong balls. If you dip in and find NOTHING, you still have ping pong balls in the pool.
If you dip in and FIND ONE, then you for SURE HAVE ONE.
If you FOR SURE have one, why do another test to DISPROVE your findings??
If the spinal tap comes back negative, you've proved NOTHING. You still have ping pong balls in the pool!
That is one reason this is not the best test....UNLESS it comes back positive!
The opportunity for MISSING the ping pong balls is enormous.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thank you all for this information. I have learned so much from you people. If it weren't for you I may have accepted his final diagnosis of no LD and gone on living with miserabl symptons. Armand
Posts: 43 | From Suffolk County | Registered: Mar 2007
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quote:Originally posted by Kings Park: If it weren't for you I may have accepted his final diagnosis of no LD and gone on living with miserabl symptons. Armand
Armand, That's exactly what we are here for! We want to keep others from the same fate we were handed.
Many of us were ill for years and are grateful for finding the REAL answer to our problems!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I will never forget the woman I met in my LLMD's office who had been diagnosed and treated for MS for 18 years by a prominent specialist in the field. (major Boston hospital)
She had spent 6 months confined to a wheelchair and someone suggested she ought to be tested for lyme. She had been treated by my LLMD with IV antibiotics for the past six months, and was walking without any trouble and was so glad she had listened to someone familiar with lyme!!!
Your neuro sounds like lots of other neuros I have been hearing about for years. It is sad...but so very true. Our inclination is to believe what our doctors and specialists tell us. But after you have been through the lyme mill, you come to realize where they belong...
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