My symptoms at the time were tingling sensations in my hands and legs, which were accentuated by being tired or nervous.
There is no history of MS in my family but I did fracture my T-11 vertebrae in a ski accident in 1992.
I have been been on Avonex since 1998; I continue to live a very full life and am completely ambulatory - however, I can not run.
Through a friend of mine, who has lyme, I recently learned that Lyme is sometimes incorrectly dxed as MS. During my intial dxed, I was tested for lyme at Quest - a very simple test.
My friend encouraged me to go to lyme specialist to pursue this line of question. I have an appointment for next week.
Does anyone have any thoughts on this matter. Your insights would be greatly appreciated.
posted
You didn't mention the result if your Quest test. I was dxed with MS 2 years ago after finding one lesion in my neck. I had sx for 18 years and neurologists always seemed perplexed when I recounted the sx. I had a Western blot test and it was sent to Quest by my well-meaning internist last year. Actually after I found the last tick on me 8 yrs ago, realizing it was a deer tick, I asked for a lyme test and was talked out of it. (Well-meaning again.) Last month I repeated the Western blot with the same internist and sent it myself to Igenex. Positive. Four years ago I realized that I could no longer run. Now I am touching walls to walk and keep my balance.
I refused Avonex through my whole ordeal because I just could not agree with "modulating " my immune system, which actually suppresses it, instead of strengthening it. Tx for MS is the opposite for lyme, so the sooner you test CORRECTLY, the better to be sure you are following the best protocol for your situation.
I wish you much success in your journey. Mine has been rich and I continue to learn and grow from it. Ilene
Posts: 830 | From Colorado | Registered: Mar 2005
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quote:Originally posted by aliyalex: You didn't mention the result if your Quest test. I was dxed with MS 2 years ago after finding one lesion in my neck. I had sx for 18 years and neurologists always seemed perplexed when I recounted the sx. I had a Western blot test and it was sent to Quest by my well-meaning internist last year. Actually after I found the last tick on me 8 yrs ago, realizing it was a deer tick, I asked for a lyme test and was talked out of it. (Well-meaning again.) Last month I repeated the Western blot with the same internist and sent it myself to Igenex. Positive. Four years ago I realized that I could no longer run. Now I am touching walls to walk and keep my balance.
I refused Avonex through my whole ordeal because I just could not agree with "modulating " my immune system, which actually suppresses it, instead of strengthening it. Tx for MS is the opposite for lyme, so the sooner you test CORRECTLY, the better to be sure you are following the best protocol for your situation.
I wish you much success in your journey. Mine has been rich and I continue to learn and grow from it. Ilene
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I do not know what type of drug avonex is.
I do know that steroids can suppress the immune system, and thus make lyme symptoms worsen.
In my case, I had dormant lyme in my body (probably for 10 years). One (!) steroid shot to my knee was enough to suppress the immune function in that joint and cause the lyme bacteria there to "waken" and within 3 weeks my bizzare symptoms started.
It took me a year and a half to figure out that it was lyme!
I've attached an article on steroids and lyme, that might be of use to you....Tina
Antibiotics and Steroids From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada Lora Mermin, editor
by John Drulle, M.D. "Corticosteroids, or steroids as they are commonly called, are very important drugs in a wide variety of medical conditions. They exert an anti-inflammatory effect and suppress the immune system. This may be life saving in some diseases such as asthma and malignancies. On the other hand, steroids are rarely curative, and are associated with harmful side effects if used for prolonged periods of time. These include bone loss, cataracts, sodium retention, weight gain, abnormal fat distribution and predisposition in other infections. "The use of steroids in infectious diseases has always been controversial. It is well known that steroids can reactivate dormant tuberculosis infections. Recent studies have shown that in meningitis infections steroids may decrease the incidence of post infectious complications. However, in cases of septic shock, their ability to improve survival rates is dubious. We have been traditionaly taught that in bacterial infections an intact, well-functioning immune system is necessary in order to recover. Steroids in the face of bacterial infections may alter the prognosis and in tuberculosis may actually increase the risk of fatality. "Since Lyme is a bacterial infection, the question naturally arises as to what is the role of steroids in Lyme disease. Before the bacterial nature of Lyme was discovered, it was common to treat the arthritis complications and heart blocks with steroids. Early reports suggested that the heart blocks responded well to the steroids. However, in one report dealing with patients with Lyme arthritis, steroid injections into the joints prior to antibiotic therapy were associated with a worse prognosis when antibiotics were finally given. We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients. "It is interesting to note that in dogs who had Lyme disease, injections of dexamethasone, a corticosteroid, enabled Borrelia burgdorferi to be cultured from blood drawn on the following day. This was done by Dr. Elizabeth Burgess at the University of Wisconsin. This suggests that the steroid suppresses a mechanism for keeping the bacteria out of the circulatory system, since ordinarily it is difficult to grow the Lyme organism from the blood. Entrance of the bacteria into the bloodstream can allow seeding of other organs. "I have used steroids in Lyme patients, but only in very selected circumstances. In patients who have presented with eye involvement with rapidly deteriorating vision, such as optic neuritis or uveitis, the combination of high dose steroids appears to restore vision more rapidly than by using antibiotics alone. I have also used steroids in combination with antibiotics in patients who presented with a Lyme induced polymyalgia rheumatica (PMR). "PMR is a common disease of elderly people characterized by pain and stiffness in the muscles of the upper arms and legs, fevers, malaise and weight loss. The ESR, sedimentation rate is elevated. In its classic form, the cause of the condition is unknown, and the dramatic response to steroids is in itself diagnostic. I have personally seen three cases of Lyme induced PMR, which did not respond to steroids alone or antibiotics alone, yet when the combination was given the response was dramatic. "In conclusion, the decision to use the steroids in a Lyme patient must be given considerable thought and the possible benefits must be weighed against the risks. I would not use steroids unless the patient was also on antibiotics."
The following information has been added by J. Gruber: * JD Bleiweiss "When to Suspect Lyme" * JJ Burrascano "ADVANCED TOPICS IN LYME DISEASE - DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES" o specifically his chapter "Course During Therapy" * Links provided by A Doherty o http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html#J-H o http://www.geocities.com/HotSprings/Oasis/6455/newsgroups-links.html * J. T. M. FRIELING et al., Differential Induction of Pro- and Anti-Inflammatory Cytokines in Whole Blood by Bacteria: Effects of Antibiotic Treatment, ANTIMICROBIAL AGENTS AND CHEMOTHERAPY, July 1997, p. 1439?1443 Vol. 41, No. 7 * Burrascano's Guidelines and Immune Response Modeling o J Gruber, Burrascano's Guidelines and Immune Response Modeling o J Gruber, Evaluation of the long-term inflammation in neuroborreliosis o J Gruber, Lyme Disease: Statistical Evaluation of a Symptom Log and an Empirical Theory of Flare Cycles * Andrew R. Pachner, Lyme Borreliosis in Rhesus Macaques: Effects of Corticosteroids on Spirochetal Load and Isotype Switching of Anti-Borrelia burgdorferi Antibody, Clinical and Diagnostic Laboratory Immunology;Vol.8, No. 2, (March) 2001: 225-232
posted
My story is very similar to yours. I was dx with MS in 1999 after almost 10 years of undiagnosable symptoms.
I took Avonex for 3 years after my diagnosis. I stopped when I realized it was making me very depressed and physically miserable too.
In early 2004 I read an article about Lyme being mis-dx as MS. I subsequently tested positive with both Bowen and Igenex Lyme tests.
IMO Avonex is the worst kind of drug you can take if you have Lyme (or MS). It supresses the immune system so we feel better in the short term. But in the long term the bugs get out of control and then you really have problems.
I'd be happy to elaborate on my experiences, feel free to email me for more info.
posted
I was misdx with MS a few years ago. I went on copaxone which made me sicker. Then steroids which made me even worse.
I got the proper test sent to a lab other than quest- which doesn't test deeply enough, came back positive as Lyme. Got treated for Lyme with 9 weeks of antibiotics. My "MS" lesions have disapeared and I am much better.
Good Luck!
Posts: 79 | From Baltimore, MD, USA | Registered: Dec 2003
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
First,
Let me say that Lyme and MS are not always either/or. You can have MS caused by Lyme.
Chances are that the test you were given is a simple antibody test. I assume (since you have been diagnosed with MS) that you have been given steriods. Once you are given steriods, your antibody production can go down to nil. You would automatically have a false negative Lyme antibody test.
quote:Originally posted by LaureenP: I was misdx with MS a few years ago. I went on copaxone which made me sicker. Then steroids which made me even worse.
I got the proper test sent to a lab other than quest- which doesn't test deeply enough, came back positive as Lyme. Got treated for Lyme with 9 weeks of antibiotics. My "MS" lesions have disapeared and I am much better.
posted
LaureenP - I hope that my prognosis is the same as yours.
I am a professional who works fulltime and I feel that for the last 8 years, I have been doing everything with one arm tied behind my back. If I can get my health back, I will consider it to be a miracle and will further dedicate myself to making the world a better place to live.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hey there, it's me, your friend. I know you will get better. And give much to the world .
If you can you should go to that conference in Connecticut--you'll learn a lot very fast, and you can probably ask questions there too. I don't know how far Farmington is from where you live. I emailed the info to you.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Yeah, I'm on disability for MS. My first symptoms were in '97. I had a brain MRI in sept. of '03, after I got double vision. Never took MS drugs but used steroids a few times,& they worked. Researched, & was tested for Lyme at igenex. Came back equivocal, on the blood. Close enough for me. Anyway, I'm 6 months in on abx, & my eyes are 99% perfect now, they were a mess before. I had a relapse in January, & took steroids(against advice on here) ,they didn't work. I'm healing, thank you lymenet! Every week I learn more on here.
Posts: 103 | From LAS VEGAS | Registered: Oct 2004
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posted
The lyme doc has me on Vantin, & added Flagyl awhile back. 750mg of Flagyl a day on 5days off 2days...The Vantin is 400mg a day everyday..... I've got nuero probs, but I plan on getting back to 80-90% in 2 years of treatment. I'm 6 months into it now.
Posts: 103 | From LAS VEGAS | Registered: Oct 2004
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posted
Thanks. I have neuro issues, too. Only on doxy and rifampin and at the slightest herx I have to back off. Next I go to Ceftin then heparin, zothromax, flagl, clinamycin and quinine rotated with Biaxin.
My LLMD doesn't seem to double up. It has been 7 weeks and all I have seen is swolen glands and more weakness, I fell and broke my kneecap. Ugh.
It is good to hear of people with neurosx improving. Thanks.
Posts: 830 | From Colorado | Registered: Mar 2005
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posted
Hang in there Aliyalex, I fell in Feb., jacked my knee & ankle in the same fall.....It's 90% healed now. The Flagyl is a cyst popper, The Vantin kills the stuff... Tell your LLMD to get on the bus...you need both.....I think..:-)
[This message has been edited by EZ-E (edited 30 April 2005).]
Posts: 103 | From LAS VEGAS | Registered: Oct 2004
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posted
I hope you're not going to a MD who is affiliated with the "expert" Allen Steere. It's very important to see a MD who is not affiliated with HMO "consultants".
Don't take steroids.
Delayed diagnosis and treatment may make it more difficult to become functional.
If you can, try alternitive treatments in conjunction with your LLMD's treatment. some here believe in Rife, some in accupuncture, some in HyperBaric Oxygen, some in supplements. I believe in combining modalities.
IMO Quest is worthless for Lyme.
Posts: 210 | From lalaland | Registered: Jan 2005
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posted
I am seeing a LLMD in Connecticut this Thursday.
My internist does not know I am going. My neuro may have a sense that I am going since the LLMD requested some of my previous blood tests and MRI summaries. All of which I requested that they be faxed to the LLMD.
I do not think the LLMD is affiliated with an HMO since I am paying the full cost of the appointment with no insurance coverage.
But the more I think of my initial dxed, the more I think maybe they could have been wrong. Call it being optimistic, but my internist's sister was dxed with MS, the lab test for Lyme was Quest test.
posted
EZ, thanks for the encouragement re: knee. I am getting weaker the longer I am off it.
I hear of people taking flagyl with other abx, but my LLMD does them one at a time. Doesn't sound good for the cyst accumulation.
Posts: 830 | From Colorado | Registered: Mar 2005
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Lyddie
Unregistered
posted
Hi. Just wanted to say that tingling is my main Lyme symptom (also burning, buzzing and other sensations). Antibitiotics have greatly helped me, although symptoms recur very soon if I stop- within a day or two.
I also have a diagnosis of "cutaneous lupus" and have been told by the rheumatologist and my PCP to see a neurologist, to check out MS. This is very common.
The two doctors who want me to see the neuro have actually never heard of chronic Lyme or long-term antibiotics. They are probably nervous just leaving me with the Lyme diagnosis, but I myself am satisfied that is what I have and don't want to see a neuro, and then have to refuse their meds.
My original Western Blot at Quest was equivoval. Ignenex also. After about 6 weeks of antibiotics, both Quest and Ignenex tested me as very positive. So treament may change your testing and make things clearer.
posted
Justyou... You are not alone. Many of us are in the same boat. It somehow helps, doesn't it? Much healing and wellness for all of us.
Posts: 830 | From Colorado | Registered: Mar 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Newbies List 2005
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
posted
JustMe; I have had the tingling too, although not dx w/ MS. I probably had lyme for 10 years before being accurately dx. Took abx on and off for two years, and I'm 75% better now, with some waxing and waning.
Are you seeing Dr. P? That's who I see. You'll be impressed.
Take a notebook, write any questions you have prior to the appt. Then make note of your discussion-- there will be so much-- it's easy to forget.
Use the "newbie" links someone here gave you. Pay attn to diet, supplements, exercise, etc. Loits of other good ways to help youself in addition to the meds.
Most important, have hope. While most here are persistant lyme sufferers, many get comepletely better, and even us persistant ones can have a much better life, and feel "almost" normal, or far better than before, with a good LLMD.
I am going into this with a cautiously optimistic mindset.
Yes, I am going to Dr. P. The sequence of events as to how I got here and the reason I am seeing him could make for a great movie.
Here are some facts: I was dxed with MS in 1997; I had a Quest Lyme test done at the time, which was negative; I am fully ambulatory, although I can no longer run a 5 minute mile or snowski at a high level; I have not had a sick day from work in over 10 years; my job can be stressful but I enjoy the work and, on balance, have been fairly successful.
I live in a shoreline town east of New Haven.
I am not sure what will happen today; I was on steroids for 11 days in April. I did not do my Avonex shot on Tuesday due to this appointment.
The issues with my legs are mostly tingling and stiffness, I do have some tingling in my hands, and sometimes get dull headaches.
I am mentally ready to get better and have never felt sorry for myself after the initial MS diagnosis.
I do want to get better and will work hard to make that happen. I exercise and stretch 3-4 times a week - principally using a lifecycle.
If I do get a favorable outcome, I will look at it as a second chance in life. Since the MS diagnosis, I have done a lot of soulsearching. This has helped me to crystallize the people and things (not necessarily material possessions) that are important to me. I will always remember these things and will hold them dear to me.
I wanted to give everyone an update on my status and pick your brains. You were so helpful in the past.
I saw a lyme specialist in Connecticut in early May. He had me undergo a battery of blood tests, including sending samples to Igenex in Palo Alto and a lab in NJ.
My Igenex test came back positive and he believes that I have been expose to Lyme at some point in my life. The question now is whether the lyme is causing the ms.
He suggested to me to seek a second opinion and gave me the names of a few neurologists that are familiar with Lyme and MS.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, LymeInCT,
Yes, it seems absolutely prudent to get a second opinion on the MS/Lyme connection. The tests look for antibodies to the disease, and not the disease itself. Do you have both? Do you have MS, and asymptomatic Lyme? Or is it just Lyme? A Lyme-literate neurologist should be able to help sort that out for you.
Dr. P is one of the best, very knowledgeable. He also talks fast, so be sure to bring a list of symptoms and questions so you don't miss anything. You may also want to keep a journal of symptoms during your treatment, so you can give him an accurate idea of what is improving, what isn't, and what are your worst symptoms.
Best wishes on getting your health back!
Regards, Shaz (formerly of CT)
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I was dxed MS in 1988. (three brothrs at that time tested positive for lyme bur because ELISA was neg for me so I "was dxed MS" By the Way...first MS symptom was bell's palsy. Big DUH??!! to the doctors. I refused ANY crabs drugs becaue it did not make sense to suppress immune system if there was some type of infection causing the MS response. Needless to say, properly tested for lyme in 2003. (Western blot from Igenex lab) and was positive. In the Greater Hartford lyme support group there are 5 that were dxed MS turned out lyme induced. The facilitors of the group know of about 45. If you live in CT as I do...get your fanny to a true LLMD to rule out lyme as the cause of your MS response.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
What is the difference between lyme and MS? Don't a lot of symptoms over lap?
I'm asking this because Colorado is the MS capital of the world..I have friends who have it and won't listen to me. Docs hear say no such thing as lyme in this part of the country.
The other night I saw Frankie Avalon in Grease and it made me think of Annette Funicello. Someone told me she has MS...maybe it's lyme?
Posts: 738 | From Colorado | Registered: Oct 2004
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