Aa
Has anyone else been diagnosed with Lyme Disease and Multiple Sclerosis?
Hi all!
I thought I would start by giving you a little of my health history.
I had an attack of brain inflammation in June 2011, at a time of great stress in my life, with 10 of my 12 cranial nerves impacted. A subsequent 'sensory' relapse in January 2012 - with numbness/tingling in my left hand and two further brain lesions on MRI - led to a diagnosis of relapsing and remitting Multiple Sclerosis (MS) on 30 May 2012 at a hospital in London, UK. I have had other sensory relapses since. On 31 August 2012, I then received a positive serology for chronic Lyme disease from Infectolab, part of the Borreliose Centrum, in Augsburg, Germany to which I had sent my blood from London.
My current situation is as follows:
- My MS doctors in London, together with a London-based infectious diseases specialist, tell me they are not obliged to take my German Lyme disease test result into account, as they believe that the UK testing - which came back negative for me last year - is adequate.
- However, my experience and research have led me to believe that the UK is not up to speed on Lyme disease and its treatment.
- In particular, my trusted nutritionist attended the 2012 International Lyme and Associated Diseases Society (ILADS) conference in Austria and told me that doctors present there, who came from all over the world, said that UK testing for Lyme disease is very inaccurate, meaning lots of false negative test results are possible.
- It was at this conference that my nutritionist came across Infectolab, and discovered their testing was far more accurate, hence my decision to use them.
- I am fortunate to have a very good GP here in London, and she accepts the German diagnosis in spite of my negative UK Lyme disease test results. As such, she said she could give me 14-21 days of doxycycline but is unable to prescribe more in light of the UK Department of Health and Health Protection Agency guidelines in this area.
- However, the German doctor whose lab diagnosed my Lyme disease said that 14-21 days would not clear the Borrelia Burgdorferi (BB) Lyme bacteria. A California-based Lyme Literate MD (LLMD), who is treating a friend with Lyme, reiterated this view.
- My MS doctors are keen for me to begin Beta Interferon treatment (probably Avonex) for my MS as soon as possible. This medication is an immunomodulator, and so may affect my ability to fight infection. Assuming I do indeed have Lyme disease, the MS treatment would allow this infection to progress.
- I therefore would like to treat my Lyme disease first, before reconsidering the MS drugs.
My MS has been described as atypical for a number of reasons:
- My neurologists tell me that most of their MS patients experience inflammation of one or two cranial nerves in a single attack, not 10.
- My cerebrospinal fluid (CSF), when tested in July 2011 was atypical of an MS sufferer, and atypical of your average person. (As Lyme disease wasn't part of the picture at that stage, my CSF wasn't analysed for the presence of the BB Lyme bacteria.)
- When I was put on steroids to dampen the brain inflammation in July 2011, it induced chronic fatigue, from which I still suffer. I know fatigue is a common MS symptom, but certain doctors have commented that this was an unusual reaction to steroids, which invigorate most people as a side effect to dampening inflammation. As my immune system will have been suppressed by the steroids, in the same way that it could be in the future by the MS drugs, any infections in my body will have been able to run riot. Perhaps my body was trying to sleep as a form of self-preservation, as the BB Lyme bacteria were multiplying.
As chronic Lyme disease can cause neurological damage, perhaps this would explain some of my symptoms, and the various anomalies of my case. In any event, it is my hope that, with treatment of the Lyme disease underway, my symptoms will improve, if not wholly, then at least partially.
The idea that the aetiology of MS could be an infectious agent is nothing new, but I would be very interested to hear from anyone else with a diagnosis of both Lyme disease and MS. Would you recommend your current LLMD, assuming you are being treated by one? Also, please may you tell me of any drugs (for Lyme disease, MS, or both) you may be on, and for how long you've been on them?
As I am dissatisfied with the UK's approach to Lyme disease treatment, I am presently deciding between going to the Borreliose Centrum in Germany for my treatment, or to the Californian LLMD, with whom my friend is very pleased. However, I am still keen to explore as many avenues as possible to get back to health.
Any help you may be able to provide would be gratefully received. Thanks!
I thought I would start by giving you a little of my health history.
I had an attack of brain inflammation in June 2011, at a time of great stress in my life, with 10 of my 12 cranial nerves impacted. A subsequent 'sensory' relapse in January 2012 - with numbness/tingling in my left hand and two further brain lesions on MRI - led to a diagnosis of relapsing and remitting Multiple Sclerosis (MS) on 30 May 2012 at a hospital in London, UK. I have had other sensory relapses since. On 31 August 2012, I then received a positive serology for chronic Lyme disease from Infectolab, part of the Borreliose Centrum, in Augsburg, Germany to which I had sent my blood from London.
My current situation is as follows:
- My MS doctors in London, together with a London-based infectious diseases specialist, tell me they are not obliged to take my German Lyme disease test result into account, as they believe that the UK testing - which came back negative for me last year - is adequate.
- However, my experience and research have led me to believe that the UK is not up to speed on Lyme disease and its treatment.
- In particular, my trusted nutritionist attended the 2012 International Lyme and Associated Diseases Society (ILADS) conference in Austria and told me that doctors present there, who came from all over the world, said that UK testing for Lyme disease is very inaccurate, meaning lots of false negative test results are possible.
- It was at this conference that my nutritionist came across Infectolab, and discovered their testing was far more accurate, hence my decision to use them.
- I am fortunate to have a very good GP here in London, and she accepts the German diagnosis in spite of my negative UK Lyme disease test results. As such, she said she could give me 14-21 days of doxycycline but is unable to prescribe more in light of the UK Department of Health and Health Protection Agency guidelines in this area.
- However, the German doctor whose lab diagnosed my Lyme disease said that 14-21 days would not clear the Borrelia Burgdorferi (BB) Lyme bacteria. A California-based Lyme Literate MD (LLMD), who is treating a friend with Lyme, reiterated this view.
- My MS doctors are keen for me to begin Beta Interferon treatment (probably Avonex) for my MS as soon as possible. This medication is an immunomodulator, and so may affect my ability to fight infection. Assuming I do indeed have Lyme disease, the MS treatment would allow this infection to progress.
- I therefore would like to treat my Lyme disease first, before reconsidering the MS drugs.
My MS has been described as atypical for a number of reasons:
- My neurologists tell me that most of their MS patients experience inflammation of one or two cranial nerves in a single attack, not 10.
- My cerebrospinal fluid (CSF), when tested in July 2011 was atypical of an MS sufferer, and atypical of your average person. (As Lyme disease wasn't part of the picture at that stage, my CSF wasn't analysed for the presence of the BB Lyme bacteria.)
- When I was put on steroids to dampen the brain inflammation in July 2011, it induced chronic fatigue, from which I still suffer. I know fatigue is a common MS symptom, but certain doctors have commented that this was an unusual reaction to steroids, which invigorate most people as a side effect to dampening inflammation. As my immune system will have been suppressed by the steroids, in the same way that it could be in the future by the MS drugs, any infections in my body will have been able to run riot. Perhaps my body was trying to sleep as a form of self-preservation, as the BB Lyme bacteria were multiplying.
As chronic Lyme disease can cause neurological damage, perhaps this would explain some of my symptoms, and the various anomalies of my case. In any event, it is my hope that, with treatment of the Lyme disease underway, my symptoms will improve, if not wholly, then at least partially.
The idea that the aetiology of MS could be an infectious agent is nothing new, but I would be very interested to hear from anyone else with a diagnosis of both Lyme disease and MS. Would you recommend your current LLMD, assuming you are being treated by one? Also, please may you tell me of any drugs (for Lyme disease, MS, or both) you may be on, and for how long you've been on them?
As I am dissatisfied with the UK's approach to Lyme disease treatment, I am presently deciding between going to the Borreliose Centrum in Germany for my treatment, or to the Californian LLMD, with whom my friend is very pleased. However, I am still keen to explore as many avenues as possible to get back to health.
Any help you may be able to provide would be gratefully received. Thanks!
In passing: I have been musing over this passage in one of your posts above --
"it could only seem like an autoimmune process is in train when in actual fact the body is attempting to attack the BB pathogen. However, as the BB bacteria are now intracellular, & the body's own defence mechanisms are of somewhat limited sophistication, it just appears as though the body is attacking itself, when it is in reality trying to attack (alien bacteria that have settled in) the myelin sheath, as would be the case in MS, for example. This reasoning does not mean, in my mind at least, that Lyme disease is an autoimmune condition."
I would be very interested if anyone runs across more on this intriguing line of thought. I suspect we (the collective world 'we') will get much closer to the truth of how all this connects when Lyme is no longer ignored by so-called mainstream medicine.
"it could only seem like an autoimmune process is in train when in actual fact the body is attempting to attack the BB pathogen. However, as the BB bacteria are now intracellular, & the body's own defence mechanisms are of somewhat limited sophistication, it just appears as though the body is attacking itself, when it is in reality trying to attack (alien bacteria that have settled in) the myelin sheath, as would be the case in MS, for example. This reasoning does not mean, in my mind at least, that Lyme disease is an autoimmune condition."
I would be very interested if anyone runs across more on this intriguing line of thought. I suspect we (the collective world 'we') will get much closer to the truth of how all this connects when Lyme is no longer ignored by so-called mainstream medicine.
Always good to read you, JackieCalifornia, mojogal and Ricobord.
mojogal, thank you - I shall look for that Lyme Times article.
Ricobord, thank you too - I know you're going through a rough patch at the moment, so please don't worry about uncovering those articles for me. I just hope you feel stronger soon :)
And Khiba, a very big welcome to you to this thread. I've read your own one too, and am sorry to hear of your experiences. May I say, though, that you sound very positive? Such an outlook is both inspiring and invaluable, so keep it up! :)
I'm pleased you've found this thread useful, and I can see that you're already getting responses in yours. I've been benefiting greatly from the knowledge of the MedHelp Lyme disease community, and so I am sure you will too. Do keep us posted on any developments.
Be well, all.
mojogal, thank you - I shall look for that Lyme Times article.
Ricobord, thank you too - I know you're going through a rough patch at the moment, so please don't worry about uncovering those articles for me. I just hope you feel stronger soon :)
And Khiba, a very big welcome to you to this thread. I've read your own one too, and am sorry to hear of your experiences. May I say, though, that you sound very positive? Such an outlook is both inspiring and invaluable, so keep it up! :)
I'm pleased you've found this thread useful, and I can see that you're already getting responses in yours. I've been benefiting greatly from the knowledge of the MedHelp Lyme disease community, and so I am sure you will too. Do keep us posted on any developments.
Be well, all.
I have been lurking and reading and find all this incredibly thought provoking. I have been diagnosed with MS but am wondering if its real.. I started a new thread in this form called MS, Lyme and how to find out.
I hope y'all feel better, and thank you for your very instructive and thoughtful answers.
J
I hope y'all feel better, and thank you for your very instructive and thoughtful answers.
J
On initial look, I am not finding that article about the recent MS study. I will look more. I saw it via a link someone posted, so I need to go find that. I will also look for a page I know of that lists about 20 articles referencing how Lymemimics MS.
Lyme can indeed mess with the immune system, it is just not fully understood how. Multiple doctors who know Lyme well have mentioned it. Steroids do indeed reduce inflammation, which is a cause of a number of Lyme symptoms. But at its core, Lyme is a bacterial infection, just a much more advanced and complex bacteria than anything else we've seen before.
You'll definitely want to get Anti-Lyme antibiotics before you take any MS meds. There are too many stories of people reacting badly and "failing" MS meds before they finally figured out it was Lyme. Odds are good that you'll feel some herxing on antibiotics, eecially since you've been sick over a year. A herx will be your confirmation of Lyme.
Lyme can indeed mess with the immune system, it is just not fully understood how. Multiple doctors who know Lyme well have mentioned it. Steroids do indeed reduce inflammation, which is a cause of a number of Lyme symptoms. But at its core, Lyme is a bacterial infection, just a much more advanced and complex bacteria than anything else we've seen before.
You'll definitely want to get Anti-Lyme antibiotics before you take any MS meds. There are too many stories of people reacting badly and "failing" MS meds before they finally figured out it was Lyme. Odds are good that you'll feel some herxing on antibiotics, eecially since you've been sick over a year. A herx will be your confirmation of Lyme.
If anyone gets the Lyme Times, there is a recent article where they mentioned that so many Lyme patients are being misdiagnosed with MS, Lupus, CFS, Fibromyalgia etc, I was misdiagnosed with all of those things and more for 20 years.
There was a another article in there about an insurance company that would not cover a women's Lyme claims thus causing her death. It made me sit up and take notice!
My wish would be that one day, Lyme info and LLMD's would be easily found so that misdiagnoses would not be the norm.
There was a another article in there about an insurance company that would not cover a women's Lyme claims thus causing her death. It made me sit up and take notice!
My wish would be that one day, Lyme info and LLMD's would be easily found so that misdiagnoses would not be the norm.
Ah, but Jackie here can always be wrong! As I remarked again recently, my medical license came out of a candy machine, and in fact I never made it through the organic chemistry class in college (dropped it twice, I think), so you're dealing with an opinionated ignoramus here.
I titled my previous post 'Lyme is not an autoimmune disease' mainly for posterity, in case someone innocently searched online for ... say, 'Lyme autoimmune disease' and didn't see that there is a dispute in the medical community on some of these issues. I apologize for any harshness.
And yes, indeed, there indeed be mechanisms in the body that operate in a way so as to be or at least seem 'autoimmune' in nature .... won't it be a glorious day when Mother Nature finally gives up all her secrets on this miserable illness!
Your commentary above is quite interesting and thought-provoking. Were that the nonLLMDs as subtle in their thinking.
I titled my previous post 'Lyme is not an autoimmune disease' mainly for posterity, in case someone innocently searched online for ... say, 'Lyme autoimmune disease' and didn't see that there is a dispute in the medical community on some of these issues. I apologize for any harshness.
And yes, indeed, there indeed be mechanisms in the body that operate in a way so as to be or at least seem 'autoimmune' in nature .... won't it be a glorious day when Mother Nature finally gives up all her secrets on this miserable illness!
Your commentary above is quite interesting and thought-provoking. Were that the nonLLMDs as subtle in their thinking.
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