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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!
Thanks very much for posting this, Jackie.
Many of us have either experienced personally, or read of others, who've got LD and who've taken immunosuppressants, and had a (sometimes extremely) bad reaction.
Of course, immunosuppressants have their place, and that's often where the inflammation is so far gone, it doesn't seem to be settling of its own accord. This seems regularly to happen after an MS attack.
But, as you rightly say, immunosuppressants and immunomodulators are different things, insofar as the former only suppresses the immune system, and the latter can serve both to suppress and stimulate it.
For people's ease of reference, I re-copy one of the most pertinent paragraphs from your cited article by Dallas Clouatre:
"More readily available immune modulators include, perhaps surprisingly, many probiotics. Few individuals realize that probiotic organisms can stimulate immune function, and fewer still know that these special bacteria can also tone down excessive immune activity. Such benefits may help to explain why populations that regularly consume fermented foods appear to be healthier. ..."
So, what's in a name? Apparently quite a lot! Immunomodulators modulate the immune system. To reiterate: to modulate, in this context, is to endeavour to achieve balance, which can entail both stimulating and suppressing the immune system.
This definition is certainly also in line with my thinking based on my reading elsewhere.
Conclusion: those readers with an autoimmune condition (like MS) AND an infection (like Lyme disease) should approach immunomodulators with care, and under the guidance and supervision of a suitably knowledgeable medical professional.
Many of us have either experienced personally, or read of others, who've got LD and who've taken immunosuppressants, and had a (sometimes extremely) bad reaction.
Of course, immunosuppressants have their place, and that's often where the inflammation is so far gone, it doesn't seem to be settling of its own accord. This seems regularly to happen after an MS attack.
But, as you rightly say, immunosuppressants and immunomodulators are different things, insofar as the former only suppresses the immune system, and the latter can serve both to suppress and stimulate it.
For people's ease of reference, I re-copy one of the most pertinent paragraphs from your cited article by Dallas Clouatre:
"More readily available immune modulators include, perhaps surprisingly, many probiotics. Few individuals realize that probiotic organisms can stimulate immune function, and fewer still know that these special bacteria can also tone down excessive immune activity. Such benefits may help to explain why populations that regularly consume fermented foods appear to be healthier. ..."
So, what's in a name? Apparently quite a lot! Immunomodulators modulate the immune system. To reiterate: to modulate, in this context, is to endeavour to achieve balance, which can entail both stimulating and suppressing the immune system.
This definition is certainly also in line with my thinking based on my reading elsewhere.
Conclusion: those readers with an autoimmune condition (like MS) AND an infection (like Lyme disease) should approach immunomodulators with care, and under the guidance and supervision of a suitably knowledgeable medical professional.
Regarding immunomodulators vs immunosuppressants:
If anyone reads through this very long thread and gets to this point, I am about to make a separate post on something I just ran across which bears on this point.
The person who posted above and informed me sternly that immunomodulators and immunosuppressants are not at all the same thing and have no relation to each other.
I backed off at that point, but interestingly have in the process of doing something else entirely have found information elsewhere that speaks more generally about modulators vs suppressants.
While the person who smacked me up above may have a firm idea in her own mind of what the effects are or are not in multiple sclerosis (which is her own separate area of concern), the general point should not be missed that a suppressant and a modulator are indeed not the same thing.
So please look for a separate post on this point, which I am about to put up on this site, if this is a topic of interest or concern for you.
Thank you.
If anyone reads through this very long thread and gets to this point, I am about to make a separate post on something I just ran across which bears on this point.
The person who posted above and informed me sternly that immunomodulators and immunosuppressants are not at all the same thing and have no relation to each other.
I backed off at that point, but interestingly have in the process of doing something else entirely have found information elsewhere that speaks more generally about modulators vs suppressants.
While the person who smacked me up above may have a firm idea in her own mind of what the effects are or are not in multiple sclerosis (which is her own separate area of concern), the general point should not be missed that a suppressant and a modulator are indeed not the same thing.
So please look for a separate post on this point, which I am about to put up on this site, if this is a topic of interest or concern for you.
Thank you.
Hello!
Thanks for both of your messages. I returned late last night after a long couple of snow-filled days in Germany. It was okay, though perhaps my expectations had been set too high beforehand! Got some serious thinking to do and decisions to make now about how to progress. I'll send you both a PM with more details, as I'm not sure how much I should say on a public thread. Likewise, anyone else reading this who'd like to know more, please feel free to message me privately.
And thanks, Ricobord, for the link too. It's a really good resource! I actually got the article from 2000 I posted above from there, but it's great that you've highlighted the main page to everyone here. I hope you're feeling a little better now.
Speak soon!
Thanks for both of your messages. I returned late last night after a long couple of snow-filled days in Germany. It was okay, though perhaps my expectations had been set too high beforehand! Got some serious thinking to do and decisions to make now about how to progress. I'll send you both a PM with more details, as I'm not sure how much I should say on a public thread. Likewise, anyone else reading this who'd like to know more, please feel free to message me privately.
And thanks, Ricobord, for the link too. It's a really good resource! I actually got the article from 2000 I posted above from there, but it's great that you've highlighted the main page to everyone here. I hope you're feeling a little better now.
Speak soon!
How did it go?
I found the list of articles regarding MS and Lyme that I mentioned earlier. I'll post it on a new thread as well.
http://www.lymeinfo.net/multiplesclerosis.html
I found the list of articles regarding MS and Lyme that I mentioned earlier. I'll post it on a new thread as well.
http://www.lymeinfo.net/multiplesclerosis.html
Travel well! We look forward to an update -- best wishes for fair winds, following seas ... and a wise and compassionate physician.
Hi all!
Hope you're staying strong.
Just thought I'd give you an update.
I'm off to Germany today, for my first consultation at the BCA tomorrow. I'll have to let you know how I get on.
I also intend to do a little more fishing around in relation to your last post in this chain, JackieCalifornia, so I'll have to let you know if I come across anything interesting.
All the best for now.
Hope you're staying strong.
Just thought I'd give you an update.
I'm off to Germany today, for my first consultation at the BCA tomorrow. I'll have to let you know how I get on.
I also intend to do a little more fishing around in relation to your last post in this chain, JackieCalifornia, so I'll have to let you know if I come across anything interesting.
All the best for now.
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