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!
"Different probiotics may also have different effects, sometimes opposite, depending on the type. Therefore it is difficult to draw overall conclusions on the risks and benefits of probiotics"
http://agris.fao.org/agris-search/search/display.do?f=2004%2FNL%2FNL04017.xml%3BNL2004724707
*****************************************
http://rivm.openrepository.com/rivm/bitstream/10029/8908/1/340320001.pdf
"Alterations in specific immune parameters cannot be interpreted unidirectionally as beneficial or deleterious."
This survey of literature was several years ago. I welcome reading any newer review or survey.
"5 Safety of probiotics: are probiotics (immunologically)
safe?
In the previous section several beneficial effects of probiotics and their proposed mechanisms
have been discussed. By the same token that probiotics may enhace health due to
immunologic mechanisms, influences on the immune system may also have deleterious
effects on health. Unfortunately, little information is available on deleterious effects of
probiotic use.
Only a few studies have dealt with pathological features of probiotics (Bayer
et al., 1978; Sharpe et al., 1973; Harty et al., 1994). In these papers infections, endocartitis,
dental caries, rheumatic vascular disease, septicaemia were described due to the ingestion of
lactobacilli. Thus, one issue that clearly needs more attention is safety of probiotics. This
pertains to the entire population as well as subgroups, such as children, the elderly, allergy
prone individuals, immunocompromized individuals, especially as there is a tendency to
promote the use of probiotics for specific groups (for instance in baby formula with the hope
to decrease the chance of developing asthma later on in life).
Alterations in specific immune parameters cannot be interpreted unidirectionally as beneficial
or deleterious. For instance: an increased Th1 response may enhance resistance to an
infection, yet also increase the expression of autoimmunity. Increased natural killer activity
may enhance the resistance to viral infections, yet through enhanced interferon production
also enhance the severity of inflammatory responses to bacterial infections. Hence, immune
alterations may be indicative of biological effects of exposure to probiotics, they are not
necessarily indicative of the direction of the health effect.
Further research to characterize effects of exposure to probiotics, including the unravelling of
mechanistic pathways, the assessment of dose-response relationships, and the comparison of
effects of different types of probiotics will provide a first step in understanding the balance
between positive and negative effects.
The most appropriate way to conclude whether
immune effects noted are beneficial or rather deleterious is to study effects of exposure in
disease models. Such models include infection models, models of respiratory, skin, and food
allergy and models of autoimmunity. Patterns of immune alteration due to the probiotics may
interpreted in the context of the clinical effects observed, so that eventually such patterns
alone would be able to indicate possible beneficial or deleterious effects of probiotics.
Even if there is an array of immune parameters available that can be measured, it is doubtful
whether these alone will suffice to indicate patterns of beneficial or disadvantageous effects.
Especially as many different cell types, interleukins, cell receptors, transcription factors, etc.
may be involved, that can never all be evaluated simultaneously in one or a limited number of
experiments, a natural next step to analyze effects of exposure of probiotics is to investigate
effects on gene expression. Such parameters too should be validated against clinical effects
found in disease models.
Information on patterns of effects indicative of positive or negative consequences of the use of probiotics will eventually form the basis of designing a protocol for the evaluation of probiotics to be put on the market."
[I offer these not to be confrontational but in the spirit of discussing the pros and cons of probiotics---- by scientists. They are NOT my words.]
http://agris.fao.org/agris-search/search/display.do?f=2004%2FNL%2FNL04017.xml%3BNL2004724707
*****************************************
http://rivm.openrepository.com/rivm/bitstream/10029/8908/1/340320001.pdf
"Alterations in specific immune parameters cannot be interpreted unidirectionally as beneficial or deleterious."
This survey of literature was several years ago. I welcome reading any newer review or survey.
"5 Safety of probiotics: are probiotics (immunologically)
safe?
In the previous section several beneficial effects of probiotics and their proposed mechanisms
have been discussed. By the same token that probiotics may enhace health due to
immunologic mechanisms, influences on the immune system may also have deleterious
effects on health. Unfortunately, little information is available on deleterious effects of
probiotic use.
Only a few studies have dealt with pathological features of probiotics (Bayer
et al., 1978; Sharpe et al., 1973; Harty et al., 1994). In these papers infections, endocartitis,
dental caries, rheumatic vascular disease, septicaemia were described due to the ingestion of
lactobacilli. Thus, one issue that clearly needs more attention is safety of probiotics. This
pertains to the entire population as well as subgroups, such as children, the elderly, allergy
prone individuals, immunocompromized individuals, especially as there is a tendency to
promote the use of probiotics for specific groups (for instance in baby formula with the hope
to decrease the chance of developing asthma later on in life).
Alterations in specific immune parameters cannot be interpreted unidirectionally as beneficial
or deleterious. For instance: an increased Th1 response may enhance resistance to an
infection, yet also increase the expression of autoimmunity. Increased natural killer activity
may enhance the resistance to viral infections, yet through enhanced interferon production
also enhance the severity of inflammatory responses to bacterial infections. Hence, immune
alterations may be indicative of biological effects of exposure to probiotics, they are not
necessarily indicative of the direction of the health effect.
Further research to characterize effects of exposure to probiotics, including the unravelling of
mechanistic pathways, the assessment of dose-response relationships, and the comparison of
effects of different types of probiotics will provide a first step in understanding the balance
between positive and negative effects.
The most appropriate way to conclude whether
immune effects noted are beneficial or rather deleterious is to study effects of exposure in
disease models. Such models include infection models, models of respiratory, skin, and food
allergy and models of autoimmunity. Patterns of immune alteration due to the probiotics may
interpreted in the context of the clinical effects observed, so that eventually such patterns
alone would be able to indicate possible beneficial or deleterious effects of probiotics.
Even if there is an array of immune parameters available that can be measured, it is doubtful
whether these alone will suffice to indicate patterns of beneficial or disadvantageous effects.
Especially as many different cell types, interleukins, cell receptors, transcription factors, etc.
may be involved, that can never all be evaluated simultaneously in one or a limited number of
experiments, a natural next step to analyze effects of exposure of probiotics is to investigate
effects on gene expression. Such parameters too should be validated against clinical effects
found in disease models.
Information on patterns of effects indicative of positive or negative consequences of the use of probiotics will eventually form the basis of designing a protocol for the evaluation of probiotics to be put on the market."
[I offer these not to be confrontational but in the spirit of discussing the pros and cons of probiotics---- by scientists. They are NOT my words.]
My answer to your above question ------ I took probiotics consistently throughout my abx treatments. I gradually, slowly improved but got kicked over the goal post with bicillin LA and achieved a 3-4 year remission while still on probiotics.
That's just one person answering your poll. :)
That's just one person answering your poll. :)
Hi JackieCalifornia, I hope you're well.
Further to my last message:
In relation to your post above about probiotics being immunomodulators, a question came to mind:
Has anyone ever gone on abx, but then taken probiotics (in the hope that the latter will counteract some of the bad side effects of the abx), but actually found his/her condition getting worse?
If probiotics are immunomodulators, as established above, which can supposedly stimulate as well as suppress the immune system, I wonder if anyone has dipped with their LD as a result of having taken an immunosuppressive probiotic.
Any comments are gratefully received.
Further to my last message:
In relation to your post above about probiotics being immunomodulators, a question came to mind:
Has anyone ever gone on abx, but then taken probiotics (in the hope that the latter will counteract some of the bad side effects of the abx), but actually found his/her condition getting worse?
If probiotics are immunomodulators, as established above, which can supposedly stimulate as well as suppress the immune system, I wonder if anyone has dipped with their LD as a result of having taken an immunosuppressive probiotic.
Any comments are gratefully received.
Hi all!
I hope you're keeping strong.
I thought I'd post in this thread of mine, for consistency, a link to a radio show with Dr Armin Schwarzbach, lab doctor at Infectolab, part of the BCA, in which the link between Lyme disease and MS is discussed at various points:
http://www.blogtalkradio.com/in-short-order/2013/05/12/in-short-order--dr-armin-schwarzbach
It's worth a listen even if you're not particularly focused on MS. Dr Alan MacDonald, of 'Under Our Skin' fame, makes an appearance as a guest caller. I'm pleased to report he sounds in good health himself.
As some of you already know, my relationship with the BCA ultimately came to naught - inter alia, as I didn't want to move to Germany, they could only send me the necessary, longer-term drugs if my UK GP prescribed them. My GP refused, and so, after having also researched a number of other options closer to home in vain, I turned to the US, as the US doc recommended by my friend can send the drugs back to me in the UK directly.
So, I arrived in California last night, and my first appointment with the US LLMD is tmrw. If he still deems it appropriate when he meets me, he wants to start me on IV antibiotics, before sending me on my way with oral meds. Here for a fortnight, for the start of my treatment. Bit nervous, but keeping positive. With any luck, because I can be treated remotely, I'll then return to the UK, and it will actually turn out to be cheaper than if I'd moved to Germany. ...I'll have to let you know how I get on.
Warm wishes to you all for now.
I hope you're keeping strong.
I thought I'd post in this thread of mine, for consistency, a link to a radio show with Dr Armin Schwarzbach, lab doctor at Infectolab, part of the BCA, in which the link between Lyme disease and MS is discussed at various points:
http://www.blogtalkradio.com/in-short-order/2013/05/12/in-short-order--dr-armin-schwarzbach
It's worth a listen even if you're not particularly focused on MS. Dr Alan MacDonald, of 'Under Our Skin' fame, makes an appearance as a guest caller. I'm pleased to report he sounds in good health himself.
As some of you already know, my relationship with the BCA ultimately came to naught - inter alia, as I didn't want to move to Germany, they could only send me the necessary, longer-term drugs if my UK GP prescribed them. My GP refused, and so, after having also researched a number of other options closer to home in vain, I turned to the US, as the US doc recommended by my friend can send the drugs back to me in the UK directly.
So, I arrived in California last night, and my first appointment with the US LLMD is tmrw. If he still deems it appropriate when he meets me, he wants to start me on IV antibiotics, before sending me on my way with oral meds. Here for a fortnight, for the start of my treatment. Bit nervous, but keeping positive. With any luck, because I can be treated remotely, I'll then return to the UK, and it will actually turn out to be cheaper than if I'd moved to Germany. ...I'll have to let you know how I get on.
Warm wishes to you all for now.
and PS, re-reading my first post (above) about the Clouatre piece shows how half asleep I was when I wrote it. Sorry for the garbling, but wanted to post it before I fell asleep and forgot!
jx28, thanks for the re-framing.
jx28, thanks for the re-framing.
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