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!
Cave76, I sincerely hope remission is forthcoming again for you, and very soon indeed!
Ricobord & JackieCalifornia, thank you, as ever, for the helpful posts and kind words of encouragement. I hope you're both keeping well. It seems I would be doing myself a disservice not to be on probiotics, & that I should just keep my eyes peeled all the while.
Jackie, I did recall your troubles with yeast, but thanks for the extra info on the different types of probiotics.
Met the doc for the first time yesterday, & he's v nice indeed. He actually listened to me! I'm already on a host of supplements but, amongst other things, he would like me to up my vit B12 intake, & start on NAC.
Had IV to draw out heavy metals for a 24 hr urine test, and am doing a bartonella challenge test at the mo. If I Herx, it confirms bartonella is a problem. Eek! Given my European test results were positive for bart, this seems likely, though I have been on the Cowden protocol since Sept now, so hopefully that will have helped. Busy afternoon today, with more testing & then first antibiotics (rocephin) by IV. Wish me luck!
Finally, how lucky you are to live in California! I'd never been to the West Coast before, but the beautiful landscape and welcoming people make the reason for my trip a little easier to stomach! I'll also keep my inner-seismograph on high alert!;)
Ricobord & JackieCalifornia, thank you, as ever, for the helpful posts and kind words of encouragement. I hope you're both keeping well. It seems I would be doing myself a disservice not to be on probiotics, & that I should just keep my eyes peeled all the while.
Jackie, I did recall your troubles with yeast, but thanks for the extra info on the different types of probiotics.
Met the doc for the first time yesterday, & he's v nice indeed. He actually listened to me! I'm already on a host of supplements but, amongst other things, he would like me to up my vit B12 intake, & start on NAC.
Had IV to draw out heavy metals for a 24 hr urine test, and am doing a bartonella challenge test at the mo. If I Herx, it confirms bartonella is a problem. Eek! Given my European test results were positive for bart, this seems likely, though I have been on the Cowden protocol since Sept now, so hopefully that will have helped. Busy afternoon today, with more testing & then first antibiotics (rocephin) by IV. Wish me luck!
Finally, how lucky you are to live in California! I'd never been to the West Coast before, but the beautiful landscape and welcoming people make the reason for my trip a little easier to stomach! I'll also keep my inner-seismograph on high alert!;)
Welcome to California! We'll try to schedule a small earthquake while you are here, just to give you a good story to relate when you are home again.
Re probiotics:
I think from reading and experience that probiotics are a very good thing, given that the antibiotics are killing off all the natural flora in your gut.
However (pardon if this is a repeat).
There are two kinds of probiotics, the more common bacterial probiotics such as Acidophilus, and the yeast-based probiotics such as Saccharomyces boulardii, including brand name Florastor.
The advantage to Florastor et al. is that antibiotics cannot disturb or damage the probiotics, so there is continual balance in the gut as the 'good' S. boulardii/Florastor yeast crowds out the 'bad' yeast of an opportunistic fungal infection.
It seems however that some people are yeast-sensitive, and I am one the lucky. My LLMD insisted on Florastor for his patients, and it was only well into treatment that my bad reaction to Florastor was noted: serious bloating, brain fog, red eyes, aching teeth ... just lovely. The brain fog was not very different from Lyme itself, and neither my doc nor I put much emphasis on it, until it got so bad that he ran a blood test and found (so he said) the highest levels of yeast in my blood stream that he had ever seen.
Lyme then became a secondary issue, and killing the fungal infection was first up. A lot of Diflucan and a radical dietary change (few carbs, no sugars) turned things around, and I am fine now, some years later. It is however an adventure I do not recommend to anyone. (For months after, even walking down the bread aisle in the grocery store made me lightheaded from yeast sensitivity.)
The alternative approach to Florastor is to take bacterial probiotics such as Acidophilus, being very careful to allow sufficient time between probiotic and antibiotic doses so that they do not conflict (I don't recall exactly how long a gap is advisable ... at least one hour, perhaps two). It's doable, just takes some planning, rigorous time management, and a reputable brand of Acidophilus (there is a lot of junk out there on the market; refrigerated brands may be better for bacterial viability, not sure).
So that's my speech. Not all bad reactions are Herxes, and mine was unusual, but not unheard of.
Best wishes to you -- keep watching for that earthquake -- it may feel only like the rumble of a large truck going down the street, but it is fine story when you are home, that you survived Lyme, and California, *and* an earthquake.
Best, J.
Re probiotics:
I think from reading and experience that probiotics are a very good thing, given that the antibiotics are killing off all the natural flora in your gut.
However (pardon if this is a repeat).
There are two kinds of probiotics, the more common bacterial probiotics such as Acidophilus, and the yeast-based probiotics such as Saccharomyces boulardii, including brand name Florastor.
The advantage to Florastor et al. is that antibiotics cannot disturb or damage the probiotics, so there is continual balance in the gut as the 'good' S. boulardii/Florastor yeast crowds out the 'bad' yeast of an opportunistic fungal infection.
It seems however that some people are yeast-sensitive, and I am one the lucky. My LLMD insisted on Florastor for his patients, and it was only well into treatment that my bad reaction to Florastor was noted: serious bloating, brain fog, red eyes, aching teeth ... just lovely. The brain fog was not very different from Lyme itself, and neither my doc nor I put much emphasis on it, until it got so bad that he ran a blood test and found (so he said) the highest levels of yeast in my blood stream that he had ever seen.
Lyme then became a secondary issue, and killing the fungal infection was first up. A lot of Diflucan and a radical dietary change (few carbs, no sugars) turned things around, and I am fine now, some years later. It is however an adventure I do not recommend to anyone. (For months after, even walking down the bread aisle in the grocery store made me lightheaded from yeast sensitivity.)
The alternative approach to Florastor is to take bacterial probiotics such as Acidophilus, being very careful to allow sufficient time between probiotic and antibiotic doses so that they do not conflict (I don't recall exactly how long a gap is advisable ... at least one hour, perhaps two). It's doable, just takes some planning, rigorous time management, and a reputable brand of Acidophilus (there is a lot of junk out there on the market; refrigerated brands may be better for bacterial viability, not sure).
So that's my speech. Not all bad reactions are Herxes, and mine was unusual, but not unheard of.
Best wishes to you -- keep watching for that earthquake -- it may feel only like the rumble of a large truck going down the street, but it is fine story when you are home, that you survived Lyme, and California, *and* an earthquake.
Best, J.
Glad to hear you made it to the CA LLMD. I hope it all goes well and you get a good start on the road to treatment!
I was taking some relatively inexpensive probiotics earlier in my treatment and I was still have a lot of gut problems. My doc suggested Klaire Labs complete instead, and they were clearly better for me. He insists on probiotics to help avoid getting C. difficile. On occasion I haven't taken them and I can tell by the next morning. Without them I get more bloating and stomach tenderness.
I've haven't heard of probiotics making Lyme symptoms worse, but then there's so much about the gut/immune system that we don't understand yet. In my case I am worse without them as the antibiotics kill too many of the good bugs in my intestines. I suspect if anyone started antibiotics with probiotics and got worse, it was most likely a result of herxing.
I was taking some relatively inexpensive probiotics earlier in my treatment and I was still have a lot of gut problems. My doc suggested Klaire Labs complete instead, and they were clearly better for me. He insists on probiotics to help avoid getting C. difficile. On occasion I haven't taken them and I can tell by the next morning. Without them I get more bloating and stomach tenderness.
I've haven't heard of probiotics making Lyme symptoms worse, but then there's so much about the gut/immune system that we don't understand yet. In my case I am worse without them as the antibiotics kill too many of the good bugs in my intestines. I suspect if anyone started antibiotics with probiotics and got worse, it was most likely a result of herxing.
Thanks very much for your posts, and the helpful information contained therein. Some food for thought.
Cave76, I hope you're still in remission.
Nutrinut_bob, it wasn't the Germans who tested me for filariasis and toxoplasma, but rather a private infectious diseases doc in London.
Any further comments on how people have reacted to probiotics are welcomed.
Thanks again all!
Cave76, I hope you're still in remission.
Nutrinut_bob, it wasn't the Germans who tested me for filariasis and toxoplasma, but rather a private infectious diseases doc in London.
Any further comments on how people have reacted to probiotics are welcomed.
Thanks again all!
Some very good info in this post, sorry I didn't find it sooner. Very interesting to see the Germans testing for filariasis and toxoplasma. I had to get the filiariasis testing via the National Institute of Health here. I had a weak positive as I had already killed the feline worms. Had to pay for toxoplasma testing not too long ago, some reaction, but not high enough to be considered positive for either IgG or IgM. Probiotics, I don't mess with, been reading too much about how what we get is often determined by our gut flora. I'll leave that department up to God, whatever is able to survive my herbals must be what's intended to be there. Lots of recent research available online in that department.
"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.
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.
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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