Exercise Lyme Away?

[Martial]

I think this is the BIG question. While the LYME/M.E debate rages across the forums and FB groups this is the one question that would help to answer the bigger question - are M.E and Lyme the same thing, or does Lyme cause M.E?

@Martial it sounds very much like a form of GET that you are arguing for. Unfortunately for a vast majority of us on this forum who have M.E and Lyme we are too sick to consider making ourselves feel worse before we feel better. I haven't been able to exercise in 6 years AT ALL and that usually also includes normal walking. When you are so ill that just being out of bed or talking on the phone for too long causes PEM, or having a shower or getting dressed can set you back months or years how on earth can those patients even consider ANY form of exercise?

I tried for a few years to add in ONE yoga stretch, even 3 times a week and it was too much. Hell, my whole life is too much! there is no way I would now try and add in any kind of exercise - im living on the edge all the time as it is.

I am not too familiar with the ins and outs of GET, but exercise itself will not solve issues without the accompanying Lyme treatment in this case. Although sometimes I have heard it helping or resolving some peoples symptoms, but yes that is exactly why I said you need a strong assessment to figure out if you can handle taking on any kind of physical exertion first. People that are bed ridden are not yet ready to take on any kind of physical activity program for those obvious reasons, first being able to at least have some level of functioning that would at least allow someone to be able to go on walks is important.

People with severe M.E. are obviously not in this category though, and their focus if treating lyme would be solely on the treatment itself until they can sustain a better level of functioning, and have at least minimal exercise without setting themselves further back. In terms of speculation between M.E. and Lyme disease it seems that both categories have such vast differences in symptoms, and clinical presentation with patients that it is very hard to be able to tell distinct differences between the two groups of people.

However between the two severe M.E. is definitely in a level of severity and illness above and beyond the typical cases of Chronic Lyme, and CFS diagnosis that is more commonly seen. Between the two diagnosis' it seems there are similar issues and dysfunction that affect the body in the same way though i.e. Neuro/immune and cognitive dysfunction are common in both. Perhaps then in each case the difference is the driving factor that sets these cascading factors of dysfunction that needs to be solved, which seems to be a bit different between each patient case. I believe a cure could effectively neutralize these issues though, regardless of too much variations between trigger or ongoing causes in symptoms. Perhaps then a coinciding treatment would just vary case by case?

 

[panckage]

I just think stating exercise is beneficial is silly. I mean if it's not making you any worse, as it would the majority of us on this forum, then chances are it's doing some good.

On the other hand isn't it just as silly that people come here and get upset at people who have found exercise helps their symptoms?

 

[SOC]

On the other hand isn't it just as silly that people come here and get upset at people who have found exercise helps their symptoms?

Uh, no, since Exertion Intolerance/PEM/PENE is a defining feature of the disease. Encouraging people to engage in an activity that by definition exacerbates their condition is both unwise and unkind.

My symptoms have improved enough that I can do a tiny amount of deliberate exercise. It does not improve my ME one bit. It does make me a little bit stronger and more flexible which I hope is a benefit to me later down the road. I see a reason to exercise a little now that I can, but it has nothing to do with improving my ME. It changes nothing in my neurological or immune symptoms, which are key features of ME.

All too often people confuse exercise intolerance and PEM, just like they confuse chronic fatigue (the symptom) with ME. Exercise intolerance and fatigue are symptoms of many conditions and can, in some cases, be improved by exercise. People who have exercise intolerance and/or fatigue but not true PEM don't have ME, so their experience with exercise doesn't apply to people with ME. To exhort PWME to exercise because exercise works for non-ME exercise intolerance or fatigue is, at best, not a good idea.

 

[Martial]

Uh, no, since Exertion Intolerance/PEM/PENE is a defining feature of the disease. Encouraging people to engage in an activity that by definition exacerbates their condition is both unwise and unkind.

My symptoms have improved enough that I can do a tiny amount of deliberate exercise. It does not improve my ME one bit. It does make me a little bit stronger and more flexible which I hope is a benefit to me later down the road. I see a reason to exercise a little now that I can, but it has nothing to do with improving my ME. It changes nothing in my neurological or immune symptoms, which are key features of ME.

All too often people confuse exercise intolerance and PEM, just like they confuse chronic fatigue (the symptom) with ME. Exercise intolerance are symptoms of many conditions and can, in some cases, be improved by exercise. People who have exercise intolerance and fatigue and/or fatigue but not true PEM don't have ME, so their experience with exercise doesn't apply to people with ME. To exhort PWME to exercise because exercise works for non-ME exercise intolerance or fatigue is, at best, not a good idea.

Which is why this was discussed in relation to Chronic Lyme disease and not M.E., Though I do feel PEM is common for people with lyme too. You can feel a lot worse the next day, week, or few days, if you over do it, and sometimes it can set a reaction of an over stimulated nervous system causing weak shaky legs, and all kinds of other weird and very uncomfortable stuff the days after exercise, I don't get flu like feelings but for others it can worsen that too. P.E.M. by definition is a worsening of the base line condition of the illness following exercise, so from this alone Lyme can also apply to it, although it does not happen every time and affects people in different kinds of ways. Nothing compared to the PEM a severe M.E patient would probably experience perhaps, and it definitely seems to not happen without exception every time with exertion, so perhaps that alone makes a huge difference between the two as well.

It was also definitely not exercise alone that helped me, but the treatment to get a baseline where I could handle slow and controlled exercise while focusing on regaining more health under the care of my doctor. My point here is just that things can be a lot more broad spectrum than usually perceived and there is definitely a gray area on what certain definitions are within communities. However again Severe M.E. and exercise are NEVER a good idea together. I never meant to state that in the first place and again will say the same now. This thread is about an article of the effects of exercise and lyme disease so that is what the theme of our discussions have revolved around. I know the frustration people feel on these forums when talking about GED, and it makes perfect damn sense why they don't want to hear about that since it has made many much more sick! So i am not one to be suggesting this kind of stuff to people dealing with that.

 

[Aerose91]

I think this is the BIG question. While the LYME/M.E debate rages across the forums and FB groups this is the one question that would help to answer the bigger question - are M.E and Lyme the same thing, or does Lyme cause M.E?

I've come to my own conclusion on this over the years. I dont think PEM (as it is defined with ME) is a symptom of lyme. However, i think lyme can push someone over the edge into M.E. so they suffer the effects of both. I read something from Rich Vank a while back where he hypothesised that exercise intolerance, or PEM as we speak of it, is caused by a severe lack of glutathione leading to oxidative stress in particular cells. We know that exercise causes increases oxidation so that could push it to the point of damage.

That theory got backed up for me when i was getting the P.K. protocol from my doctor and the IV's were followed by a glutathione injection. Fatigue has never really been a big symptom for me but PEM has been a major one. The days i got the glutathione injections i was able to walk up to the third floor of a mall and all the way across it to go to a store without any PEM symptoms. For me if its mild PEM i will be lightheaded, brain fogged and have muscle weakness later that night. If its more severe it will take 3-4 days to hit and in the middle of the night ill wake up like I'm plugged into a light socket; searing pain, nearly seizing, convulsions, psychosis, dementia and followed by an instant, significant drop in brain function. 2 years later this drop in brain function has been permenant.

With a large shot of glutathione, none of these happened, i was fine the next day. I know some people respond negatively to GST but i did fine with it

My assumption is that in some people, lyme pushes them over the edge into ME wherase others who have less toxicity, less coinfections or were generally healthier beforehand, dont get ME and all the fun, torturous symptoms that go with it.

What i really want to know is what are the mechanics of disease progression from overexertion and is it repairable.

 

[Martial]

I've come to my own conclusion on this over the years. I dont think PEM (as it is defined with ME) is a symptom of lyme. However, i think lyme can push someone over the edge into M.E. so they suffer the effects of both. I read something from Rich Vank a while back where he hypothesised that exercise intolerance, or PEM as we speak of it, is caused by a severe lack of glutathione leading to oxidative stress in particular cells. We know that exercise causes increases oxidation so that could push it to the point of damage.

That theory got backed up for me when i was getting the P.K. protocol from my doctor and the IV's were followed by a glutathione injection. Fatigue has never really been a big symptom for me but PEM has been a major one. The days i got the glutathione injections i was able to walk up to the third floor of a mall and all the way across it to go to a store without any PEM symptoms. For me if its mild PEM i will be lightheaded, brain fogged and have muscle weakness later that night. If its more severe it will take 3-4 days to hit and in the middle of the night ill wake up like I'm plugged into a light socket; searing pain, nearly seizing, convulsions, psychosis, dementia and followed by an instant, significant drop in brain function. 2 years later this drop in brain function has been permenant.

With a large shot of glutathione, none of these happened, i was fine the next day. I know some people respond negatively to GST but i did fine with it

My assumption is that in some people, lyme pushes them over the edge into ME wherase others who have less toxicity, less coinfections or were generally healthier beforehand, dont get ME and all the fun, torturous symptoms that go with it.

What i really want to know is what are the mechanics of disease progression from overexertion and is it repairable.

In terms of permanent damage even some of the more severe M.E. cases have had remission and no lasting effects on the body after the symptoms had left. I don't think from my understanding anything is permanent from CFS, however things can make the condition worse in the very long term. Until the whole illness itself leaves. So as an example what you mentioned about your brain functioning not returning to a higher base line after all this time. I don't think it will stay that way if the disease itself goes into remission. There was that other member who posted just recently about her remission with rutixmab after suffering over 20 years with M.E. I wish I could remember her name, but her post was fairly recent and seen by many, I am sure someone can link it if they know.

 

[Aerose91]

I just meant permenamt up to this point. So far there has been no improvement. Though i havent seen many positive outcomes from people with overwxertion damage, we dont know nearly enough about this illness for me to say its irreversible. I always have hope. I will say things have fluctuated much less and only moved downward since the first overexertion episode so its definitely a force to be rekoned with.

 

[Valentijn]

On the other hand isn't it just as silly that people come here and get upset at people who have found exercise helps their symptoms?

No one is upset that exercise helped someone's symptoms. But ME patients might get upset if such a person claims to have ME and/or claims exercise will help people with ME.

In that case, they're obviously talking out of their rectum

 

[Helen]

I just meant permenamt up to this point. So far there has been no improvement. Though i havent seen many positive outcomes from people with overwxertion damage, we dont know nearly enough about this illness for me to say its irreversible. I always have hope. I will say things have fluctuated much less and only moved downward since the first overexertion episode so its definitely a force to be rekoned with.

Maybe my n=1 story could give you some hope. I´m diagnosed with Lyme and two co-infections by one top specialist who examines infections a.o. thourough, and also with ME by another top specialist. Time will tell if I have both. I do have PEM. After i.v. antibiotics I recovered for a month (so apparently severely affected muscles could heal. Could hardly walk before) until I was physically active for some hours and crashed again. My lyme doctor told me that the Lyme bacterias impairs the stomach and gut and causes overload of bacterias producing lactate. The lactate spoils the muscle functioning. So now I am on treatment for the lactate producing bacterias too. I wasn´t expected to have that fast recovery, but that it will take another year to really get better. FWIW.

 

[justy]

@Aerose91 - I also do really well with Glutathione. I had 6 weeks of IV Glut and vitamins this summer - 3 x a week and two weeks after the course finished I was up and about all day long - no day time bedtime for 2 months! even started thinking about buying a car and driving again - making plans to move house etc. This didn't last though and my M.E/Lyme specialist has said I could have them twice a week ongoing - just cant find a place near me to do them, or find the money!

 

[Helen]

@Aerose91 - I also do really well with Glutathione. I had 6 weeks of IV Glut and vitamins this summer - 3 x a week and two weeks after the course finished I was up and about all day long - no day time bedtime for 2 months! even started thinking about buying a car and driving again - making plans to move house etc. This didn't last though and my M.E/Lyme specialist has said I could have them twice a week ongoing - just cant find a place near me to do them, or find the money!

Off topic, sorry.
Also sorry to hear that you, Justy, can´t get the treatment that makes you so much better. May I ask if you have tried any oral glutathione and/or precursors to glutathione as N-acetylcysteine or alfa lipoic acid? Any effect?

 

[Hanna]

@justy have you tried the liposomal GSH ? It may help you. (it does for me at 2X450 mg a day).

 

[Helen]

@justy have you tried the liposomal GSH ? It may help you. (it does for me at 2X450 mg a day).

What brand? Thank you

 

[Hanna]

I order Lypricel GSH from iherbs. It is from LivOn Laboratories though they changed the brand name. I react the same way as to the old stuff.

 

[Rhysmanchester]

It's not GET, but it's a second cousin, recommending sick people exercise themselves out of their disease...

This was a feasibility pilot study. The purpose of this study was to create published research regarding exercise and Lyme disease which in 2011 was not only scant but simply non-existent. If one were to go to the NIH to apply for a grant to perform biomarker studies regarding exercise and Lyme they would say, "so it has been already established that people with Lyme can exercise?" Feasibility is required before more in depth studies can be done.

 

[Rhysmanchester]

Medicine & Science in Sports & Exercise? For an infectious disease? Sample size: 8.


I can't wait to read the study in its entirety.

Of course, Lyme peeps will know we are encouraged to do exercise, but that is to leverage oxygen levels to combat Borrelia (or something like that). Somehow, I don't believe this is the same thing.

Medicine & Science in Sports & Exercise? For an infectious disease? Sample size: 8.


I can't wait to read the study in its entirety.

Of course, Lyme peeps will know we are encouraged to do exercise, but that is to leverage oxygen levels to combat Borrelia (or something like that). Somehow, I don't believe this is the same thing.

This study was a feasibility pilot study. The authors were trying to establish that it was feasible for patients with Lyme disease to perform a month long resistance training exercise protocol without dropping out. If you apply to the NIH for a grant to do more significant (and expensive) studies, they will want to see feasibility already established. That is what these authors were trying to accomplish. A n=8 was adequate for a feasibility pilot study and private donor money does not grow on trees.

 

[Rhysmanchester]

The researchers don't believe the patients are sick. They think post-treatment Lyme is another psychosomatic disorder, and that's why they propose using quackery to treat it.

Nope. One of the "researchers" actually has chronic Lyme, babesiosis, and bartonellosis, which was received from sexual tx, not that it is even recognized as such.

 

[Rhysmanchester]

With lyme disease weight training exercise has actually been proven to kill the bacteria and help the lymph system and body get the toxins out. Dr. B of the ILADS board actually requires his patients to get on some form of exercise intensive programs during recovery, he states patients won't recover without inducing some kind of anaerobic exercise program. It also helps prevent relapse, or reduces its severity. This is for a totally different reason then traditional GET programs though, which are more seemingly ways to help "mental induced conditions" from the perception of certain medical doctors.

So while exercise alone won't completely make Lyme disease go away, it certainly can help and provide an extra boost on top of pharmaceutical and herbal treatment a patient goes under. All the lyme doctors seem to state that cardio exercise is always contradicted until further in remission. This stuff only applies to patients who are not too sick to exercise, if someone is more severely ill and can't get out of bed this is obviously not helpful.

http://www.lymeneteurope.org/forum/viewtopic.php?t=82

The ILADS 2008 guidelines and Dr. Burrascanos confusing directives on exercise are one of the main reasons this study was even undertaken.

 

[Dufresne]

Marty Pall and Grace Ziem were advocating nebulized GSH several years ago for "neural sensitization". I can't say I got much out of it, but if it actually gets a decent amount of GSH into your system it would be doing so at a fraction the cost of IV or liposomal.

 

[Aerose91]

I dont have the money to get GST but im undertaking methylation so i guess its not recommemded anyway. If i were though, i would make lipo glutathione myself, its worlds cheaper than buying it