Exercise Lyme Away?

[duncan]

I exchanged some correspondences with a leading neuro-Lyme expert out of Europe. Her specialty was/is spirochetes and their impact on the brain.

She was a firm believer - and she admonished me accordingly on occasion - that exercising promotes something to do with oxygen and that makes it difficult for Borrelia to replicate. (Sorry, can't recall the theory at the moment)

Anyway, her focus was on the severe cognitive deficits emerging in Lyme patients.

Of course, I am comforted in the knowledge that some IDSA guidelines fans assure us that neuroborreliosis is mostly constrained (with an occasional exception) to a species that they claim isn't found North America.

 

[Antares in NYC]

Of course, I am comforted in the knowledge that some IDSA guidelines fans assure us that neuroborreliosis is mostly constrained (with an occasional exception) to a species that they claim isn't found North America.

In the United States, Lyme disease affects only your knees.
Didn't you know that?
;-)

 

[Martial]

My ME/CFS doctor --a close research partner of Dr. Lipkin, btw-- told me once that the Lyme patients they see at their clinic seem to have more neurological/cognitive issues, but tolerate exercise a tiny bit more than their ME/CFS, Lyme-negative patients. Note: just in general terms. Just anecdotal testimony, nothing scientific, fyi.
They are also seeing more and more Lyme positive cases every year, and it has apparently spiked a lot in 2015.

None of this of course is to take away the need of assessment in each case. A lot of CFS/ME cases have gotten significantly worse following GET. This kind of exercise program is for the treatment of Lyme disease NOT related to graded exercise therapy for CFS/M.E. I sensed a bit of tension earlier on this thread for that reason and wanted to clarify.

 

[Antares in NYC]

None of this of course is to take away the need of assessment in each case. A lot of CFS/ME cases have gotten significantly worse following GET. This kind of exercise program is for the treatment of Lyme disease NOT related to graded exercise therapy for CFS/M.E. I sensed a bit of tension earlier on this thread for that reason and wanted to clarify.

Understood, and no worries.
People in the CFS and Lyme communities have been so abused that there's a tendency to be sensitive about certain subjects. Don't worry about it. You are amongst friends.

 

[Dufresne]

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. Why not conduct a study on getting enough sunshine, eating a balanced diet, or meditation? Is this really news that exercise tends to make people feel better?

Now weigh whatever enlightenment we could possibly glean from such a study against the implicit, "you should get off your asses." Does this study contribute anything meaningful?

Admittedly I'm perhaps a bit touchy on this one being a former fitness junky.

 

[duncan]

I wouldn't be surprised to see this study referenced by some IDSA supporters as evidence in support of their views. After all, the new Guidelines are scheduled to hit the streets in just a year.

It might not matter that the sample size was only 8. Nor matter who qualified the cohort. The metrics used to gauge improvement likely may be immaterial.

I worry that what will matter is what the stated results in the abstract imply, or can be spun to insinuate.

 

[Martial]

I wouldn't be surprised to see this study referenced by some IDSA supporters as evidence in support of their views. After all, the new Guidelines are scheduled to hit the streets in just a year.

It might not matter that the sample size was only 8. Nor matter who qualified the cohort. The metrics used to gauge improvement likely may be immaterial.

I worry that what will matter is what the stated results in the abstract imply, or can be spun to insinuate.

ONLY EIGHT?! :O

 

[Martial]

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. Why not conduct a study on getting enough sunshine, eating a balanced diet, or meditation? Is this really news that exercise tends to make people feel better?

Now weigh whatever enlightenment we could possibly glean from such a study against the implicit, "you should get off your asses." Does this study contribute anything meaningful?

Admittedly I'm perhaps a bit touchy on this one being a former fitness junky.

Understandable, but the assertion in this case for exercise is actually possible implications of bacterial killing abilities, due to changes in soft tissue blood flow, oxygenation, and raised core tempeture, among other things that aneaorbic exercise brings about. But these statements and science are a different category then the whole exercise is good for you, move your body around, feel better with the endorphins from exercise, etc, type statements you often hear from doctors and the fitness industry. Which more fit in with the eat well, get plenty of sleep, meditate, get enough sunlight, etc type things. I am obviously paraphrasing a lot here but I think you know what I mean.

 

[Dufresne]

Understandable, but the assertion in this case for exercise is actually possible implications of bacterial killing abilities, due to changes in soft tissue blood flow, oxygenation, and raised core tempeture, among other things that aneaorbic exercise brings about. But these statements and science are a different category then the whole exercise is good for you, move your body around, feel better with the endorphins from exercise, etc, type statements you often hear from doctors and the fitness industry. Which more fit in with the eat well, get plenty of sleep, meditate, get enough sunlight, etc type things. I am obviously paraphrasing a lot here but I think you know what I mean.

I don't think they're implying bacterial killing abilities due to blood flow, oxygenation, raised body temperature, or anything. That would assume they were addressing "Chronic Lyme" and, well, that doesn't exist. Moreover you wouldn't be able to get your body temperature up high enough with exercise to have any thermal killing effect. Such a thing would require getting one's temperature up over 104, at least.

Meditation is known to enhance one's immunity, so is a balanced diet. Adequate sunshine will elevate vitamin D and get one's circadian rhythm in sync. All of which are beneficial for someone with a chronic immune disorder. I don't think this study is any more valuable than studies into these lifestyle choices would be.

I'm not against such studies, I just think it's better if there's some empirical way of gauging changes. Subjective measurements of happiness, energy, etc, don't make the best science. They're also very likely to show up in both controls and the afflicted. So forget about a real comparison.

And, yeah, eight people?

 

[Martial]

I don't think they're implying bacterial killing abilities due to blood flow, oxygenation, raised body temperature, or anything. That would assume they were addressing "Chronic Lyme" and, well, that doesn't exist. Moreover you wouldn't be able to get your body temperature up high enough with exercise to have any thermal killing effect. Such a thing would require getting one's temperature up over 104, at least.

Meditation is known to enhance one's immunity, so is a balanced diet. Adequate sunshine will elevate vitamin D and get one's circadian rhythm in sync. All of which are beneficial for someone with a chronic immune disorder. I don't think this study is any more valuable than studies into these lifestyle choices would be.

I'm not against such studies, I just think it's better if there's some empirical way of gauging changes. Subjective measurements of happiness, energy, etc, don't make the best science. They're also very likely to show up in both controls and the afflicted. So forget about a real comparison.

And, yeah, eight people?

Fair enough, those are good points. I don't mean to take away from the other things either, just that in the case of this supposed niche way to kill lyme that exercise would be proposed beneficial. These aren't studies taken by people of the like in the CDC, but rather the ones who adhere the idea of and treat chronic lyme, which is a highly controversial thing still. Which is kind of backwards because this is something that actually was definitely proven to be true. This was done in some studies with monkeys and primates that were injected or contracted the disease, were treated with antibiotics per CDC protocol to "cure", thenn examination upon autopsy revealed borrelia bacteria still in tact in tissue and brain matter. There is no denying that plenty of doctors have prescribed the strength exercise protocols to their patients, and it has shown highly beneficial for those clients as well. Just the same that meditiation, sunlight, sleep, and a balanced diet would do even taking away the idea that exercise is not directly borreliacide.

 

[Dufresne]

True, these aren't the bad guys, and I don't think they meant any harm. Still I think their decision to conduct such a study was poorly considered.

It turns out Dr d'Adamo (co-author) and I have something in common in that we're both ACE-certified personal trainers. It's funny because my attention was recently directed to a page on ACE's website where they recommended training for people with ME/CFS, implying the condition was due to a lack of conditioning. I was sure to give them a blast for their ignorance. It just shows everybody has faith in what they flog, whether it be founded or not.

At least in the above study the authors seem to recognize the seriousness of the condition. But I think the lifestyle thing is just too redundant without empirical measurements.

 

[Aerose91]

I just think this study is refrencing solely lyme patients and not those with lyme and ME. I have lyme (bartonella) and walking a littoe too much in the beginning of this illness has severely progressed it. There has been no recovery since. Had i of tried to "exercise" i dont even want to think of what would have happened

 

[duncan]

@Aerose91 , I agree with you that this study is limited to supposed Lyme patients.

Those diagnosed with both ME/CFS and Lyme are frequently faced with two conflicting recommendations, ie, Lyme = exercise regularly, ME/CFS = exercise only as you can within your envelope (for many, this may mean very little to none).

I defer to ME/CFS protocol because I must. If I did not, I would be in perpetual PEM. But by not exercising regularly, we are theoretically encouraging the spread/worsening of Bb within us - and all that that implies comes into play

btw, you state parenthetically you have bartonella. The way you listed it, I can almost infer that you are saying you have it, and not Lyme. Which may in fact be the case since they are two distinct illnesses.

OR, are you saying you have both? OR are you equating Lyme with bartonella?

I am also figuring you have ME, and like many of us, defer to it when it comes to exercise - and you found out you have little choice in the matter that isn't laced with some form of poison. Sorry. It is a hard conflict to resolve, and I fear we each figure it out in a no-win fashion.

 

[Martial]

@Aerose91 , I agree with you that this study is limited to supposed Lyme patients.

Those diagnosed with both ME/CFS and Lyme are frequently faced with two conflicting recommendations, ie, Lyme = exercise regularly, ME/CFS = exercise only as you can within your envelope (for many, this may mean very little to none).

I defer to ME/CFS protocol because I must. If I did not, I would be in perpetual PEM. But by not exercising regularly, we are theoretically encouraging the spread/worsening of Bb within us - and all that that implies comes into play

btw, you state parenthetically you have bartonella. The way you listed it, I can almost infer that you are saying you have it, and not Lyme. Which may in fact be the case since they are two distinct illnesses.

OR, are you saying you have both? OR are you equating Lyme with bartonella?

I am also figuring you have ME, and like many of us, defer to it when it comes to exercise - and you found out you have little choice in the matter that isn't laced with some form of poison. Sorry. It is a hard conflict to resolve, and I fear we each figure it out in a no-win fashion.

It doesn't mean that you are left to worsen if you do not exercise with lyme disease. It is highly thought to be beneficial if possible for a lot of patients, but certainly it does not mean people can't get well without it. If someone feels they really will get worse with exercise and has experienced so in the past common sense would say well I shouldn't do that yet, but I can at least take some treatment now until I become more well and if then possible I can add it in later.

Dr. B seems to think none of his patients will go into complete remission without exercise but that is only one doctors opinion and I believe it is only after a certain point in progressive healing as well. Exercise is always an option further down the line when a patient feels competent in doing so later in treatment, sometimes this could mean just simple yoga strength exercises too.

 

[bmoberg337]

For anyone that is interested I blogged about this a while back.

http://sublymelife.blogspot.com/?m=0

Although the blog is mostly directed toward aerobic exercise some principles also apply to anaerobic conditioning.

I'm not sure I fully understand the concept behind tissue oxygenation while performing anaerobic exercise. There would actually be oxygen debt in the soft tissue while performing this type of exercise. More importantly, I commonly see people make the connection that borellia is an anaerobic microbe so this must mean oxygen will kill it. Although this has been proven in vitro it's likely that you would never get tissue O2 levels high enough in Vivo. Although hyperbaric treatment has been shown to elicit some improvements for Lyme patients this probably has more to do with the higher O2 partials pressure and their interaction with the immune system. In other words higher O2 has indirect benefits to kill the spirochete. Such is likely the case with exercise as there are immune benefits, given the right type, intensity, and timing of integration.


Fwiw, i was an elite level cyclist before falling ill. Proper nutrition along with tons of exercise have always been a way of life for me but was certainly not enough to prevent or cure my illness. Even as I have progressed into treatment I have continually tested the waters with very light weight lifting and it has resulted in set backs that require me around 6-8 weeks to return to my previous baseline.

Although im a huge proponent of exercise as an adjunctive therapy, it's definitely a case by case basis sort of deal. There are certainly a lot of factors that need to be considered before giving someone the green light to exercise.

 

[Vitalic]

The problem comes when you don't really know if what you are "treating" is Lyme or ME/CFS. Every time I force myself to do exercise and it is so very apparent my body is not tolerating it I am lead more towards believing the Lyme diagnosis is incorrect and that I am probably damaging myself in a futile attempt at increasing oxygenation. Fertile ground for psychosis.

 

[Aerose91]

Can lyme, babesia or bartonella cause exercise intolerance like ME does?

 

[Martial]

For anyone that is interested I blogged about this a while back.

http://sublymelife.blogspot.com/?m=0

Although the blog is mostly directed toward aerobic exercise some principles also apply to anaerobic conditioning.

I'm not sure I fully understand the concept behind tissue oxygenation while performing anaerobic exercise. There would actually be oxygen debt in the soft tissue while performing this type of exercise. More importantly, I commonly see people make the connection that borellia is an anaerobic microbe so this must mean oxygen will kill it. Although this has been proven in vitro it's likely that you would never get tissue O2 levels high enough in Vivo. Although hyperbaric treatment has been shown to elicit some improvements for Lyme patients this probably has more to do with the higher O2 partials pressure and their interaction with the immune system. In other words higher O2 has indirect benefits to kill the spirochete. Such is likely the case with exercise as there are immune benefits, given the right type, intensity, and timing of integration.


Fwiw, i was an elite level cyclist before falling ill. Proper nutrition along with tons of exercise have always been a way of life for me but was certainly not enough to prevent or cure my illness. Even as I have progressed into treatment I have continually tested the waters with very light weight lifting and it has resulted in set backs that require me around 6-8 weeks to return to my previous baseline.

Although im a huge proponent of exercise as an adjunctive therapy, it's definitely a case by case basis sort of deal. There are certainly a lot of factors that need to be considered before giving someone the green light to exercise.

Aerobic exercise is actually extremely dissuaded in the case of lyme and co infection, something about the anaerobic metabolic system is supposed to help with the infection, where as the mechanisms of aerobic activity can make a patient worse with less benefit.

 

[Martial]

Can lyme, babesia or bartonella cause exercise intolerance like ME does?

Yes, a lot of lyme patients are so bed ridden and ill they cannot muster the ability to exercise at all, PEM is also common the following days after work outs, as well as makes exercise harder, and sometimes the affects of the pem are more immediate following. It has to be a controlled environment of exercise starting with a threshold that is low and working your way up to find what you can tolerate.

@Vitalic

Your body won't respond positively to the exercise all the time, in fact in the beginning it usually makes you feel worse the next couple days after, and is still the case if you push it too hard later or it can sporadically still happen at random, just part of being Ill after all. But the idea is over time you take a slow and controlled enough approach that you build up a higher exercise threshold tolerance. Weight and resistance based training is easier to manage in energy expenditure than cardio as well. You have to get to a point where you feel well enough to take on a resistance program no matter how little the expenditure is first and foremost. Exercise can affect Lyme patients in all kinds of ways which is why auto regulation within a training program is so critical.

You may feel worse to get better, but you need to get to the point of being able to notice if it is making you feel worse at times but making you progressively more well, or just setting you back further. If you feel being set back further with an incremental program that starts at a very slow pace, either drop it back with intensity, frequency, or time under tension, or drop the program until one is well enough to resume. You will not be able to tell if it is making larger improvements for at least a couple week period though.

I felt a lot more pain and some intensified symptoms in the beginning, and still at times myself. However even while still being ill I was able to start lifting weights again and built a ton of strength back and gained 17 pounds of body weight with very minimal fat gain since last January when I started. I had a heavy background in physique building so a lot was muscle memory, but my response to exercise was still very good, even if I felt sicker at times from it. I am still a lot more fit from resuming exercise after a year lay off from first getting sick. The changes in my body have been extremely helpful in minimizing a lot of my lyme symptoms, and it also correlated to a higher constitution and response to my lyme protocol as well.

This took TIME though, I started off very low and slow in the beginning and it was a really hard up and down process to work myself back into my current state while dealing with my illness, that being said I really feel I am much easier to respond to treatment now and the exercise itself hopefully helped to clear things out of my system as well. I could barely afford lyme treatment while sick so at times I was either on half the doses I needed, or stopped taking certain herbs I needed because of low funds, and it just made the treatment itself not as effective as it should have been in the first seven months. I believe exercise was the added thing that helped when I was not able to be on full treatment all the time, or had to keep cycling things because of lack of funds. I now thankfully can easily afford the herbs I need because I found out after this LONG I can buy the damn stuff in bulk and make tinctures, and take the powders myself for much, much cheaper haha.

Sorry for the typos!

 

[justy]

Can lyme, babesia or bartonella cause exercise intolerance like ME does?

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.