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» LymeNet Flash » Questions and Discussion » Medical Questions » post exertional malaise/pain/herx...anyone had success getting rid of this?

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Author Topic: post exertional malaise/pain/herx...anyone had success getting rid of this?
garunner
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I'll try to be as brief as possible. Been treating for 3+ years (IV and now pulsing orals). Much better in many ways (I lead a modified life, but feel "okay" a lot of days, but still treat and take meds for sleep and pain as needed), but continue to have CFS like reaction to exercise/exertion, including a "crash" after exercise, brain fog, very slow respiration (like I could simply stop breathing), chills, nausea, muscle pain worse than associated exercise should generate, feeling worse rather than better after activity, etc. This occurs from about 2 to 6 hours after the activity. I recover somewhat after a night's sleep and by the second day I am pretty much back to normal. This is an improvement over pre-treatment, when I would be bed bound for several days.

I have been trying for 2 years to wisely, slowly, ramp back up to a decent fitness regimen, but there's a wall that I can't get past. I try to avoid hitting it, but sometimes I overdo, and I know exactly what's coming.

At this point, I'm not even sure if I have active infection (even though I am still treating) or if my symptoms are unrelated to Lyme.

In my latest quest for an answer, I have looked into the following and would appreciate a response from anyone who can share their experience or who has any suggestion at all:

CPET test/retest at University of the Pacific (Staci Stevens MA)

Ampligen (experimental drug for CFS)

Valcyte (as an answer for post exertional malaise/exercise intolerance).

Thanks is advance for any replies!

--------------------
IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements.

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garunner
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Darn,
Posted this in the wrong place. Moderators, please move to Medical.

Thanks!!

--------------------
IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements.

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Lymetoo
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Got it!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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So that more can read with some breathing room for the eyes:

Garunner writes:
---------------------

I'll try to be as brief as possible.

Been treating for 3+ years (IV and now pulsing orals). Much better in many ways (I lead a modified life, but feel "okay" a lot of days, but still treat and take meds for sleep and pain as needed),

but continue to have CFS like reaction to

exercise/exertion, including a "crash" after exercise,

brain fog, very slow respiration (like I could simply stop breathing),

chills, nausea,

muscle pain worse than associated exercise should generate, feeling worse rather than better after activity, etc.

This occurs from about 2 to 6 hours after the activity. I recover somewhat after a night's sleep and by the second day I am pretty much back to normal.

This is an improvement over pre-treatment, when I would be bed bound for several days.

I have been trying for 2 years to wisely, slowly, ramp back up to a decent fitness regimen, but there's a wall that I can't get past. I try to avoid hitting it, but sometimes I overdo, and I know exactly what's coming.

At this point, I'm not even sure if I have active infection (even though I am still treating) or if my symptoms are unrelated to Lyme.

In my latest quest for an answer, I have looked into the following and would appreciate a response from anyone who can share their experience or who has any suggestion at all:

CPET test/retest at University of the Pacific (Staci Stevens MA)

Ampligen (experimental drug for CFS)

Valcyte (as an answer for post exertional malaise/exercise intolerance).

Thanks is advance for any replies!

--------------------
IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements.

(Garunner in Atlanta)
-

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Keebler
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Many links here explain some aspects of "exercise intolerance":
-----------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=077325;p=0#000000

Topic: To everyone with CARDIAC symptoms please read!

Includes:

Cardiac explanations & support

Dr. B's exercise and PT Rehab guidelines,

The article: "when exercise doesn't work out" (and what we can do about that)

MITOCHONDRIA, MYELIN & ADRENAL SUPPORT

Tai Chi, Qi Gong, Pilates -- styles that can be adapted for just about any body.
-

[ 09-22-2014, 01:22 PM: Message edited by: Keebler ]

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Keebler
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From a discussion board:

http://forums.phoenixrising.me/showthread.php?13426-The-International-Consensus-got-it-wrong!

The International Consensus got it wrong!

August 25, 2011

Excerpt:

. . . In the International Consensus they use the term Post-Exertional Neuroimmune Exhaustion (PENE pen ׳-e). Exhaustion is just another word for fatigue.

I don't have post-exertional fatigue.

I have post exertion symptom exacerbation. Many of use don't feel more fatigued or exhausted after exertion.

We feel sicker. . . .

-----------

http://phoenixrising.me/forums/showthread.php?4956

The term "Post Exertion Malaise" is also insulting.

Comments at link.
-

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Keebler
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You say: " . . . very slow respiration (like I could simply stop breathing). . . ." (end quote).

You did not mention taking acetaminophen but if you do, consider:
--------------------

http://www.nytimes.com/2011/12/20/health/evidence-mounts-linking-acetaminophen-and-asthma.html?_r=1&src=me&ref=general

December 2011

Studies Suggest an Acetaminophen-Asthma Link

Excerpt:

. . . Even a single dose of acetaminophen can reduce the body’s levels of glutathione, a peptide that helps repair oxidative damage that can drive inflammation in the airways, researchers have found. . . .

============================

Actually, liver health plays a huge role in the ability to exercise. The "Cardiac Thread" above just barely touching upon that relationship.
-

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Keebler
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You say that you are not sure if lyme is still a player here or not. There is a new lyme test that you might want to consider. Links are at the end of this thread, see Advanced Labs.
----------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)
-

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Keebler
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Just one more thought and I'll give you back your thread.

As "post-exertional exacerbation of symptoms" has been a major problem for me, I've collected lots of tidbits. Of course, infection must be addressed, liver and kidneys happy and also adrenal support matters greatly.

As we know, the HPA-axis can just get clobbered with lyme.

HPA axis explained:

http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

================================

http://findarticles.com/p/articles/mi_7396/is_324/ai_n54480513/

Heal the hormones to heal from Lyme disease

- by Connie Strasheim - Townsend Letter - July, 2010

be sure to scroll down past a section of ads that looks like the end of the article. This is a four-page article.

Excerpt:

. . . Cortisol allergies produce all the signs
and symptoms of adrenal insufficiency, but often, adrenal function in people who have these allergies is normal. . . .

========================

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
-

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dal123
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Had the same happen to me yesterday after five hours of moving, did not lift any thing heavy, but was pushing some things, carrying several full 1/2 gallon glass jugs of water, etc. After finally finishing, had pain which I don't usually have, was really tired, so pulled out an u2 concentrator, did 1/2 hour @4 L/min, & felt much better afterwards. going to see if my Dr will prescribe oxygen as an anti infective therapy I could do 20 mins in am before work and another 20 min session in the pm. I don't know if this would inflame babesia, cause it to rear it's ugly head, I know ozone does but what about breathing on oxygen?
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aperture
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Keebler, you are so right when you called it "post-exertional exacerbation of symptoms". That description hits the nail on the head for what I deal with too.

--------------------
aperture

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garunner
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Thanks, Keebler, for all the great links. I've got my reading material for the evening!

--------------------
IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements.

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Keebler
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Other comments here are interesting, too:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=128685;p=0

Topic: Seem to be symptom free now, but exercise kills me
-

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Keebler
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As this thread has developed into a nice collection of information (I hope), here's an very important account from Brussels who wrote this is a similar thread:

Brussels writes on 7-22-12:

Mjoey had post exertional malaise so it was hard to exercise. Lyme was not an issue for him anymore after the Bionic treatment, I suppose.

He continued to have CFS but no longer lyme.

I had a problem with physical exercises, I couldn't exercise for lack of energy... I could barely stand up and take a shower, so how could I think about exercising?

I got better almost without any exercise program. I love walking though, so I think I only kept moving ONLY after I had the energy for that, but never did any systematic training.

When I finally got well, I could swim and cycle up and downhill again... But that was AFTER LYME was gone.

I guess each case is a case... of course if I could, I would have done something, but I could barely make any mental calculation of 2 + 3 = 5 as it consumed too much energy, couldn't concentrate to cook more than one dish the whole day as I kept forgetting what are the steps, one after another.

It was total lack of energy in my case. So nope, exercise was not for me during the worst months... Only later, when I got slowly better.

(end Brussels' post)
-

[ 07-22-2015, 06:40 PM: Message edited by: Keebler ]

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duncan
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PEM - great subject!

I will gladly stir this pot: I'm doubtful most LLMD's early on understood this.

I think more do today, though, or at least I would hope so, but I suspect most still do not.

Part of the problem rests with definitions, and perhaps cross-elasticities among diseases and disorders.

[ 07-22-2015, 04:48 PM: Message edited by: duncan ]

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Keebler
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Part of the problem also gets wrapped up in attitudes, expectations, judgment from

society, most health care providers, teachers, bosses, coworkers, family, friends, ourselves.

Who could even imagine - much less believe - such bouts of nearly paralytic & sick-to-the-bone exhaustion? [Rhetorical question, of course but I know I've had more than a ton of shaming over this matter.]

Add the inner ear / middle ear / vestibular challenges that often go with tick-borne infections and all bets are off for any kind of accomplishments actually ever getting done (and done well).

Add in other relating sensory challenges that tangle up thinking and moving and, please, just let me disappear with a "Beam Me Up, Scotty!"
-

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duncan
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Keebler, yes. I'm sorry. Me, too.

PEM goes against every medical tenet of which I am aware.

If you suffer with it, you will almost invariably be told to work through it - which is the worst thing one can possibly do.

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Keebler
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Duncan,

You do realize it took me forever to figure out what you mean by PEM (hint to other, the topic). Great to save the hits on the figures not to type out that full term, eh?

Good to know that the message is getting through to some that pushing through (work harder, faster) is not safe for many.

Beyond the consolation of some kind of spiritual acceptance (for now), it is a heart wrenching loss and waste, though. So, as a country, world, we had better get off the IDSA error laden train ASAP.

Brussels' post today, though, is clear: attend to infection for real results. Support of adrenal, mitochondria, etc. is vital, of course, but infections require thorough & direct attention - however one does that.

And, therein lies great hope. In the end, fatigue may not lift or lift as much as we'd like, still, be sure the base issue of infections is fully attended.
-

[ 07-22-2015, 06:42 PM: Message edited by: Keebler ]

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duncan
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Aach, my bad. I guess it is obvious that, for me, some of my cognitive problems manifest with not anticipating how what I say or write will be interpreted. I tell people I have trouble thinking left or right, that I only think forward or backward - and not very well backwards. [Smile]

I should have explained: PEM = Post-Exertional Malaise.

But I agree with everything you have written.

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Keebler
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Always nice to be understood. Yet, sorry - in a way - that you are able to relate as I know what that means for you.

My thinking (like my body) has no directional awareness. I'm an off balance ball bearing in a pinball game. Always a surprise to me where I end up.
-

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SacredHeart
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Were you ever treated for Babesiosis? You mentioned chills and fatigue. I know these over lap, but maybe this could be a problem?

--------------------
Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

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Keebler
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SacredHeart,

garunner posted first 2.5 years ago so may no longer be here. I have this (bad?) habit of building on threads that have such good information, turning them into reference threads and that can be confusing. Sorry.

Good catch on the chills and fatigue, though. Others will do well to be clued to that as well for babesia.
-

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lpkayak
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I treated lyme a long time and recently had an incident with mold and i am.now txing with cert mold doc...a major mold sx is exercise intolerance. I have it very bad. I taught pe...i know what muscles are supposed to do with exercise...mine dont anymore.

Dr mercola interviews dr shoemaker on you tube....recent...easy to google. Many of the other sxyou are talkingvaboutvas well as ex intolerance cannbe from mold. There are tests that show that is the problem and a potocol to fix it.

I finaly feel.hope i might start to get better instead of keep getting worse

--------------------
Lyme? Its complicated. Educate yourself.

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koo
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I realize the initial post is from 2012 but I was in the exact same position. I felt okay exercising but within 2-3 hours I could feel myself sliding.

It was never malaise but a feeling of inflammation behind the sternum. I call this my Ground Zero. If I overdo it, I will eventually get feeling behind the sternum. It goes away in a day or three.

I chalk this up to adrenals. Adrenals, adrenals, adrenals. If I have a glass of water with 1/2 tsp of salt with lemon juice I recover much quicker. I have been taking an adaptogen as well which seems to help with this problem as well.

This is why I may possibly never be able to be a runner again or lift weights like I used to. Pilates, yoga, barre seem to be just the right amount of exertion that I can tolerate.

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Keebler
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Phoiph just posted this on a thread on a different topic.

"Amongst other things, when the mitochondria in the cells are not functioning properly (common in Lyme), there can be a build up of waste/toxins and imbalances in the cells which can cause pain and fatigue upon exercising.

I could not have tolerated exercise for this reason when I was very ill, so it was fortunate that mHBOT provided the oxygen to me in a different way.

I gradually became more and more exercise tolerant as I became well, and now am back to running, etc.

and

became well with my own home chamber...and have started a grassroots program to help other people access mHBOT more affordably. There are ways!

So as not to further hijack this thread, I would suggest reading the mild hyperbaric thread (all 12 pages if you can), so you can read about others' progress as well:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=125201;p=0

You can also PM me if you like...

(end Phoiph's posts)
-

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Keebler
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Even light weight training as Burrascano suggests can be impossible for some due to tendon, joint or tissue issues - or for other reasons just can't GRASP anything with hands or put pressure on other joints, etc.

something like Qi Gong or Tai Chi . . . or gentle Pilates can be very helpful as good non-aerobic movement, each with a variety of major benefits.

Qi Gong involves less turning of the head and side to side movement as in Tai Chi (although Tai Chi can be excellent, too). Qi Gong can be done sitting down or even lying in bed. For an hour or a minute.

Best to get expert instruction & advice not just from someone trained in a method but also someone who is very lyme literate. If they do not know about lyme, they may advise dangerous actions (that is, for someone with lyme / TBD).


http://life.gaiam.com/article/more-studies-confirm-tai-chi-and-qigong-heal-and-prevent-disease

Studies confirm benefits of Qigong

http://www.ncbi.nlm.nih.gov/pubmed/?term=QiGong

PubMed Medical Literature search for

Qigong - 440 abstracts

QiGong, oxygen - 14 abstracts

QiGong, circulation - 13 "

QiGong, cardiac - 41 abstracts

QiGong, brain - 31 "

QiGong, pain - 75 abstracts

QiGong, strength - 18 "

QiGong, balance - 18 "

QiGong, lungs - 8 abstracts

QiGong, mood - 40 abstracts
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Keebler
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MASSAGE also deserves good space here. For those who can access this therapy, it can be excellent in so many ways.

I knew of a teen with severe lyme for years and for long stretches of time, she could not exercise at all on her own (or move much at all even with excellent attitude and great effort), a massage therapist would work with her body.

Too many in our current "blame" society would not understand this but, sometimes, a person just cannot. There should be no shame in coming to terms with such facts and I do wish there were a way for all you needed or could benefit from massage to attain it. Good think she had parents who understood this.

Again, though, not all LMTs are equal regarding knowledge of what lyme does to a body or how to work with it and what to say to the dear person on the table.

Some comments can be crushing, coming from those who are not fully informed. I noticed this especially with many physical and occupational therapists, just crushing comments that they simply had no clue about why they'd be so - or that their advice was sometimes damaging for someone with lyme.

Most lyme support groups and LLMDs and LL NDs should know of those PTs, OTs, & LMTs in area who are best suited.
-

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Phoiph
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Just wanted to add 2 excellent articles:

Dr. Myhill explains how mitochondrial dysfunction affects exercise tolerance:

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

This article is written by a doctor who has CFS and Lyme, and uses oxygen therapies herself and with her patients:

"The Most Overlooked, Effective, Prescription Drug", by Dr. Jamie Deckoff-Jones:

http://www.greenmedinfo.com/blog/most-overlooked-effective-prescription-drug-1

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koo
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I'm reviving this thread again because this problem continues with me.

I don't treat anymore. I feel pretty well. I still eat clean for the most part and continue with supplements and herbs. I do take an adaptogen for adrenal support.

I have been exercising quite well for over a year. Nothing cardio but pilates and yoga. I've done very well with this and wanted to take it up a notch.

I started Pilates reformer personal training where exercises are more intense and call for more strength. I can do them fine. However, well afterward I notice an increased heart rate for quite a well....in the 80 range which is too high for me. It comes down after a few hours but I still get that feeling of inflammation behind the sternum. I don't think it's costochondritis because it is always in the same spot behind my sternum and never involves the rest of the ribs.

When I had active Lyme that discomfort was there all the time. It went away with treatment but does come back with too much exertion. It happened a few weeks ago when I attempted to play pickle ball. I played for about 45 minutes and I could tell while i was playing that the pain was going to happen afterward. It never happens during exercise.

I do take acetyl L-carnitine and have taken L-cysteine for mitochondrial support as well as Co-Q 10 but it never makes a difference. Am I missing something?

The pain goes away in 1-3 days. Today I drank 1/2 tsp salt in lemon water and that sometimes help. I don't get the malaise.

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Keebler
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"Taking it up a notch" may not be right for everyone. Although, it can take a period of adjustments and a long time to determine for each of us what works. And that can change over time, too.

Still, not everyone should "take it up a notch" even if healthy. I've come to realize strong exercise is just not the golden ticket for all across the board.

Not even among the healthy, is everyone's chemistry designed for or their internal engine "built" for exercise. And, for some, it's actually either no help or detrimental. [Though walking, some daily movement is still considered good, of course, just not active aerobic exercise.]

This comes as a shock to many -- there is a doctor from the UK who did BBC series of tests on this about two years ago. Michael Moser - Mosby- is not the last name, but close. I'll see if I can find that later -- but, uh . . . just too tired now. (Chuckles allowed).

His research on this is amazing - and it explains so much about the variable effects of strong exercise among individuals.
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Keebler
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koo,

the supplements that help you seem good for the liver. Still, as hard as it can be to judge in advance, it is likely better to stop before you have to honor any kind of "payback"

If we have "payback" it was too much.

There can be so many variables and processes going on regarding pain.

Also to consider, with any liver damage, exercise can be more difficult. I think it can be nearly impossible to come out of lyme without damage to the liver. The liver can heal, to some degree, over time and with good support but it can take years even once in a good remission.

If viruses are on board, the liver can be damaged (or at least hampered) as well.

Liver differences - the way we metabolize - could change the way we can tolerate exercise, too. Genetic differences, etc.

Too strong of exercise can also damage the liver more when it's stressed or not up to par. So, another reason not to push it too much. Liver stress will always bring body pain.

I do hope you can find your comfort zone and that it's where you want it to be so you can better enjoy the movement methods you choose. But just be sure not to ever let anyone else's voice or expectations push you.

It may be impossible have all the answers - and especially to answer to others' judgments or comments. Still, we can come to some kind of understanding with ourselves to try to read the signs earlier or just let experience (and not just our wishes) guide us as we decline to push ahead and settle back a bit instead.

The hardest part can be not measuring up to other's expectation - or to our own. Taking care of one's self -- when it means pulling back -- never ranks very high on the hero list but it certainly does require bravery in this regard, I do feel.

Our image of health, of measuring up to others -- in this U.S. of A. -- really does seem to bring a heavy call to push harder, faster, stronger. And that can be toxic in and of itself.

Still, there is (supposed to be) joy in movement. Speed / intensity need not be part of this picture, though.
-

[ 09-30-2015, 05:03 PM: Message edited by: Keebler ]

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Phoiph
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The article I posted above discusses chest pain in relation to exercise tolerance/mitochondrial dysfunction:

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

The entire article should be read for context, but here's a quote:

Chest pain

This is a common symptom in CFS. Chest pain results when energy delivery to the muscles is impaired. There is a switch to anaerobic metabolism, lactic acid is produced and this results in the symptom of angina. Doctors recognise one cause ie poor blood supply, ie the supply of fuel and oxygen is impeded. However this fuel and oxygen has to be converted to ATP by mitochondria, so if this is slow, the same symptom of angina will result.

One molecule of sugar, when burnt aerobically by mitochondria, will produce 36 molecules of ATP. In anaerobic metabolism, only 2 molecules of ATP are produced. This is very inefficient and lactic acid builds up quickly. The problem is that to convert lactic acid back to sugar (pyruvate) 6 molecules of ATP are needed (the Cori cycle). So in CFS the chest pain is longer lasting because this conversion back is so slow. Clinically this does not look like typical angina. Many patients are told they have non-typical chest pain with the implication that nothing is wrong! Actually, they have mitochondrial failure in the heart.

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duncan
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ME/CFS would be the only disease I know of where PEM is required diagnostically for all diagnostic protocols that have emerged in the last five years, including the one recently issued from the IOM that recommended changing the name of CFS to SEID.

So, the ICC, the CCC (I think), and the IOM all require PEM as a (the?) cardinal symptom for an individual to be diagnosed with ME/CFS.

This is NOT true for the old requirements, most of which hold sway to this day. Criteria like Fukuda and Oxford and Reeve's etc. Most of those simply insist on prolonged unexplained fatigue as the paramount symptom (along with a handful of secondary ones).

The old criteria are pretty much condemned in the ME/CFS patient and expert community.

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koo
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Pholph, I did read the article, it was interesting. I don't have chronic fatigue so I am not sure if this still applies? I honestly don't know.

I don't feel like I have angina. The feeling of inflammation is around the xiphoid process and slightly above and behind it as well (just at the bottom of the front bra line).

I just don't understand why I had this chronically when I had active Lyme but now that the Lyme is in a latent stage it's only aggravated when I activate muscles harder than usual.

I used to do the elliptical and some days it would be just fine. But some days it would aggravate this sternal/xiphoid process inflammation.

And, oddly enough, this is the only spot that bothers me. I can do Pilates where I think, wow, I will feel that tomorrow, but I rarely get muscle pain from this.

My instinct tells me it is adrenal related but could there be a mitochondrial component as well?

Would HBOT help with any of this?

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Phoiph
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Although this article was addressing CFS, as I understand it, mitochondria can be affected with any chronic disease, not just CFS.

Mild hyperbaric is effective for mitochondrial dysfunction and it also reduces inflammation, but whether this is what you are dealing with is the question...

It seems you don't have excess residual pain or fatigue in your other muscles...just in this one area...right?

I'm assuming you've already had a cardiac workup...and also checked for pericarditis...

Do you think it possible that you could have scar tissue (and therefore low blood/oxygen flow levels) in that area which is aggravated by exercise due to the increased oxygen demand (which can't be met due to limited blood flow)?

Just a theory...have you tried acupuncture to increase energy flow and circulation to that area?

[ 09-30-2015, 08:14 PM: Message edited by: Phoiph ]

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koo
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UPDATE. Something interesting happened last night. I still had the pain, and in fact around 7:30 PM it increased somewhat.

Instead of sitting on the sofa I like to district myself when I have this. So I had an Aveda voucher for a gift that expired yesterday.

I go to the Aveda store and get my birthday lotion. While checking out I start playing around with their essential oils.

I applied one that contained lavender, lavandin, and clary sage. Then I applied one of their chakra oils (fourth chakra) that contained sandalwood, mandarin, and palmarosa.

We then went to have dinner and when we sat down I noticed the pain was completely gone! I could not believe it.

My husband suggested I purchase whatever I put on and I did. I reapplied at bedtime and still have no pain this morning.

Now I need help from this board to help explain what happened!

I started reading up on chakras and it's actually the third chakra that is related to adrenal imbalance.

I find all this fascinating.

Thank you so much Pholph for your insight. I did have a cardiac workup, last in 2011 when lyme was very active. The cardiologist listened for pericarditis and I did not have it. In fact, when I pointed to the area of pain he told me my heart was not located there. Interestingly, he had a family member with Lyme.

I will definitely keep acupuncture in mind for this.

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garunner
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Wow! I only occasionally visit Lymenet these days and I was certainly surprised to see my post from 3 years ago! Long story short, my overall health is better. I recently had a negative IGENEX test for Lyme and Babesia, so I'm off antibiotics for now. I test positive for CMV, EBV, and HHV-6 and still have exercise intolerance (has not budged), so my LLMD put me on Valcyte. I've been taking it for about 9 months and it has been helpful with fatigue and I feel better, but it has not made any impact on post exertional symptoms, crashes, etc. I have tried every supplement under the sun, none of which help. I'm pretty resigned to my situation and that's okay.

BTW, in my post of 2012, I didn't mention my heat/sun intolerance. That's another symptom that I haven't had any luck in resolving either. My body isn't able to cool itself. I spend most of the summer indoors...I can tolerate shaded outdoor areas, but it's tricky living in the south. Anyone else experience this?

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IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements.

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Keebler
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garunner,

I have this habit (for better or for worse) of building onto certain threads that developed as a resource for when the same issue pops back up. Your thread topic most certainly touches many lives.

I hope it's okay with you that this has become a links set of sorts (?). If not, say so and I'll try to rebuild one (hah, in my dreams . . . but I could avoid adding to this or posting the link in reply to new question on this topic if you want it to bow out).

Glad to hear from you, even if all is not all dandy. With such chronic viruses, those alone would certainly explain post-exertional fatigue as that symptom is a major calling card of any chronic infection.

A lot has to do with the stress on the liver. You might revisit your liver support. But then, of course the adrenals shout at me "don't forget us!" as my hands demand me to stop.

I hope you can still find some things to help. It is possible. It simply has to be possible.
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garunner
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Keebler,
Please do keep this thread! You have some great resources on here. I take a couple of adrenal supplements, for what it's worth, but I will take a look at my liver support. I too, hope that someday, something's going to work!!

--------------------
IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements.

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Keebler
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garunner,

Glad to hear some of this detail is helping you, at least in some ways.
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Keebler
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Mast Cell issues can also cause trouble with exercise capabilities. LymeToo recently started this thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=133927;p=0

Could you possibly have MAST CELL ACTIVATION DISORDER?
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Keebler
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There can be a lot of overlap as suggestions for what can help regarding inability to exercise. There are also elements of this that need us to understand where the distinctions lie between similar conditions.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=133961;p=0

exercise intolerance

in there,

Duncan posted this very key detail so that we all know there is a difference between exercise intolerance and PEM:

PEM = post-exertional malaise. But don't be misled by "malaise". PEM is a worsening, frequently a pronounced worsening, of a patients symptom cluster caused by some form of exertion.

If you suffer with ten usual symptoms, you can count on most to be screaming at you during a PEM attack (although it may be limited to just a single symptom - each attack can be different).

There is usually - although not always - a lag between the exertion and the onset of PEM; typically 24 to 48 hours after exertion. It varies by person.

The length of the PEM episode varies as well, stretching from a couple of hours to days and even weeks.

The best way to confirm if you have PEM is see one of the few experts that can diagnosis it.

Alternatively, google it, but make sure you read up on it - even avowed ME/CFS experts conflate exercise intolerance with PEM. Geez, they even conflate chronic fatigue with CFS - and the two are really not related.

Exercise is a fairly universal remedy. It just doesn't always work, and in some diseases, it can worsen a patient's condition.

Indeed, there are channelopathies where REST causes episodic flare-ups. In Andersen-Tawil Syndrome, for instance, prolonged rest can result in paralysis.

Some of these diseases and disorders are so counter-intuitive as to throw off the most dedicated clinician.

(end Duncan's post)
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Keebler
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An important consideration that sixgoogykids just posted in another thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=134309;p=0

sixgoofykids' excerpt:

" . . . The exercise is to get oxygen to the tissue and to move out some of the bad stuff. It's not to build stamina. That will come as you start getting better. . . "
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Keebler
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https://www.sciencedaily.com/releases/2008/10/081026150147.htm

Exercise-induced Fatigue In Muscular Dystrophies Explained

Date: October 29, 2008
Source: University of Iowa

Summary:

A new study suggests that the prolonged fatigue after mild exercise that occurs in people with many forms of muscular dystrophy is distinct from the inherent muscle weakness caused by the disease.

The research identifies a faulty signaling pathway that appears to cause exercise-induced fatigue in mouse models of muscular dystrophy and shows that Viagra can overcome the signaling defect and relieve the fatigue.


[my note: OMG ! So take a dangerous drug instead of figuring out any nutrient issues or other issues / safer treatment methods? Still, posting for the "signaling" detail above as that might also be something for others who have exercise intolerance issues.]
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Keebler
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Hypokalemic periodic paralysis


Going over my "study notes" from a month or so, I do recall having read about this in an article but do not seem to have saved that, only the other detail I searched from that. This is not the one I recall yet, still, of interest.

Now, as with so many things we stumble upon here, this might actually hold some value for those who have developed severe exercise intolerance by whatever name or whatever various reasons or "side issues" even if HPP is not the cause for some of us, there can be some keys here to explore.


https://globalgenes.org/raredaily/jessicas-journey-with-hypokalemic-periodic-paralysis/

Jessica's Journey with HPP


Hypokalemic periodic paralysis

scroll down. First:

https://en.wikipedia.org/wiki/Hypokalemia

Hypokalemia


https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis

Hypokalemic periodic paralysis

Hypokalemic periodic paralysis (hypoKPP) is a rare, autosomal dominant channelopathy characterized by muscle weakness or paralysis when there is a fall in potassium levels in the blood.

In individuals with this mutation, attacks often begin in adolescence and most commonly occur on awakening or after sleep or rest
following strenuous exercise (attacks during exercise are rare),

high carbohydrate meals, meals with high sodium content, sudden changes in temperature, and even excitement,

noise, flashing lights

and cold temperatures. Weakness may be mild and limited to certain muscle groups, or more severe full-body paralysis. During an attack reflexes may be decreased or absent.

Attacks may last for a few hours or persist for several days.

Recovery is usually sudden when it occurs, due to release of potassium from swollen muscles as they recover. . . .

[much more detail at link above]
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jupiter76
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I would treat babesia or proto-like organism if you did´t do that already. Malarone or coartem together with Heparin is what I believe helped me most.
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Rumigirl
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Potassium in some form, either in the form of food or drink (veggies, fruit, or their juices, for instance) or potassium supplements can help quickly in my experience. Otherwise, it persists.

I've been equisitely sensitive to this for decades. It's not just after exertion for me, it's from lack of potassium, too much salt relative to potassium, or electrolyte excretion from enemas or sweating.

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BartHeart
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PEM over time will typically be delayed in true ME/CFS, aka it takes 24-48 hours after "exertion" (physical or cognitive) for the crash to really hit, and then it will tend to last days, weeks, months, years. Staci Stevens and colleagues are doing really good work/testing, though they don't have the answers re: treatment really.

Please keep in mind a spinal fluid marker study did find clear distinction between ME/CFS and Lyme. It's possible to have both, however, but people make the mix-up around overlap too much; they're not the same, but it's possible to have both.

Valcyte works best if you're positive for severe herpesviruses. Dr. L who pioneered that treatment (in Michigan, before it moved to Stanford) did a study before his passing, one of his final studies, that found a significant difference in two patient groups: one with just herpesviruses in their hearts, the other group with both herpesviruses and coinfections including ones like Lyme and babs. The second group *did not* do well on antivirals or antivirals plus antibiotics, but he didn't treat that long with antibiotics. However, if you're a complicated case with both (and both affecting cardiac tissue) it's unlikely to work that well though you could try it with longer-term antibiotics than he used too.

Ampligen is almost impossible to get, though it's approved now or almost improved in Argentina, so it may at some point be possible to get in another country if you can travel. IN the US it's only avail. to a very limited number of patients on cost-recovery trials.

I'm looking at the top of this post which reads a long time ago, was this thread just bumped up from a long time back?

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Keebler
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BartHart,

This has turned into a sort of informational links thread.

The original poster, garunner, has not posted on this site since 2015.

Still, since so much work goes into many replies - and there is so much good information that when see relevant information I (and hopefully others, like you have just done), I (we) like to add it to this set for others who have this same issue as it's one of the most debilitating symptoms of chronic stealth infections.

One thing you mention: spinal fluid marker -- I would never recommend that anyone have any lumbar puncture done.

For lyme diagnosis, it's a very unreliable test as spirochetes don't seem to just hang around in spinal fluid and when they might, spirochetes hate any kinds of disturbance and will literally spring through tissue to burrow deeper to run from heat, cold, vibration, etc.

A lumbar puncture might find lyme but most often will miss it because it's such a poor test.

Still., your point being that there is a "clear distinction between ME/CFS and Lyme"

Indeed. yet when certain symptoms cross over, it can be very helpful to look at some of the characteristics involved as well as what helps. Very often ME/CFS is actually lyme. So very often, but not all the time. And lyme is never JUST lyme as there are so many other infections carried by ticks.

And most tests for lyme can miss it.

Anyone with diagnosis of ME/CFS is best to see an experienced ILADS educated "LLMD" for a proper diagnosis of lyme, other tick borne or other stealth infections.

www.ilads.org

see the Physician Training Program for information on how to best determine if a doctor is properly "lyme literate"

As your name of "BartHeart" implies, with the diagnosis of bartonella, you likely know all this. Still with CFS/ME, for others who may be new to all this.
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Keebler
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http://solvecfs.org/summary-of-the-simmaron-research-institute-research-update-and-patient-day/

Summary of the Simmaron Research Institute Research Update and Patient Day

Solve ME/ CFS Initiative - Sept. 20, 1017

Excerpt:

. . . The highlight of the science presentations was Dr. Maureen Hanson of Cornell University. Dr. Hanson presented the results of her work on ME/CFS patients’ physical response to exercise.

This work, in collaboration with Metabalon and the Solve ME/CFS Initiative, seeks to answer the question “what causes post-exertional malaise?”

Dr. Hanson’s work was recently published in the paper “Metabolic profiling of a myalgic encephalomyelitis/chronic fatigue syndrome discovery cohort reveals disturbances in fatty acid and lipid metabolism” with Dr. Susan Levine, who is also a member of Solve ME/CFS Initiative’s Research Advisory Council.

Dr. Hanson’s work found disturbances in fat and lipids and that a ME/CFS patient’s plasma glucose is lower than the plasma glucose of a healthy control.

Dr. Hanson’s future work will expand on these early findings by specifically looking at the different types of T-cells (immune cells). . . .
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Keebler
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New documentary about ME/CFS called "UNREST"

can be streamed on NETFLIX and likely other outlets / vendors.

It's excellent.

As someone who was first diagnosed with CFS before lyme & several other tick-borne infections clarified the matter . . . still, the symptoms of ME/CFS most certainly are shared by many with lyme so there are things to learn by further study of this symptom, no matter the cause.

of course, treating infections adaqtly has helped many but see Nancy Klimas, MD's comment here on the mitochondra and exercise intolerance. For many with lyme, etc. treatment for infections is not within reach. In the meantime, might help to still learn more about the science of all things involved
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[ 01-21-2018, 07:01 PM: Message edited by: Keebler ]

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