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How walking helps keep your brain healthy

Mary

Moderator Resource
Messages
17,385
Location
Southern California
@pattismith - I wasn't offended, it's just your posts seemed to be blurring the lines between ME and PEM and everything else - phrases like "once you're on the road to recovery" or "once you feel your PEM improving" as though that were a given, or "each time one has the chance of improving" as though we all have these chances and all we have to do is take them. People here are desperate for recovery and chances to improve, and would do anything to have them. And it's just not happening for most of us.

But I am glad for you! I used to walk a LOT before I developed ME/CFS. I was more active than most people I knew. I'd kill (well, almost ;)) to be able to do it again. I wonder what you were dealing with which resolved with ABX - do you have any ideas?
 

pattismith

Senior Member
Messages
3,946
@pattismith - I wasn't offended, it's just your posts seemed to be blurring the lines between ME and PEM and everything else - phrases like "once you're on the road to recovery" or "once you feel your PEM improving" as though that were a given, or "each time one has the chance of improving" as though we all have these chances and all we have to do is take them. People here are desperate for recovery and chances to improve, and would do anything to have them. And it's just not happening for most of us.

But I am glad for you! I used to walk a LOT before I developed ME/CFS. I was more active than most people I knew. I'd kill (well, almost ;)) to be able to do it again. I wonder what you were dealing with which resolved with ABX - do you have any ideas?
I may not have chosen the right words to explain myself. Being french can be really handicapping when it's about speaking/writing in english.

you are right, many people are desesperate to have any improvment of their PEM, but some other had remissions, so you should keep hoping.

I don't have any ideas why Antibiotics are working for me, I was negative for all the Lyme tests, but IgG positive for Mycoplasma Pneumoniae, Chlamydia Pneumoniae, Yersinia enterolitica, and IgA Helicobacter Pilori.

I suspect I was contaminated by Bordetella Bronchiseptica (a bacteria that commonly infects dogs lungs) in 2003, with a possible persitance in my lungs after that with some bronchitis flares happening from time to time.

I've not done the herpes virus tests, but I know I have active infection with HSV1, because as soon I stop taking Lysine 1000 mg/day, I have persistant flares that requier oral Antiviral drugs to get rid of it (it started to be like that around 2007)...

No doctor in my country knows about fibromyalgia/CFS/ME, so I was not diagnosed, but my condition shares many things with your: actives/persistance of viral and intracellulars bacterias, and gut problems.

Weither Antibiotics were effective against these bacterias or virus, or maybe on other bad bacteria of my microbiome, I couldn't say.

I also consider a genetic predisposition, because my grand mother was affected very early in her life, and my mother to a lessen degre when she was older (antibiotics worked for her pains too).

I am with you because I want to find answers to my questions on my disease, but if you consider I am not a ME patient, I will just stop posting, I know it is the rule over here.

Being rejected by patients after being rejected by all the doctors is not a very nice experience, but I can understand your concern...
 
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Mary

Moderator Resource
Messages
17,385
Location
Southern California
I am with you because I want to find answers to my questions on my disease, but if you consider I am not a ME patient, I will just stop posting, I know it is the rule over here.

Being rejected by patients after being rejected by all the doctors is not a very nice experience, but I can understand your concern...

There isn't a rule that you have to be an ME patient to post and I don't want to stop you from posting. Also, I can't determine whether or not you or anyone have ME - but the fact that you improve with exercise goes against everything I've experienced and read about. Most people with ME do not get better with exercise, though of course people do improve with exercise with almost every other illness.

ME patients in general have had a nightmare time with doctors who think it's all in their head and say that all they have to do is exercise and they will feel better, and that they are sick because they are "afraid" of exercising. And so many people have gotten so much worse because they did what their doctors told them to do. And some never get back to where they were before then. So your comments unfortunately reminded me of what the ignorant doctors have been telling patients to do.

Having said all this, I'm really sorry you were offended by what I wrote. I wasn't trying to attack you personally or reject you. And also I didn't realize that you were French and there might be an issue with language - your English is excellent!

So please do not leave the board on my account - it's the last thing in the world I want to happen. This board is open to everyone and as you can see above, others did appreciate your comments. (and besides, I'm not the ME police! :sluggish:)
 

pattismith

Senior Member
Messages
3,946
There isn't a rule that you have to be an ME patient to post and I don't want to stop you from posting. Also, I can't determine whether or not you or anyone have ME - but the fact that you improve with exercise goes against everything I've experienced and read about. Most people with ME do not get better with exercise, though of course people do improve with exercise with almost every other illness.

once again Mary, please, do not say what I have never say: I have not improved my illness with walking. I have improved with ATBX and Supplements.

And only after that I started walking because I still had brain fog/exhaustion after eating, and I theorized that it could have been linked to an abdominal vascular compression comorbidity (which is increased by laying supine after food intake)...And it worked, but only because I have had other issues fixed first.

I cannot speak for others, and will never say that you have to walk to improve when I don't know about your own complete condition. I can just share my own experience in case it could be helpful to any other ill people.

I try to do it the more honestly I can.

I found this study about the brain blood flow while walking. It could explain why I had improvment when walking after food intake, but I am convinced that it improved not only my brain blood flow, but my gut blood flow as well, which could explain the decrease of my post prandial blood lactates peak.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
What can be done to improvePEM

What can be taken

I rently found a reference that NAG, N-Acetyl Glusomine (OTC) is helpful for PEM.
In Addition, there's a thread on PR or here on Inflammation, and a
reference to how this (and other drugs) block causative cells IL-10 +(Footnotes to research
on studies). I then just recently began using it. Too soon for feedback,but it's worth a
search of discussion and a trial; (NAG by Jarrow is ~$28 on Amazon).
 
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Mary

Moderator Resource
Messages
17,385
Location
Southern California
I rently found a reference that NAG, N-Acetyl Glucosamine (OTC) is helpful for PEM. In Addition, there's a thread on PR or here on Inflammation, and a
reference to how this (and other drugs) block causative cells IL-10 +(Footnotes to research on studies). I then just recently began using it. Too soon for feedback,
but it's worth a search of discussion and a trial; (NAG by Jarrow is ~$28 on Amazon).

Can you give the reference regarding NAG and PEM? Member Hip recommended it for anxiety: http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
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Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
@perrier
What can be done to improvePEM

What can be taken

These are reference suggestions... see page 5 of the article below...
Mitochondrial Dysfunction, Post-Exertional Malaise and ME/CFS
Last Updated: 10 January 2016 10 January 2016
https://www.masscfids.org/more-reso...exertional-malaise-and-cfsme?showall=&start=4
http://www.prohealth.com/library/showarticle.cfm?libid=18840

Also check out:
https://www.healthrising.org/forums...hronic-fatigue-syndrome-and-fibromyalgia.391/
in which it is indicated:
RATIONALE: PEM Busters Work in Part by Neutralizing Lactate or Reducing its Production.

That being noted I would suspect a possible thiamine (B1) deficiency (possibly caused by magnesium deficiency) which causes lactic acidosis. Thiamine deficiency disease is called "beri beri" which literally means - I can't, I can't.

  • Lactic Acidosis: Background, Etiology, Epidemiology
    emedicine.medscape.com/article/167027-overview
    Mar 06, 2017 · ... Clausen identified the accumulation of lactic acid in blood as a cause of ... the causes of lactic acidosis according ... thiamine deficiency, ...
 

perrier

Senior Member
Messages
1,254
@perrier


These are reference suggestions... see page 5 of the article below...
Mitochondrial Dysfunction, Post-Exertional Malaise and ME/CFS
Last Updated: 10 January 2016 10 January 2016
https://www.masscfids.org/more-reso...exertional-malaise-and-cfsme?showall=&start=4
http://www.prohealth.com/library/showarticle.cfm?libid=18840

Also check out:
https://www.healthrising.org/forums...hronic-fatigue-syndrome-and-fibromyalgia.391/
in which it is indicated:
RATIONALE: PEM Busters Work in Part by Neutralizing Lactate or Reducing its Production.

That being noted I would suspect a possible thiamine (B1) deficiency (possibly caused by magnesium deficiency) which causes lactic acidosis. Thiamine deficiency disease is called "beri beri" which literally means - I can't, I can't.

  • Lactic Acidosis: Background, Etiology, Epidemiology
    emedicine.medscape.com/article/167027-overview
    Mar 06, 2017 · ... Clausen identified the accumulation of lactic acid in blood as a cause of ... the causes of lactic acidosis according ... thiamine deficiency, ...
What a gem you are. I will try some vit B1. My daughter just lays there tears rolling down her face, looking so weak, and the PEM just doesn't go. It wakes her at night. All she did was put a few items in a drawer a few days ago. She's almost always in bed, 95 percent of time. And putting some socks ( which I had folded) in her drawer crashed her so severely we don't know what to do.
 

Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
@perrier I would search for a doctor trained in nutrition, possibly an ND and/or a good nutritionist to assess your daughter. Keep her doctors in the loop with what you do.

If your daughter is deficient in magnesium, she won't be able to utilize any thiamine even if swallowed and absorbed, until she gets enough magnesium onboard. (Magnesium deficiency is not uncommon in the western world.) The body's enzymes that work on thiamine also require magnesium as a cofactor. Magnesium helps one sleep and may be better to take separately from thiamine. ... And because too much of one B vitamin might deplete another, you might want to get her on a B-vitamin complex instead of just thiamine.

These are just ideas from my research. I am not a doctor and you need to check out what you are thinking of doing. Many things can cause severe fatigue such as infectious disease and drugs...which often deplete vital nutrients.:bouquet:
 

perrier

Senior Member
Messages
1,254
@perrier I would search for a doctor trained in nutrition, possibly an ND and/or a good nutritionist to assess your daughter. Keep her doctors in the loop with what you do.

If your daughter is deficient in magnesium, she won't be able to utilize any thiamine even if swallowed and absorbed, until she gets enough magnesium onboard. (Magnesium deficiency is not uncommon in the western world.) The body's enzymes that work on thiamine also require magnesium as a cofactor. Magnesium helps one sleep and may be better to take separately from thiamine. ... And because too much of one B vitamin might deplete another, you might want to get her on a B-vitamin complex instead of just thiamine.

These are just ideas from my research. I am not a doctor and you need to check out what you are thinking of doing. Many things can cause severe fatigue such as infectious disease and drugs...which often deplete vital nutrients.:bouquet:
Lordy Lordy we have seen doctors and doctors. And there are so many problems, that PEM always gets forgotten. We also live in a medical backwater, called Canada. So, here no help will be found. Here The illness is under psychiatry. If you know anyone good, I'm listening.
I put 2-3 ml of magnesium into the Myers IV, done 5 times per week. As well as 1 ml of b complex. No change. I'll make a list from what you gave me and try to order this stuff. The PEM is horrific. FRom any movement she gets burning, up the spine, hips, legs, elbows, non stop severe pain and burning, plus malaise, sick feeling, nausea.
 

Gingergrrl

Senior Member
Messages
16,171
We also live in a medical backwater, called Canada.

I started to reply in another thread but didn't want to take it off track and then noticed your post here. If you are in Canada, can you consult with Dr. Hyde or is he no longer seeing patients via Skype?

I put 2-3 ml of magnesium into the Myers IV, done 5 times per week.

This is a VERY long shot, but if your daughter had the calcium autoantibody that I have, magnesium can actually be dangerous and make the muscles weaker. I am okay with Mg Malate in low dose in pill form but will never do it in other forms again b/c it is technically a calcium channel blocker which is bad for me. Like I said, this may not pertain to your daughter whatsoever but I wanted to mention it just in case she ever gets muscle weakness from the Mg.
 

Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
@perrier
The PEM is horrific. FRom any movement she gets burning, up the spine, hips, legs, elbows, non stop severe pain and burning, plus malaise, sick feeling, nausea.

Burning paresthesia is a symptom of....

Nutritional Neuropathy Clinical Presentation (Updated: Dec 28, 2015) this article also includes some photos to show certain conditions to assist in identification and provides common causes of the deficiency A copy of this article may be helpful to the doctors. Most MDs don't have training in nutrition.
http://emedicine.medscape.com/article/1171558-clinical

"Peripheral neuropathies due to nutritional deficiencies have few individually characteristic signs but can be differentiated by observing other symptoms of the patient's underlying systemic disease. Neuropathies mostly affect the long fibers first, starting in the feet and progressing upward. Once they have progressed to the calf, symptoms may appear in the hands...

...Thiamine (vitamin B1) deficiency
Dry beriberi is characterized by severe burning dysesthesias (feet more than hands), weakness and wasting (distal more than proximal), trophic changes (shiny skin, hair loss), and acrodistal sensory loss in a graded fashion typical of dying-back polyneuropathies.

Some patients do not become symptomatic, possibly because they are absorbing thiamine produced by bacteria in the large intestine. However, one half become symptomatic by 7 weeks; by 15 weeks, axonal changes start to appear histologically.

The neuropathy begins with fatigue and loss of sensation, pain, and heaviness in the legs. Then, pretibial edema develops, along with glove-and-stocking paresthesias and difficulty with tasks such as climbing stairs and standing on one leg.

If the thiamine deficiency is long standing, muscles on the dorsum of the feet atrophy and paralysis can ensue.
Difficulty with talking or swallowing may also be noted.

...Pyridoxine (vitamin B 6) deficiency or excess
This deficiency must be suspected any time a sensory polyneuropathy occurs after hyperesthesia-causalgia syndrome.

First, bilateral numbness and tingling begin in the distal feet. This proceeds proximally up the feet and legs, occasionally appearing in the fingers and hands. Then pain becomes prevalent in these areas, and symptoms can include a burning sensation in the feet.

In rare cases, patients experience loss of power in the legs, in which sensory loss is greater than motor loss; the etiology is axonal loss.

One week after the removal of vitamin B6 from the diet, levels of xanthurenic acid increase and levels of pyridoxine decrease in the urine. At 3 weeks, EEG abnormalities manifest, and tonic-clonic seizures refractory to anticonvulsants may follow.

The 4 main symptoms and signs are as follows:

  • Cutaneous mucosal symptoms - Glossitis, conjunctivitis, cheilosis
  • CNS symptoms - Lethargy, decreased level of consciousness, anorexia, vomiting, seizures
  • Ascending sensory polyneuropathy
  • Anemia - Lymphopenia with eosinophilia

Neuropathy due to toxicity occurs 1 month to 3 years after the individual starts excessive consumption.

...Pantothenic Acid (vitamin B 5) deficiency
This manifests as painful burning paresthesias in the feet, ataxia, and hyperreflexia, followed by weakness, fatigue, apathy, and psychiatric disturbances 5-8 weeks later...

...Hypophosphatemia
Invariably found in patients on total parenteral nutrition, this deficiency causes tingling paresthesias in the tongue, fingers, and toes but can progress to severe weakness and areflexia, sensory loss, and cranial neuropathies..."
*****************************************************************************

http://altmedrev.com/publications/7/5/389.pdf
I put 2-3 ml of magnesium into the Myers IV, done 5 times per week. As well as 1 ml of b complex.
It may be helpful to calculate out how much of the vitamins are actually going into the formula since B complex often has quite a different amount of each depending upon who makes it. Whoever suggested putting her on the Myers IV may be able to help decipher this. Also, what forms of the vitamins are being administered and what form of magnesium. How is her diet/drink/medicine regimen?

***Keeping a good time log with what was administered along with the ensuing responses will greatly aid in identifying cause and progression, and further aid in sorting out confusion. If you log it on computer it will be easier to share with doctors, who hopefully will take the time to look at it. It takes a lot of time to log, more than it takes to administer something by far. Is there any chance that your medical will allow a home nurse visitation who is up on recording data in medicalese?

Note that sometimes the body in weakened condition cannot handle large amounts or active forms of vitamins well as they can be too stimulating, despite the need, so having a nurse around to monitor vitals would be helpful. In the U.S. IVs are usually done in doctor's offices.

Other more general descriptors of paresthesia and causes listed briefly here:
paresthesia is a symptom of.... http://www.rightdiagnosis.com/p/paresthesia/intro.htm
 

perrier

Senior Member
Messages
1,254
I started to reply in another thread but didn't want to take it off track and then noticed your post here. If you are in Canada, can you consult with Dr. Hyde or is he no longer seeing patients via Skype?



This is a VERY long shot, but if your daughter had the calcium autoantibody that I have, magnesium can actually be dangerous and make the muscles weaker. I am okay with Mg Malate in low dose in pill form but will never do it in other forms again b/c it is technically a calcium channel blocker which is bad for me. Like I said, this may not pertain to your daughter whatsoever but I wanted to mention it just in case she ever gets muscle weakness from the Mg.
Dr Hyde sees five or six patients per year. He also just gives them referrals to see a host of doctors. So,he doesn't treat,he helps with diagnosis.

Thanks for the other point.
And I haven't the answer.
 

Gingergrrl

Senior Member
Messages
16,171
Dr Hyde sees five or six patients per year. He also just gives them referrals to see a host of doctors. So,he doesn't treat,he helps with diagnosis.

I didn't realize that he only sees 5-6 patients per year but I knew he refers to many specialists which I thought might be helpful to rule in or out what is going on diagnostically (or a way to get an appt with specialists that a regular PCP/GP might not refer you to)?

Thanks for the other point.

No problem and I think a lot of people do that know that with certain autoantibodies, Mg can make things worse and needs to be in moderation (since you said your daughter was doing IV Mg 5x per week.