muscle and spine pain at standing - neuroinflammation from Lyme?

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MartinK
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Date Joined Feb 2018
Total Posts : 12
   Posted 3/13/2018 11:35 AM (GMT -6)   
Hi all!
My worst problem with my Lyme struggle is muscle pain, and spine, cervical spine pain, when Im standing, or longer time sitting.
Problems with standing start after 10 minutes on my feets, first pain touched my legs, then passes into the pelvis, into the spine (and this continues to full body exhaustion, when if I do not sit in less than half an hour) ...its feel like gravitation is ten times larger!
This same with long time sitting...exhaustion after 2 hours.
Everything is accompanied by a feeling of inflammation...

These days ends with huge crash for 2-3 days (sometimes flu-like crashes)

Is there anyone with a similar problem?
None doctor could explain it to me - Kenny De Meirleir says only - its from Lyme...its CFS from Lyme.
But, why? What's happening? Where is the problem - neuroinflammation?

Now Im on Cowden and waiting for HBOT, but to fix at least a bit of this problem, I could be more active at the time - trips to the doctor, trips to the hospital, walks into the woods for fresh air...

Can it also be lactic acid problem in muscles? (I have a lactose intollerance)

I have this problem from the first day, when my flu-like problem turns to chronic Lyme...
Repair it at least a little bit, everythink in my treatment could be better!

Thanks a lot for all opinions and experiences!!!

brighter days for all!
Martin

astroman
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Date Joined Mar 2014
Total Posts : 5095
   Posted 3/13/2018 12:41 PM (GMT -6)   
Yes, this happens. There are many posibilities, as any infection can mess up your personal biochemistry.

I had this and my krebs cycle was messed up, high pruviate (in), low succinic acid (out). Some amino acids were high, meaning krebs was not using them. My lactic acid as also good. The outcome of krebs is ATP. ATP is energy. Low Krebs = low energy and low mitochondria function. Dr Horowitz (or Burscano?) is one of the few who recognizes this pattern in lyme. This is a little more detail than average LLMDs care to get into, so they usually dont.

I am now better but not 100%, pruviate is also normal (I tested). Dr says whats left is the damage of 25-30 years. Maybe 45 years hard to say for sure. I am repairing the damage though- long project.

Post Edited (astroman) : 3/14/2018 9:26:51 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 3/13/2018 1:50 PM (GMT -6)   
"My worst problem with my Lyme struggle is muscle pain, and spine, cervical spine pain, when Im standing, or longer time sitting.
Problems with standing start after 10 minutes on my feets, first pain touched my legs, then passes into the pelvis, into the spine (and this continues to full body exhaustion, when if I do not sit in less than half an hour) ...its feel like gravitation is ten times larger!
This same with long time sitting...exhaustion after 2 hours.
Everything is accompanied by a feeling of inflammation..."


My very first symptom was really bad pain - sudden onset - from my neck, down to the left side of my shoulder blade area, left arm and hand. The shoulder blade area was excruciating. Sent me to the ER.

Over the next few months, things slowly got better. But, like you laying down was fine...almost no pain..but standing...it would start to hurt...and sitting was even worse. No one could explain it.
I just figured maybe it was because when you're laying, the muscles aren't working...but they are when standing and sitting.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5095
   Posted 3/13/2018 10:08 PM (GMT -6)   
"I just figured maybe it was because when you're laying, the muscles aren't working...but they are when standing and sitting."


When home..... I layed on the floor a lot and still find it very relaxing at times.

My whole body just went ridged trying to stand, would go from sore/stiff to painful after ten minutes.

In addition to lyme treatment, go buy a foam fitness roller. Its not the best massage but it gets the circulation going. Lymies have circulation issues.

Post Edited (astroman) : 3/13/2018 9:14:26 PM (GMT-6)


MartinK
New Member


Date Joined Feb 2018
Total Posts : 12
   Posted 3/14/2018 9:10 AM (GMT -6)   
@astroman - thanks for your interesting opinion with Krebs cycle.
Do you have a tips, where I find something more to study about it?

Improve this symptom would greatly improve the life for me - this is my biggest limit.

Did anyone explain to you what to do to improve the krebs cycle?
What do you think about Peak ATP...or NT Factor for this problems? It solves anything?

thanks a lot!

Martin

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5095
   Posted 3/14/2018 10:46 AM (GMT -6)   
Before ABX treatment: I tried Ribose- its supposed to enhance ATP, I noticed nothing. I read about other ASP suppliments, but did not try them, you might have luck though. My choline levels (another krebs precurser) were good to, so adding didnt do much for me but add "edgyness" to nervious system. This is sometime low in lymies, a couple people here take supps to increase this. You could just try more choline. I was thinking about NT factor, but never tried it. There is so many suppliments and only 24 hrs in a day.

You can goggle many krebs illistrations , yahoo anr goggle "image".

Candida also lowers succinic acid (a krebs "exit"), not just lyme. I had high candida overgrowth and treated it many times, noticed some muscle improvment.

Killing lyme is what mostly fixed my pruviate/pruvic adic level (which comes before choline in the Krebs cycle). It was after that and a clean diet that my muscles were able to loosen up- but I had to do a lot of manual muscle therapy work. Before ABX , With lyme and a messed up Krebs, I was only able to slow the tight progression with muscle therapy, but not reverse it. Now I have been reversing this tightness and strengthening the last 2-2.5 years after ABX.

People have other pain theories, these seemed to have something to do with my case though, testing with symptoms also eliminates guessing. There is a lot of guessing on these forums.

Magnessium that ends in "ate" helps, but will not cure the tension/pain.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.
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