Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

frozenborderline

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May I suggest making a couple more separate threads out of this one? There should be a thread just to discuss the theory and speculation and science of the “mechanical basis” theory. There should maybe be a thread to monitor results of treatment. Maybe another to discuss non surgical treatments and the theory behind those.
 
Belbyr

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THIS POST HAS BEEN MOVED FROM https://forums.phoenixrising.me/ind...ai-mri-treatment-outcomes.62720/#post-1025829 TO THIS THREAD AS IT LED TO DISCUSSION WHICH WAS OFF-TOPIC TO THE ORIGINAL THREAD WHICH ONLY CONCERNS A POLL ABOUT TESTING FOR CCI, ETC.

I am the one that voted no, because my memory was faulty and thought I was checked for this... Looking back, I was not.

This is interesting because my headache I have is where the neck meets the base of the head in the back. It comes and goes. When I go through good phases it doesn't really bother me, when I go through bad phases it comes roaring back.

Just wanted to clarify for the 'No' vote I casted.
 
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frozenborderline

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Inara said:
It won't becovered in case of Dr. Gilete (or any other of the recommended neurosurgeons). So even if sth was found I couldn't get a treatment.
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Oh. I’m lucky I guess and my insurance covers out of network surgeons that take t, with a deductible. Plus one of the surgeons is in network. It’s all expensive and difficult but I would say it may be cheaper to switch to an insurance plan that covers this than to try and raise the money for the whole surgery. Either way huge medical costs for life saving procedures are evil etc
 
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roller

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Tammy said:
Google viruses and spinal problems. :)
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i understand, its not a spinal problem but of destroyed ligaments.

perhaps the ebv virus does destroy ligaments? please post a link.

otherwise, googling "parasite ligaments" brings up a lot of the havoc they cause there.

first helminth-guys coming up on that google search, are exactly those which will be killed by the med naviaux googled (suramin).

https://www.cdc.gov/parasites/loiasis/disease.html
The adult worms live between layers of connective tissue (e.g., ligaments, tendons) under the skin and between the thin layers of tissue that cover muscles (fascia).
 
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jeff_w

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Hi @Tammy

You asked me this question:

Tammy said:
How do you explain getting better when you were on the anti-virals and other supplements before your surgery?
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I got much worse while on antivirals.

I'm not sure why you thought I was getting better, but perhaps you are referring to my old posts from 4 years ago? If so, I should clarify: Every time I thought I was getting better, I would do a bit more activity, and then I would ultimately crash.

In 2014, I started Famvir and Valcyte. The side effects from Valcyte plastered me to my bed. I did notice some improvement, but it turned out to be due to spending even more time in bed from the Valcyte side effects. Every time I increased my activity, I would crash and go backwards.

I now see that the improvement correlated with spending more time flat in bed, which relieved brainstem compression (whereas being upright exacerbated it).

Tammy said:
What I suspect is that the EBV that you tested positive for was the culprit behind the CCl/AAl.
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Every bit of data, from 2014 until now, refutes this idea.

From 2014 until 2016, I was taking high dose Famvir and Valcyte, together. My EBV titers remained positive and declined only slightly, and I was getting sicker and sicker. My POTS and PEM were just as bad as ever.

When I finally corrected my CCI/AAI, those EBV titers normalized for the first time in the years since I became ill. Also, my POTS and PEM completely went away.
 
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I

Inara

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debored13 said:
Oh. I’m lucky I guess and my insurance covers out of network surgeons that take t, with a deductible. Plus one of the surgeons is in network. It’s all expensive and difficult but I would say it may be cheaper to switch to an insurance plan that covers this than to try and raise the money for the whole surgery. Either way huge medical costs for life saving procedures are evil etc
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There's not such an option in Germany (if you're not privately insured, and I'm not since I'm too poor). :( And I wouldn't want any neurosurgeon.
 
ljimbo423

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jeff_w said:
When I finally corrected my CCI/AAI, those EBV titers normalized for the first time in the years since I became ill. Also, my POTS and PEM completely went away.
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I can understand why correcting your CCI/AAI would get rid of your POTS and PEM. Probably by allowing the brain to somehow function better would be my guess.

How do you think it lowered your EBV titers? Could the correction somehow have effected your immune system or was it something in the brain causing the high EVB titers?
 
Tammy

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jeff_w said:
I got much worse while on antivirals.

I'm not sure why you thought I was getting better, but perhaps you are referring to my old posts from 4 years ago? If so, I should clarify: Every time I thought I was getting better, I would do a bit more activity, and then I would ultimately crash.

In 2014, I started Famvir and Valcyte. The side effects from Valcyte plastered me to my bed. I did notice some improvement, but it turned out to be due to spending even more time in bed from the Valcyte side effects. Every time I increased my activity, I would crash and go backwards.

I now see that the improvement correlated with spending more time flat in bed.
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I guess I misunderstood. When I look back at your posts. "My experience with Dr. Kaufman"...............they never implied that you were getting worse..........but only better. You even stated you could go out to eat. But then........you stopped posting sometime in May of 2015. I guess that is when you started getting worse? Anyhooo...........your reply has made it more clear................and I am so happy you are feeling better!

I thought somewhere you posted some links connecting viruses to ligaments/spine issues? Maybe I'm just losing it!
 
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jeff_w

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Tammy said:
When I look back at your posts. "My experience with Dr. Kaufman"...............they never implied that you were getting worse..........but only better. But then........you stopped posting sometime in May of 2015. I guess that is when you started getting worse?
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Yes. In May of 2015, I had a massive crash that resulted from riding on a train. I ended up bedbound, unable to bathe myself. I had to be wheeled to the shower and have other people do the labor of bathing me. At times, I was unable to speak. PEM was out of this world. This went on for many months. I had been on both Famvir and Valcyte the entire time, as well as POTS meds.

Tammy said:
I thought somewhere you posted some links as to the causation of viruses and ligaments/spine issues?
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There has been some speculation that infections can degrade collagen, and there's some research to support this.

Bacterial collagenases and collagen-degrading enzymes and their potential role in human disease

Borrelia Spirochetes Upregulate Release and Activation of Matrix Metalloproteinase Gelatinase B (MMP-9) and Collagenase 1 (MMP-1) in Human Cells
 
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Hip

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jeff_w said:
There has been some speculation that infections can degrade collagen, and there's some research to support this.
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Yes I posted here some info about these MMPs — connective tissue-destroying enzymes which can be induced by infections. Coxsackievirus B can certainly cause the release of MMPs. It seems feasible that MMPs from a chronic infection could be weakening ligaments and other connective-tissue in the spine.

My body skin developed sudden-onset crêpe paper-like fine wrinkling soon after I caught my ME/CFS-triggering virus (see the picture of those wrinkles in my post), which I think may be due to these MMP enzymes destroying the elastin and perhaps collagen in my skin.

In this post there are some treatments which may reduce MMP levels.
 
frozenborderline

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jeff_w said:
There has been some speculation that infections can degrade collagen, and there's some research to support this.

Bacterial collagenases and collagen-degrading enzymes and their potential role in human disease

Borrelia Spirochetes Upregulate Release and Activation of Matrix Metalloproteinase Gelatinase B (MMP-9) and Collagenase 1 (MMP-1) in Human Cells
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So I wonder if there’s an enzymatic counterpart to the collagenases produced by these bacteria —some kind of enzyme or peptide or growth factor that stimulates collagen growth in a given region. I would guess that this could be very problematic Bc if you have collagen and fiber growths just anywhere , that’s how you get fibrosis (I think). But in the right area...
 
Tammy

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jeff_w said:
There has been some speculation that infections can degrade collagen, and there's some research to support this.
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Ok......finally found where you posted in response to Jennifer Brea: I have craniosacral cervical and atlantoaxial instability post. (I can't transfer it here). One of your replies: "Infectious diseases can degrade collagen. EBV, Bartonella and other infections are known this as demonstrated by peer-reviewed research. This could explain the viral onset of CCI/or ME. CCI literally happens when the skull and spine ligaments, which are made of collagen, fail." (you posted the following links)

https://www.sciencedirect.om/science/articlepii
Herpes simplex virus encephalitis is characterised by an early mmp-9 increase and collagen type IV degradation.

https://ard.bmj.com/content/annrheumdis/50/11/772.full.pdf
Cross reaction of antibodies to a glycine/alanine repeat sequence of EBV virus nuclear antigen with collagen, cytokeratin and actin

I'm just curious Jeff............if you don't think there was a link between the EBV and your CCI/AAI.diagnoses.................do you have any hypothesis/ideas as to what might have caused it?
 
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