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

[Rlman]

D) so what are the non surgical treatments? I am curious despite my low quality of life about exploring these before I commit to surgery. This would also depend on if I have serious breathing issues tho too Bc I can tolerate pain and discomfort, but want to make sure I’m not in risk of serious brain damage from apnea or hypoxia


Are there cutting edge treatments used to regrow collagen? Seems like something the beauty industry would be interested in, so maybe a more voluminous area of research than the research in me/cfs.

as @Hip mentioned there is stem cell therapy and prolotherapy.
only lady on the BTM group did the stem cells, she has an fb group chronicalling how she's doing. it's called Janelle's Medical Journey-Keeping her head on!

also there is a FB group called the Ehlers Danlos Syndrome and the Cusack Protocol which has helped some strengthen their ligaments with supplements. it claims to help CCI over 6-12 months. Cusack's family itself has an amazing recovery story from severe EDS including CCI. there are threads re CCI in that group.

strengthening neck muscles is also suggested if possible

 

[mattie]

@roller i think in the consent form of the CCI/AAI surgeons there is a point that after doing fusion surgery, there may be a need later on of fusion surgeries of lower cervical vertebrae. many on the BTM group have to have more fusions after doing the fusion for CCI. The explanation i think is that the fusion causes extra force on the lower cervical vertebrae and they end up becoming unstable too. maybe even the lower spine ends up needing fusions too. not everyone on the btm group needs more fusions though.

That is why Dr. Gilete wants to DMX my c4-c5 because that one is already looking suspicious.

 

[Tammy]

My ME/CFS began with an acute viral infection. This appears to be true for the vast majority of others with ME who ultimately tested positive for CCI/AAI.

It may in fact be that CCI/AAI that makes a person unable to clear a virus, given that the brain stem regulates the autonomic nervous system and the immune system. So what appeared to have been a viral cause, may not actually be one.

In other words, it may not be the viral infection itself that causes ME/CFS. Rather, what we're observing may be the person's inability to clear the viral infection, due to underlying autonomic nervous system pathology from CCI/AAI.

How do you explain getting better when you were on the anti-virals and other supplements before your surgery? What I suspect is that the EBV that you tested positive for was the culprit behind the CCl/AAl. A virus can cause all kinds of spinal problems.

 

[frozenborderline]

as @Hip mentioned there is stem cell therapy and prolotherapy.
only lady on the BTM group did the stem cells, she has an fb group chronicalling how she's doing. it's called Janelle's Medical Journey-Keeping her head on!

also there is a FB group called the Ehlers Danlos Syndrome and the Cusack Protocol which has helped some strengthen their ligaments with supplements. it claims to help CCI over 6-12 months. Cusack's family itself has an amazing recovery story from severe EDS including CCI. there are threads re CCI in that group.

strengthening neck muscles is also suggested if possible

Strengthening neck muscles if the cci is causing the cfs seems sorta like chicken and egg problem. I do think it would be hard to gain strength but I will try, espceiclali Bc I have been in a collar for probably over a month at this point and can tell that it’s greatly weakened my neck.

 

[frozenborderline]

Now that I (essentially) have this dx, I want to get into the beyond the measurement group even more. My sister (I don’t have Facebook) has been trying to get in for over a month!!! She has friend requested and messaged all of the mods to no avail. I understand they have high volume of requests but this is really messed up. Anyone here know the mods and can talk to them on my sisters behalf?

 

[Rlman]

How do you explain getting better when you were on the anti-virals and other supplements before your surgery? What I suspect is that the EBV that you tested positive for was the culprit behind the CCl/AAl. A virus can cause all kinds of spinal problems.

doesn't seem that jeff_w got better before his surgery. it was the halo giving neck traction that took away symptoms initially, also the neck collar to a lesser extent. you can read his story at mechanicalbasis.org

 

[Rlman]

also apparently MCAD can cause ligament laxity. even dr henderson saying so apparently based on what ppl saying he told them in btm. the blogger at methylnation said dealing with histamine resolved her EDS like symptoms but not sure she had cci. also i think that blog hasnt been updated in a while so idk if her improvements held

 

[Rlman]

Strengthening neck muscles if the cci is causing the cfs seems sorta like chicken and egg problem. I do think it would be hard to gain strength but I will try, espceiclali Bc I have been in a collar for probably over a month at this
point and can tell that it’s greatly weakened my neck.

yeah the problem with hard collars is that they weaken neck muscles and the traction can loosen ligaments more. but of course they can be a life saver. but if in them for a while when taking off must be cautious as chance be worse than pre collar. are you feeling better in the collar @debored13 ?

 

[Tammy]

doesn't seem that jeff_w got better before his surgery. it was the halo giving neck traction that took away symptoms initially, also the neck collar to a lesser extent.

He was getting better before the surgery under care of Dr. Kaufman..........taking anti-virals and other supplements. You can do a search on this site.(My experience with Dr. Kaufman) I'm not saying that the surgery was not needed. I'm over the moon that jeff is feeling good. I still think that the EBV is what caused the spinal problem in the first place.

 

[Rlman]

He was getting better before the surgery under care of Dr. Kaufman..........taking anti-virals and other supplements. You can do a search on this site. I'm not saying that the surgery was not needed. I'm over the moon that jeff is feeling good. I still think that the EBV is what caused the spinal problem in the first place.

@Tammy he ended up getting a lot worse after those treatments. did you read his story at mechanicalbasis.org?

 

[Rlman]

He was getting better before the surgery under care of Dr. Kaufman..........taking anti-virals and other supplements. You can do a search on this site.(My experience with Dr. Kaufman) I'm not saying that the surgery was not needed. I'm over the moon that jeff is feeling good. I still think that the EBV is what caused the spinal problem in the first place.

also from what i remember the only treatments that helped in the earlier phase of his illness were IV saline for pots and ketogenic diet, but i may be wrong

 

[Rlman]

also jeff_w said his ebv igm went negative 1st time ever after the surgery i believe

 

[frozenborderline]

yeah the problem with hard collars is that they weaken neck muscles and the traction can loosen ligaments more. but of course they can be a life saver. but if in them for a while when taking off must be cautious as chance be worse than pre collar. are you feeling better in the collar @debored13 ?

yeah the problem with hard collars is that they weaken neck muscles and the traction can loosen ligaments more. but of course they can be a life saver. but if in them for a while when taking off must be cautious as chance be worse than pre collar. are you feeling better in the collar @debored13 ?

Managing to sleep in the collar made a big difference as I stopped waking up with a headache and dizziness as much. The collar has helped inasmuch as I went from not being able to sit up and move around some to being able to do that. Only helped with vertigo and neck pain, didn’t totally get rid of pots or anything. But now I’m basically dependent on it and trying to slowly change that and wean off

 

[frozenborderline]

He was getting better before the surgery under care of Dr. Kaufman..........taking anti-virals and other supplements. You can do a search on this site.(My experience with Dr. Kaufman) I'm not saying that the surgery was not needed. I'm over the moon that jeff is feeling good. I still think that the EBV is what caused the spinal problem in the first place.

This is all speculative, but even if the ebv caused the problem by eating through collagen, it makes sense that the cci would then cause the ebv to stay reactivated , Bc of the effects on autonomic and immune systems. It’s probably tough to cut the Gordian knot of problems like this but a good question is, if one has a common virus or bacteria eat their collagen to cause this, how come most people with ebv etc don’t get this. @jeff_w mentioned not having hypermovile eds. I think I don’t either. Is there some more minor mutation that has to do with collagen production that perhaps some of us have ?

 

[Tammy]

@Tammy he ended up getting a lot worse after those treatments. did you read his story at mechanicalbasis.org?

No I havn't.........thanks for the link.

 

[Tammy]

a good question is, if one has a common virus or bacteria eat their collagen to cause this, how come most people with ebv etc don’t get this. @

I suspect it has to do with where the virus is attacking. Some people it can be the liver........in others the thyroid.......in others the spleen, brain and spinal cord, etc. etc.

 

[Rlman]

many people with lyme are ebv positive too along with other viruses. i think i read after they treat the lyme the viruses go dormant. so that would support the theory that viruses are activated when the body is weaker as when lyme infected or CCI. i may be totally wrong though

 

[Daffodil]

How do you explain getting better when you were on the anti-virals and other supplements before your surgery? What I suspect is that the EBV that you tested positive for was the culprit behind the CCl/AAl. A virus can cause all kinds of spinal problems.

Hi Tammy,

i am wondering if you might have a link to a paper talking about viruses causing spinal problems.

Thank you!!
Daff

 

[Daffodil]

i am sitting at airport right now on the way back from having MRIs in Washington DC. They were not too easy and I worry the pictures will not be as clear as they could be. I kept falling asleep during the cervical cranial junction MRI cuz it was easier with my eyes closed ...so there was some movement. I wanted to do the MRI again but the tech said the images were good enough for diagnostic purposes.

wonder if anything will come from this

 

[frozenborderline]

many people with lyme are ebv positive too along with other viruses. i think i read after they treat the lyme the viruses go dormant. so that would support the theory that viruses are activated when the body is weaker as when lyme infected or CCI. i may be totally wrong though

I may have mentioned this somewhere else, but the initial trigger for my chronic illness was a pretty clearxut lyme case dxed by my pcp (not a private lab w history for false positives or anything) -_bullseye rash, fever and chills, and Jen positive on both kinds of standard testing. A little over a year after that I also got a series of short but intense flulike viral infections that left me semi permanently worse. I have tested for high antibody titers to multiple viruses , ebv, hhv-6, one of the coxsackie ones. I have woken up w a sore throat basically every day of the past month and r only thing radiologist wrote on my upright mri report was swollen lymph nodes (he didn’t see cci)