My ME is in remission

[Rachel Riggs]

It’s called regenexx. Someone on fb has had good results she’s Been documenting. It’s still rather experimental and the needle going that deep is not fun looking, but they are also currently doing a clinical trial.

Thanks!! Would you happen to have a LINK to that thread?

 

[frozenborderline]

Thanks!! Would you happen to have a LINK to that thread?

Janelles medical journey—keeping her head on

 

[Rufous McKinney]

@JenB- Your just the bravest person who is real I ever saw on film! Everything here changed, after my husband saw your film. Like: ice bucket challenge.

My question: what does the cervical fushion feel like, how does that affect mobility, turning your head, etc?.

(I wanted that 20/20 operation, years ago when i saw that on the TV/ something is up here in this area of the neck...please fix).

 

[Mary]

I've been doing conservative treatment for my neck: very basic physical therapy exercises, daily cervical traction, myofascial release therapy, and heat therapy. My symptoms of PEM and head and neck pain are starting to improve.

This is huge - I'm so glad to hear this! I always thought PEM was basically untreatable- probably because it has been for so long - keep us posted how you are doing!

 

[Mary]

@JenB - this is amazing news! Your film Unrest brought the reality of ME/CFS home to so many, and now you've found a way out that is shining a very powerful light on the role (for many) of brainstem compression in this illness - maybe it IS all in our heads after all!

Thank you for your very powerful advocacy on behalf of all us

 

[toyfoof]

Thanks @Mary! I think I have an old thread where I started discussing my case that I can resurrect and update.

I always thought PEM was basically untreatable

It’s so core to this disease and, for me, it took me years to even realize it was my problem (like many, I kept trying to exercise myself healthier and couldn’t understand why I kept getting worse). Now I am so cautious about activity that’s outside my energy envelope, but I’m realizing I can push it a little bit, and I’m not paying for it.

I think once you understand PEM and have lived with it, your every move is calculated to not cause it. So when it starts easing, it’s very hard to process. I question every little ache or hint of fatigue. So I’m not 100% sure how much it’s improving, but I know it is, and it correlates with my neck/cervical spine strengthening and therapy. I feel like I’m the kindergarten version of Jen and Jeff’s PhDs in CCI treatment.

 

[Mary]

I think once you understand PEM and have lived with it, your every move is calculated to not cause it. So when it starts easing, it’s very hard to process. I question every little ache or hint of fatigue.

Exactly! Every single day, every single thing I do, I have to do a mental calculation first, just as you say, trying to avoid PEM. I have some neck issues but they're nothing like Jen's or Jeff_w's - they're not even severe, but still, they're there. I may have to do some more investigating - I don't want to hijack this thread any further, so if I have more questions or comments, I may look for your other thread or send you a PM

 

[Rachel Riggs]

Janelles medical journey—keeping her head on

Thank you!!!

 

[Jessrose21]

@JenB , this is fantastic, overwhelming news! I'm really happy for you. It's exciting and frustrating at the same time for me. I'm trying to get my Dr. to get me a CT scan but the radiologist told him it's not possible to diagnose CCI or chiari malformations with a CT. That's not correct, of course, and now I'm trying to get my Dr. to consult with Dr. Bolognese to get proper CT instructions. (So far he has not called.) I got a Philadelphia cervical collar but it was too big and now I'm waiting for a smaller size. Even if I could get an appt with Dr. Bolognese I'm too ill to travel that far unless I absolutely know he can help. I sent Dr. B an email (with all my symptoms) and he said he thinks he can help me. But that's all he said. I can't risk my health (and finances) by traveling until have him review a CT scan. Any suggestions?

 

[Gingergrrl]

I'm trying to get my Dr. to get me a CT scan but the radiologist told him it's not possible to diagnose CCI or chiari malformations with a CT.

I believe that you need an MRI of your cervical spine, not a CT scan, for Dr. Bolognese (or other surgeons) when assessing for CCI but others can speak to this better than I can.

I had a 3T MRI of my cervical spine back in Dec b/c my chronic neck pain (which radiates down my right arm) was getting worse and both my main doctor and my (former) PT wanted to see what was going on. Dr. B viewed my MRI and I did not have CCI (which I never suspected in my case vs. cervical radiculopathy and some other issues).

But from my research at that time, and following all of the threads re: CCI here on PR, I believe that you need an MRI and not a CT scan.

 

[CactusJilly]

AND HOPEFULLY, @CactusJilly , TOO! My appt with Dr. B is Friday

If we work with the assumption that yes, there is an underlying cause, then Jen (and I, and @mattie, and possibly @StarChild56 ) have found and addressed the underlying cause of our ME. In our cases, ME was being caused by brainstem compression resulting from craniocervical instability (CCI).

 

[Hip]

But from my research at that time, and following all of the threads re: CCI here on PR, I believe that you need an MRI and not a CT scan.

On @jeff_w's website www.mechanicalbasis.org he says:

Get a doctor's order for very specific imaging. You can do this imaging locally, and your primary care doctor can order it for you. The imaging needs to be of your skull and cervical spine. Most neurosurgeons who understand CCI/AAI want dynamic imaging, such as:

• Upright MRIs with flexion, extension, and rotational views; or,
• Supine CT scans with flexion, extension, and rotational views

One of the expert neurosurgeons now prefers 3T supine MRIs. These are much easier to access and more likely to be covered by insurance. You will find that different neurosurgeons will have slightly different preferences for imaging. They update their preferred imaging as knowledge advances, so you'll need to call their offices to verify which imaging they prefer.

 

[Gingergrrl]

On @jeff_w's website www.mechanicalbasis.org he says:

Sorry, my bad, and I didn't realize that supine CT scans were okay and thought it was just MRI's.

 

[Hip]

I didn't realize that supine CT scans were okay and thought it was just MRI's.

From the quoted paragraph from Jeff's site, it seems that things change, and one of the CCI/AAI neurosurgeons now prefers MRIs taken lying horizontal. So Jeff says it's best to call the office of the neurosurgeon and ask which sort of imaging they prefer.

 

[Jessrose21]

I believe that you need an MRI of your cervical spine, not a CT scan, for Dr. Bolognese (or other surgeons) when assessing for CCI but others can speak to this better than I can.

I had a 3T MRI of my cervical spine back in Dec b/c my chronic neck pain (which radiates down my right arm) was getting worse and both my main doctor and my (former) PT wanted to see what was going on. Dr. B viewed my MRI and I did not have CCI (which I never suspected in my case vs. cervical radiculopathy and some other issues).

But from my research at that time, and following all of the threads re: CCI here on PR, I believe that you need an MRI and not a CT scan.

Thanks for your reply, @Gingergrrl . I should have mentioned that I can't have an MRI because I have non-MRI compatible cardiac pacemaker. @jeff_w was diagnosed via CT scan, so it is possible, but not ideal.

 

[jeff_w]

Thanks for your reply, @Gingergrrl . I should have mentioned that I can't have an MRI because I have non-MRI compatible cardiac pacemaker. @jeff_w was diagnosed via CT scan, so it is possible, but not ideal.

MRI (not CT) is for Chiari. CT and/or MRI is for CCI/AAI.

Your best bet is to call the neurosurgeon's office and ask which imaging they prefer. Good luck with this!

 

[Jessrose21]

MRI (not CT) is for Chiari. CT and/or MRI is for CCI/AAI.

Your best bet is to call the neurosurgeon's office and ask which imaging they prefer. Good luck with this!

Thanks for the clarification. It's been one frustration after another.

 

[MTpockets]

So did any of the test results or biomarkers change after the surgery?

 

[jeff_w]

So did any of the test results or biomarkers change after the surgery?

Not sure about Jen's yet, but mine did.

My EBV titers (IgM and IgG), mycoplasma pneumonia (IgM and IgG), and parvovirus (IgM and IgG) were chronically elevated during my entire time with ME/POTS/PEM.

After I corrected my brainstem compression with a halo, and then with fusion surgery, these values all normalized. (In addition to normalized titers, my POTS, MCAS, and PEM also went away completely, as you probably already knew.)

 

[junkcrap50]

My EBV titers (IgM and IgG), mycoplasma pneumonia (IgM and IgG), and parvovirus (IgM and IgG) were chronically elevated during my entire time with ME/POTS/PEM.

After I corrected my brainstem compression with a halo, and then with fusion surgery, these values all normalized. (POTS, MCAS, and PEM also went away completely.)

That just sounds crazy how the viral titers went away completely.

(Rhetorical questions): Is it because the immune system was working normally, killing any and all virus? OR is it because the broken immune system was mistakenly making viral antibodies?