My ME is in remission

[cmt12]

Not insane at all! Does pumping iron twice a week and doing cardio count? That's what I do now.



It makes a lot of sense, and that's what I'm doing. I work out at the gym, and I have no PEM whatsoever. Instead of PEM, I feel that sweet familiar muscle burn that I had prior to getting sick. Vigorous activity actually energizes me now.

Can you be specific on your workouts? Are you deadlifting or squatting? Can you run on a treadmill for ten minutes straight?

 

[MEPatient345]

During this pre-surgical traction test, Jen felt healthy for the first time in years. With this traction test, the neurosurgeon temporarily lifts the skull off of the brainstem in a precise, x-ray-guided manner -- completely freeing the brainstem from mechanical compression. When the neurosurgeon let go, Jen felt sick with ME once again. This is a clear indication that Jen's problem was brainstem compression, as was mine.

@jeff_w and @JenB, I’m wondering about this.. I’m not sure I would know immediately during a test, while lying on a hospital bed and not being able to move around or have time to evaluate how I felt.. Is this a supine test, and how long does it last for? What if you cannot tell if it’s helping and they decide not to do it based on that?

 

[chris160]

In this post I speculated that connective-tissue degrading enzymes, a set of enzymes that viral infections may induce, might possibly explain the weakened connective tissue that leads to CCI/AAI
Coxsackievirus B is also known to chronically infect

In this post I speculated that connective-tissue degrading enzymes, a set of enzymes that viral infections may induce, might possibly explain the weakened connective tissue that leads to CCI/AAI.

Coxsackievirus B is also known to chronically infect fibroblast cells. These are the cells which make the collagen and elastin of connective tissue.

cells. These are the cells which make the collagen and elastin of connective tissue.

 

[junkcrap50]

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.)

Is @JenB going to remeasure all her labs (viral titers, autoantibodies, NK function, MCAS levels, etc) and see if they normalize as well?

 

[maybe some day]

@JenB
That's the best gift ever, great news! Were their symptoms that weren't typical of cfs/me? As in anything that got worse when turning your head, posture, etc.

Again, hearfelt congrats. Hopefully we hear more of these outcomes.

 

[Roy S]

Jen and Jeff,
If you had one place for all the available information people are seeking it might help a lot.
FAQ's and all other good questions could be answered well once.
Updates could be added.

About all of my questions have been answered but it took a lot of extra time to find the info, Finding something again could be difficult.

 

[jeff_w]

Hi @Roy S

Jen and Jeff,
If you had one place for all the available information people are seeking it might help a lot. FAQ's and all other good questions could be answered well once.
Updates could be added.

I added an FAQ section to my website tonight. It will continually evolve as information is added over time.

 

[Hip]

@jeff_w and @JenB, I’m wondering about this.. I’m not sure I would know immediately during a test, while lying on a hospital bed and not being able to move around or have time to evaluate how I felt.. Is this a supine test, and how long does it last for? What if you cannot tell if it’s helping and they decide not to do it based on that?

Yes, this is my question also. It is actually possible to perform a neck traction test for CCI/AAI yourself at home using an over-the-door neck traction device that you can cheaply buy on, for example, Amazon. Jeff says this about such devices:

My neurosurgeon has some people try over-the-door traction and physical therapy prior to making a decision on surgery. He says that people with "equivocal" or borderline measurements can sometimes avoid surgery by doing traction and physical therapy. He will only operate if conservative measures have failed, or if your measurements are extremely severe (as mine were).

Myself and @sb4 bought one of these neck stretchers, and tried applying an upward traction force to the head. However, neither of us felt any noticeable relief from ME/CFS symptoms while under this over-the-door neck traction device.

In my case, I tried over-the-door neck stretching at 5 kg force for 15 minutes, and then later neck stretching at 10 kg force for 7 minutes (this higher force actually seemed to permanently relax or loosen my neck, which may or may not be a good thing). Though years ago when I had cobbled together a neck stretcher device out of some household furniture, I did experience some benefits the day after the stretching.

I understand that Jeff's POTS and PEM were relieved under traction, but I am not clear how you would actually test and observe that. POTS testing requires an active standing test or tilt table test, which you will not be able to do with an over-the-door neck stretching device, though maybe it's possible with the devices used in hospitals.

And you will only really know if PEM has disappeared if you perform physical exertion and observe no after effects the next day, which again is not really possible while in an over-the-door device (though I guess if PEM from a previous exertion has already started, you could put yourself under over-the-door traction and see if that mitigated PEM).



Note that Jeff also cautions that home neck stretching can cause issues if you happened to have tethered cord:

I agree with this, and I’m somewhat concerned about people doing traction without first knowing their anatomy. It’s safer to consult a specialist neurosurgeon and get a baseline MRI before doing this. But I know that’s not always possible.

You just really don’t want to be stretching out those sensitive neural structures incorrectly. There’s a neurosurgical issue called “Tethered Cord,” and traction could worsen that, if you have it. That’s why I think it’s best to see a neurosurgeon, as the traction only picks up on limited issues, when you could potentially have more complexities. I’d just hate for you guys to get worse from experimenting with this.

 

[MEPatient345]

Note that Jeff also cautions that home neck stretching can cause issues if you happened to have tethered cord:

Yeah,. I think I’d be quite nervous to do any sort of weighted device at home. Have read on some of the other threads of patients getting worse, I think it was @debored13.
Did you have improvement from your trials @Hip?

My symptoms are omnipresent, I get PEM too. But i feel like I need to move around, try to interact w world, use my eyes etc to notice them improve prominently, and I’m wondering about the traction test in the hospital being a good indicator of improvement, in hospital bed prior to surgery. I feel like I wouldn’t necessarily know while lying down if that’s how it’s done.

 

[Hip]

Did you have improvement from your trials @Hip?

No I did not notice any improvements while in the over-the-door neck traction device, nor afterwards; but I guess it's possible my POTS may have disappeared while under traction, but I do not have the means to test it.

If I had a tilt table, or could cobble together a makeshift tilt table (from an old door say), I guess I could attach the neck traction device to the tilt table aligned horizontally, place myself under neck traction, and then measure the increase in heart rate when the tilt table is oriented vertically.

Normally when I stand up from a relaxed lying down position, my heart rate increases by around 30 points, which is diagnostic for POTS. It would be interesting to see if that increase were less under neck traction.

 

[Cipher]

Does anyone know the ballpark cost of this CCI/AAI surgery?

According to a swedish blog the cost for a "Craniocervical fusion in the levels C0-C7- Posterior fusion stabilization" in Barcelona (with Dr.Gilete and Dr.Oliver at the Teknon Hospital, I think) was about 57 200 USD. The diagnoses that were treated in this case was Craniocervical Instability, Atlantoaxial Instability, Subaxial Instability och Cervicomedullary compression syndrome.

 

[LouiseLouise]

@jeff_w and others, I have gotten a clunking sensation right at the base of my skull if I jump up and down, like if I were to do a couple of jumping jacks, for years now. This is not normal, correct? Might this sort of sensation be consistent with CCI and/or AAI?

 

[Rufous McKinney]

According to a swedish blog the cost for a "Craniocervical fusion in the levels C0-C7- Posterior fusion stabilization" in Barcelona (with Dr.Gilete and Dr.Oliver at the Teknon Hosptial, I think) was about 57 200 USD.

Does anyone know if, in the US, this operation has been covered by insurance or are these all privately funded procedures?

 

[AnkeC]

Does anyone know if, in the US, this operation has been covered by insurance or are these all privately funded procedures?

I'd also like to know more about the US costs. I saw a few figures for Dr Gilete in Spain, but Dr Bolognese's clinic I have no idea of cost for. Usually American fees are crazy high, so I expect them to be much more than the overall Spanish cost.

I've sent off my scans to both Drs today. We'll see what comes of it.

 

[Rufous McKinney]

I'd also like to know more about the US costs.

I would add numerous probably 2 zeros to the: total cost US.

 

[wastwater]

Congenitally it’s likely I have a narrow spinal canal
https://www.ejpn-journal.com/article/S1090-3798(08)70561-0/abstract
There are quite a few anatomical differences in Axenfeld rieger syndrome chiari is another and empty sellar syndrome (congenital)

 

[jeff_w]

Does anyone know if, in the US, this operation has been covered by insurance or are these all privately funded procedures?

My insurance covered the fusion. I'm in the USA. With few exceptions, all US insurance plans will cover it.

 

[jeff_w]

Congenitally it’s likely I have a narrow spinal canal

As for a narrow spinal canal -- if it's sufficiently narrow, it's "cervical stenosis." A narrow spinal canal can squeeze your spinal cord, causing chronic spinal cord compression. This spinal cord compression can cause extremely similar, if not identical, symptoms to brainstem compression from CCI: POTS, PEM, etc.

A case series from 2018 showed 3 people with ME made complete recoveries after cervical fusion surgeries. These fusions relieved their spinal cord compression. Like you, they all had congenitally narrow spinal canals / cervical spinal stenosis.

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis.

 

[frozenborderline]

in theory, could we be cured by nuking the group of cells which constitute: the sickness detectors?)...I would hypothesize NO. We would still: be sick, even if the "sickness response" was neutered.

we often think of inflammation as the problem, or neuro inflammation, by which most people /studies mean activated microglia. However a recent case study was done of a boy who was born without any microglia. He died very young and his cognition ans health were very poor generally. We need an ecological, systems theory approach to biology rather than one based on the models of warfare, where we simply try and fight or cut out given groups of cells without knowing what is causing activation.

 

[frozenborderline]

. In fact, in a recent talk at my old college that I had to drop out of, Ron did address a question on cci, possibly for the first time The school has been very slow to release the video. If you are interested in getting it, please politely email pstone@hampshire and media@hampshire.edu, asking when the February Unrest screening and event with Ron Davis that was recorded, will be released.

pstone@hampshire.edu And please do this guys! That was a really great panel I heard.