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

[Daffodil]

It’s mg understanding that they recommend you go off NSAIDS and many other drugs when you do stem cell treatments because they impair healing

yes i read some antibiotics too....but i am not sure if that is the case for PRP.....

 

[frozenborderline]

@Daffodil , it’s just a theory, but I do feel that environmental mold and/or some other kind of inflammatory toxin, could have caused my cci to an extent. @Hip made a very nice effortpost somewhere that outlines all of the different things that can cause elevation of various mmps, which are cytokines that break down connective tissue. Mycotoxins Ian one of the things that cause this elevation, and viruses are another. But as other members have pointed out, the awful brain on fire/brain fog sensation can Ben caused by mcas or dither inflammatory illnesses related to the environments

 

[Daffodil]

Mast cell activation syndrome is an immune condition where your mast cells can become activated by a number of triggers without having any kind of fixed IgE allergy, and they release inflammatory mediators, causing everything from brain fog to anaphylaxis to food intolerances. How it relates to your home environment is that you may have mold or other similar stuff in your home environment that could cause this inflammation and brain fog.

ohh i see. thanks for that info. i am quite sure mold is not an issue here. years ago, i was worried so we had remediation which cost us thousands and there was almost no mold there. we also had our bathroom redone after a flood and the entire condo was like an oven when they had their drying machines here. it is also pretty dry in here. i do smell mold sometimes in the tiny laundry room we have but it goes away when i clean the washing machine and wash the wet clothes. lol

 

[Daffodil]

@Daffodil , it’s just a theory, but I do feel that environmental mold and/or some other kind of inflammatory toxin, could have caused my cci to an extent. @Hip made a very nice effortpost somewhere that outlines all of the different things that can cause elevation of various mmps, which are cytokines that break down connective tissue. Mycotoxins Ian one of the things that cause this elevation, and viruses are another. But as other members have pointed out, the awful brain on fire/brain fog sensation can Ben caused by mcas or dither inflammatory illnesses related to the environments

KDM started doing the MMP-9 test a couple of years ago test but I do not remember the results. I remember him saying something about mold. Oh, also, none of inflammatory markers for mold are elevated in me: tgf-beta, etc (cant remember the others but i have looked into it). sorry fog bad right now

 

[Gingergrrl]

Mast cell activation syndrome is an immune condition where your mast cells can become activated by a number of triggers without having any kind of fixed IgE allergy, and they release inflammatory mediators, causing everything from brain fog to anaphylaxis to food intolerances. How it relates to your home environment is that you may have mold or other similar stuff in your home environment that could cause this inflammation and brain fog.

This is a very good summary that applies to my case (except that I do not have CCI or brain fog). But I had both viral and mold/mycotoxin triggers that flipped into MCAS and all kinds of other autoimmunity.

 

[frozenborderline]

KDM started doing the MMP-9 test a couple of years ago test but I do not remember the results. I remember him saying something about mold. Oh, also, none of inflammatory markers for mold are elevated in me: tgf-beta, etc (cant remember the others but i have looked into it). sorry fog bad right now

I was unfortunately unable to run the full shoemaker panel Bc local lab wouldn’t do tgf beta. But , The reference ranges for those labs are based almost exclusively on mold illness people, since I believe shoemaker got these lab companies to start doing these tests , and most people that get them are mold illness. So, look at the range on shoemakers website rather than if the labcorp report says normal range.

Lots of doctors sell mycotoxin tests that are fairly invalidated, there are really no tests beyond tests that generally get at inflammatory illness and are not

 

[Daffodil]

@debored13 ohh. i think i got the tests done at redlabs, sometimes in reno and sometimes in belgium. but all the markers were normal...there were a few they checked for, i just cant remember the names. i also did a trial of the anti fungal nasal protocol..i think brewers protocol. he had some patients whose energy was improved (like mine was at the time) but whose brain was still foggy....and some of them improved on the sinus treatment. i got somewhat worse but no one could tell me if it was die off or not so i stopped it since my markers were normal.

 

[Daffodil]

This is a very good summary that applies to my case (except that I do not have CCI or brain fog). But I had both viral and mold/mycotoxin triggers that flipped into MCAS and all kinds of other autoimmunity.

did treatment with antifungals and mold remediation etc help?

 

[frozenborderline]

did treatment with antifungals and mold remediation etc help?

Gingergrrl can tell her story, but I wanted to mention that anyifungals are controversial among mold doctors and many people think the overuse will only do harm. Mycotoxins are toxic but in most cases cause harm without mold actually colonizing patients. Overuse of antifungals May make mold more virulent

 

[Gingergrrl]

@Daffodil My story with mold/ mycotoxins is long and complex but in a nutshell, we had a rental for several years with off the charts, obscenely high levels of mold/ mycotoxins and had endless testing and multiple failed remediations.

Ultimately we had to move and lost all of our belongings except our cars and a few items which could be salvaged. We saw a mold specialist (doctor) who put me on nebulized glutathione and mold binders (I did not do anti-fungals like Debored13 explained) but I couldn’t tolerate any hardcore binders b/c my MCAS/ anaphylaxis was so severe at that time.

If we had stayed in that rental w/the Stachybotrys (toxic black mold) which produces the mycotoxin, Tricothecenes, (plus we had 19 other mycotoxins on testing of the air, a/c vents, clothing, electronics, furniture, etc), I do not believe that I would be alive today. If more info would be helpful, send me a PM.

 

[Daffodil]

@Gingergrrl omg what a story! were you able to sue? how much better are you from treating the mold issues?

 

[Daffodil]

@debored13 i was reading a little about mast cell activation and syndrome and it doesnt sound that different than CFS/ME itself so I am a little confused.

 

[frozenborderline]

@debored13 i was reading a little about mast cell activation and syndrome and it doesnt sound that different than CFS/ME itself so I am a little confused.

What are you confused about? Many ME/CFS physicians think there’s a significant overlap between mast cell activation disorder and cfs. Like up to fifty percent of their patients, according to Susan Levine.
But treating mcas can improve quality of life but unless treating the root cause tends to not “cure” me/cfs.

 

[Gingergrrl]

@Gingergrrl omg what a story! were you able to sue? how much better are you from treating the mold issues?

We hired an attorney who said that we had an excellent case (with incontrovertible proof) but sadly we had passed the statute of limitations for mold cases in the US which is only 2 yrs. We tried everything but there was no way around that issue so after working w/the atty for a year, we had to stop. Sadly, we got nothing.

Yes, I am better from moving away from the mold, giving up our belongings, and doing treatments from the mold doc that I could tolerate (which was limited at that time b/c of my MCAS, not because of her and she was excellent). It was not until I began IVIG that my MCAS went into remission. But had I not moved away from the mold, nothing, including IVIG, would have stood a chance at working.

What are you confused about? Many ME/CFS physicians think there’s a significant overlap between mast cell activation disorder and cfs. Like up to fifty percent of their patients, according to Susan Levine.

I agree that there is a great deal of symptom overlap and my doctor (not Dr. Levine) also said that at least 50% of his patients, if not higher, also have MCAS. He wrote about it in an article but since I don't remember what it was called, I don't want to misquote him.

 

[jeff_w]

UPDATE: Just like me, Jen Brea has fully recovered from ME after her fusion surgery for CCI/AAI.

Here's her thread.

 

[rel8ted]

UPDATE: Just like me, Jen Brea has fully recovered from ME after her fusion surgery for CCI/AAI.

Here's her thread.

I am expecting the same for @mattie and @StarChild56

 

[frozenborderline]

So, for rotational ct imaging, if the ct place doesn’t have 3D software can I just get the scans and have someone else reconstruct it or nah?

 

[jeff_w]

So, for rotational ct imaging, if the ct place doesn’t have 3D software can I just get the scans and have someone else reconstruct it or nah?

I think the answer is "no," but I'm not certain of this. The imaging center would be able to tell you if you call and ask.

 

[minimus]

This may have been answered already. If so, my apologies, as I don't have the mental stamina to read a 65-page thread.

How much does CCI diagnosis and treatment cost from initial imaging to neurosurgeon consults to surgery to hospitalization to post-treatment physical therapy? I assume the cost is well into the hundreds of thousands of dollars in the US, since I can't imagine that neurosurgery lasting up to 8 hours (?) is cheap.

Do you need really deep pockets, a willingness to go into debt, or really good private health insurance in the US, possibly through a spouse/domestic partner or parent, to consider going down this diagnostic route, as opposed to an Obamacare plan or Medicare. Would be really helpful to know if treatment is even within the realm of financial possibility before considering getting diagnostic imaging done in the first place. Thanks.

 

[mattie]

This may have been answered already. If so, my apologies, as I don't have the mental stamina to read a 65-page thread.

How much does CCI diagnosis and treatment cost from initial imaging to neurosurgeon consults to surgery to hospitalization to post-treatment physical therapy? I assume the cost is well into the hundreds of thousands of dollars in the US, since I can't imagine that neurosurgery lasting up to 8 hours (?) is cheap.

Do you need really deep pockets, a willingness to go into debt, or really good private health insurance in the US, possibly through a spouse/domestic partner or parent, to consider going down this diagnostic route, as opposed to an Obamacare plan or Medicare. Would be really helpful to know if treatment is even within the realm of financial possibility before considering getting diagnostic imaging done in the first place. Thanks.

Surgery in Europe is a lot cheaper than in the US. But it will always be a lot of money obviously, which is why many patients have to resort to crowdfunding.
For me total costs including all imaging, flight, hotels, post-op hospital stay and re-operation insurance were around 70.000 euros.
I was able to get a good percentage of that back through a tax-refund.
Costs will also depend on how many levels you need fused and costs may vary over time.