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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 83 76.1%
  • Negative

    Votes: 26 23.9%

  • Total voters
    109

pibee

Senior Member
Messages
304
I understand that a POTS diagnosis is one of the most simple and clearcut medical tests you can get: if your heart rate increases by at least 30 points on becoming upright from a relaxed lying down conditions, then you have POTS. Simple as that.

Are you saying that there are some POTS-like syndromes which also satisfy this 30 point increase, but which are not POTS?

No, POTS is right now defined as +30 average increase without any drop of BP.
I can't know this, but I know as mentioend people misdiagnoed w POTS because they have similar condition like increase of HR initially but then it falls back , and on average wasnt +30, they still got diagnosed because doctors weren't pots specialists (As there are few).. and such person didnt have positive antibodies either

another reason would be if tilt up test is not appropriate for autonomic testing, like in some cardiology units, and doesn't measure BP frequently enough.
i think Initial Orthostatic Hypotension can be detected only w tilt test that measures BP from finger too, -and IOH would produce initial spike in HR


I think the answer is in between. I have an official diagnosis of POTS confirmed by 2 tilt table tests (and other such tests).

I have been ill for 9 years, and I have experienced autonomic symptoms that entire time. (Gastroparesis, heart pounding, little to no sweat, etc). However I only experienced the tachycardia aspect of POTS for around 2 years when I was at my very worst.

Now I would probably pass a tilt table test as normal as my HR seems to have become more undercontrol. However if I have a bad day, or it's too warm, or I have just eaten, etc I would probably fail the tilt table again.

I still have all the autonomic symptoms I have had from the start, my heart pounding is still my worst symptom, heat, food, carbs, exacerbate my condition; however I would probably be declared in remission if my POTS docs gave me another TTT.

So I think POTS is certainitly a thing and is somewhat useful as a diagnosis however it's not a you either have it or you don't sort of thing, more of a spectrum. I hope that makes sense.



This is different because you already had clear positive TTT, so there is no question you have it. It's like MS, they can have 1 positive MR and later long period of remission, they still have MS.
of course TTT is not perfect.
I had 3 positives nonstop all bookcase, after IVIG my TTT got negative because my antibodies reduced drastically and overall my OI was less present, but I still have POTS, just less active.

Important for diagnosis is that that one time you had positive TTT it was properly done, of course.

Of course there ae many conditions in between, that's what I am saying, some of them are not autoimmune.


My TTT also got much much worse when the lab had heating issue and it was +40 C in lab I was laying on table 1+ hr, i boiled, and the results were extreme. Heat is most common trigger for me.
My POTS is exclusively orthostatic intolerance, I dont have any gastro or urinary issues, not even sweating, palpitations, dizziness. I don't feel my Heart beat even when I have 150-160 HR, .. i just feel OI and fatigue until i lay down.
 

frozenborderline

Senior Member
Messages
4,405
Never heard of Rowe, must not be affiliated with Dysautonomia International

Rowe is a renowned physician and researcher focusing on Dysautonomia.
What I say, or think, it's not relevant, it's relevant that there is strong indication that it's autoimmune and of course there will be another few years before that's accepted.
You can easily find more information, they don't base that opinion only on antibodies, there are certain criteria when disease is accepted as autoimmune, POTS is very close to fullfill all the criteria. Like passive transfer of antibodies to animal , causes POTS.
If you could provide some citations that would be good. And I mean citations for the idea that it's almost certainly all autoimmune , and that 95 percent of doctors think so, not just a paper that suggests some of it could be. We all probably are aware of the link btwn antibodies and some cases of pots but its news to me that its considered a totally settled issue

Not speaking of all people, ME probably is not autoimmune.

But ME and POTS are very much related. Of course there are POTS cases that dont present with ME, but rarer the other way around. And even if there is no POTS in an ME patient, there tends to be some kind of blood volume or Dysautonomia issue

I almost dont consider pots it's own condition bc when it occurs with ME it seems to be more of a symptom complex that points toward a common root cause rather than a discrete entity. With ME and POTS I think that david bell's work has been illuminating and there is hypovolemia causing the pots

I appreciate you dont want people rushing into a dangerous surgery or unproven treatment. But we should apply the same scrutiny toward all ideas in this illness. If I said cci was a probable cause of all POTS or even most, you would correctly say that hasn't been proven. The same is true of autoimmunity. There are multiple good theories in this illness but not enough evidence for any of them, or we'd be celebrating right now rather than having a discussion on a message board
 

MEPatient345

Guest
Messages
479
@Silencio I did that already. My last update was about my trip to Italy to rule out OTC. Nothing changed since then.
I did see that, thank you for sharing all that. I didn’t have a clear idea from that how your ME was tho, since you mostly focused on symptoms you have that you think are related to tethered cord. I was wondering how your specifically ME symptoms are (fatigue, PEM, cognitive symptoms and OI), none of which you had mentioned.
 

pibee

Senior Member
Messages
304
Rowe is a renowned physician and researcher focusing on Dysautonomia.

Any trials he did ? I dont see except case reports.
If you could provide some citations that would be good. And I mean citations for the idea that it's almost certainly all autoimmune , and that 95 percent of doctors think so, not just a paper that suggests some of it could be. We all probably are aware of the link btwn antibodies and some cases of pots but its news to me that its considered a totally settled issue

There is too much research to give you just 1, there are at least dozen in last several years. If you're not aware of that, please review the literature again before thinki ts just "some cases" of POTS.

example:

But ME and POTS are very much related. Of course there are POTS cases that dont present with ME, but rarer the other way around. And even if there is no POTS in an ME patient, there tends to be some kind of blood volume or Dysautonomia issue

From what I remember, not big % of ME patient had POTS , it was mention 12%, or some number like that not making it even more often in ME than in MS or RA, or Sjogrens especially.
But if it's even up to 30%, it is still 2 distinct illnesses.

BTW, i really do have ME too, .. not to go too long about my case but I have very typical CNS symptoms of it, especially prominent after ceftraixone,.. and IVIG did nothing for it, ... zero. while it put POTS in remission within 9 days, and physical fatigue. but brain fatigue and problems with reading,thinking socializing I got from ceftraixone, werent imrpoved at all w IVIG, only w essential oils for SIBO....much later

so i gess ME and POTS are related but not same cause. More like cascade.
I almost dont consider pots it's own condition bc when it occurs with ME it seems to be more of a symptom complex that points toward a common root cause rather than a discrete entity. With ME and POTS I think that david bell's work has been illuminating and there is hypovolemia causing the pots
Hypovolemia might be consequence of AI process, it means actually nothing in general about etiology.

I appreciate you dont want people rushing into a dangerous surgery or unproven treatment. But we should apply the same scrutiny toward all ideas in this illness.

No, no, we really shouldnt" CCI surgery is horribly expensive and even way worse, extremely dangerous, of course the reasons to do such surgery need to be abut 100x stronger than to just try IVIG (or any other similar treatment) and see what happens.

First, do no harm... .and all that jazz ;)
If I said cci was a probable cause of all POTS or even most, you would correctly say that hasn't been proven. The same is true of autoimmunity. There are multiple good theories in this illness but not enough evidence for any of them, or we'd be celebrating right now rather than having a discussion on a message board

It's not the same, as I see CCI is represented just by several outcasts in scientific community, not mainstream opinion.
POTS as autoimmune is getting very mainstream. Proof for that is that I got IVIG for it in 3rd world country (Croatia, more like 2nd and a half world). , that is very conservative and medical establishment is very EBM, without even quacks and naturopaths working much in private sector.


This is not only my opinion, but lets say it is, you might review recent research and tell me reasons why is there such a big doubt that POTS is autoimmune, to a point of totally disregarding all research.
There might be some possibility subgroup of patients are not autoimmune but even that soudns unlikely given the research and also same pathology is unlikely to be completely different mechanism


Just one recent research:

Postural Orthostatic Tachycardia Syndrome Is Associated With Elevated G‐Protein Coupled Receptor Autoantibodies

https://www.ahajournals.org/doi/10.1161/JAHA.119.013602

Abstract
Background
The etiology of postural orthostatic tachycardia syndrome (POTS) is yet to be established. The disorder is often misdiagnosed as chronic anxiety or a panic disorder because the autonomic failure in these patients is not severe. A growing body of evidence suggests that POTS may be an autoimmune disorder. Antinuclear antibodies and elevations of ganglionic, adrenergic, and muscarinic acetylcholine receptor antibodies have all been reported.
Methods and Results
We collected detailed clinical symptoms of 55 patients diagnosed with POTS. We also evaluated serum levels of autoantibodies against 4 subtypes of G‐protein coupled adrenergic receptors and 5 subtypes of G‐protein coupled muscarinic acetylcholine receptors by ELISA. Our patients had a multitude of comorbidities, were predominantly young females, and reported viral‐like symptoms preceding episodes of syncope. We detected a significant number of patients with elevated levels of autoantibodies against the adrenergic alpha 1 receptor (89%) and against the muscarinic acetylcholine M4 receptor (53%). Surprisingly, elevations of muscarinic receptor autoantibodies appeared to be dependent upon elevation of autoantibodies against the A1 adrenergic receptor! Four patients had elevations of G‐protein coupled autoantibodies against all 9 receptor subtypes measured in our study. Five POTS patients had no elevation of any autoantibody; similarly, controls were also negative for autoantibody elevations. There was a weak correlation of clinical symptom severity with G‐protein coupled autoantibodies.
 

frozenborderline

Senior Member
Messages
4,405
No, no, we really shouldnt" CCI surgery is horribly expensive and even way worse, extremely dangerous, of course the reasons to do such surgery need to be abut 100x stronger than to just try IVIG (or any other similar treatment) and see what happens.

First, do no harm... .and all that jazz ;)

Cci surgery is covered by insurance in some places. Regardless, this is a bad line of reasoning. We dont decide questions about the etiology of a disease based on extrapolating what the treatment would be if that etiology were correct and how serious the side effects are and how expensive it is.

I dont know where to start with that idea bc it is so backwards scientifically.

Figuring out the etiology of a diseade comes before trialing treatments, or it should at least.
It's not the same, as I see CCI is represented just by several outcasts in scientific community, not mainstream opinion.
POTS as autoimmune is getting very mainstream. Proof for that is that I got IVIG for it in 3rd world country (Croatia, more like 2nd and a half world). , that is very conservative and medical establishment is very EBM, without even quacks and naturopaths working much in private sector.
This is not proof of anything. Plenty of conservative, traditional doctors do treatments without good evidence bases. And I think your characterization of scientific outcasts is a mere opinion.
There might be some possibility subgroup of patients are not autoimmune but even that soudns unlikely given the research and also same pathology is unlikely to be completely different mechanism


Just one recent research
That is very interesting and maybe fruitful research but the conclusion is not that POTS is necessarily caused by autoimmunity but that there is an association between some antibodies and pots in some patients.
 

frozenborderline

Senior Member
Messages
4,405
This is not only my opinion, but lets say it is, you might review recent research and tell me reasons why is there such a big doubt that POTS is autoimmune, to a point of totally disregarding all research.
This is not how scientific evidence works. You provided the claim that is extraordinary, then you need to back it up.
 

frozenborderline

Senior Member
Messages
4,405
No, no, we really shouldnt" CCI surgery is horribly expensive and even way worse, extremely dangerous, of course the reasons to do such surgery need to be abut 100x stronger than to just try IVIG (or any other similar treatment) and see what happens.

First, do no harm... .and all that jazz ;)
The point of researching the cci connection is not to push cci as a treatment, but rather to see if cci is connected to ME, and then go from there. It could mean future non surgical treatments. It could mean prevention.

And like I said earlier, this is not how science is done. There are several diseases that dont yet have treatments, or have horrible treatments, but in those cases would it be better if a scientist had said "I dont like this idea of the etiology because the treatments based on that would be horrible" ?
 

pibee

Senior Member
Messages
304
Figuring out the etiology of a disease comes before trialing treatments, or it should at least.

That's what I said actually, without knowing if CCI is even linked to the cause of symptoms, or if surgery is fixing the underlying cause of CCI ,, no point in doing such surgery.
And especially if you know you have POTS which is high betting in science community that it's autoimmune.
The odds on autoimmune vs not would be placed at least 5:1, ... so how is it even theoretically possible CCI would cure someone from autoimmune disease.....


Just doing highly invasive surgery in someone who has strong possibility to actually have autoimmune disease is very bad medicine, it should be last option, not first, and from what I see the autoimmune treatment wasnt trialed before.
 

frozenborderline

Senior Member
Messages
4,405
That's what I said actually, without knowing if CCI is even linked to the cause of symptoms, or if surgery is fixing the underlying cause of CCI ,, no point in doing such surgery.
But what you actually said is we shouldn't apply the same scrutiny to different scientific theories bc some of them could lead to treatments that have more risks

I vehemently disagree with that
 

frozenborderline

Senior Member
Messages
4,405
And especially if you know you have POTS which is high betting in science community that it's autoimmune.
The odds on autoimmune vs not would be placed at least 5:1, ... so how is it even theoretically possible CCI would cure someone from autoimmune disease.....
what scientists are saying the odds are 5:1 in favor of autoimmunity?


I dont know how it is possible cci surgery would cure someone with an autoimmune disease. We haven't studied *either* of these things enough.

In theory spinal cord and brainstem injury can cause immune system problems, or vice versa, the autoimmunity could cause elastin to break down as in RA, eventually leading to more intense neuro symptoms. But again, we haven't studied any of this enough to know.
Just doing highly invasive surgery in someone who has strong possibility to actually has autoimmune disease is very bad medicine, it should be last option, not first, and from what I see the autoimmune treatment wasnt trialed before.

Take my case. I have no signs of autoimmunity and no antibodies in thorough blood work. I do have signs of low immunity, an MRI showing cci, response to traction , and an intense beneficial response to pristine wilderness air, which cures many of my mcas symptkms. Why would it make sense for me to do treatments for autoimmunity before cci surgery, when I have no money for those treatments and no doctor has recommended them, even me/cfs and pots specialists, and there is no evidence beyond your opinion that they are the cause of all pots cases or even most?


What about doing highly invasive surgery in someone who is diagnosed with cci based on consensus guidelines, and is totally dependent on a collar, with PT not helping ?


I have no strong opinion on whether cci is the ultimate cause of Me/cfs or pots. I do however think that many people confidently claim that such and such treatment is the cure for me/cfs or pots every day on forums all across the internet, and so far most of them have nothing to show for it. It would take a lot more research funding and science to accomplish finding even the etiology, than we currently have. So I am doubtful there are any really strong consensuses on the ultimate cause of all POTS
 

Hip

Senior Member
Messages
17,793
@debored13 I know, it is also a mystery to me. I thought a lot about how and why the results seem to be so different. I feel like it has a lot to do with how you treat all the other conditions, especially MCAS and possible mold issues!
I went from 90% bedbound to 90% homebound. Of course I was hoping for more but I am still grateful.
Hi Julia, would you consider updating the FB group with your progress too? I think it’s important to hear more detail from people who have had surgery.

Also, please update the CCI survey regarding your final outcome, if you would not mind. This survey is tracking the outcomes of ME/CFS patients who have had surgery and other interventions for CCI and related conditions.


If anyone wants to see the CCI surgery outcomes so far, have a look at the column "Severity after surgery" in this spreadsheet of survey results, and compare it to the "ME/CFS severity" column, which shows the severity level before surgery.
 

pibee

Senior Member
Messages
304
what scientists are saying the odds are 5:1 in favor of autoimmunity?
Prettymuch everyone relevant in Dysautonomia research. I never heard anyone claiming it's not autoimmune, like there is a lot of case w ME
Why go against 90% of positives on antibodies? Causing POTS in animals by transfering antibodies to them? Curing it by removing same antibodies in animals? 50% POTS patients positive for early Sjo antibodies, which are considered reliable marker for Sjogrens.
Neuropathies, which are considered autoimmune usually in youth, by most researchers, even without antibodies.

There are not many more proofs for diseases like MS that it's autoimmune either, it's actually remarkable how clear POTS is with the proofs, almost to a level of Hashimoto or lupus who have 90% positives w antibodies too.

I know my claims are not EBM but again there should be priority to consider strong indication in favor and not disregard all mentioned because it's still not uniquely accepted.

As for your case, ... did you ever test CellTrend antibodies, or Wallukat's (he did mine for free as part of research, maybe he still accepts samples !), or early Sjogrens?
I did Facebook Poll and got same % of positives on CellTrend as Grubb did, within few days almost 80 answered that poll, 90% of patients who tested CellTrend respond they are positive. I yet never met anyone who doesn't have POTS that tested positive and researchers also document that anyway.
 
Messages
38
Location
Berlin, Germany
@debored13 unfortunately I can’t afford to go on a proper mold sabbatical. I‘m a single mom and I don’t have the money or support system to leave everything behind. But I became ill after working in a cold and moldy building and after moving into a new home. I also had a root canal treatment prior to my onset and I suspect that they used stuff that triggered my MCAS. I still suspect these two places to be a part of the cause. I have had MCAS issues my whole life. I recently moved into a new home and I’m monitoring the changes in my health.
 

frozenborderline

Senior Member
Messages
4,405
unfortunately I can’t afford to go on a proper mold sabbatical. I‘m a single mom and I don’t have the money or support system to leave everything behind. But I became ill after working in a cold and moldy building and after moving into a new home. I also had a root canal treatment prior to my onset and I suspect that they used stuff that triggered my MCAS. I still suspect these two places to be a part of the cause. I have had MCAS issues my whole life. I recently moved into a new home and I’m monitoring the changes in my health.
That's really tough situation. I am in financially dire straits but I fundraised to do mold avoidance. I wonder if you could do that? There are creative ways to do a sabbatical that would make it easier to do with a caregiver, like pick buildings that look promising in an area known for good outdoor air and camp on your balcony or the beach if you cant otherwise do it.

From what I am seeing from other patients I do not believe cci surgery will totally cure mold reactivity. Bc what we are reacting to is not just something harmless that the body is overreacting to, I think it is something that often initiates the original illness.

It's sad how mold avoidance is one of the treatments that's helped 5he most and is so hard to do financially.

I dont know where you live but maybe its possible to do smaller trips closer to your home in possibly promising areas? National forests or parks?

If you do do a sabbatical fundraiser people at MEAction may be willing to help promote it and maybe some people in the me/cfs/mold community will as well!

I am trying to get through to researchers to understand this connection so that we can have it accepted as a legitimate treatment. Imagine how wonderful it would be if the open medicine foundation built mold free trailers with good filtration systems, to take to the desert
 

Hip

Senior Member
Messages
17,793
POTS is right now defined as +30 average increase without any drop of BP.

That blood pressure requirement is new to me; when did they alter the diagnostic criteria of POTS to include that?

That would mean you now cannot be diagnosed with both POTS and orthostatic hypotension (OH) or neurally mediated hypotension (NMH) at the same time, because the last two involve a drop in BP.
 
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frozenborderline

Senior Member
Messages
4,405
That blood pressure requirement is new to me; when did they alter the diagnostic criteria of POTS to include that?

That would mean you now cannot be diagnoses with both POTS and orthostatic hypotension or neurally mediated hypotension at the same time.
I think its incorrect, many people have orthostatic hypotension and have pots. They are not mutually exclusive.
 

pibee

Senior Member
Messages
304
That blood pressure requirement is new to me; when did they alter the diagnostic criteria of POTS to include that?

That would mean you now cannot be diagnosed with both POTS and orthostatic hypotension (OH) or neurally mediated hypotension (NMH) at the same time, because the last two involve a drop in BP.

yes, that's true, ... of course there is not even very unique consensus... (example : some don't include 120 + in definition... ), but within first 3 minutes there shouldn't be significant drop in BP
and experienced ANS clinicians recognise NOH as rapid drop in BP, but there are some people who have initial (within first 15-30 seconds) drop of BP that causes reflexive tachycardia, which is not POTS, and such HR spike is not sustained. so IOH is seen only on tilt w finger BP monitor, i dont know how often they use other tilt tests for diagnosis. I know only 2 examples from Croatia and Serbia misdiagned as POTS by socalled experience ANS (neuro)cardiologist. Paradox one of these neurocardiologist failed to diagnose me even though I have so clear +50 HR sustained increase and asked him 3 times during tilt if it's POTS and even showed him all those antibodies.

Maybe overall these are small % of people diagnosed with POTS. We will see..

I guess you can read this if you haven't and want to know more
https://www.onlinecjc.ca/article/S0828-282X(19)31550-8/fulltext

Another problem that surfaced was that numerous patients who did not meet criteria for POTS would arrive at our clinics diagnosed with POTS. This might be because of a misunderstanding of the POTS criteria in the broader medical community. Another issue is that for a patient who is unwell, the diagnosis of POTS can provide hope and validation of illness. These include patients with severe symptoms of orthostatic intolerance, but who did not meet the excessive orthostatic tachycardia criterion. This group also includes patients who suffered from symptoms of orthostatic intolerance and from excessive orthostatic tachycardia, and who have a condition that precludes the diagnosis of POTS (eg, prolonged bedrest or medications that exacerbate orthostatic tachycardia)..
 
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