What disorder do we REALLY have?

[joejack102]

For over a decade, I've been "labeled" as POTS Syndrome, Mitral Valve Prolapse Syndrome, Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, Myalgic Encephalopathy, etc. The list goes on and on and on.......

What is the real underlying cause? I believe every single person on this entire website has the exact same medical condition (root cause), and we are being ignored by the mainstream medical, scientific, and pharmaceutical community.

Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?

 

[TiredBill]

I take it you were too young to have "yuppie flu?"

Bill

 

[justy]

For over a decade, I've been "labeled" as POTS Syndrome, Mitral Valve Prolapse Syndrome, Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, Myalgic Encephalopathy, etc. The list goes on and on and on.......

What is the real underlying cause? I believe every single person on this entire website has the exact same medical condition (root cause), and we are being ignored by the mainstream medical, scientific, and pharmaceutical community.

Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?

There are so many overlaps arent there?

I asked my MCAS Dr this exact question what is my primary illness and will we ever know. She said we would likely never know and the best hope for now is symptom relief. The sad things is the MCAS drugs (if i can tolerate them), dont touch the M.E symptoms.

DX with Severe M.E, EDS H, MCAS, MVP waiting on: POTS testing, autoimmune testing due to positive ANA.

 

[joejack102]

I also have a positive ANA test. Very interesting. I forgot to add that.

I have to say I am very angry at the medical community that we are being neglected! This is a very real disorder, and I do not accept the fact that no professionals can tell me what exactly is wrong with me, or what's wrong with us. The FIRST step to begin to raise awareness and find a cure for anything is to have a basic understanding of the root cause. I feel as clueless today as I was in 2004. We need to all join together and change that.

 

[keenly]

For over a decade, I've been "labeled" as POTS Syndrome, Mitral Valve Prolapse Syndrome, Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, Myalgic Encephalopathy, etc. The list goes on and on and on.......

What is the real underlying cause? I believe every single person on this entire website has the exact same medical condition (root cause), and we are being ignored by the mainstream medical, scientific, and pharmaceutical community.

Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?

Poor redox

 

[Gingergrrl]

I believe every single person on this entire website has the exact same medical condition (root cause)

That is so interesting and my feeling is the exact opposite (that just on this website alone, we have hundreds of different medical conditions with overlapping symptoms vs. just one). This is just my opinion of course!

I read about the root causes and triggers in people's intro threads and they are so varied. My three main triggers were a neurotoxic reaction to an antibiotic, followed by severe mono from EBV, followed by toxic mold exposure for 3 yrs in a prior rental.

Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?

I have MCAS (we believe triggered by mold/mycotoxin exposure) but I do not have Lyme.

 

[pattismith]

For over a decade, I've been "labeled" as POTS Syndrome, Mitral Valve Prolapse Syndrome, Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, Myalgic Encephalopathy, etc. The list goes on and on and on.......

What is the real underlying cause? I believe every single person on this entire website has the exact same medical condition (root cause), and we are being ignored by the mainstream medical, scientific, and pharmaceutical community.

Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?

Do you have all this? According to the docs I wisited, I am perfectly fine

What is a MCAD doctor, what test are they doing to diagnose this condition, is it reliable?

 

[joejack102]

Do you have all this? According to the docs I wisited, I am perfectly fine

I don't know what I have, but we all seem to be suffering from the exact same thing in my opinion. Doctors just give it different names. And nobody can tell us what's truly wrong with us and what caused it. I'm upset with the medical community that there isn't more awareness and that they cannot treat the root cause.

 

[Strawberry]

I also have a positive ANA test. Very interesting. I forgot to add that.

Let me guess.... Speckled pattern? That seems to be the most common for those of us with ANA.

 

[joejack102]

Let me guess.... Speckled pattern? That seems to be the most common for those of us with ANA.

ANA Titer Interp 1:80
ANA Pattern Speckled

Yep!

 

[Strawberry]

Lol I should have bet $$ on that answer! And yet Dr Edwards is constantly saying it doesn't mean anything definitive. I can't understand why, but no longer question it.

 

[joejack102]

See... We all have the SAME thing. And no professionals wants to help us. I feel like we only get these wacky pseudo-science people trying to get to us to try some wacky, unproven therapy all the time.

 

[Wishful]

The ones trying to get us on unproven therapy while not knowing what's actually going on in our bodies seem to be doing it for their benefit (money), not ours. I have more trust in the ones trying to figure out the biochemical mechanism of the disorder. If some are doing it for the hope of personal benefit, that's okay with me. Being rewarded for results is quite proper.

Maybe instead of contributing to a research project, we should contribute to a fund that awards researchers for making important discoveries and a big award for an effective treatment. That seems to be the way space development is going.

 

[Gingergrrl]

Let me guess.... Speckled pattern? That seems to be the most common for those of us with ANA.

My ANA is speckled pattern, too, (1:160) and I do believe this is relevant for us in the autoimmune group but many people on here have a negative ANA for whatever it's worth?

 

[Strawberry]

See... We all have the SAME thing.

Except that the percentage in this forum with +ANA is pretty low. I'd expect less than 10%. But most of the +ANA are speckled pattern, for what ever the excuse.

 

[Alvin2]

Its unlikely we all have the same disease because some have been diagnosed with other things (mitochondrial disorder and ALS come to mind) and we are a wastebasket diagnosis (in addition to a diagnosis without a test, a diagnosis of exclusion which can mean bad exclusions). That said there is a CFS and likely ME, but a disease mechanism for either has not yet been elucidated.

 

[perrier]

Its unlikely we all have the same disease because some have been diagnosed with other things (mitochondrial disorder and ALS come to mind) and we are a wastebasket diagnosis (in addition to a diagnosis without a test, a diagnosis of exclusion which can mean bad exclusions). That said there is a CFS and likely ME, but a disease mechanism for either has not yet been elucidated.

I recently chatted with a doctor who spent his life on CFS and Lyme, and he said he doesn't think PEM is exclusive to ME. In other words, other conditions provoke it too.

But from watching PEM closely, it seems a particular aspect of this illness. I've asked folks with other conditions,severe ones,even MS,and they don't have PEM

 

[Alvin2]

I recently chatted with a doctor who spent his life on CFS and Lyme, and he said he doesn't think PEM is exclusive to ME. In other words, other conditions provoke it too.

But from watching PEM closely, it seems a particular aspect of this illness. I've asked folks with other conditions,severe ones,even MS,and they don't have PEM

Interesting. I've come to believe PEM is the disease mechanism adjusting (down) our energy level each time we over do it.

 

[Seven7]

Every new year I collect a new diagnosis of Autoimmune something.

 

[Galixie]

Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?

Not me. I don't have either of those actually.

My ANA is speckled pattern, too, (1:160) and I do believe this is relevant for us in the autoimmune group but many people on here have a negative ANA for whatever it's worth?

My ANA always comes back negative, but I've definitely got some type of immune dysfunction (high EBV antibodies but no virus detected). I wonder if the positive ANA people have an autoimmune disease and those of us with negative ANA have an autoinflammatory disease?

I lean toward the theory of there being multiple diseases lumped in the CFS/ME category.

Also, since there are no scientifically proven treatments yet, all of the existing approaches could be described as wacky and unproven. Testing things is how we find new things that work. At least we have a little more say in what we try than patients used to have. The breakthrough that explained why pernicious anemia patients couldn't absorb B12 came because a doctor experimented to prove that intrinsic factor exists. His experiment involved eating liver, throwing it back up, and feeding that to his patients (who did not know what they were getting). The patients were able to absorb the B12 from the regurgitated liver because the doctor's intrinsic factor was part of the mix. The experiment would be considered unethical today, but it was considered a breakthrough at the time.