Author Topic: My Theory on Benzo withdrawal and connections to MCAS and POTS/DYSAUTOMNIA  (Read 2420 times)

[Buddie]

What test did you have for the MCAS?  What is it anyway and what is going on inside your body?  Is it autoimmune?  What are your symptoms?

The tests for MCAS are urine and plasma histamine levels. Urine leukotriene and prostaglandin, as well as plasma tryptase levels. The diagnosis of MCAS relies on your tryptase levels. If your tryptase levels are elevated. Or if you have three tryptase levels taken. So the first one would be when you are normal and not in a flare. That would be your baseline tryptase. Then you would get two additional tryptase level draws when in a flare. If they are elevated from baseline then you have your diagnosis. MCAS is all around tryptase levels.

Tryptase is often useless and is not required for MCAS diagnosis which can be done via 24 hour urine to check prostoglandins.
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[Buddie]

I can’t take any of the things that would treat it anyway because have horrific reaction to all of them.
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[Buddie]

What test did you have for the MCAS?  What is it anyway and what is going on inside your body?  Is it autoimmune?  What are your symptoms?

The tests for MCAS are urine and plasma histamine levels. Urine leukotriene and prostaglandin, as well as plasma tryptase levels. The diagnosis of MCAS relies on your tryptase levels. If your tryptase levels are elevated. Or if you have three tryptase levels taken. So the first one would be when you are normal and not in a flare. That would be your baseline tryptase. Then you would get two additional tryptase level draws when in a flare. If they are elevated from baseline then you have your diagnosis. MCAS is all around tryptase levels.

Tryptase is often useless and is not required for MCAS diagnosis which can be done via 24 hour urine to check prostoglandins.

Can you offer me a medical citation for your claim that tryptase is useless in MCAS?

“ Tryptase, a neutral protease selectively concentrated in the secretory granules of human mast cells (but not basophils), is released by mast cells together with histamine and serves as a marker of mast-cell activation”
https://pubmed.ncbi.nlm.nih.gov/3295549/

Tryptase HAS to be elevated even if just from baseline to get a diagnosis of MCAS. Prostaglandins are released during inflammation. 

“  The most specific and reliable marker of systemic MC activation is an acute and substantial event-related (transient) increase in the serum tryptase level over the individual's baseline value. ”
https://pubmed.ncbi.nlm.nih.gov/31256161/

If you went to a Hopkins facility to be treated for mast cell activation syndrome with only high prostaglandins. They’d turn you away. The rule is tryptase elevated from baseline or elevated from normal levels.
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[Buddie]

My endo says it is because it is difficult to test Tryptase & just because it is negative dirs not mean there is no MCAS.
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[Buddie]

“ Elevated tryptase levels are found in subgroups of patients with mastocytosis, myelodysplastic syndrome, myeloproliferative neoplasm, acute myeloid leukemia, chronic myeloid leukemia (CML) and chronic eosinophilic leukemia (CEL). In these patients, the tryptase level is of diagnostic and/or prognostic significance”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4603354/

“ This test measures total tryptase (alpha and beta tryptase). Tryptase is the most abundant protein component of human mast cell secretory granules.1,2 Serum levels generally reflect the extent of mast cell activation either by IgE- or non-IgE-mediated mechanisms. Basophils also produce small amounts of tryptase.”

https://www.labcorp.com/tests/004280/tryptase

It’s a simple blood test, that’s highly sensitive. And VERY accurate. An allergist treats for MCAS not an endocrinologist.

I do believe in the early days, the significance of tryptase in MCAS was not clear. With the abundance of research done since then, it is now considered the only true diagnostic available resource. Please citations listed above, (on my previous post as well).

 




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[Buddie]

I started this thread to figure out my own symptoms and the possibilities which may have started it all. I am posting here now to refute my claim that Benzo withdrawal was the reason behind MY symptoms.

Please let me explain, I do believe my original post has some merit. The medical citations make a strong connection. I personally though can not finish out this journey or connection with it.

I was recently diagnosed with Hyper-mobile Ehlers Danlos Syndrome. People with hyper mobile Ehlers Danlos Syndrome 90% of the time, due to it being a connective tissue disorder and there being connective tissues in the brain, these patients end up with a trifecta of EDS, POTS, and MCAS.

With my recent diagnosis of hyper mobile Ehlers Danlos Syndrome. I can not unbiasedly further this debate. From my understanding on my diagnosis the MAIN contribution to my POTS and MCAS is my Hyper-Mobile Ehlers Danlos Syndrome.

Having said that, I do think benzo withdrawal exasperated these underlying co- morbidities of EDS. (Benzos are mast cell stabilizers, amazing muscle relaxants, and calm the Alpha1 Adrenergic receptors stimulated in POTS) I firmly believe FOR ME, the benzos masked the diagnostic properties of my existing conditions and intensified them when removed)  But for myself I can not honestly state that it caused them. I do encourage people on here without a connective tissue disorder to continue to do whatever they can, and continue to research what ever medical citations and studies available to help out and support others here with these underlying issues.

I however, must relate my medical conditions, backed by scientific facts, and that is that my POTS and MCAS are simply co-morbidities of a previous undiagnosed genetic DNA mutation off connective tissue that is INHERITED (passed down from parental genetics and not caused by withdrawal) . 

Here is my citation straight from the Ehlers Danlos Society.

“ Researchers have found a genetic mutation that links all three conditions”
https://www.ehlers-danlos.com/one-gene-mutation-links-three-mysterious-debilitating-diseases/

Apologies to anyone who thinks the original post is now a betrayal. It was never my intent as I was unaware of my inherited condition.

To others whom think it was a good start to find some connections and medical basis…..  I urge and encourage you to continue in the search.

This does not mean that I will no longer continue sharing my experiences. I will.  I will also continue to provide medical citations and documentation. I just can not continue this specific journey to related these conditions to withdrawals, as it no longer relates and I can not be included in a controlled study on this. I am still willing to help and reach out to anyone….. 

May the force be with you all. 😊
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[Buddie]

“ Elevated tryptase levels are found in subgroups of patients with mastocytosis, myelodysplastic syndrome, myeloproliferative neoplasm, acute myeloid leukemia, chronic myeloid leukemia (CML) and chronic eosinophilic leukemia (CEL). In these patients, the tryptase level is of diagnostic and/or prognostic significance”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4603354/

“ This test measures total tryptase (alpha and beta tryptase). Tryptase is the most abundant protein component of human mast cell secretory granules.1,2 Serum levels generally reflect the extent of mast cell activation either by IgE- or non-IgE-mediated mechanisms. Basophils also produce small amounts of tryptase.”

https://www.labcorp.com/tests/004280/tryptase

It’s a simple blood test, that’s highly sensitive. And VERY accurate. An allergist treats for MCAS not an endocrinologist.

I do believe in the early days, the significance of tryptase in MCAS was not clear. With the abundance of research done since then, it is now considered the only true diagnostic available resource. Please citations listed above, (on my previous post as well).

 


At just after 33mins here he talks about it not only being Tryptase.
https://youtu.be/2mIzE2X9OJk

MCAS is not allergy. My private endo is one of the main ppl in the U.K. treating MCAS, MCS etc.
The most famous person who does it here is also an endo.

Given how many ppl develop this on WD it would be surprising if they all have EDS.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

“ Elevated tryptase levels are found in subgroups of patients with mastocytosis, myelodysplastic syndrome, myeloproliferative neoplasm, acute myeloid leukemia, chronic myeloid leukemia (CML) and chronic eosinophilic leukemia (CEL). In these patients, the tryptase level is of diagnostic and/or prognostic significance”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4603354/

“ This test measures total tryptase (alpha and beta tryptase). Tryptase is the most abundant protein component of human mast cell secretory granules.1,2 Serum levels generally reflect the extent of mast cell activation either by IgE- or non-IgE-mediated mechanisms. Basophils also produce small amounts of tryptase.”

https://www.labcorp.com/tests/004280/tryptase

It’s a simple blood test, that’s highly sensitive. And VERY accurate. An allergist treats for MCAS not an endocrinologist.

I do believe in the early days, the significance of tryptase in MCAS was not clear. With the abundance of research done since then, it is now considered the only true diagnostic available resource. Please citations listed above, (on my previous post as well).

 


At just after 33mins here he talks about it not only being Tryptase.
https://youtu.be/2mIzE2X9OJk

MCAS is not allergy. My private endo is one of the main ppl in the U.K. treating MCAS, MCS etc.
The most famous person who does it here is also an endo.

Given how many ppl develop this on WD it would be surprising if they all have EDS.

At 4:22 he explains “pentad super syndrome”. All being displaced by GENETIC triggers. Meaning a genetic mutation. You just proved yourself that you’re issues come from a GENETIC mutation and not benzo withdrawal. Benzodiazepines do not alter your genetic DNA to cause these mutations.

In my opinion you are dangerously spreading propaganda by claiming that withdrawal has caused all of this when you clearly have a genetic DNA mutation. You are unnecessarily instilling fear in people that do not have the same genetic mutations as you.

It is hard to accept that you have a genetic DNA mutation that causes a wide variety of other issues.  I get it. I’m right there in that same place right now. BUT, the only way to move on is to accept it and push forward.

I right now am trying to accept that I will never be the same. But it’s from the Ehlers Danlos Syndrome, that is GENETIC and not from benzo withdrawal.

It’s normal to try to blame something. But in this case, in your case and in mine. It’s the Ehlers Danlos and a DNA mutation.
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[Buddie]

Not everyone with MCAS has EDS.
I happen to have the whole Pentad.
A lot of ppl don’t.
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[Buddie]

Not everyone with MCAS has EDS.
I happen to have the whole Pentad.
A lot of ppl don’t.

I never stated EVERYONE with MCAS has to have EDS.  What I stated was if you have EDS your POTS and MCAS is stemming from the EDS.  There is a huge difference. I am aware people can just simply have MCAS or even POTS without any other underlying condition.

I am not denying that you have the whole Pentad. What I am saying is you are incorrectly blaming benzo withdrawal for your Pentad. Your Pentad is caused by your genetic mutations!  Even the YouTube video you posted clearly states the Pentad is caused by genetic mutations! 

There is no doubt that benzo withdrawal exacerbated your symptoms and made them extremely more noticeable.  It 100% did that for me as well. But it wasn’t the withdrawal that created them!  They were already there, just not so noticeable.

That is also why I encouraged others without genetic mutations like you and I have, to continue with what I started. If they feel that I was on to something I encourage them to finish where I left off. You and I have genetic mutations causing our issues, that symptoms were exacerbated by benzo withdrawal. It did not cause them for us.
« Last Edit: June 20, 2021, 08:02:18 pm by [Buddie] »
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