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issie

A different approach for MCAS and other illnesses

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I was sent a book of a different approach for MCAS and other illnesses.  It is very technical, but fascinating.   I have been off all my MCAS and POTS medicine for over a month now.  I don't have it completely figured out.  But making improvements.   

 

https://drive.google.com/file/d/0BxK4lGunsmzgTHBCeHJlY01jV1E/view

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It does, but not real specifically.  You can PM me and I can tell you more of what I'm doing.  I don't think they allow me to do that here.  There is a cream I got from Amazon.   It took some trial and error to figure out how to use it.  But I'm getting it sorted and having benefit.  

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Congratulations. It's great to hear that someone has been able to escape some of this viciousness and very encouraging for the rest of us.

Before I get ready to read 422 pages, are the general concepts applicable to POTS type symptoms or other forms of dysautonomia or just allergies/histamines? It just seems like quite a bit of time investment....which would certainly be worth it if there's an end benefit though. 

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I have HyperPOTS,  Ehlers Danlos, MCAS and a whole bunch of other autoimmune things and Hypogammaglobulinemia, FMS,  ME/CFS and  severe Mitochondria dysfunction.   I have in the past contributed on this site extensively and on another site with years of trying to find answers.  This all is in my family and my sister and I are and have been in a lot of studies.  

I'll warn, this book is very technical and would be considered controversial by Pharma.  I'm quite versed in medical things and I'm still not finished reading it.  But, I am in self experiment with its ideas and finding it helpful.  I've been off all my MCAS and POTS and pain medicines for almost 2 months now.  I'm in less pain than I was on them and and not any worse being off them.  Still tweaking, but feel encouraged.   

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4 minutes ago, issie said:

I have HyperPOTS,  Ehlers Danlos, MCAS and a whole bunch of other autoimmune things and Hypogammaglobulinemia, FMS,  ME/CFS and  severe Mitochondria dysfunction.   I have in the past contributed on this site extensively and on another site with years of trying to find answers.  This all is in my family and my sister and I are and have been in a lot of studies.  

I'll warn, this book is very technical and would be considered controversial by Pharma.  I'm quite versed in medical things and I'm still not finished reading it.  But, I am in self experiment with its ideas and finding it helpful.  I've been off all my MCAS and POTS and pain medicines for almost 2 months now.  I'm in less pain than I was on them and and not any worse being off them.  Still tweaking, but feel encouraged.   

You're speaking my language now. I've found alternative health practitioners to have been far more helpful than traditional specialists so far because they are more open to new ideas and try to account for the entire body, not just individual systems within it. I've become more versed in medical speak than I'd ever intended to be unfortunately. 

Again, amazing results so far and thanks so much for sharing. 

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I asked the guy who told me about this if I could list his post so that others could contact him.  He said that would be fine.  He also has a Twitter site with a whole lot of articles on there.  

 

Mast Cell - Histamine (Immunotherapy With Histamine) | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/threads/mast-cell-histamine-immunotherapy-with-histamine.6233/

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This article gives a good overview of the Histamine Receptors and what they do.  A sort of Summary/condensed version of the book.  You will note that Histamine is being used for ALS.  Also is being used for MS, leukemia,  cancer and other things.  

 

Histamine beyond its effects on allergy: Potential therapeutic benefits for the treatment of Amyotrophic Lateral Sclerosis (ALS).
 

www.sciencedirect.com

Histamine beyond its effects on allergy: Potential therapeutic benefits for the treatment of Amyotrophic Lateral Sclerosis (ALS)

ALS currently remains a challenge despite many efforts in performing successful clinical trials and formulating therapeutic solutions. By learning fro…
www.sciencedirect.com www.sciencedirect.com

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I haven't gotten very far in the book yet, but the new information here leaves a lot to unpack. 

I've always assumed histamine was the problem and now hearing it may be the solution is pretty radical at the very least and more than a bit to wrap my head around. 

As the book appears to be over 15 years old, I was going to ask if there have been any updates in the science since then, but the author still appears to be doubling down on his initial work very recently, which is good to know. 

The other thing, which is always a bit tricky, is his current standing in the medical community. He talks about being reprimanded and forbidden to use his findings in a therapeutic manner. While I believe big pharma often suppresses effective alternatives to expensive medications for cost and profit reasons and sometimes the more cost effective remedies have trouble getting studies funded (LDN immediately comes to mind), well...it's a little scary taking every outspoken doctor with an alternative idea at face value too. 

How do tell the difference between genuine suppression of powerful medical information or someone who's taking faulty and dangerous ideas too far? I know that people are often called crazy long before history reveals them to have actually been geniuses, but also, not every controversial idea turns out to be a stroke of genius.  

Unfortunately, I'm at a point in my health where I'm willing to accept some risk, but still want to be very careful not to make things worse. 

None the less, thank you for all this information and it's so exciting that you've seem to had powerful results with it so far. This all makes me somewhat hopeful at least. 

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He doesn't try to hide that Big Pharma doesn't like it.  He doesn't try to hide what he went through trying to get people to listen either.  That actually made me pay attention more.  

I'm one who questions EVERYTHING.  If you ask Mayo docs about me, they got really tired of my questions to them and insistence that certain things were at play.  I'm the one who got Mayo in AZ to look into MCAS in the first place.  I wouldn't let up as to it being connected to POTS.  Now all POTS people are tested for it there.  So I'm a sort of pioneer helping to make the path on this subject.  "But Issie said.....", Mayo heard that a lot.  Got to love them.....as they listened and looked into it.  

But, as all my old POTS buddies on here and elsewhere will attest to......I strongly question how POTS is managed by doctors.  I feel a lot of our symptoms are compensatory responses and  absolutely the lesser of the two evils and trying to right a wrong.  I tried anything and everything doctors gave me in the beginning of finally being DX.  And it all made me worse.  Now I manage that myself and pretty well with natural things.  Also tried to keep a positive attitude and not give in or give up.  I still have it and have since a child.  But I've had a very full life despite it.  

So when it comes to MCAS, never thought of it as a compensation.   But this has made me take a second look.  Why not, why couldnt it too being trying to correct the worst of two evils?  But to learn I was suppressing H2 with medicine and doing it to myself.  The one thing that needed to work......I was upset to say the least.  I had already started getting off my MCAS medicines as I felt they were affecting my cognitive function.  But I also was reacting to everything and they were not helping.  I was getting sicker.  My vitiligo was going wild and other autoimmune things were showing up. (I also had Lyme and CIRS.) I took it upon myself to seek a different approach to MCAS.  

One thing of benefit was a low histamine diet.  Changing diet was something only I had control over.  Was very necessary. Then I started using bee products for allergic responses.   And also enzymes with lutolin.   

Then......thankfully,  I paid attention when this guy posted this book.  He is a wealth of knowledge and eager to share.  So if you want to know more, I suggest contacting him.  He is wanting to spread awareness and was a MCAS suffer himself.  

Histamine is being used for other illnesses of serious concern and there is much printed peer reviewed articles showing it.  

I'm not sure if this is the whole picture, but likely a big part of the complex puzzle we all have.  I'm very hopeful.  It's a work in progress.  

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I often have similar struggles with doctors, but have maybe gone about things reverse from you. My mother has worked for chiropractors since the 80's so I went in fairly well versed in alternative approaches and initially resisted heavy use of antibiotics, steroids and pretty much anything that might have adverse long term effects. PCPs kept pushing the anti-anxiety meds. I always asked for natural solutions that might have similar effects. I would bring books to doctors appointments with me, which would frustrate some doctors even more. 

Recently, I've given in to trying anything they throw at me because alternative methods haven't worked and I absolutely need something to calm things at this point in my current state even if I intend for much shorter term use than the doctors would. I've also realized I probably have to go through all of their protocols even if I still don't buy in, in order to get them to eventually try something different when they run out of ideas. 

My PCP didn't even know what POTS was a few months back. I had to explain to him what the cardiologist and neurologist have diagnosed. I've been unsuccessful in getting anyone to seriously consider MCAS yet and feel it a victory when I can find someone that even knows what it is. The problem for me is that I've reached the end of the line in terms of doctors covered by insurance that I can physically travel to at this point. 

As far as diet goes, I've been mostly AIP Paleo for a few years with different modifications suggested by several practitioners and testing. I had gotten to a point where it felt like I was eating only lamb, broccoli, kale and apricots as "inoffensive" foods. I even had someone suggest that stuff like cinnamon, pumpkin, coconut, garlic, chicken and a few other things I was basically living off at that point were bad for my blood type or current microbiome composition after specific testing. I'd guess that my current diet is probably pretty close to low histamine, but I'm running out of things to further omit at this point.

I certainly see where your coming from. It seems we're of similar mind and your posts here have all been very encouraging. 

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@MTRJ75

I hear you.  We sure have an uphill climb and a need of awareness with our illnesses.  Thankfully they are becoming more known and there is more press.  But, still few new "tricks" to help us.  There are so many illnesses that they are finding dysautonomia and mast cell issues involved with.  I have been of the opinion that there is autoimmune issues and inflammation and that may be the "core" issues.  Get to the "core" of the problems and then the symptoms will fade away.  But we are all so complex and there are so many different puzzle pieces to discover.  There is no way possible to treat the masses all the same way because of this.  But just maybe we will find a "purple bandaid", to give more quality of life as we research and continue connecting the pieces.  

It appears this may be a big piece to this puzzle.  Let us hope so!!!!  

I'd like to hear how people do if they try this path.  So far, I'm encouraged.   

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I was just sent this.

 

This is the article that Ravikovitch tried to publish in the 90s about his treatment (it appears at the end of the book) and rejected by the well-known UK immunologist S.T. Holgate. It is a summary of the content of the book for those who do not feel like reading the entire book.

https://drive.google.com/open?id=1qkm0olLzL1XOBB6rte14eJdKR9HkxCj6

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On 11/28/2019 at 9:50 AM, issie said:

I was just sent this.

 

This is the article that Ravikovitch tried to publish in the 90s about his treatment (it appears at the end of the book) and rejected by the well-known UK immunologist S.T. Holgate. It is a summary of the content of the book for those who do not feel like reading the entire book.

https://drive.google.com/open?id=1qkm0olLzL1XOBB6rte14eJdKR9HkxCj6

Thanks for this. I've had issues reading the book on my ipad because I can't hold my place and have to start and scroll down from the beginning each time. 

If this helping to stop POTS and MCAS symptoms, it would seem to confirm the autoimmune component that's being discussed in another recent thread. At least in certain cases. 

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Trying to find another way to tame down these trigger happy, over responding mast cells......is the goal. I'm not having a huge success with the cream I'm trying now, but have another one ordered - with less ingredients. It's not a goal to add more histamine to the body. The goal is to stop so much over production of the body own mast cell degranulation. Trying to get the suppressor H2 and H3 to easier detect when it is there and maybe stop the so easily triggered mast cell response. Sort of an immunology type treatment.

It's still an ongoing experiment for me. Not there yet......
 
 

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