Jump to content

Mast Cell Activation


[Aj...]

Recommended Posts

As far as I am aware nobody has done specific research on mast cell activation in benzodiazepine withdrawal but a lot of us develop sensitivities to foods, scents, meds etc on withdrawal which is, according to my endocrinologist, mast cell activation.

 

Benzodiazepines are known to stabilise Mast Cells and given to who already have mast cell problems.

“Abstract. The activation of adenosine A(2B) receptors in human mast cells causes pro-inflammatory responses such as the secretion of interleukin-8. There is evidence for an inhibitory effect of benzodiazepines on mast cell mediated symptoms in patients with systemic mast cell activation disease.” https://www.researchgate.net/publication/233983858_Inhibitory_effects_of_benzodiazepines_on_the_adenosine_A2B_receptor_mediated_secretion_of_interleukin-8_in_human_mast_cells

 

There are many papers on this. Google it.

 

Mast cells contain GABA receptors.

 

https://pubmed.ncbi.nlm.nih.gov/23352970/

 

I am aware of several ppl who have had 24 hour histamine tests done due to withdrawal and have been positive.

 

Severe mast cell activation can cause quite serious problems. The symptom list has considerable overlap with many of the physical symptoms people get in withdrawal. It might explain things like exercise causing ramped up symptoms since exercise increases histamine levels on the body as does muscle compression etc.

 

https://www.mastocytosis.ca/en/diagnosis/signs-symptoms - scroll down for the symptom list.

 

Histamine & Mast Cells are also linked to anxiety: https://www.psychologytoday.com/gb/blog/holistic-psychiatry/201907/mast-cell-activation-syndrome-alert-psychiatrists

 

They can cause sleep problems because they have a circadian rhythm.

 

Basically I personally think mast cell activation is a much better explanation of many withdrawal symptoms than GABA receptors etc which apparently upregulate very quickly if you look at the neurobiology of these things.

 

Mast cells are are definitely a better explanation for benzo belly etc. New research says they are the cause of IBS.

 

So, if you are having bad reactions to food, sunlight, meds etc and it doesn’t go away it may be worth talking to an immunologist and getting histamine testing done or at least trying to eat a low histamine diet.

 

BenzoHouse on YouTube has posted some videos about it:

 

edit: title changed to conform to forum policy

Link to comment
Share on other sites

  • Replies 56
  • Created
  • Last Reply

Top Posters In This Topic

  • [Aj...]

    14

  • [Ca...]

    12

  • [Ma...]

    10

  • [Tr...]

    3

Top Posters In This Topic

Has your endocrinologist ever made tests to prove that you have a mast cell activation disorder? Or a biopsy from an organ or bone?

How does he know that it is really a mast cell activation disorder? The symptoms of histamine intolerance, allergies, oversensitivity and mast cell deceases of all kind are not quiet identical, but the treatment is really different. Same for the diet. Low histamine diet for mast cell activation disorder does not help much.

Anti-histamines do not help for mast cell issues either. But I am curious - which meds would he recommend or has he tested with you?

Inhibitors/leukotriene receptor antagonists/vitamin C infusions..?

 

(I had it. Blood markers were found etc.  - and now I am healed.)

 

You wrote it makes sense to get an histamine test to find out if you have problems with the mast cells - and this is not correct.

 

 

For people who want to read about the difference and more about mast cell deseases, here is a self-help forum from Switzerland:

https://www.mastzellaktivierung.info/en/introduction.html

(English version)

And the same guy has also found a forum about histamine intolerance, so you get help no matter in which boat you are:-)

Link to comment
Share on other sites

Just a friendly question. What's the purpose of all this information about mast cell activation in almost every post? I'm just getting even more confused.
Link to comment
Share on other sites

Just a friendly question. What's the purpose of all this information about mast cell activation in almost every post? I'm just getting even more confused.

 

I think she wants to create awareness or so. Don't be scared. I have had withdrawal and mast cell disease and it felt different (for me).

Greetings from Germany ;D

Link to comment
Share on other sites

Just a friendly question. What's the purpose of all this information about mast cell activation in almost every post? I'm just getting even more confused.

 

I think she wants to create awareness or so. Don't be scared. I have had withdrawal and mast cell disease and it felt different (for me).

Greetings from Germany ;D

 

My endo has said thinks it is mast cells (mastocytosis) I am waiting to hear if GP can arrange tests. There is a list of them including 24 hour histamine, DAO, Tryptase etc.

He has said I might need bone marrow biopsy.

 

He has said he would usually prescribe antihistamines and cromolyn for Mast Cell stuff so I have no idea why you think antihistamines would not help. I have horrible reaction to them so can’t take them.

He has said there are other options of Cromolyn doesn’t work.

 

He is also going to look at methylation etc

 

What was the difference for you?

The reaction I am having is extreme muscle weakness/collapsing, heat along spine, sweating, malaisexetc worhon a minute of eating anything, using soap etc.

 

 

 

Link to comment
Share on other sites

Just a friendly question. What's the purpose of all this information about mast cell activation in almost every post? I'm just getting even more confused.

 

I think she wants to create awareness or so. Don't be scared. I have had withdrawal and mast cell disease and it felt different (for me).

Greetings from Germany ;D

 

My endo has said thinks it is mast cells (mastocytosis) I am waiting to hear if GP can arrange tests. There is a list of them including 24 hour histamine, DAO, Tryptase etc.

He has said I might need bone marrow biopsy.

 

He has said he would usually prescribe antihistamines and cromolyn for Mast Cell stuff so I have no idea why you think antihistamines would not help. I have horrible reaction to them so can’t take them.

He has said there are other options of Cromolyn doesn’t work.

 

He is also going to look at methylation etc

 

What was the difference for you?

The reaction I am having is extreme muscle weakness/collapsing, heat along spine, sweating, malaisexetc worhon a minute of eating anything, using soap etc.

 

Does he think its a mastocytosis or mast cell activation disorder, Ajusta?

However, you might also get these things checked since it would help to find out what exactly is going on and which meds can be used:

- blood test (DNA-Test): Let them check all the detox processes, Process 1 and 2. 2 ist  glutathiontransferase, and among the process one there are several. You could do that, because if you have a genetic defect here this is an explanation why your body cannot handle all the meds, and other stuff, because you just lack the enzymes which are needed to detox. Then, the body has to store all the toxins in the organs. If you get diagnosed with such a defect, the doctors would know they are not allowed to give you certain meds and you could handle the hole symptoms better. I have a problem in process number 2 for example, thats the process for toxins of the environment which cannot be released over the kidney, so I have to be careful with my kidney function and have to avoid any toxins like smells, chemicals and so on. This can actually be a reason why your mast cells could walk around in your body and make trouble.

- if you have one specific organ in the body or body part which causes a lot of trouble, try to get a biopsy right from this area. If you are lucky, they can find mast cells there. Regarding the shape of the mast cells they can then see in which stage the desease is.

- has he checked the so called triptase in your blood yet? If he wants to do that, run the test when you feel very bad. Then the changes the level can be found is much higher than in times you dont feel as bad.

 

Since the cells do not act on full speed every day the tests all have to be done in a period of high alert as I call it. When you feel like a "wave" is coming, then get the bloodwork done or the biopsy - not on days you feel okey. I know its hard but the chance you are misdiagnosed because they just dont pick the right time OR spot sadly is still given.

 

Have you checked out the link to the forum I put into the other post? They offer a PDF with all treatments that exist and also a list of meds with pro/cons. I think one has to become a member, but I payed about 20 Euro only for a hole year (I have downloaded all information and PDFS they offered but its in German - they also provide everything in English..) - maybe its a good option for you to gain more information? The author/owner of the site is also very well informed about histamine diseases and can cleary describe the differences and options for treatments.

 

 

Link to comment
Share on other sites

For everyone reading about mast cells - do not be scared. There has not been much research yet and please keep in mind that they always start with the worst cases! The body CAN calm down and mast cells, even when the amount of them has risen, can "rest/fall asleep" and you can live with that if you know how to handle it. I had so bad results and read a lot and in the end thought this is the end, - and then, a year later, my mast cell activation was so low that they could not measure it anymore - and this fits with my feeling, I feel so much better and there is a difference between having a mast cell reaction or a simple allergic reaction. So dont think mast cells are the devil inside your body or so. They have a role and when they over-react they do that because they think they need to protect the body and get rid of something. Mast cells are the ones reacting when a bee sticks you for example, and reduce the amount of toxin.

 

I can now see them as little cleaning ladies, who have a tendency to react hysterically in case their workload is too high. I know I have to keep an eye on them but I do not fear them anymore.

 

Ajusta, I wish you the best and that you will find a treatment for your special mast cell problem.

Link to comment
Share on other sites

For everyone reading about mast cells - do not be scared. There has not been much research yet and please keep in mind that they always start with the worst cases! The body CAN calm down and mast cells, even when the amount of them has risen, can "rest/fall asleep" and you can live with that if you know how to handle it. I had so bad results and read a lot and in the end thought this is the end, - and then, a year later, my mast cell activation was so low that they could not measure it anymore - and this fits with my feeling, I feel so much better and there is a difference between having a mast cell reaction or a simple allergic reaction. So dont think mast cells are the devil inside your body or so. They have a role and when they over-react they do that because they think they need to protect the body and get rid of something. Mast cells are the ones reacting when a bee sticks you for example, and reduce the amount of toxin.

 

I can now see them as little cleaning ladies, who have a tendency to react hysterically in case their workload is too high. I know I have to keep an eye on them but I do not fear them anymore.

 

Ajusta, I wish you the best and that you will find a treatment for your special mast cell problem.

 

Absolutely. Does it not make perfect sense that mast cell issues aren’t even that unique a problem in w/d? It seems logically feasible, entirely!

 

Thank you for speaking up Ajusta. I find it amazing how freaked out people get about simple logic in biology/physiology. Sigh. One set of reactionary symptoms that theoretically help explain the horrendous issues of inflammatory response(s) we have, or at least form a sound hypothetical piece of the puzzle.

 

The theory seems solid to me personally. I can confidently say this as an unlicensed, lifelong student of anatomy, biology and science. It isn’t a stretch and one does not need a degree to see it.

 

🌸Mercy.

Link to comment
Share on other sites

Well there have been a couple of recent thoughts, ideas, or “just gunna say its” coming out of this corner that Iv thought quite worth exploring a bit..

-Note the lack of smart comments coming from this little Vegemite.. (Yes there were reasons for those across multiple threads and time, -whateva, probs not my best me..)

 

At least these things stand up to my first check box, -Do the ideas still stand plausible across a range of DODs (Drugs of Dependance) for the long term symptoms/damage that can present..

 

Hell, they even make it past my 2nd check box, -as to the range of SX/damage that presents...

-And im too brain fried to work out the 3rd.. :( -Something about “pre-existing, or original ailment/s”..

 

A very personal thought is that we aint gunna make much progress within the bounds of just gabba/glutimate, and asking for established scientific verification outside of that theory... -Well it just isnt available, hence our problem..

To be clear(ish) Im talking about the long term deep or “protracted” damage that isnt such a great fit for the term “Withdrawal Symptoms” that we expect for a few weeks or even months following a significant reduction or cessation.. I have no problem with gabba/glutimate in the shorter term (WD SX) sense though, but perhaps not in isolation for the majority of those that we tend to see on BB for the longer term, -either slow tapering or long since jumped..

 

Now a question..?? If I had a little common spider bite (yes I caught the bugger) that would normally just be itchy and a bit inflamed for a few days, but is now (in discontinuation) a much larger problem and taking months to resolve, though not infected, -more like the irritant is spreading because the body wont assimilate it or break it down, -would that fall under a potential Mast Cell issue..??

Im a bit lost on this.. -Dr says its infected, without even seeing it, but that doesnt fit.. A drawing ointment is doing wonders though..

-Im all good, its nearly gone now, -So just theoretically as to Mast Cell.. (to avoid prescriptiveness issues..)

 

Iv also developed something Id call “lymph gland cystitis”.. Yuck..!! But thats a whole other story.. :(

-I dont like Dr Google’s thoughts on that one.. -Head in sand sounds better for now.. :( Probs a biopsy when I see Dr Dearest..

 

The more I know, the less I know I know.. :(

 

:)

 

Link to comment
Share on other sites

I repeat: There are blood tests to diagnose mast cell diseases. Followed by biopsy and other reliable diagnostic tests.

 

If you want to know if you suffer from a mast cell disease find an expert for it, let him or her run these tests and then you know.

 

 

Link to comment
Share on other sites

Yeah, Perhaps a spleen biopsy would give good results like I read..??

I wonder if they do mail order bloods and biopsies for it here.. -Or maybe next time im out jogging ill duck into the city and get it done.. -Probs easier than getting some tentative and preliminary thoughts online from those already discussing it..

Cheers, thanks a tonne..

:)

 

Link to comment
Share on other sites

[17...]
been reading this post as I am suffering from very bad sensitivities to food and chemicals. The thing is, isnt this a sxs of wd just as insomnia or anxiety?  Ive posted in forums asking if people healed from this issue and had alot of comments from people that said they did. I spoke to Baylissa about this as well asking her if this will go and she said yes, if you didnt have it before wd. She aslo said she had a client that had it so bad they should have been put in a bubble, and that they did heal from it and is completely fine now. So Im not sure why a diagnosis of MCAS or histamine intolerance does any good, just like getting a diagnosis of insomnia or anxiety wouldn't be either. i mean I get it if you can handle drugs or supplements that may ease this sxs, then sure, but if your very very sensitive you wont be able to do that, so I guess Im asking then what's the point of getting a diagnosis?  Lots and lots of people have this issue in wd and I would no doubt say it is fairly common just in different degrees of severity. Im not not saying a diagnosis might make someone feel better Im just asking out loud my thoughts.......
Link to comment
Share on other sites

been reading this post as I am suffering from very bad sensitivities to food and chemicals. The thing is, isnt this a sxs of wd just as insomnia or anxiety?  Ive posted in forums asking if people healed from this issue and had alot of comments from people that said they did. I spoke to Baylissa about this as well asking her if this will go and she said yes, if you didnt have it before wd. She aslo said she had a client that had it so bad they should have been put in a bubble, and that they did heal from it and is completely fine now. So Im not sure why a diagnosis of MCAS or histamine intolerance does any good, just like getting a diagnosis of insomnia or anxiety wouldn't be either. i mean I get it if you can handle drugs or supplements that may ease this sxs, then sure, but if your very very sensitive you wont be able to do that, so I guess Im asking then what's the point of getting a diagnosis?  Lots and lots of people have this issue in wd and I would no doubt say it is fairly common just in different degrees of severity. Im not not saying a diagnosis might make someone feel better Im just asking out loud my thoughts.......

 

My answer is meant for all kind of symptoms or deseases which might follow after the usage of benzos:

It is good to know with what you are dealing.

If you have waited for some time and it did not get better it is wise to get tested, and then you have access to more options for treatment and how to handle it.

It s the same with tinitus, spasms or whatever. If you can get help, support and knowledge, it can be a good idea to ask experts and in some cases this is very necessary. I think of the buddies with heart problems in withdrawal, this can become very dangerous, and no matter if the reason for it was withdrawal, or an underlying condition or whatever - there is a treatment for it and it is good to know what's going on to prevent more damages and to be able to get the treatments you need, be it a physical therapist, the chance to apply for disability (financial reasons) or just an explanation for what is going on. I would NEVEr just listen to people on the internet - I say, if you suffer a long time from something or think you cannot hold on, a checkup can help a lot. And even when you go home with no results, - then you can calm down and telling you it is just withdrawal. But just waiting out can be dangerous and I personally had a lot of appointments without results, - but also a lot of important appointments and checks for which I am very thankful.

Link to comment
Share on other sites

[17...]

[quote author=Sunflowermh

 

My answer is meant for all kind of symptoms or deseases which might follow after the usage of benzos:

It is good to know with what you are dealing.

If you have waited for some time and it did not get better it is wise to get tested, and then you have access to more options for treatment and how to handle it.

It s the same with tinitus, spasms or whatever. If you can get help, support and knowledge, it can be a good idea to ask experts and in some cases this is very necessary. I think of the buddies with heart problems in withdrawal, this can become very dangerous, and no matter if the reason for it was withdrawal, or an underlying condition or whatever - there is a treatment for it and it is good to know what's going on to prevent more damages and to be able to get the treatments you need, be it a physical therapist, the chance to apply for disability (financial reasons) or just an explanation for what is going on. I would NEVEr just listen to people on the internet - I say, if you suffer a long time from something or think you cannot hold on, a checkup can help a lot. And even when you go home with no results, - then you can calm down and telling you it is just withdrawal. But just waiting out can be dangerous and I personally had a lot of appointments without results, - but also a lot of important appointments and checks for which I am very thankful.

 

 

 

Yeah Marigold, I completely agree with you, its just that like I said if you are too sensitive and can't handle anything to treat these diagnosis (which aren't truly diagnosis if its caused by wd ) then what is the point, unless it just makes you feel better to have a diagnosis. Although for some people this could scare them more knowing they can't do anything about it. For people who aren't that sensitive then sure go ahead and take something if it is helping the "diagnosis", but then again I know I've read where antihistamines can cause dependency as well so then your now putting your body and cns through another hurdle to cross down the road (for some people). Im only replying to this post in reference to the original question MCAS, the heart issues and other organ or body ailments are of another subject. I just know all the things they use for MCAS and histamine  intolerance are pretty much strong antihistamines or mast cell stabilizers, or there is herbs such as quercetin and vitamin C, again all great if you can tolerate them but usually people with extreme MCAS from benzo wd cannot. Getting the results for MCAS is no easy task and a bit invasive so seems like a harsh journey for just a "diagnosis". If it were me before getting tested knowing what they use to treat anyway,  I would try the herbs first just to see if A. I could handle them, then B. See if they make a difference. If your good there then you probably could handle the pharmaceuticals they use, so then maybe getting tested would be worth it. My main point though is that you would need to know going in you don't actually have MCAS, its just a temporary response to an over reactive and sensitive nervous system releasing msst cells at an alarming rate. It will calm down once you heal and your cns calms down. If your going to get tested then its strictly to try to get the sxs to be more tolerated by the things they recommemd. I just hate that these terms get thrown around and make people think they actually do now have a new disease. Its just like anxiety, insomnia, nerve pain, etc. Its not a new ailment, its a sxs of wd. Unless of course you had it before wd (im strictly talking about MCAS and histamine intolerance, nothing else).

 

Link to comment
Share on other sites

[quote author=Sunflowermh

 

My answer is meant for all kind of symptoms or deseases which might follow after the usage of benzos:

It is good to know with what you are dealing.

If you have waited for some time and it did not get better it is wise to get tested, and then you have access to more options for treatment and how to handle it.

It s the same with tinitus, spasms or whatever. If you can get help, support and knowledge, it can be a good idea to ask experts and in some cases this is very necessary. I think of the buddies with heart problems in withdrawal, this can become very dangerous, and no matter if the reason for it was withdrawal, or an underlying condition or whatever - there is a treatment for it and it is good to know what's going on to prevent more damages and to be able to get the treatments you need, be it a physical therapist, the chance to apply for disability (financial reasons) or just an explanation for what is going on. I would NEVEr just listen to people on the internet - I say, if you suffer a long time from something or think you cannot hold on, a checkup can help a lot. And even when you go home with no results, - then you can calm down and telling you it is just withdrawal. But just waiting out can be dangerous and I personally had a lot of appointments without results, - but also a lot of important appointments and checks for which I am very thankful.

 

 

 

Yeah Marigold, I completely agree with you, its just that like I said if you are too sensitive and can't handle anything to treat these diagnosis (which aren't truly diagnosis if its caused by wd ) then what is the point, unless it just makes you feel better to have a diagnosis. Although for some people this could scare them more knowing they can't do anything about it. For people who aren't that sensitive then sure go ahead and take something if it is helping the "diagnosis", but then again I know I've read where antihistamines can cause dependency as well so then your now putting your body and cns through another hurdle to cross down the road (for some people). Im only replying to this post in reference to the original question MCAS, the heart issues and other organ or body ailments are of another subject. I just know all the things they use for MCAS and histamine  intolerance are pretty much strong antihistamines or mast cell stabilizers, or there is herbs such as quercetin and vitamin C, again all great if you can tolerate them but usually people with extreme MCAS from benzo wd cannot.

Getting the results for MCAS is no easy task and a bit invasive so seems like a harsh journey for just a "diagnosis". If it were me before getting tested knowing what they use to treat anyway,  I would try the herbs first just to see if A. I could handle them, then B. See if they make a difference. If your good there then you probably could handle the pharmaceuticals they use, so then maybe getting tested would be worth it. My main point though is that you would need to know going in you don't actually have MCAS, its just a temporary response to an over reactive and sensitive nervous system releasing msst cells at an alarming rate. It will calm down once you heal and your cns calms down. If your going to get tested then its strictly to try to get the sxs to be more tolerated by the things they recommemd. I just hate that these terms get thrown around and make people think they actually do now have a new disease. Its just like anxiety, insomnia, nerve pain, etc. Its not a new ailment, its a sxs of wd. Unless of course you had it before wd (im strictly talking about MCAS and histamine intolerance, nothing else).

 

no! you did not understand at all what I meant. Mast cell disease would always be a true diagnosis no matter if done in withdrawal or not in withdrawal. A heart attack is always true no matter if in withdrawal or not, same for seizures or strokes - which can also happen no matter in or out of withdrawal.

A true mast cell disease should be diagnosed since it can be the reason for following damages like osteoporosis and skin diseases and if you are a woman who wants to have children further questions will come up.

 

And this will not calm down as soon as your CNS calms down. This is not a valid information. Even a histamine intolerance may persist after withdrawal.

 

We should not fall into any black/white pattern. you cannot tell people dont run any tests, this is withdrawal, we will all heal, wait it out. It is not safe to do that!

And on the other side we also cannot say that we had all kinds of deseases. Its a mix of a lot of factors, but it is extremely important to operate on valid facts - and these facts can be received by going to a doctor and getting the tests and then you know.

 

Coming back to mast cell deseases: Extreme stress like withdrawal can cause a mast cell disease. If you then try herb after herb and risk an overreaction, you would create a higher amount of mast cells, flowing through your body, growing over one organ after the other with all really horrible consequences. Then you go on BenzoBuddies and people tell you you shall think positive and try other things - and the mast cell disease becomes worse. And so on.

The better way is to see a specialist! It is not so complicated to be diagnosed and the main factor is that you will be told what you should NOT do. What you need to avoid! Some medication is extremely dangerous if you suffer from a mast cell desease, for example. The information is life saving.

Link to comment
Share on other sites

[17...]

[quote author=Sunflowermh

 

My answer is meant for all kind of symptoms or deseases which might follow after the usage of benzos:

It is good to know with what you are dealing.

If you have waited for some time and it did not get better it is wise to get tested, and then you have access to more options for treatment and how to handle it.

It s the same with tinitus, spasms or whatever. If you can get help, support and knowledge, it can be a good idea to ask experts and in some cases this is very necessary. I think of the buddies with heart problems in withdrawal, this can become very dangerous, and no matter if the reason for it was withdrawal, or an underlying condition or whatever - there is a treatment for it and it is good to know what's going on to prevent more damages and to be able to get the treatments you need, be it a physical therapist, the chance to apply for disability (financial reasons) or just an explanation for what is going on. I would NEVEr just listen to people on the internet - I say, if you suffer a long time from something or think you cannot hold on, a checkup can help a lot. And even when you go home with no results, - then you can calm down and telling you it is just withdrawal. But just waiting out can be dangerous and I personally had a lot of appointments without results, - but also a lot of important appointments and checks for which I am very thankful.

 

 

 

Yeah Marigold, I completely agree with you, its just that like I said if you are too sensitive and can't handle anything to treat these diagnosis (which aren't truly diagnosis if its caused by wd ) then what is the point, unless it just makes you feel better to have a diagnosis. Although for some people this could scare them more knowing they can't do anything about it. For people who aren't that sensitive then sure go ahead and take something if it is helping the "diagnosis", but then again I know I've read where antihistamines can cause dependency as well so then your now putting your body and cns through another hurdle to cross down the road (for some people). Im only replying to this post in reference to the original question MCAS, the heart issues and other organ or body ailments are of another subject. I just know all the things they use for MCAS and histamine  intolerance are pretty much strong antihistamines or mast cell stabilizers, or there is herbs such as quercetin and vitamin C, again all great if you can tolerate them but usually people with extreme MCAS from benzo wd cannot.

Getting the results for MCAS is no easy task and a bit invasive so seems like a harsh journey for just a "diagnosis". If it were me before getting tested knowing what they use to treat anyway,  I would try the herbs first just to see if A. I could handle them, then B. See if they make a difference. If your good there then you probably could handle the pharmaceuticals they use, so then maybe getting tested would be worth it. My main point though is that you would need to know going in you don't actually have MCAS, its just a temporary response to an over reactive and sensitive nervous system releasing msst cells at an alarming rate. It will calm down once you heal and your cns calms down. If your going to get tested then its strictly to try to get the sxs to be more tolerated by the things they recommemd. I just hate that these terms get thrown around and make people think they actually do now have a new disease. Its just like anxiety, insomnia, nerve pain, etc. Its not a new ailment, its a sxs of wd. Unless of course you had it before wd (im strictly talking about MCAS and histamine intolerance, nothing else).

 

no! you did not understand at all what I meant. Mast cell disease would always be a true diagnosis no matter if done in withdrawal or not in withdrawal. A heart attack is always true no matter if in withdrawal or not, same for seizures or strokes - which can also happen no matter in or out of withdrawal.

A true mast cell disease should be diagnosed since it can be the reason for following damages like osteoporosis and skin diseases and if you are a woman who wants to have children further questions will come up.

 

And this will not calm down as soon as your CNS calms down. This is not a valid information. Even a histamine intolerance may persist after withdrawal.

 

We should not fall into any black/white pattern. you cannot tell people dont run any tests, this is withdrawal, we will all heal, wait it out. It is not safe to do that!

And on the other side we also cannot say that we had all kinds of deseases. Its a mix of a lot of factors, but it is extremely important to operate on valid facts - and these facts can be received by going to a doctor and getting the tests and then you know.

 

Coming back to mast cell deseases: Extreme stress like withdrawal can cause a mast cell disease. If you then try herb after herb and risk an overreaction, you would create a higher amount of mast cells, flowing through your body, growing over one organ after the other with all really horrible consequences. Then you go on BenzoBuddies and people tell you you shall think positive and try other things - and the mast cell disease becomes worse. And so on.

The better way is to see a specialist! It is not so complicated to be diagnosed and the main factor is that you will be told what you should NOT do. What you need to avoid! Some medication is extremely dangerous if you suffer from a mast cell desease, for example. The information is life saving.

 

 

Ok, I do see what your saying but your still not seeing what Im saying so I guess we will agree on some things and not others. Lets use me for example, I had zero sensitivities or allergies or any type of histamine issue until I went into benzo wd, so as it came with my other sxs i know it is a sxs as well. Loads and loads and loads of other people have been through wd and had this intense sensitivity which ended with wd and they are completely fine now. So this proves that for many people when the cns did settle the sxs did as well, so that's not true that it wont settle. Ive spoke to several people who have helped people in wd for well over 15 years and have seen this over and over again and aren't alarmed at all that i have this because they have seen it so much. So for me Im unable to take anything, not a tylenol, not vit C, nothing, Im barely tolerating alot of foods, so sure I could go get a diagnosis of MCAS or histamine intolerance and then what, take the piece of paper home and stare at it? because if im unable to take anything for it then I dont see the reason for even going UNTIL I am less sensitive and can then go and see if i truly have it and then take the things they recommend to control the sxs if i decide to.  Ajusta is saying that she cannot tolerate even shampoo or soap, or anything she is super sensitive, ive read alot of her posts, so how is she possibly going to tolerate anything they recommend to take? She isnt that far off so Im just saying it might be best not to stress herself out at this time until she is more stable and can handle something to take to calm her sxs. All these drs do is control the sxs with drugs, unless she goes to a naturopath and they will supply her with supplements. Diet alone does not control MCAS, histamine intolerance yes to a degree. I do agree if people are worried about something in wd they should absolutely go get checked for reassurance and to be safe but when it comes to severe sensitivities there isnt much you can do except wait it out until your cns is more stable from benzo wd. Your a bit stuck until your more healed from wd.

Link to comment
Share on other sites

[17...]
To add to my above post, as far as what a dr would tell you not to do for MCAS, its going to be avoid stress, avoid harsh chemicals in your environment and high histamine foods, im sure adjusta knows this already. Ive been following several groups on Facebook for MCAS and histamine intolerance (people who have been diagnosed) just to see what they do or take, and they all do the same stuff, take supplements or medications such as Ketotofein,  and most of them have been to the Dr and have a diagnosis.
Link to comment
Share on other sites

What symptoms do you have from the sensitivities Sunfliwer?

My problem is that the Madt cell problems are destroying my connective tissue (I also have EDS) and bones. It has caused severe arthritis. My spine and jaw is bro g destroyed. So ignoring it and hoping it goes away is not always an option.

Most ppl have rashes, sneezing, reviving of symptoms etc and waiting that out might be ok.

Edit: Content

 

 

 

Link to comment
Share on other sites

[17...]

What symptoms do you have from the sensitivities Sunfliwer?

My problem is that the Madt cell problems are destroying my connective tissue (I also have EDS) and bones. It has caused severe arthritis. My spine and jaw is bro g destroyed. So ignoring it and hoping it goes away is not always an option.

Most ppl have rashes, sneezing, reviving of symptoms etc and waiting that out might be ok.

Edit: Content

 

Ajusta, I completely sympathize with you on this, I know you are suffering. But what im saying is that these MCAS drs are going to give you medications if you do test positive for mcas.  Are you able to handle medications? If not I would think it would be more tortuous to take them causing you to feel even worse, can you manage that? I say this because for me my sensitivities make my wd sxs way worse, I tried to take a tiny dose of vit c and it caused me to be worse sxs wise for about a week. I cant imagine what a pharmaceutical would do, so I have to wait until my cns is more calm. Im way too sensitive right now and can't afford to try to take something to relieve my histamine/mast cell response. Did you have mcas before wd? If so then yes its important to make sure you take care of it , but WHEN is the question? Can you handle going to the Dr and getting all those tests run? If you can't handle any medication or supplements then putting yourself through the stress of going through all that seems like way too much, its better to wait until you can handle it. Like I said before, ok now you get the results back, ok, so now what?  If you go to any mcas website you will find that they prescribe H1 or H2 antihistamines, steroids,, or mast cell stabilizers such as Ketotofein, heal your gut (supplements), low stress, low histamine foods, and avoid chemicals and toxins. If you feel like you're worried about the repercussions of possibly having mcas and your able to tolerate the medications ive mentioned above then of course, go get a diagnosis and prescription. I just know for myself it would be of no good because other than a low histamine diet and trying to avoid triggers such as chemicals and toxins there isn't anything else I can do right now but wait it out, my thoughts are as with my other wd sxs it will fade away eventually with time. But again I didn't have any form of it or histamine/mast cell issues prior to wd, my hope this is the case.

Link to comment
Share on other sites

[17...]
I'm just saying that for all people reading this post, just because you have what looks like or mimics mast cell destabilizing syndrome or histamine intolerance it CAN absolutely be just a sxs of wd and will go eventually. There  are of course exceptions. Many people have these issues not in wd. If your worried, don't stress yourself out more, try to be patient and wait. If you can handle medications they prescribe then sure try it and see if it helps. But if you can't, dont be afraid, you can wait until your more stable and less reactive. 
Link to comment
Share on other sites

[quote author=Sunflowermh

 

My answer is meant for all kind of symptoms or deseases which might follow after the usage of benzos:

It is good to know with what you are dealing.

If you have waited for some time and it did not get better it is wise to get tested, and then you have access to more options for treatment and how to handle it.

It s the same with tinitus, spasms or whatever. If you can get help, support and knowledge, it can be a good idea to ask experts and in some cases this is very necessary. I think of the buddies with heart problems in withdrawal, this can become very dangerous, and no matter if the reason for it was withdrawal, or an underlying condition or whatever - there is a treatment for it and it is good to know what's going on to prevent more damages and to be able to get the treatments you need, be it a physical therapist, the chance to apply for disability (financial reasons) or just an explanation for what is going on. I would NEVEr just listen to people on the internet - I say, if you suffer a long time from something or think you cannot hold on, a checkup can help a lot. And even when you go home with no results, - then you can calm down and telling you it is just withdrawal. But just waiting out can be dangerous and I personally had a lot of appointments without results, - but also a lot of important appointments and checks for which I am very thankful.

 

 

 

Yeah Marigold, I completely agree with you, its just that like I said if you are too sensitive and can't handle anything to treat these diagnosis (which aren't truly diagnosis if its caused by wd ) then what is the point, unless it just makes you feel better to have a diagnosis. Although for some people this could scare them more knowing they can't do anything about it. For people who aren't that sensitive then sure go ahead and take something if it is helping the "diagnosis", but then again I know I've read where antihistamines can cause dependency as well so then your now putting your body and cns through another hurdle to cross down the road (for some people). Im only replying to this post in reference to the original question MCAS, the heart issues and other organ or body ailments are of another subject. I just know all the things they use for MCAS and histamine  intolerance are pretty much strong antihistamines or mast cell stabilizers, or there is herbs such as quercetin and vitamin C, again all great if you can tolerate them but usually people with extreme MCAS from benzo wd cannot.

Getting the results for MCAS is no easy task and a bit invasive so seems like a harsh journey for just a "diagnosis". If it were me before getting tested knowing what they use to treat anyway,  I would try the herbs first just to see if A. I could handle them, then B. See if they make a difference. If your good there then you probably could handle the pharmaceuticals they use, so then maybe getting tested would be worth it. My main point though is that you would need to know going in you don't actually have MCAS, its just a temporary response to an over reactive and sensitive nervous system releasing msst cells at an alarming rate. It will calm down once you heal and your cns calms down. If your going to get tested then its strictly to try to get the sxs to be more tolerated by the things they recommemd. I just hate that these terms get thrown around and make people think they actually do now have a new disease. Its just like anxiety, insomnia, nerve pain, etc. Its not a new ailment, its a sxs of wd. Unless of course you had it before wd (im strictly talking about MCAS and histamine intolerance, nothing else).

 

no! you did not understand at all what I meant. Mast cell disease would always be a true diagnosis no matter if done in withdrawal or not in withdrawal. A heart attack is always true no matter if in withdrawal or not, same for seizures or strokes - which can also happen no matter in or out of withdrawal.

A true mast cell disease should be diagnosed since it can be the reason for following damages like osteoporosis and skin diseases and if you are a woman who wants to have children further questions will come up.

 

And this will not calm down as soon as your CNS calms down. This is not a valid information. Even a histamine intolerance may persist after withdrawal.

 

We should not fall into any black/white pattern. you cannot tell people dont run any tests, this is withdrawal, we will all heal, wait it out. It is not safe to do that!

And on the other side we also cannot say that we had all kinds of deseases. Its a mix of a lot of factors, but it is extremely important to operate on valid facts - and these facts can be received by going to a doctor and getting the tests and then you know.

 

Coming back to mast cell deseases: Extreme stress like withdrawal can cause a mast cell disease. If you then try herb after herb and risk an overreaction, you would create a higher amount of mast cells, flowing through your body, growing over one organ after the other with all really horrible consequences. Then you go on BenzoBuddies and people tell you you shall think positive and try other things - and the mast cell disease becomes worse. And so on.

The better way is to see a specialist! It is not so complicated to be diagnosed and the main factor is that you will be told what you should NOT do. What you need to avoid! Some medication is extremely dangerous if you suffer from a mast cell desease, for example. The information is life saving.

 

Ok, I do see what your saying but your still not seeing what Im saying so I guess we will agree on some things and not others. Lets use me for example, I had zero sensitivities or allergies or any type of histamine issue until I went into benzo wd, so as it came with my other sxs i know it is a sxs as well. Loads and loads and loads of other people have been through wd and had this intense sensitivity which ended with wd and they are completely fine now. So this proves that for many people when the cns did settle the sxs did as well, so that's not true that it wont settle. Ive spoke to several people who have helped people in wd for well over 15 years and have seen this over and over again and aren't alarmed at all that i have this because they have seen it so much. So for me Im unable to take anything, not a tylenol, not vit C, nothing, Im barely tolerating alot of foods, so sure I could go get a diagnosis of MCAS or histamine intolerance and then what, take the piece of paper home and stare at it? because if im unable to take anything for it then I dont see the reason for even going UNTIL I am less sensitive and can then go and see if i truly have it and then take the things they recommend to control the sxs if i decide to.  Ajusta is saying that she cannot tolerate even shampoo or soap, or anything she is super sensitive, ive read alot of her posts, so how is she possibly going to tolerate anything they recommend to take? She isnt that far off so Im just saying it might be best not to stress herself out at this time until she is more stable and can handle something to take to calm her sxs. All these drs do is control the sxs with drugs, unless she goes to a naturopath and they will supply her with supplements. Diet alone does not control MCAS, histamine intolerance yes to a degree. I do agree if people are worried about something in wd they should absolutely go get checked for reassurance and to be safe but when it comes to severe sensitivities there isnt much you can do except wait it out until your cns is more stable from benzo wd. Your a bit stuck until your more healed from wd.

 

1. You cannot get the diagnosis of a mast cell disease if you do not have a mast cell disease. It is diagnosed by blood markers and these cannot be false true or false negative. Withdrawal can not mimic a true mast cell disease. You really can compare it to a heart attack - if you have a heart attack, it is a heart attack. no matter if you are in withdrawal or not.

2. You ask what would you do if you would be diagnosed with a mast cell disease but being unable to take any medication for it? You would: a) know that you have to monitor your bone density for the next 10 years at least, b) you would know that in case of emergency or surgery and other circumstances you have to inform the ER nurses/doctors about this disease in order not to be killed if they give you a medication or narcotic which patients with mast cell disease will die off, and c) you would know that there is a need that when an organ gets ill in the future, - no matter which organ - they need to do a special form of biopsy to measure the amount of mast cells in this area in order to be aware if these cells have already damaged this organ or not. This is important because then your doctor will never give you just the normal treatment for example for a problem with the gut or stomach or gynocolcal problem, - they need to monitor the cellular processes and to know that there is a mast cell overgrowth is highly important then.

 

Do you understand now?

No one needs to be in panic, but withdrawal CAN lead to further illnesses and it makes sense to get tested. And no!, your statement "well I cannot take any med anyway - why should I be diagnosed then" does not work - because with a mast cell disease you need to monitor a lot more than just what you experience as symptoms. If I had done these tests earlier, they would have found the osteoporosis earlier and my back would not have been broken twice and I would not live from disability money today.

 

These claims just to wait it out make no sense in my eyes, cause the body is sending signals non stop. Its your personal decision if you want to trust the everyone heals claim and don't do anything but it has to be said that this can be a bad decision as well. And if you dont want to be part of a discussion about mast cell disease, then why do you join this topic? Then just ignore it and stick to what you believe and wait it all out?

Link to comment
Share on other sites

Thanks Marigold.

Yes, it is important to get everything check properly.

My spine is a mess because of this.

 

 

Can I ask how you have treated your osteoporosis.

 

I know some others who developed it in WD. Some are only in their 30s.

One woman I speak with can’t take anything for it because of sensitivities.

 

I am trying to take some vit D - it causes the same reactions everything does.

 

Calcium (as pure calcium carbonate) is not doable atm.

 

I don’t think I can take vit K because I have a long-term clotting problem due to essential thrombocythaemia.

 

 

Link to comment
Share on other sites

[17...]

[quote author=Sunflowermh

 

My answer is meant for all kind of symptoms or deseases which might follow after the usage of benzos:

It is good to know with what you are dealing.

If you have waited for some time and it did not get better it is wise to get tested, and then you have access to more options for treatment and how to handle it.

It s the same with tinitus, spasms or whatever. If you can get help, support and knowledge, it can be a good idea to ask experts and in some cases this is very necessary. I think of the buddies with heart problems in withdrawal, this can become very dangerous, and no matter if the reason for it was withdrawal, or an underlying condition or whatever - there is a treatment for it and it is good to know what's going on to prevent more damages and to be able to get the treatments you need, be it a physical therapist, the chance to apply for disability (financial reasons) or just an explanation for what is going on. I would NEVEr just listen to people on the internet - I say, if you suffer a long time from something or think you cannot hold on, a checkup can help a lot. And even when you go home with no results, - then you can calm down and telling you it is just withdrawal. But just waiting out can be dangerous and I personally had a lot of appointments without results, - but also a lot of important appointments and checks for which I am very thankful.

 

 

 

Yeah Marigold, I completely agree with you, its just that like I said if you are too sensitive and can't handle anything to treat these diagnosis (which aren't truly diagnosis if its caused by wd ) then what is the point, unless it just makes you feel better to have a diagnosis. Although for some people this could scare them more knowing they can't do anything about it. For people who aren't that sensitive then sure go ahead and take something if it is helping the "diagnosis", but then again I know I've read where antihistamines can cause dependency as well so then your now putting your body and cns through another hurdle to cross down the road (for some people). Im only replying to this post in reference to the original question MCAS, the heart issues and other organ or body ailments are of another subject. I just know all the things they use for MCAS and histamine  intolerance are pretty much strong antihistamines or mast cell stabilizers, or there is herbs such as quercetin and vitamin C, again all great if you can tolerate them but usually people with extreme MCAS from benzo wd cannot.

Getting the results for MCAS is no easy task and a bit invasive so seems like a harsh journey for just a "diagnosis". If it were me before getting tested knowing what they use to treat anyway,  I would try the herbs first just to see if A. I could handle them, then B. See if they make a difference. If your good there then you probably could handle the pharmaceuticals they use, so then maybe getting tested would be worth it. My main point though is that you would need to know going in you don't actually have MCAS, its just a temporary response to an over reactive and sensitive nervous system releasing msst cells at an alarming rate. It will calm down once you heal and your cns calms down. If your going to get tested then its strictly to try to get the sxs to be more tolerated by the things they recommemd. I just hate that these terms get thrown around and make people think they actually do now have a new disease. Its just like anxiety, insomnia, nerve pain, etc. Its not a new ailment, its a sxs of wd. Unless of course you had it before wd (im strictly talking about MCAS and histamine intolerance, nothing else).

 

no! you did not understand at all what I meant. Mast cell disease would always be a true diagnosis no matter if done in withdrawal or not in withdrawal. A heart attack is always true no matter if in withdrawal or not, same for seizures or strokes - which can also happen no matter in or out of withdrawal.

A true mast cell disease should be diagnosed since it can be the reason for following damages like osteoporosis and skin diseases and if you are a woman who wants to have children further questions will come up.

 

And this will not calm down as soon as your CNS calms down. This is not a valid information. Even a histamine intolerance may persist after withdrawal.

 

We should not fall into any black/white pattern. you cannot tell people dont run any tests, this is withdrawal, we will all heal, wait it out. It is not safe to do that!

And on the other side we also cannot say that we had all kinds of deseases. Its a mix of a lot of factors, but it is extremely important to operate on valid facts - and these facts can be received by going to a doctor and getting the tests and then you know.

 

Coming back to mast cell deseases: Extreme stress like withdrawal can cause a mast cell disease. If you then try herb after herb and risk an overreaction, you would create a higher amount of mast cells, flowing through your body, growing over one organ after the other with all really horrible consequences. Then you go on BenzoBuddies and people tell you you shall think positive and try other things - and the mast cell disease becomes worse. And so on.

The better way is to see a specialist! It is not so complicated to be diagnosed and the main factor is that you will be told what you should NOT do. What you need to avoid! Some medication is extremely dangerous if you suffer from a mast cell desease, for example. The information is life saving.

 

Ok, I do see what your saying but your still not seeing what Im saying so I guess we will agree on some things and not others. Lets use me for example, I had zero sensitivities or allergies or any type of histamine issue until I went into benzo wd, so as it came with my other sxs i know it is a sxs as well. Loads and loads and loads of other people have been through wd and had this intense sensitivity which ended with wd and they are completely fine now. So this proves that for many people when the cns did settle the sxs did as well, so that's not true that it wont settle. Ive spoke to several people who have helped people in wd for well over 15 years and have seen this over and over again and aren't alarmed at all that i have this because they have seen it so much. So for me Im unable to take anything, not a tylenol, not vit C, nothing, Im barely tolerating alot of foods, so sure I could go get a diagnosis of MCAS or histamine intolerance and then what, take the piece of paper home and stare at it? because if im unable to take anything for it then I dont see the reason for even going UNTIL I am less sensitive and can then go and see if i truly have it and then take the things they recommend to control the sxs if i decide to.  Ajusta is saying that she cannot tolerate even shampoo or soap, or anything she is super sensitive, ive read alot of her posts, so how is she possibly going to tolerate anything they recommend to take? She isnt that far off so Im just saying it might be best not to stress herself out at this time until she is more stable and can handle something to take to calm her sxs. All these drs do is control the sxs with drugs, unless she goes to a naturopath and they will supply her with supplements. Diet alone does not control MCAS, histamine intolerance yes to a degree. I do agree if people are worried about something in wd they should absolutely go get checked for reassurance and to be safe but when it comes to severe sensitivities there isnt much you can do except wait it out until your cns is more stable from benzo wd. Your a bit stuck until your more healed from wd.

 

1. You cannot get the diagnosis of a mast cell disease if you do not have a mast cell disease. It is diagnosed by blood markers and these cannot be false true or false negative. Withdrawal can not mimic a true mast cell disease. You really can compare it to a heart attack - if you have a heart attack, it is a heart attack. no matter if you are in withdrawal or not.

2. You ask what would you do if you would be diagnosed with a mast cell disease but being unable to take any medication for it? You would: a) know that you have to monitor your bone density for the next 10 years at least, b) you would know that in case of emergency or surgery and other circumstances you have to inform the ER nurses/doctors about this disease in order not to be killed if they give you a medication or narcotic which patients with mast cell disease will die off, and c) you would know that there is a need that when an organ gets ill in the future, - no matter which organ - they need to do a special form of biopsy to measure the amount of mast cells in this area in order to be aware if these cells have already damaged this organ or not. This is important because then your doctor will never give you just the normal treatment for example for a problem with the gut or stomach or gynocolcal problem, - they need to monitor the cellular processes and to know that there is a mast cell overgrowth is highly important then.

 

Do you understand now?

No one needs to be in panic, but withdrawal CAN lead to further illnesses and it makes sense to get tested. And no!, your statement "well I cannot take any med anyway - why should I be diagnosed then" does not work - because with a mast cell disease you need to monitor a lot more than just what you experience as symptoms. If I had done these tests earlier, they would have found the osteoporosis earlier and my back would not have been broken twice and I would not live from disability money today.

 

These claims just to wait it out make no sense in my eyes, cause the body is sending signals non stop. Its your personal decision if you want to trust the everyone heals claim and don't do anything but it has to be said that this can be a bad decision as well. And if you dont want to be part of a discussion about mast cell disease, then why do you join this topic? Then just ignore it and stick to what you believe and wait it all out?

 

 

 

Ok, lets have a discussion. The reason I'm in this post is because i am a member of this forum just as you are. I am curious about this subject and I have a right to my opinion just as you do, neither of us are experts (unless you are a Dr of Immunology, please let me know, or a benzo wise Dr) in this subject so your opinion is no more important than mine. If you do not like MY discussion, then just ignore it and stick to what you believe.  If you would have read my posts entirely you would see that I have never said to not get tested and to do so if that will help you and you are able to take the recommended medications that they will prescribe when the TIME is right.  If someone were to go get tested and find they indeed do have MCAS then yes of course the information will be invaluable for your future and what steps you need to take to remain safe and healthy, I never said otherwise.

 

As far as wd not possibly able to mimic MCAS, well lets look at that logically:

 

Here are MCAS sxs that I pulled from Center for Multisystem Disease, Jill R. Schofield, MD

Autoimmune Disease and Dysautonomia Practice located in Denver, CO website:

The following symptoms are common in patients with MCAS, but every patient is different and different patients have different sets of symptoms:

 

Skin: Hives, itching, flushing, angioedema, acne, eczema, fleeting rashes

Respiratory: wheezing, nasal congestion, nasal itching, hoarseness, recurrent sinusitis

Cardiovascular: dysautonomia, hypertension, hypotension, chest pain, passing out

Gastrointestinal: abdominal pain, diarrhea, constipation, nausea

Neuropsychiatric: headaches, anxiety, dizziness, forgetfulness, brain fog, episodes of rage

General: lethargy, fatigue, malaise, low grade fevers, night sweats, unexplained weight gain or loss.

 

Ok.........I can do a search for everyone of these sxs in benzobuddies (and some people have all of them at once) and find 1000s of posts from people with these sxs that are in wd that do NOT have MCAS! 

Ajusta claims there are more serious effects of MCAS such as her example of her spine, bones etc, well then yes that's another level of discussion and when she is able to address them then its very important she do so. Ive been in groups and in websites of MCAS and I don't see this hardly ever, I see the above sxs over and over again , they are the majority.

 

This is where we have to be careful, wd is a complicated  phenomena.

 

Again, I will repeat.....If you feel like you are suffering from MCAS and want to go get a diagnosis, then by all means go ahead, of course. Knowledge is power. But my point is that with alot of wd sxs, it CAN mimic other diseases and that doesn't necessarily mean that you have one, and that if it is wd related it will go away. I will also repeat that I do not think that everything is wd. Maybe reading my posts several times will help clarify exactly what I said. In regards to Adjust I know that she is suffering really bad right now so my advice to her was that possibly waiting until she can handle the stress of all that entails getting a diagnosis of MCAS, especially considering I don't think right now she can handle any of the medications they will prescribe to her. But if she can handle it then of course, go and get it done, as I said before. If Ajusta cant take the medications for MCAS then she wouldn't be able to take any dangerous medications the drs would try to give her if she were to go to the hospital for something else, that's just common sense. And yes having any knowledge of a disease you have is important, I believe that is common sense as well. After a certain point in my journey if i feel the need to go get tests i will do so, everyone should, i never said otherwise to that either, im just too sensitive right now and don't want to put that stress on my body.

 

My posts here have strictly only been for the purpose of the MCAS and histamine intolerance topic, I'm having to repeat myself on this as well. Other ailments are for another discussion/post.

 

And yes I do believe that everyone heals from BENZO wd.

 

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...