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» LymeNet Flash » Questions and Discussion » Medical Questions » Could you possibly have MAST CELL ACTIVATION DISORDER? (Page 1)

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Author Topic: Could you possibly have MAST CELL ACTIVATION DISORDER?
Lymetoo
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Guess what? Approximately 1/5 of the population has MCAD and they don't know it. An even higher percentage of Lyme patients have it .. and don't know it.

Viruses and infections can trigger our mast cells. Once they are triggered, lots of devastating symptoms can occur.


What finally woke me up to this fact was breaking out in hives 2 years ago. The hives are gone after careful attention to my diet, but I am left with eczema and itching at the drop of a hat.

I am intolerant of so many foods that I've lost count. I was recently diagnosed with Mast Cell Activation Syndrome, a subset of Mast Cell Activation Disorder.

I am now taking cromolyn sodium orally and it seems to be helping with many of my symptoms. I pray I'll be able to add more foods to my diet.

All of the years I thought I had candida (well, I did) .. it was really the MCAS which was making me miserable.

My worst symptoms are sensitivity to smells (fragrances and chemicals),brain fog, fatigue, pain, bloating and stomach pain, itching, and asthma.

Here is a link:

http://geneticgenie.org/blog/2013/01/31/mast-cell-activation-disorder-mcad-chronic-illness-and-its-role-in-methylation/

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/36299

www.mastattack.org

There is a brand new book out by Dr Lawrence Afrin called "Never Bet Against Occam" .. It's available on Amazon. (Don't forget to access Amazon from Lymenet's link so LN gets a kick-back!)

I hope this will help some of you who are still struggling, not knowing what is causing your continued symptoms.

[ 07-23-2016, 11:25 PM: Message edited by: Lymetoo ]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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Pub Med:

http://www.ncbi.nlm.nih.gov/pubmed/27012973

Dr Afrin's paper on MCAS

http://www.allergysa.org/Content/Journals/September2014/ThePresentation.pdf

[ 04-23-2016, 07:19 PM: Message edited by: Lymetoo ]

--------------------
--Lymetutu--
Opinions, not medical advice!

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packypacky
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I believe it's Multiple Chemical Sensitivity.

http://www.ciin.org/mcs.html

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Lymetoo
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It's the other way around. Most with MCS actually have MCAS.

--------------------
--Lymetutu--
Opinions, not medical advice!

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packypacky
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quote:
Originally posted by Lymetoo:
It's the other way around. Most with MCS actually have MCAS.

Did you read that article?

Then where is MCAS from?

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Lymetoo
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Yes, I did.

It's from the mast cells being triggered. They can be triggered by many things. (see above)

MCAS is basically a milder form of mastocytosis... though many patients say the symptoms are the same.

--------------------
--Lymetutu--
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bluelyme
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I agree with 22....a few ?s is it related to gut health? Have you tried the histamine block diamine oxidase?for food tolerance... Also lyme md has a protocal of throwing every antihistamine at it ...?
I worry about this as i am doing bvt and it has histamine in it...

--------------------
Blue

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Lymetoo
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I think it is somewhat related to gut health. Some have really improved by paying attention to that. I have not had as much success but it won't keep me from trying.

Most DAO products contain Vitamin C and I don't tolerate it. I think I recently saw one without C but I have not tried ordering it.

I try not to take too many anti-histamines because you can actually become worse by taking them all the time. It only helps the symptoms, while your body keeps pumping out the histamine.

--------------------
--Lymetutu--
Opinions, not medical advice!

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susank
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Have been wondering about this.
Have researched - will research more.

With MCAD is there skin involvement as main symptom? (I don't have that).

Also - would markers to suggest MCAD show up in a CBC or Chem Panel? Neutrophils etc?
Weird - I am normal on all that as well - but know something is wrong. Allergies, histamines - something.........

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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Lymetoo
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Most likely nothing would show up in regular testing. (never did for me) ... For me, it was found in a 24 hr urine test for histamine. Usually, it takes a flare or anaphylaxis to find it in the urine test, but mine showed up anyway.

They can also test tryptase and prostaglandins. I haven't gotten the results on the prostaglandins yet. My tryptase was OK.

I don't think all MCAS patients have skin involvement. It only requires two body systems to have involvement. (see above links)

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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Borrelia burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/

Lyme MD:

http://lymemd.blogspot.com/2015/03/mast-cells-and-lyme.html

[ 05-31-2016, 12:37 PM: Message edited by: Lymetoo ]

--------------------
--Lymetutu--
Opinions, not medical advice!

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sixgoofykids
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I have histamine intolerance but have not been diagnosed with Mast Cell issues. I eat low histamine. When my histamine levels are under control, like now, I'll eat some higher histamine foods, but not a bunch of them together.

I also take quercetin twice a day and dao once a day, more if needed. Like one time I went out for smoked fish, I took a dao prior to eating that high histamine food. Meals like that used to make me feel bad.

For me I think it's partially related to gut health. I'm working on that. I've done the Array 10 test for food sensitivities and have been off those foods for a year. I've unsuccessfully tried to add some back in.

I'm easing up on probiotics. Like many with histamine/mast cell issues, I'm sensitive to them. I am taking a bifidus only one made for people with histamine/mast cell issues. I've recently added infant probiotics that have one strain of acidophilus that is actually histamine reducing.

I can look back and see I've had a histamine issue my whole life. All those unexpected stomach aches on high histamine foods. Back to my childhood. 23andme shows that I do have genes that mean low dao.

--------------------
sixgoofykids.blogspot.com

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Catgirl
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So are DAO blockers good for this?

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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WPinVA
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Thank you so much for posting! I have wondered about this too, and then forgot about it, so I am so glad you shared this info.

What kind of doctor ran the tests for you and made your diagnosis?

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Lymetoo
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I'm not sure DAO works for MCAS. It might.

I take the histamine lowering probiotics also. I found out about 10 years ago that certain probiotics made me itch. I never could figure out WHY until I made the connection with the histamine two years ago.

When I was tested for food allergies, nothing showed up but that doesn't mean a lot.

WPinVA .. The doctor who diagnosed me is an allegist/immunologist .. but only about 2-5% of allergists are knowledgeable about MCAS.

--------------------
--Lymetutu--
Opinions, not medical advice!

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WPinVA
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Thanks - I will ask my allergist!
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Nula
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I don't know if I have Mast Cell Activation Disorder. But I do have skin itching from time to time. Quercetin helps.

"Quercetin Is More Effective than Cromolyn in Blocking Human Mast Cell Cytokine Release and Inhibits Contact Dermatitis and Photosensitivity in Humans"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/

http://www.wellnessresources.com/tips/articles/quercetin_skin_issues_and_stress/

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I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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Lymetoo
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I'm afraid to try quercetin because I am sensitive to salicylates.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Nula
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Have you looked into Luteolin, Lymetoo? Buhner suggests using it in his Mycoplasma protocol (if I remember correctly).

I don't think it's a salicylate ...?

You probably already know this website:

http://salicylatesensitivity.com/forum/comments.php?DiscussionID=1946

--------------------
I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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Robin123
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Here's an interesting question - how many of you have histamine reactions to food and how many to touching things?

I have no food sensitivities, but I can't touch anything without reacting with hives. Therefore I can only wear materials I can touch and I go and get Kirkland kleenex, the only kind I can touch.

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Lymetoo
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Thanks, Nula. Luteolin is in the mint family, so I would be very afraid to try it. I'm pretty sure I would react to it.

Robin, aren't there others on the masto board who react to things they touch?

--------------------
--Lymetutu--
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LisaK
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how the heck do you get THAT diagnosis?

sounds like just more work for me. every time I think it's something else, it's something else than that last thing!

when and where does it all end?

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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sixgoofykids
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quote:
Originally posted by Catgirl:
So are DAO blockers good for this?

No, it's a dao deficiency, at least in my case. I take dao to help control histamine levels.

--------------------
sixgoofykids.blogspot.com

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sixgoofykids
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quote:
Originally posted by LisaK:
how the heck do you get THAT diagnosis?

sounds like just more work for me. every time I think it's something else, it's something else than that last thing!

when and where does it all end?

For me, I was having so many food reactions (and stomach aches) that appeared as allergies, yet allergy testing only came up with mild allergies, that I tried a low histamine diet.

I also had a lot of bloat. Within 36 hours of going low histamine I lost 6 pounds of bloat. I don't generally have my weight swing, especially that much.

This and MTHFR explain all my remaining symptoms. Lyme has been gone for 6 years, but I was still having food reactions and not able to detox (was still toxic in mercury, but couldn't eliminate it). I look back and see the symptoms of these two things pre-dating Lyme.

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sixgoofykids.blogspot.com

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LisaK
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sixgoofy, how are you working on the mercury? or did you complete that?

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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Just in case anyone needs this info on salicylates:

http://www.eczemalife.com/blogs/eczema-news/19676867-salicylate-sensitivity-food-tables

--------------------
--Lymetutu--
Opinions, not medical advice!

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Catgirl
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Thanks Six and Lymetoo (DAO responses)!

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Lymetoo
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Probiotics that can help:

http://www.thehealthyhomeeconomist.com/probiotic-strains-matched-by-health-problem/

--------------------
--Lymetutu--
Opinions, not medical advice!

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sixgoofykids
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quote:
Originally posted by LisaK:
sixgoofy, how are you working on the mercury? or did you complete that?

Well, not much right now. I'm detoxing so much on the Homocysteine Supreme for MTHFR that the only thing extra I'm doing for metals right now is Metalloclear. I also take bentonite clay.

I'll get retested at some point and we'll see if the Metalloclear and treating MTHFR was enough. If not, we'll hit it harder, I don't know how.

--------------------
sixgoofykids.blogspot.com

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shoeless joe
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wow,can't believe Im reading this because Ive just begun a low histamine journey too.

Like you you lymetoo I have suspected candida for years and I still do believe candida and dysbyosis are issues .

I do herx on antifungals.

Ive tried for years to kill candida with a strict diet and antifungals and probiotics,I have never gotten better.

Probiotics always made me sick and the last few days I also have read that a lot of lacto probiotics produce histamine.

Im also thinking where a lot of us have pots syndrome the low blood pressure could be from histamine,Im noticing when I don't eat histamine I can stay on my feet longer and bend over more.

Being on the candida diet I would eat a lot of meat(leftovers) and I also drank a lot of cocoa with stevia.

Just cutting these out and adding vitamin c and I am noticing a difference.

Its only been a week so its to early to tell but just maybe Im finally on to something.

I just bought DAO and I'm going to get quercitin.

Ive also been reading on methionine.

lymetoo may I ask what the backbone of your diet is.

I use to eat quite a bit of natural almond butter but Im thinking this is effecting me also.

This is exciting and hopefully a break for us.

Thank you for posting and I will be watching closely.

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shoeless joe
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Histamine levels will decrease and symptoms lessen in response to daily doses of methionine, an amino acid that significantly detoxifies histamine by methylating the ring structure forming N-methyl-histamine in the brain. Typical dose is a 500 mg capsule taken four times daily.

Calcium, taken morning and evening, releases additional histamine stores and lowers levels in the body. With magnesium, it acts as a natural tranquilizer.

Anyone take this?

..............................................

(breaking up the paragraph for easier reading for many here)

[ 04-27-2016, 04:44 PM: Message edited by: Robin123 ]

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Silverwolf
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Hi <<<<< Lymetoo,and each Replier >>>>>,

Lymetoo, thanks so much for this thread and the links, I am researching the MCAS/MCAD issue,and it makes me wonder.

I 'll check in from time to time as I read thru the different links. I've not been on a lot because of the bladder infection, the ABX took a toll,still really tired.

so I will reread the info' here to clarify in my foggy brain.

Jus' Silverwolfi here

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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TX Lyme Mom
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quote:
Originally posted by packypacky:
I believe it's Multiple Chemical Sensitivity.

http://www.ciin.org/mcs.html

Packy,
One of the co-authors of that webpage, Cindy Duehring, died from her illness many years ago. I know because I used to follow their work and received their newsletters.

In retrospect, I'm guessing that she most likely had undiagnosed Lyme disease because Lyme disease wasn't really on anyone's radar back then.

In other words, that CIIN website's information is very outdated. In contrast, what LymeToo and others are posting is up-to-the minute.

(In fact, the dateline on one of the medical journal articles cited is May, 2016 -- and today is still only the 27th of April, 2016!)

I didn't realize how lucky we were because our daughter's allergists were prescribing NasalCrom and GastroCrom for her several decades ago.

In retrospect, she was lucky they did because I hate to think how much more ill she might have become without it.

Cromolyn sodium is a mast cell stabilizer, and that's one of the medications recommended for dealing with these newly recognized mast cell activation disorders.

Another point I'd like to suggest is that folks who fall into this catch-all diagnostic category of mast cell disorders will probably find that they have genetic polymorphisms in their DAO enzymes

if they should ever decide to get their 23andMe genetic testing done -- which is 10% off right now, as a special Mother's Day offer.

I'm guessing that they will probably also have other genetic "defects" (polymorphisms, to be scientifically accurate) in their methylation cycle which will show up on their 23andMe test results too. This is just a hunch on my part here, purely speculative.

I'm editing to add that this is where Shoeless's suggestion about taking supplemental methionine comes into the picture because methionine is part of the methylation cycle.

Be careful with supplemental calcium though because if you are highly symptomatic, then you might not be able to handle supplemental Ca, and you might have to work up more gradually on it.

Nice work, LymeToo! I was coming here to LymeNet to post my latest findings just for you, but you beat me to the draw -- by 3 days, no less. Here's something you'll like that I don't think you've found yet though:
http://ednf.org/sites/default/files/Anne%20Maitland.pdf

Also:
https://www.paallergy.org/SiteAssets/Documents/2014-Presentations/Castells%20Mast%20Cell%20Activation.pdf

..................................................

(breaking up the text for easier reading for many here)

[ 04-27-2016, 04:46 PM: Message edited by: Robin123 ]

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TX Lyme Mom
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Has anyone here at LymeNet posted anything about Dr. Driscoll's work yet? She's way ahead of the curve on this newly recognize disorder, and lucky for us Texans, she practices in the DFW area. Here are links to one of her websites. Her work ties POTS into the mast cell disorders family:
http://prettyill.com/

I haven't purchased her book, but I found a free copy on-line of her theory explaining about it:
http://www.theilcfoundation.org/wp-content/uploads/2012/04/Driscoll_Theory_EDS_-_Online3.pdf

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Lymetoo
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Well, since you're posting about Dr Maitland, here is her You Tube Video:

https://www.youtube.com/watch?v=ktFdr-9rpIM

Shoeless .. the methionine sounds good, I think I'll check my 23andme first though, per TXLymeMom's suggestion. I had it done but have not done anything with it yet.

TXLM, I sure wish I had gone to this Dr 2 yrs ago when I first found out about MCAS, because the Cromolyn probably would have saved me from losing so many foods.

TXLM.. Be sure to order Dr Afrin's book .. you will love it.

Joe .. my mainstays of my diet (what diet??) are chicken (freshly thawed each day) .. and butter beans (oh joy.) I can eat egg yolks, so far. I scramble them.

I throw in a bit of broccoli now and then, or a few green beans, but I have to watch out for oxalates and salicylates, so it's hard. I can eat white Arborio rice, but am trying to limit that.

I can also eat Romaine or iceberg lettuce. Another great "joy." [Wink]

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I have not tried this one, but thought I would post it:

http://alisonvickery.com.au/chris-kresser-on-probiotics-for-histamine-intolerance-and-mast-cell-activation-disorder/

I like Custom Probiotics D-Lactate Free .. It's expensive BUT it lasts a long long time for me.

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TX Lyme Mom
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LymeToo,
I'm already over halfway through Dr. Afrin's new book. I love his writing style, even if some of it is a bit technical and over my head.

Here's what I'm thinking, based on what I've picked up over the years. We know that mast cells are part of our innate immunity -- our first line of defense against foreign invaders. That's why they are found where they are, in our skin and in our GI tract and our respiratory tract.

Well, Ritchie Shoemaker, MD teaches us that innate immunity is designed to protect us from non-specific threats, such as toxins of all sorts, especially biotoxins. We also know that Borrelia produces a low molecular weight, lipophilic neurotoxin which is difficult for the body to get rid of.

In other words, chronic Lyme is as much a problem of chronic toxicity as it is a problem of being a persistent infection -- maybe even more so(!) -- since we know that some folks test highly positive on WB antibody tests for Bb who don't have any symptoms of chronic Lyme at all.

Maybe the Lyme nay-sayers are at least partially right afterall, in this sense, at least. Maybe chronic Lyme really is more about chronic toxicity, depending upon one's genetic predisposition, than it is about persistent infections and co-infections.

(I'm speculating here, of course, but my mind keeps coming back to this possibility as being the missing piece of the puzzle for so many of us who can't seem to get well or to stay well without relapse.)

We also know that 25% of the population has methylation defects which interfere with glutathione production which is so necessary for detoxification.

So, here we are right back again at how to improve methylation in order to promote detoxification. And that's why the results of 23andMe are going to prove so valuable to us.

The difficult part of benefitting from our 23andMe results is understanding about over-methylation vs. under-methylation and how easy it is to cycle back and forth rapidly between these two conditions --

and most important of all, how to prevent getting into this vicious cycle in the first place.

That's why I was so excited when I found this next article which includes a "cheat sheet" with charts about how to select the right form of Vit B-12 and the right form of folate, based on a person's 23&Me test results.

(I encourage you to re-post this link under other methylation & MTHFR topics because it will help keep a whole lot of folks out of big trouble by simplifying an otherwise complicated problem.)
http://mthfrliving.com/health-tips/supplementing-for-mthfr-b12/

Equally important is this link to Dr. Ben Lynch'es explanation about over- vs. under-methylation:
http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/

Just so y'all aren't too critical of me, I'm NOT trying to hijack Lymetoo's important mast cell topic. Instead, I'm trying to tie the concepts about mast cells into other related topics of current interest.

I can't help it. This is just how my mind operates. My best ideas are often nebulous, especially at first, so please bear with me and indulge my wild and rambling speculations.

.........................................

(breaking this up for easier reading for many here)

[ 04-27-2016, 04:48 PM: Message edited by: Robin123 ]

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TX Lyme Mom
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Hooray! My daughter tells me that Nasalcrom is sold OTC now -- ie, without an Rx. I don't know about Gastrocrom, but let's hope it is. Cromolyn sodium is a mast cell stabilizer. Google it. You'll see.

DAO enzymes work by helping to get rid of excess histamine, but they are fairly expensive. However, Nasalcrom is relatively cheap, especially now that it's an OTC item.

Both DAO enzyme products and also cromolyn sodium (mast cell stabilizer) could be beneficial in extremely difficult MCAD cases, but folks who are bordering on anaphylaxis too frequently are usually under close medical supervision anyway, we would hope.

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TX Lyme Mom
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I need to add one other important caution and that is to avoid the temptation to rely too heavily on anti-histamines, especially the popular long-acting ones.

All they really do is prevent symptoms by blocking the histamine receptor sites, leaving all of the excess histamine floating around and accumulating, thereby increasing the underlying problem.

Here's what the Low Histamine Chef says about the importance of avoiding habitual use of antihistamines:
http://thelowhistaminechef.com/benadryl-is-cocaine-to-your-brain/

Also:
http://thelowhistaminechef.com/antihistamines-increase-alzheimers-risk/

And this:
http://thelowhistaminechef.com/long-term-exposure-to-antigens-may-help-mast-cells/

And also:
http://thelowhistaminechef.com/kefir-may-stabilise-mast-cells-and-lower-histamine/

http://thelowhistaminechef.com/histamine-safe-ferments/

Last, but not certainly least, her bio is convincing because she is WELL now, at long last -- after having been extremely ill and incapacitated for more than a decade.

What I find most fascinating of all about her website is to observe the evolution of her thinking over these last several years and how she has come to recognize that overly strict avoidance diets simply don't work

and that true healing must come by taking a much more moderate approach to dietary lifestyle. Here's the link to her very inspirational bio:
http://thelowhistaminechef.com/about/

...............................................

(breaking this up for easier reading for many here)

[ 04-27-2016, 04:49 PM: Message edited by: Robin123 ]

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Lymetoo
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Yes, I've used Nasalcrom over the years for allergies. It seemed to help until a few years ago. I quit using it, but may try again. It's been OTC since the 80's.

There is actually a Pub Med article about the mast cells being the "post lyme syndrome".. though I hate that term! So basically, I agree with you. This could be the key to what is keeping everyone sick.

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I've read the Low Histamine Chef stuff, but can't get my body to cooperate with eating salicylates.

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shoeless joe
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Thank you lymetoo

Seems like I can tolerate less and less foods

Im going to try and eat just 4-5 types of food for several days and see what happens.

I ate a lot of green beans yesterday and believe thats why I feel horrible today.

When you look at histamine food lists on line a lot of them contradict each other.

Im thinking eggs,fresh chicken,dress beef and a safe vegetable for a week just to see.

Thanks again, HOPE

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TX Lyme Mom
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LymeToo and Hopeless-Shoeless Joe,

Has either of you considered LDA (low dose antigen) therapy for your food sensitivities?

It's different from other forms of allergy desensitization in that it balances the two arms of humoral immunity --

namely, T-cells which are underactive vs. B-cells which are over-active and are producing too many antibodies, if I understand it correctly, that is.

Here's a link to a list of practitioners as well as links to more information about it:

http://www.drshrader.com/lda_therapy.htm
http://www.drshrader.com/lda_physicians.htm
http://www.wycoffwellness.com/sites

/wycoffwellness.com/files/u4/LOW_DOSE_ALLERGY_BOOKLET-1.pdf
http://www.townsendletter.com/April2012/allergen0412.html

...............................................

(breaking this up for easier reading for many here)

[ 04-27-2016, 04:51 PM: Message edited by: Robin123 ]

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TX Lyme Mom
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quote:
Originally posted by Lymetoo:
I've read the Low Histamine Chef stuff, but can't get my body to cooperate with eating salicylates.

TooToo,
Did you see the article where she discussed dipping allergenic foods into a pot of boiling water for a couple of minutes and then throwing out the offending food, but using the water to cook with. This was her DIY method of desensitizing herself with "low dose antigens".

I don't remember which article that was nor the date of it, and I'm expecting an interruption any minute now, so I hope you can find it without too much trouble. If not, then maybe I can find it again later for you.

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TX Lyme Mom
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Another possibility for improving digestion might be to take digestive enzymes and also HCl and ox bile. Then about 20 min. after eating, take a little bit of baking soda in water because that's the time when the body is supposed to secrete bile to neutralize the gastric acid so that digestion can proceed.

I didn't realize how lucky she was to have that doctor when she did at that time in her life when she was having so many incomprehensible allergies because he gave her an Rx digestive enzyme (better than OTC digestive enzymes)

plus he also suggested taking bicarb of soda in water 20 min. after eating.

I hate to think how ill she might still be, or whether she even would have survived this long, without learning those tricks from him.

We were so blessed to have him in her life at that time. Unfortunately, he is now deceased, or else I'd suggest that you commute to AR to see him.

..............................................

(breaking up a paragraph for easier reading for many here)

[ 04-27-2016, 04:52 PM: Message edited by: Robin123 ]

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TX Lyme Mom
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PS - Have you tried the Low Histamine Chef's idea about blenderized raw veggie juices? If you can't tolerate the fiber, then extract the fiber by squeezing it through cheese cloth, and then drink the fresh veggie juice that way.

This is what our daughter resorts to whenever she has been glutened accidentally until she can start eating solid food again. It's a trusted fail-safe method for her to fall back on during periods of sheer desperation after an accidental glutening.

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kgg
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Thank you for posing this question, Lymetoo. It is something I have been researching for my son.

Thanks everyone for all of the links.

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TX Lyme Mom
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[QUOTE]Originally posted by Lymetoo:
[QB] Borrelia burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/

FYI, here's a 2001 follow-up article by the same authors, which has 8 citations on PubMed:
http://www.ncbi.nlm.nih.gov/pubmed/11119532

It's available as an "open access" (ie, FREE) article also, as are all 8 of the subsequent articles that cited it. There might be some valuable clues here if anyone has sufficient time to delve into any of these articles.

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TX Lyme Mom
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quote:
Originally posted by Lymetoo:

Most DAO products contain Vitamin C and I don't tolerate it. I think I recently saw one without C but I have not tried ordering it.

Hey, TooToo,
The Low Histamine Chef recommends vit C derived from sago palm. Ordinary vit C is fermented from corn -- not so good for sensitive folks. She recommends Twin Labs Quercetin with Vit C because the vit C in it is from a safe source. See her list of recommended supplements.

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You're welcome, kgg. I hope this thread helps many here.

TXLM... I'm afraid of that one too! (sorry!) .. I've spent so much money on supplements I can't take. I've not been able to take Vit C for more than 25 yrs now. I wish someone would just send me a few pills to try!

I get acid reflux from it .. or bladder pain .. take your pick.

Thanks so much for all the research links, TXLM. I've been researching this for the past two years, so I've seen most of it.

I hesitated to pay out of pocket to see the doctor who diagnosed me last month. He was not in my plan and I didn't have the money to see him. (I knew he would do all the standard allergy tests and I had already had those done.)

Finally, with my new Medicare Advantage Plan, it's a piece of cake to see him now. Praise God and the meds are cheap too. The cromolyn is very expensive.

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Keebler
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-
Great Thread. Thanks to all who have supplied me with lots of material to study. Certainly an important consideration.
-

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TX Lyme Mom
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quote:
Originally posted by Lymetoo:

TXLM... I'm afraid of that one too! (sorry!) .. I've spent so much money on supplements I can't take. I've not been able to take Vit C for more than 25 yrs now.
I get acid reflux from it .. or bladder pain .. take your pick.

TooToo, Have you ever tried UriStat or UriSed for bladder irritation? One of them is Rx and the other OTC, but I can't remember which is which. They are a bit messy 'cause they turn your urine bright orange which stains your undies pretty badly. But hey, that's what Poise Pads are for. Ain't old age fun?

It does work like a charm though and is well worth the inconvenience of doing extra laundry.

Also, Cranactin with D-Mannose helps a lot of women with urinary urgency, especially so they don't have to wake up to pee in the middle of the night. Probably helps men, too, but I don't have any data points on men.

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TX Lyme Mom
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LymeToo,
Itching and eczema are often caused by a lack of the right fatty acids in the diet. Have you considered Udo's Blend or something similar?

What about a wee bit of a really good quality fish oil, one that's not rancid? Brands from the North Sea are usually highly rated for quality. They are also more expensive, of course, but you don't need a very high dosage. Just a wee bit is sufficient.

You'll know if it's rancid if you burp afterwards and get a rancid odor/taste coming back up. Or else just bite into the capsule. It shouldn't taste too fishy or nasty.

Coconut fat can be applied to the skin and absorbed that way. It's a saturated fat, of course.

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Lymetoo
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I take D-Mannose twice a day. It is amazing .. but if I add Vit C .. yikes. (and IC patients can't do cranberry)

I take fish oil twice a day.

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TX Lyme Mom
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The Low Histamine Chef suggests that Kefiran might be helpful as a mast cell stabilizer and/or to lower histamine levels.
http://thelowhistaminechef.com/kefir-may-stabilise-mast-cells-and-lower-histamine/

Here are sources for Kefiran capsules.
https://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4ADRA_enUS437US439&q=kefiran+

I read an interesting blog somewhere about making Kefiran at home, but I have no idea where I found that article. It might have been written by a tourist who was trekking through the Outback of Australia or New Zealand. I wish I could find it again because Kefiran sounds promising.

Heck, I still haven't even learned to make homemade sourkraut or Kimchi yet 'cause I'm too lazy. So why am I thinking that I would succeed in culturing Kefiran? It must be the challenge of discovering new ideas, I suppose.

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TX Lyme Mom
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LymeToo,
You mentioned having pretty bad GERD, so I'm curious if you are taking any kind of prophylactic anti-acid on a regular basis? The reason I'm asking is that these anti-acids can contribute to SIBO (small intestinal bacterial overgrowth) -- especially the stronger version of anti-acids known as PPIs (proton pump inhibitors).

SIBO patients have a VERY hard time getting the GI flora back to a healthy state. Unless the are able ot get off of their anti-acids, they often fail in re-establishing healthy GI flora.

Don't misunderstand me. I'm NOT suggesting that you do anything which you know would be harmful for you, and I trust that you are under better medical care now than before. I'm only mentioning this idea because it just one more thing for you to consider on your road back to better health.

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WPinVA
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Such great information on this thread. Has anyone tried LymeMD's protocol for MCAD?

http://lymemd.blogspot.com/search?q=mcad

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TF
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TX, many people make their own kefir at home. I did it while I was in lyme treatment. The homemade kefir is much better than what you buy in the stores.

There are many websites for folks who want to make their own kefir. Folks will give or mail you the kefir grains you need. You put them in milk and let it sit on the counter and it turns into kefir.

There are a few rules to follow so you don't kill or contaminate your grains.

People from countries that drink kefir make it at home, so I got my grains from a Russian coworker.

Kefir is a very healthy food. It tastes like liquid yogurt. Burrascano says to drink some daily. So did the lyme doc who cured me. That is why I started making my own. I'm glad I did.

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Lymetoo
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What's the difference between Kefir and Kefiran? (sorry, I'm off to bed and not taking the time right now)

I don't think I'll be game for anything fermented again. (Been there done that) That is what got me into the mess I'm in.

PPI's? Yep, been trying to get off of them for many years.

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Lymetoo
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quote:
Originally posted by WPinVA:
Such great information on this thread. Has anyone tried LymeMD's protocol for MCAD?

http://lymemd.blogspot.com/search?q=mcad

-
I do my best to stay away from taking more meds. I don't take anti-histamines unless I get really bad. Zantac makes my stomach hurt. I haven't tried Pepcid lately, but someone told me it's not gluten free. When I can't stand how I feel, I take Claritin. Zyrtec puts me 6 ft under.

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Lymetoo
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WP in VA:

quote:
Originally posted by TX Lyme Mom:

I need to add one other important caution and that is to avoid the temptation to rely too heavily on anti-histamines, especially the popular long-acting ones.

All they really do is prevent symptoms by blocking the histamine receptor sites, leaving all of the excess histamine floating around and accumulating, thereby increasing the underlying problem.




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TF
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Kefiran is the clear or pale yellow polysaccharide gel exuded by dairy kefir or water kefir grains.
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sixgoofykids
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It would be great to be able to use fermented food. I used to .... but that was contributing to my high histamine levels. I have even had to be slow about which probiotics I add. I've finally upgraded from infant probiotics to adult probiotics.

Everything I was eating that was "healthy" was a problem for my histamine levels - fermented foods, dark chocolate, avocados, fish, cooking a healthy dinner and eating leftovers for lunch, etc.

But if you're going to make kefir, homemade is awesome! I got my grains at kefirlady.com .... I don't have them anymore ....

--------------------
sixgoofykids.blogspot.com

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TX Lyme Mom
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quote:
Originally posted by Lymetoo:
What's the difference between Kefir and Kefiran? (sorry, I'm off to bed and not taking the time right now)

PPI's? Yep, been trying to get off of them for many years.

LymeToo,
You'll definitely want to look at the links I posted earlier about Kefiran (vs. ordinary Kefir) when you aren't too tired. Those links explain it better than I can, and I don't want to misquote anything.

Regarding the problem with PPIs, you might want to visit the SIBOnation Yahoo group. I've known the moderator there for decades. She's a sheer genius and always very helpful -- really knows her stuff.

https://groups.yahoo.com/neo/groups/sibonation/conversations/messages

She's a PhD pharmacist (I think), but never mentions her PhD title at all, so very few folks know about her academic qualifications -- super smart when it comes to explaining medical concepts in simple layman's language. Also very pro-natural remedies vs. Rx meds. She's a former SIBO patient herself who cured herself naturally.

Another good idea for you would be LDA desensitization therapy for foods. (I don't remember if I've already suggested LDA to you yet or not.) There's a doctor referral list on Dr. Shrader's LDA website. (Click on Physicians tab in the menu at top of page.)
http://www.drshrader.com/lda_therapy.htm

Even the MCAD expert Dr. Afrin recommends desensitization immunotherapy for MCAD, but he doesn't emphasize it nearly as much as I think he should, but then allergy is not his specialty anyhow.

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Someone mentioned LDA on the group the other day, but I don't think it was very positive. I'll have to search that out.

If kefiran is fermented, then count me out... at least for now.

Here's an article I found about magnesium helping with histamine. I found that to be true for me 4 yrs ago when I began taking ReMag.

http://synergyhw.blogspot.com/2013/01/magnesium-part-3-wrath-of-histamine.html?m=1

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TX Lyme Mom
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Ketotifen is an advanced, 2nd generation H1 blocker and mast cell stabilizer Rx medication which looks very promising for severe cases of IBS and other types of food intolerances. Google it, but ignore the suggestion that it's primarily just for asthmatic kids because it is proving useful in many difficult forms of allergic and hypersensitivity reactions.

Because not many doctors are familiar with it yet, you might find this PubMed abstract about it helpful in case you decide that you might like to ask your doctor to let you try it:
https://www.ncbi.nlm.nih.gov/pubmed/20650926

Take note that this article has 44 PubMed citations which are more current, if you want to investigate it further.

You might already be familiar with ketotifen in the form of ophthalmic eye drops for red, itchy eyes -- sold OTC as Zaditor, in a bright orange box. Not cheap, but a lot more effective than any other eye drops sold for badly inflamed eyes that are making life miserable for you during spring pollen season.

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quote:
Originally posted by TX Lyme Mom:
[QB}[QUOTE] Even the MCAD expert Dr. Afrin recommends desensitization immunotherapy for MCAD, but he doesn't emphasize it nearly as much as I think he should, but then allergy is not his specialty anyhow. [/QB]

You might be smart to avoid food allergy desensitization after all, LymeToo. Take a look at what this blogger who is the mother of two severely allergic children has discovered about it through her extensive contacts with other mothers:
http://home.allergicchild.com/food-allergies-mast-cells-hitting-your-threshold/

QUOTE:
Additionally, with the Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) research that’s currently being done in an attempt to find a cure for food allergies, it concerns me greatly that children participating in a research study may not be aware that they might be trading one disease for another.

They may be getting rid of their food allergies, and end up being diagnosed with EoE or a mast cell disorder somewhere in their future.

In fact, some children have to cease participation in a research study because of a diagnosis with EoE, that later resolved after ending peanut desensitization.

Research on milk OIT was reported at the recent AAAAI meeting where patients were found to become more reactive to milk after three to five years of desensitization.

I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder.

END OF QUOTE

My Comment:
That's what persuaded me to research Ketotifen because I'd been reading about it in Dr. Afrin's book and how beneficial it is for difficult patients who do not respond to ordinary antihistamines.

So, I got curious to find out what Ketotifen's adverse effects and risks might be. You will surely want to research these side effects for yourself first before deciding whether to take a chance on it.

However, Ketotifen does sound very promising for desperate situations whenever its benefits could outweigh its risks.

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PS re: Ketotifen -- for LymeToo,
I realize that you would prefer to avoid all antihistamines, if possible, but it seems to me that you are beyond that point in your illness now.

It seems to me that you might need to use antihistamines and/or Ketotifen as a crutch temporarily in order to be able to tolerate enough foods to get proper nutrition for your body to start to heal....

....and then gradually reduce these Rx crutches as your improved health allows you to do so.

That's how the Low Histamine Chef did it, remember? It worked for her. She didn't get well overnight!

It took her a decade to figure it out, but she blazed a trail for others to follow, so hopefully it won't take others that long to achieve optimum health again.

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For anyone interested in pursuing an MCAS/MCAD diagnosis, you will most likely need to travel out-of-state because there are not very many centers in the US yet which recognize this disorder.

http://tmsforacure.org/patients/research_centers_1.php

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There is a great list that is ongoing over on the Mastocytosis FB page. Very promising list.

It's actually better than the LLMD list .. at least there are more doctors who treat MCAD, than treat Lyme.

--

TXLymeMom .. You will especially love this one!

http://www.mastattack.org/2016/05/ige-independent-anaphylaxis-or-i-havent-been-this-excited-on-a-tuesday-night-in-a-long-time/

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TXLM.. Regarding your statement:

"I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder."


See below:

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

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quote:
Originally posted by Lymetoo:
There is a great list that is ongoing over on the Mastocytosis FB page. Very promising list.

It's actually better than the LLMD list .. at least there are more doctors who treat MCAD, than treat Lyme.

--

TXLymeMom .. You will especially love this one!

http://www.mastattack.org/2016/05/ige-independent-anaphylaxis-or-i-havent-been-this-excited-on-a-tuesday-night-in-a-long-time/

When I googled "Facebook + Mastocystosis", I got a whole bunch of different Facebooks groups. So, which FB-Masto group is it that you are referring to where one can find a list of Masto-friendly/literate doctors? TIA.

After all, it's no wonder there are more masto-friendly docs than LLMDs. The Powers That Be aren't trying to take away their medical licenses for treating it!

In fact, the AAAAI (mainstream allergists group) has embraced the Driscoll Theory 'cause that's where I first learned about MCAS.

BTW, let's not forget that Bb can activate mast cells. There are no less than 3 PubMed abstracts, plus numerous citations for each of them, and they date all of the way back to the late 1990s -- ie. nearly two decades ago.

In other words, it has taken a very long time for this concept of mast cell activation to catch on in the Lyme community. Lyme MD has a couple of fairly recent articles about MCAS. But that's because the concept of MCAS is still so very new -- just since 2007 when the first papers on MCAS came out.

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Here's a great interview article with Dr. Diana Driscoll by the Low Histamine Chef about the Vagus Nerve and POTS and Mast Cell Activation.

http://thelowhistaminechef.com/dr-diana-driscoll-interview-vagus-nerve-and-potsmast-cell-activation/

NB - Be sure to remember to read the first comment posted at the end of the article because someone got into bad trouble (gastroparesis) from using the special nutritional supplement discussed in the article which Dr. Driscoll originated and which she sells on Amazon.

(Gastroparesis is gut paralysis -- no fun at all and leads to SIBO - small intestinal bacterial overgrowth.)

The questionable product is Parasym Plus by VNS. Here's the link to it (and to Dr. Driscoll's other two products - digestive enzymes and another digestive aid) which are sold at Amazon.
http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Dhpc&field-keywords=Parasym+Plus

Here's a link to Dr. Driscoll's VNS (vagus nerve support) website which has more detailed info about her products:
https://vagusnervesupport.com/


Here are links to the ingredients list for the questionable Parasym Plus product found on the VNS website, followed by another link to the FAQ about this Parasym Plus.
https://vagusnervesupport.com/ingredients/

https://vagusnervesupport.com/faq/

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quote:
Originally posted by TX Lyme Mom:


BTW, let's not forget that Bb can activate mast cells. There are no less than 3 PubMed abstracts, plus numerous citations for each of them, and they date all of the way back to the late 1990s -- ie. nearly two decades ago.

In other words, it has taken a very long time for this concept of mast cell activation to catch on in the Lyme community.

-

That is exactly why I posted about my experience. I'm hoping others here will figure out why they are having so many issues that antibiotics don't seem to help.

The Masto site is "Mastocytosis and Mast Cell Disorders Holistic Approach." I think that is right. It's one of the largest groups.

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Someone on another board just posted this. I think it's relevant for my case. I'm having trouble with oxalates too.

-

"I believe that a lot of the post-cipro issues are due to it destroying all our oxalobacter formigines The oxalates that aren't being broken down then irritate our mast cells (a very simplified description). I am trying to gradually increase my good bacteria and using niacinamide to calm my system. I can eat a lot more foods now."

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