Mast Cell Questions (w/ EDS, Chiari, IH, etc)

[Rae]

Hello,

I’m trying to understand some of my reactions to the mast cell treatment with my underlying disoders (EDS, Chiari, IH, etc). I’ve been tried on both Diamox and methylzolamide (it’s cousin drug with often less side effects) and I cannot tolerate either…and I tried REALLY hard for months to work up to tolerating them. So, (largely because of Diana’s work here) Dr. Francomano put me on a trial of H1/H2 blockers. I was amazed at the difference in rashes that I’ve had since I was a child. In two weeks, they were completely GONE. So I was really thrilled with that result. Don’t know about a difference in veins or drainage from head as I’ve not had those measured in the 5 months I’ve been on the H blockers. However, after a period of a couple of months, the rashes slowly started coming back and now they seem even more pronounced. Now, the H blockers dosage has remained the same and (because of other delays) I’ve not yet had a follow up with Dr. F so I’ve not been switched to Chromolyn Sodium. Has anyone (particularly hoping Diana could chime in with her thoughts) had this happen where it almost seems like the dosage of the H blockers needs to be increased to deal with the rash coming back? I just wanted some thoughts and input before I go to see my Drs in MD. I’m having brain surgery to correct a number of issues (craniocervical instability, cervical medullary syndrome, compressed brainstem, Chiari decompression, atlanto-axial rotational instability, etc). No one yet knows if this will have any impact on my IH but I think thoughts are the I will eventually need shunting since I don’t tolerate the diamox family and it didn’t help with my ICP anyway when I was on it.

Thoughts? Opinions? Would the chromolyn sodium make a difference in the mast cell issues? Should I explore upping my dose of xyrtec/zantac (H blockers) to deal with the rash coming back or would you just wait and discuss with Dr. F in a few weeks when I see her?

Any advice, opinions, hypotheses, etc would be extremely helpful. Thanks in advance!!

Rae

[PalominoMorgan]

Mast cells are bullies. They exploit any opportunity to pick on the rest of the body. Stress or trauma are big invites for mast cells to throw a party at your body’s expense. My advice is to keep taking the Histamine and proton pump drugs. Before Gastocrom I got increased relief with Nasalcrom, the nose spray. No where near the dosage in Gastocrom but I would do 3-4 doses per nostril a day and noticed it helped.

Also try to take care of yourself with rest and trying to be as stress free as possible. Ha! With all those tentative surgeries I know, but try…

[SweetFeather]

Rae, have you seen the pre-surgery recommendations on the Mastocytosis Society’s website? They have a list of medicines which are known mast cell degranulators to avoid and a protocol to follow pre-op to help prepare for surgery. You can print that out and discuss it at your pre-op appointment!

Have you looked into histamine foods aggravating your rashes? Histamine seems to have a “barrel effect” so you need to look at individual foods AND the total amounts of histamines. Google: Chronic Urticaria, Histamine Intolerance, DAO (diaminase oxide) for relevant info.

PLUS! Be sure you watch Dr. Diana’s video on Histamine! Right here! Oh… and be sure you ask for a low histamine diet in the hospital! Best of luck to you with your surgery.
Take care, SweetFeather

[Prettytired]

Is there anyway I could have LOW histamine levels, but still have MCAD? I was reading about the link between low histamine = high copper levels and that taking Zinc can help balance that out. Now that I think back, I tried Zinc and seemed to be feeling better. I’m terrible about taking my pills so that dropped off at some point. Also, last night I ate a big bowl of cabbage rolls (with TONS of sauerkraut). I’ve had energy ever since then without an increase in symptoms.

Just a thought, curious to see what your thoughts are.

[PalominoMorgan]

Not an expert but I believe so. There is much debate and renaming going on between MCAD and MCAS. One tests abnormally, the other doesn’t and dx is based on symptoms and response to treatment.

[Prettytired]

I also wondered in this happened: Increased histamine can cause an increase in adrenaline to combat the histamine. I expected to crash once the adrenaline wore off but it hasn’t happened yet. I also don’t feel that manic feeling that I get sometimes (so I question myself about the adrenaline rising…).

[Barbara]

Hi
Cabbage contains quercetin, an antioxidant that is a natural antihistamine that can benefit allergy sufferers, how do I know this? now here’s an ODD story:

I had been to my GP a few weeks ago and been unsuccessful at obtaining any of the drugs suggested by Dr Diana. Over the past few weeks a very large weed rapidly appeared in the middle of my herb garden. When my daughter said “isn’t this a weed mum, shall I pull it out”, for some weird reason I said “no, don’t touch it, I don’t usually get weeds like that, let’s look it up” (er – this isn’t something I’d normally do for a plant!!)

I couldn’t believe what I found. Those of you well-versed with the intricate details of Dr Diana’s Theory, may end up as open-mouthed as I did. The weed was called a Sonchus Asper (or “sow thistle”). I looked on various nutrition and chemical journal websites and at a few studies – listen to this:

The Journal Of American Science says,
It has Alkaloids which are analgesic, anti-spasmodic and bacteriocidal; Flavonoids which are anti-oxidant, anti-inflammatory and iron-chelating; Proanthocyanidins beneficial for vision, also helping with diarrhea, intestinal parasites, hemorrhoids. It is rich in vitamins especially Vitamin C (we need Vitamin C to make collagen)

The Chemistry Central Journal says, it has diuretic, refrigerant, sedative and antiseptic properties. Also that it contains Quercetin, now my further research on this shows Quercetin helps reduce the eye symptoms of hay fever and reduces Prostaglandin D2 production. It may be effective in the treatment of Fibromyalgia too because of it’s potential anti-inflammatory and mast cell inhibitory properties!

Other sources said it is a great source of Manganese (also needed to form collagen). It has anti-histamine, anti-microbial and anti-fungal properties. It’s used in Liver, Lung and Kidney ailments (hmm, maybe it’ll stop us “drinking like a fish and p**ing like a racehorse”?)

It used to be used as salad leaves in the Mediteranean area, it’s used as an Ethnomedicine in Pakistan and the Moari’s have a very low bowel cancer rate, due to including it in their diet, in fact several studies showed it’s anti-tumor properties. Blimey, it’s a superfood! So come on all of you drug companies, get your scientists onto this for us.

I was well spooked!! I have to say, it didn’t taste right good though! It has a bitter aftertaste. Hmm – I’ve just got to find a way of making it more edible!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!

[Prettytired]

Barbara, it’s funny you mention quercetin because I was just reading about it today for the first time! Good to know that about the cabbage! I assume it can be bought OTC?

[Deb]

I’m a little different than most I’ve talked to, maybe because of my CYP liver enzymes. I recently had 4 of them checked and my CYP2C9 and 2C19 are both faulty as well as another one that is VOK gene. I wonder if that is why I am unable to process quercetin and most other antioxidants.
I am now on a low-phenol, low-histamine, low-sulfur diet that eliminates most of the foods I used to eat. If I take something like vitamin c or quercetin, there is no relief for hours of writhing pain. I went to the hospital crying in pain that lasted about 4 hours after taking quercetin last year.
I really miss the foods from the cabbage family which are high in sulphur. I didn’t know that it was also high in quercetin. I’m not sure which is more of a problem now.

[Deb]

I’m so sad that I can’t take these things. I want new liver enzymes. I hear a liver transplant will fix it. hmm lol

[Author]

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