Mast Cell Treatment Appears To Be Working - Yay !

[Dizzysillyak]

Hi All,

I wanted to post some good news. I've been here sooo long and never made any real progress with my orthostatic intolerance until now. My orthostastic hypotension (bp dropping 20 pts in 3 minutes) disappeared in Feb 2012 after treating for h pylori and parasites. But I'd also switched to the Wahls diet and was eating less meat. I still had to lay down most of the time due to pots.

I started taking Wal-zyr last week and noticed an improvement in my oi after just 5 mg. I'm not

getting the urge to lay down after only a few minutes but I still feel my upper body relaxing

when I do. This is varying so far and may depend on which allergy med I take and what I ate. For

example, Vistaril and Allegra made me sleepy and made me want to lay down more.

I'm up to 20 - 25 mg of Wal-zyr a day and still learning when and how much I need to take. Vistaril and Allegra knock me

out so those have been eliminated for now. Coffee helped undo the Allegra reaction. But nothing

helped me with the Vistaril reaction.

Wal-zyr isn't stopping my mouth and throat swelling so I'm still taking children's dye free benadryl at night.

I went crazy and ate several of my pain trigger foods in the last few days without being in pain.

I don't know what I'm eating that may be causing my io. It could be dust, chemicals in the air, etc too.

Of course I don't know if this will continue to work but I'm hopeful.

Mast cells are implicated in fibromyalgia, pelvic pain and oi so as an allergy sufferer, it only

makes sense that I'd respond to this.

Thanks again for posting the mast cell info here. I only wish I'd known sooner. Tc ... Not so dizzy anymore .. D

[songcanary]

Wow Dizzy, that's great news. I agree that this site has wonderful MCAS info. Bless those members for all the research. I just happen to be on doxepin for fibro but I also think it's treating a suspected case of MCAS.

I hope you continue to feel better!

Marsha

[jpjd59]

So happy you are feeling better!!!!

Pam

[Dizzysillyak]

Thanks marsha,

I'm definitely excited about finding something that works for fm, oi, pelvic pain and hopefully my swelling.

The info here was just what I needed to get me started. The part about taking an allergy med seversl times day was the key for me. Without that I'd still be feeling crappy most of the day and not knowing why. I seem to need meds every 2 - 3 hours or with meals.

I googled doxepin and saw that it's similiar to vistaril. Is it helping you ? If so with what ?

25 mg of vistaril knocked me out for 3 - 4 days so I'm not going to try it again anytime soon.

I tried Allegra yesterday and today and it's making me too sleepy too. And it's drying out my sinuses which I don't need. So far Wal-zyr is the only

one that's making me feel better during the day. But I have a lot of allergy meds and supplements I want to try.

Tc .. D

[Katybug]

Really glad you are starting to feel better!

[Dizzysillyak]

Thanks pam and katy. It's definitely a welcome refief after everything I've tried over the last few

years.

tc .. D

[stv]

Congratulations!

Please keep us informed. I am very interested too.

Best wishes and thank you for the information.

[Dizzysillyak]

Thanks svt. I'm new to the mast cell info but there's a lot in this site about it. Like I said above tho,

the trick for me is to keep taking it throughout the day.

For example, this morning I started with 10 mg of Wal-zyr but reacted to coffee and a homemade danish (which I stopped years ago because I was reacting to these) so I took another

5 mg then another 5 after it didn't stop my reaction. I feel great now and I'm headed out to run some errands. Just last week, prior to Wal-zyr, I was laying down and resting most of the time.

And fwiw, This may or may not apply to you, but I'm going to have to watch out for my me/cfs and celiac / gluten

intolerance flaring from overdoing it. I don't feel like resting anymore and I "think" I got nailed over the weekend from eating out

the whole time. I had a great time tho .. : )

Tc .. X

[songcanary]

Hi Dizzy,

The doxepin helps to regulate my body temp. Without it I have terrible chills and sweats. My body temp was as low as 94.0 and I was physically shaking. Now during the midday it runs about 97.5. It also eliminated the nausea which kept me from eating. I also think it lessened the severity of my food allergy reactions quite a bit. I tried to d/c it six months ago and those symptoms came back within a week. Never again!

Marsha

[Batik]

Glad to hear it, and very interested too. I can't find anyone locally who knows about mast cell problems, but they want me on antihistamines for other reasons (dermographism - which is, of course, itself a symptom of masto!). I tried various antihistamines one at a time, and 3 1/2 weeks ago started cetirizine 10mg together with alimemazine 5mg (I seem to tolerate half a tablet but a whole one had been odd), the first time I'd done a combination. I had no pelvic pain this month (it seems to be cyclical) and had been trying to figure out why. If mast cells could be involved, suddenly it all makes sense! My other pain levels have been lower too, now I think about it. This is rather exciting.

[Dizzysillyak]

Hi Marsha,

That's great that doxepin is doing so much for you. I'd stick with it too. We have similiar diagnosises. But I "think"

my body temp is ok now unless I'm exhausted. I "think" becoming post menopausal helped stabilize it.

Hi batik,

I'm excited about this too. Finally some relief from all that pain. : ) And I can stay upright longer. : )

I just need to find some balance and not overdo it.

Are you just taking 10 mg of certirizine / zyrtec ? I need about 20 - 30 mg to keep my pelvic pain away.

But I'm eating chocolate which I know triggers it for me. Lol .. It's great that you're responding to a lesser amount

tho.

I read that about using multiple antihistamines too but I need to research mast cell treatments more.

So far several of my attempts at adding other antihistamines has failed but I've only tried nasalcrom, vistaril and allegra. Allegra made my nose bleed yesterday too. It's just too drying for me. I'm ok with

children's dye free benadryl tho.

If you google mast cells vulvodynia you'll find some articles on this.

tc .. d

Edited September 4, 2012 by Dizzysillyak

[Batik]

I have, but I am far too brain-dead to comprehend medical stuff right now. I had googled vulvodynia and antihistamines yesterday, and basically found a few places saying "yep, works for some people", though they were mainly talking about itching.

I'm still cautious as one month isn't enough for serious data, and I'd tried a progestogen-only pill for a week a month earlier which may have altered things (still getting random bits of breast pain at times when I wouldn't expect it), but it certainly looks promising and makes sense. I'm guessing that it's the magic combination thing. For instance, neither co-codamol nor diazepam do a thing for me for muscle pain or migraine if taken alone, but if taken together, they suddenly work (and knock me for six - not one to be taking regularly). In fact, I can often get away with a lower dose of each than I'd use normally.

Prior to this, I'd tried cetirizine 10mg daily, and I'd separately tried 10mg alimemazine daily. The latter seemed to be causing side-effects, can't quite remember apart from nightmares (which I got on another H1, promethazine I think), but anyway enough that I'd come off it and gone back onto the cetirizine, which wasn't quite enough but better than nothing. Then I saw the dermatologist, who wasn't interested in looking for mast cell problems and told me that dermographism doesn't cause itching (at which point I lost faith in her, because that is plain wrong), but who did at least wax lyrical about the fun you can have trying different antihistamines together, and how she'd write to my GP about this. Still haven't heard back from the GP, but since I had both alimemazine and cetirizine sitting about the house, I decided to try them together, only this time cutting the alimemazine in half as I know that I don't do well on the full dose. Normally I get vulvodynia starting a few days before my period and going on for 5-6 days total, at least the bad stuff, with occasional milder symptoms the rest of the time (depending on what I'm up to), at least that's been the pattern for a good few months now. This time I got no pain whatsoever.

Are there any particular problems with taking 20mg cetirizine? I tried googling it, because 10mg doesn't do enough for me, but couldn't really find anything. I still get problems with itchy skin on and off, for instance. Is it a particularly high dose or scary drug?

[Dizzysillyak]

Hi batik,

I'm not sure if high quantities of these allergy meds will cause problems later on.

I haven't gotten that far in my research. Googling all the antihistamine names is keeping me busy..

I'm spreading out taking my Wal-zyr throughout the day and taking 5 mg at a time when I start feeling weak again. So far

I seem to need 10 - 20 mg in the morning, 5 - 10 in the afternoon and nothing late in the day. I have no

idea why yet tho.

I looked up alememazine (sp?) and saw that it's a sedating antihistamine. So far the ones that sedate me

(vistaril, allegra and benadryl)

aren't helping my oi. These just make me want to sleep or zone me out.

Only Wal-zyr has helped my oi and "v" so far. I ate tomatoes, a fibro trigger, and was pain free but

I only ate a small amount. I was out of town and went a little wild for a few days. Lol ..

There's an article on the web that says women can be allergic to their own estrogen. I think you

can find it by googling estrogen allergy. This may explain the timing of your symptoms.

Fwiw, Wal-zyr lists corn starch as the first ingredient and I know from

experimenting with foods for years that corn starch makes me energized. I bought brand name zyrtec

today to see if it works the same.

Tc .. D

[Dizzysillyak]

Hi again,

I forgot to say that several years ago I found that using all natural personal hygeine products

kept my reactions down too. I know Whole Foods and other health food stores carry these. At one point

the Target store near me carried these but stopped. Publix carries a natual Greenwise toilet paper.

Using less laundry soap helps too. Adding white vinegar to the final rinse helped too.

I'm still playing with bath soap to see what I like. Brenner's baby left me feeling soapy and made cleaning my tub and

shower a nightmare. I only use liquid soaps so clean up is easier.

After looking at all the easy to find products that I've had to stop using, it's no wonder so many

people are sick. Non stick pans, dyes and chemicals in our foods, hygeine products, etc etc contain toxins.

Tc .. D

[Batik]

Oh yes, I switched all that stuff over years ago, my skin wouldn't have it any other way. I'm quite ludicrously fussy about shampoo, soap and so forth, and a friend of mine was very puzzled recently to learn that I wash my face using olive oil! I'm in the UK, though, so different products to what you have in the US. If "personal hygiene products" means stuff for periods, I've been using cloth pads for years, though if the vulvodynia improves I have wild hopes of being able to use a menstrual cup again.

[Dizzysillyak]

I'm still doing really well with this. I went to visit family for about a month so I had to add some other

supplements to help me keep up so at this point I can't say exactly how much this protocal is doing

for me. And how the other supplements are working. Not that I care. I'm just enjoying being upright

and more active.

At this point, I have less swelling, less pain, reduced oi symptoms and more energy. Swelling and pain

are down from a 10 to a 2. I hardly ever get the over whelming feeling to lay down now. But I can feel the

blood returning to my upper body when I do. And my energy is so high sometimes that I have to remind myself to rest but on other days I can take several naps. I've been disabled with me/cfs for 23 years so I'm sure I still need to rest.

I know we're all going to be different but my regime is 10 mg Wal-zyr when I wake up then 5 mg at a time throughout

the day. Taking another 10 mg made me feel sick but 5 works. I'm also taking 90 mg Allegra and 1 tbsp dye free Benadryl at night.

Imho, the Wal-zyr, 10 mg pregnenolone, 10 mg dhea twice a day, adenosyl cobalamin and methylcobalamin are helping my energy level. I feel a boost from all of these.

Tc .. D

[Kellysavedbygrace]

Dizzy, thanks so much for sharing details about what is helping you.

[NMPotsie]

I was put on one mcad protocol a couple of weeks ago that included zyrtec TID zantac BID, and fluticasone. Yesterday, my neuro called me and said they're switching all the meds based on my test results (didn't say which tests, but the urine methlyhistamine came in while he was out of town and was high so I'm guessing that one). Now it's allegra and pepcid BID, Dymista, keotifin eye drops prn, and one other prescription med (I think). They're mailing the info so I'll know when I get it.

I am feeling tons better since starting the protocol they initially gave me. I get to start trying (very small dose) allergy shots in a month to help keep my symptoms down (I'm highly allergic to trees and weeds of every kind in my area). I'm also sleeping with an air purifier, which is proposed to help the nighttime symptoms. I have slowly been able to stand longer and longer; I stood and watched a bonfire for about 5 minutes without feeling wobbly, which is a miracle! Unfortunately, doc just confirmed another MRSA infection (I had hoped this would help straighten up my immune system, which hates trees but LOVES staph! I think it throws a cocktail party when it shows up! LOL)

I'm glad you're feeling better and hope you continue on your path.

[issie]

The other med is GastroCrom. I started it last week. You really need insurance to afford it ---it's unreal expensive. I had been on claritin and zantac for a long time and also Nasal Crom ---he switched me over to allegra and pepcid too and it does work better. Expect for the allegra to make you tired for the first week - but, it does get better. I had to work up slower on the GastorCrom then what he said and I also haven't added the aspirin yet. I want the meds working well before I do - cause even though that helps inflammation - it can degranulate mast cells. The idea is to have a slow release and not a massive dump. Hope it works for you too. He's got several of us on it. Seems so far, I'm the only one writing about it ---so far. They say it takes at least 6 weeks before the full effects will be felt.

Let us know how you do.

Issie

[Dizzysillyak]

You're welcome Kelly. Imho, that's what we're here for. I've certainly learned a lot from forums.

NM and Issie,

Great to hear that you're both seeing an improvement via this protocal. THanks for calling it to my attention that I may need to see a doctor and get tested for specific treatment. So far I'm happy with how my body is reacting to these meds but I've been couchbound so long that my idea of feeling better is tainted. lol ...

I don't feel well from either zantac or pepcid but I want to try it again. I read that aspirin is an nsaids and those are bad for our digestive tracts. As a celiac, I don't have much to play with in that area.

NM,

Sorry to hear you're dealing with MRSA. I have no idea what that entails but wish you the best.

tc ... d

[NMPotsie]

Issie and I have the same doc, I think, and he didn't put me on aspirin, so there must be differences in our cases. That's why it's important to get a doc to fine tune the regimen I guess.

MRSA entails 3 months of antibiotics, which make me feel soooooo bad and aggravate my pots so much. I'm allergic to half of them, and the other half don't work. It's miserable. I'm becoming a pro, though. Was on antibiotics for an entire year in 2009 for systemic MRSA. We are trying aggressive topical antibiotic treatments in the hopes that it will kill it so I don't have to take more antibiotics. It's a bit like being a leper, and once you get it it never wants to go away. Thanks for the well-wishes.

[issie]

Dizzy, I had to ease up on the H2 - I had to start out very low and start to gradually increase it. I didn't do well on it at all to start with either. The pepcid really made my stomach hurt - but, now am okay with 1/2 pm and 1/2 am. The allegra is still making me tired - but that is getting better and I switched from am to pm on it ---but, when I awaken it seems that it has worn off and I need more. So, seeing if the allegra can be increased to 2 a day - cause right now he has me on only one. The aspirin is only one, full strength a day and just starting to add a little of that.

He doesn't have me on the steroid inhaler either ---but, Im still using my Nasal Crom and it helps with allergies in the respiratory tract. So, it does sound like he has us on some different amounts and some things are different. Yes, we use Dr. Goodman in AZ. I'm in contact with 2 others who he gave this protocol to and it will be interesting to compare notes

Issie