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» LymeNet Flash » Questions and Discussion » Medical Questions » Just Diagnosed With MCAS-Update 11-27-16

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Author Topic: Just Diagnosed With MCAS-Update 11-27-16
aklnwlf
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Found out today that my histamine level is high and that it's indicative of MCAS along with my other symptoms.

Don't really know too much about this illness but thanks to TuTu for posting all the excellent info was able to see similarities in the symptoms.

So...made an appointment in Atlanta with an Allergist and had tests done....and here I am....with another illness to deal with.

All I can say is...thank God for Lymenet and those folks that work so hard to get pertinent info out there.

Well, onward and forward gang!

[hi]

[ 11-27-2016, 01:49 AM: Message edited by: aklnwlf ]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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When I realized its connection to Lyme disease, I knew I needed to share the info here. There are plenty of people here who need the information on MCAS.

I hope you can get the help you need, Alaska Lone Wolf! I'm so glad you were able to find a doctor near you.

This may need to be moved to Medical because it's so important for others to know about it.

More info:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/133927#000000

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

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Tincup
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That sucks! Wish it wasn't so, but that won't help ya none, will it?

How about some cheering up? Something funny to make you laugh?

Here is Tim Conway interrupting a live scene on the Carol Burnett show. That should do it.

https://www.youtube.com/watch?v=3qqE_WmagjY

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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aklnwlf
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TuTu-Can you move this to Medical? Others need to see this too.

TC-You always know what to say! That bad Tim Conway! The Siamese elephant crack is what got me going.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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Tim Conway is an absolute jewel!

Moving to Medical Questions

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lpkayak
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Hey ak...had to chase you over here. I dont know much about this. I guess i ll be lesrning now! Its always good to get answers tho.

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Lyme? Its complicated. Educate yourself.

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bluelyme
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Akwolf - did you see the article where someone cleared their mcad with antiparasitical tx

https://rockonnutrition.me/2016/07/20/how-antiparasitic-treatment-cured-my-mast-cell-activation-disorder/

i am sure it is gut flora related ..

thank god for tinny humor

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Blue

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aklnwlf
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Kayak-I'm trying to get a handle on this new development. Have a lot of studying to do.

Blue-Thank you! New to this and not sure what to do.

New meds are H1 and H2 blockers so far.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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The parasite thread is in the second link I posted up above. Tons of links within the links posted.

Not everyone will be "cured" with parasite treatment.

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Catgirl
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Fascinating blue that parasites stimulate mast cells in the human body! I guess I'm not surprised. I also think there is a gut connection.

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--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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Bacteria and viruses also stimulate mast cells.

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Opinions, not medical advice!

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Keebler
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Sorry you have more stuff to sort though yet this might be good so that changes can be made and you'll feel better. However, it sounds like they may be too quick here.

You say you found that your "histamine level is high and that it's indicative of MCAS along with my other symptoms."

That sounds too fast for a diagnosis, actually and it requires much more specific testing.

There can be a major difference between having the symptoms and having the disorder.

As LymeToo mentions, various infections can cause increased issues with mast cells / histamines. But that would not necessary mean MCAS would be the diagnosis.

With just the detail you gave, I don't see this so much -- or yet -- as "another illness" as much as likely a component of one(s) already on the table. There are many things that can help calm this while you sort it out - and still address the various chronic stealth infections that may still require different approaches.

Stinging Nettle is one herb that helps to calm histamine levels. Clearing dust and fuzzy things from the home (this is VERY important), attention getting in and taking out certain foods, etc. So there is much you can do to help the symptoms why you sort it out.

You might view this as some good news, though, in that attending to certain things might help.

I'm not sure about any Rx, though just by itself if they've not instructed you on lifestyle actions first.

There are further tests to determine if this is an actual diagnosis or a cluster of symptoms due to other causes. There is at least one GENETIC TEST. But I'd not let them take bone marrow for the tests as they often do. They don't have to do it that way, though.

Even many of the tests they do can be "fuzzy" as to the cause and miss underlying issues that cause the symptoms but not the syndrome. I am very wary of anything that is a "syndrome" without more specific diagnostics.
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[ 08-13-2016, 01:34 PM: Message edited by: Keebler ]

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031228;p=0

STINGING NETTLE LEAF (not root) - Links set

can help by calming histamine reactions & the cytokine storm that is often part of a chronic infections / inflammation.
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Lymetoo
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Maybe you should learn more about MCAS before saying that she couldn't have it with an elevated histamine level.

You also need to know which test she is talking about.

http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/

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Keebler
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Wasn't saying she couldn't have it, no where did I say that . . . no where at all.

just that some doctors may be too quick and that diagnostics are more than just: " today . . . histamine level is high and that it's indicative of MCAS along with my other symptoms."

As "today" was key in this, the further tests appear not yet to have been done. Only the histamine.

Hoping that, maybe, with the detail in the links others supplied, the more entailed diagnostics would be a help.

And, that since there are other things that may cause high histamine and symptoms, while addressing the situation is still vital, the big picture may not be the same as having a doctor possibly jump to a diagnosis.

And that if a bone marrow test was suggested (as some specialists suggest), there are other ways around that in more specific tests. And, along with more specific tests, a genetic test would be a good idea, too.
-

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Lymetoo
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She has done her research.

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aklnwlf
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Thank you for all the input gang!

Bought loose dried nettle leaf today and am drinking as a tea. Also bought French clay.

Calling my dermo tomorrow to set up another skin biopsy per my allergist. Would really like to find out about the hundreds of spots I have and all the sores. Hopefully this way I can get a more definitive diagnosis.

Had a reaction to sunlight last summer and had to have a biopsy then.

I'll post more as I find out what's going on.

[hi]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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WPinVA
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Wishing you luck, and following - please keep us posted!

I think this is an issue for many of us - whether we are diagnosed with it or just have symptoms.

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aklnwlf
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Skin biopsy scheduled for the 29th. Had one last year for a reaction to sunlight. I developed something that looked like warts. Was diagnosed as veruncular psoriasis. My skin is getting worse and this worries me.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Catgirl
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akinwlf, is a reaction to sun a symptom of MCAS? The reason I ask is I met someone who couldn't go out in the sun and her issue turned out to be mold. Not saying you don't have MCAS but maybe the sun thing could be mold related.

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

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Keebler
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In addition to catgirl's note about mold / fungal matters being a possible factor . . .

Porphyria could be another possible "player" for anyone with skin reactions to sun. And everyone with issues of porphyria (whether a genetic porphyria or "secondary" is usually hammered more from mold than others may be).

You might cross check each Rx you take as to if it is in the Porphyria Safe List. If it's not, that's a clue.

A couple types of Porphyria can also affect sun's reaction to the skin. That's a metabolic deficiency of a liver enzyme to assist in the Cytochrome P-450 liver detoxification pathway. There are over 11 different kinds.

Many with lyme have difficulties with that pathway. These kinds of enzymes are different from digestive enzymes, however, and are not available as supplements. Specific liver care and avoidance of certain Rx and chemicals help.
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Keebler
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https://en.wikipedia.org/wiki/Erythropoietic_protoporphyria

Erythropoietic protoporphyria (EPP) is a form of porphyria, which varies in severity and can be very painful. It arises from a deficiency in the enzyme ferrochelatase, leading to abnormally high levels of protoporphyrin in the erythrocytes, plasma, skin and liver.[1]

The severity varies significantly from individual to individual.

A clinically similar form of porphyria, known as X-Linked dominant protoporphyria, was identified in 2008.[2] . . . .

. . . Most cases of EPP are results of inborn errors of metabolism[1] but the metabolic defect in some patients may be acquired.[8] . . . .

http://ciin.org/mcs.html

About MCS (Multiple Chemical Sensitivities)

. . . Disorders of Porphyrinopathy . . .

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?#000000"

what type of M.D. tests for PORPHYRIA? Includes detail about: HPU / KPU . . . .

"Secondary Porphyria" article here is key for those with chronic stealth infections.

Rx "SAFE LISTS" of sorts here, too.
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Keebler
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Iodine deficiency? Are you getting the physiological dose in your diet (about 12.5 mg or 125 mcg)? If not, that can cause skin troubles, as can Vitamin C deficiency. Different from taking Vitamin C, though, iodine should never go above the physiologic dose.

Brownstein has good articles / book on Iodine deficiency.
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Lymetoo
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quote:
Originally posted by Catgirl:

akinwlf, is a reaction to sun a symptom of MCAS? The reason I ask is I met someone who couldn't go out in the sun and her issue turned out to be mold. Not saying you don't have MCAS but maybe the sun thing could be mold related.

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Yes, it can be for some people.

Mold is another possible cause of MCAS. Anything that can trigger mast cells is suspect. Some patients have a genetic tendency toward MCAS .. then throw in viruses, bacteria, and mold and you get a MESS.

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aklnwlf
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I really appreciate all the input!

When I first got really sick back in 2003 my main doctor was a neurologist.

He suspected Lyme (but only had elisa done) and he did a 24 hour urine for porphria because of my reaction to alcohol. They came back negative.

Thanks for the links! I'll check them out.

Sure would like to know what's happening to my skin! I go to a dermo but treatment is not helping me.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Keebler
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It's nice that doctor knows something about porphyria, unfortunately, this doctor did not know all he should have as a urine test is not enough to diagnose all the different kinds. It never has been.

If it's "there" and a urine test happens to click, great. Still, it's no place to stop even with a positive on a urine test. There can be other kinds that are also on board and some don't show at all with urine.

A special blood draw (nearly in the dark, with foil around the tube for drawn blood is key as is a stool collection. More detail is in the foundation links.

Even then, a person who may well have genetic porphyria of any type may not test positive on the test trio unless taken when they are in a (word loss) "event". Again, the foundation links have more detail.

I hope you find things that will put your body at ease. You are on the way, I'm sure. Good luck.
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aklnwlf
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UPDATE!

Went for my second appt with allergist to go over my test results.

Tryptase, prostaglandin F2AU, leukotriene E4U all normal. N Methyl histamine 1318. Normal is supposed to be between 30-200.

My allergist added a new antihistamine so now I'm taking Allegra 180 mg and a Pepcid 20 mg in the morning. At night I take Levocetrizine 5 mg and a Pepcid 20 mg at night. Also I take Bacopa Monneri (an herb) 2 x a day to reduce histamine still lingering in my body per discussions here on Lymenet.

Waiting to see what symptoms will be alleviated.

I'll keep you all posted!

[hi]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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aklnwlf
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Oh, almost forgot, skin biopsy was negative for mastocytosis. Stated Spongiotic Dermatitis, probable Nummular Dermatitis.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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aklnwlf
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Update-Add to above medications Source Naturals Activated Quercetin 2xday and Stinging Nettle tea daily. Tea is made with large pinch loose herb in approximately 1 c. hot water steeped for 20 minutes.

Frequent urination and urgency much improved.

More calm and level headed.

Happier and more optimistic.

Itching much improved.

Skin rashes better.

Able to tolerate certain medications better.

Reactions to certain foods not as severe.

More energy and able to tolerate some exercise.

Will post more later.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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Sounds great, AK! I only wish you could get on Cromolyn Sodium. I think you would make amazing progress.

I can't take Quercetin or Bacopa. I tried the Bacopa the other day and felt horrible all day. It basically makes my throat close up, for starters. I gave up on nettle .. but maybe could try as a tea.

Your histamine level is still really high. I'm sure a lot of that is from your diet.

I'm so happy you are feeling better, though!

[spinning smile]

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aklnwlf
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I would like to try the Cromolyn Sodium. I'm not sure why he hasn't put me on that with my histamine being so high. He's going to retest me so I'll check with him then.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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Yours is way higher than mine. Course I had been eating low histamine for nearly 2 yrs when I was tested.

You really do need it.

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aklnwlf
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I think so too.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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