Sallysblooms
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I love Quercitin. A safe supplement instead of meds.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I'm sorry, X. I didn't see your comment here.. I rediscovered this thread with a google search! My daughter has had some improvements in nausea with claritin and pepcid (the info I read indicated that Dr Afrin preferred to start with pepcid over zyrtek first so that's where we started).Hi natasha,
Do you know why taking h2 alone would worsen allergies ? I don't understand why it's called an h2 when
I keep reading that it blocks acid production. It just seems like an h1 would be the only allergy med needed. Bare in mind my cfs brain is on mast cells and drugs .. Lol ..
Hi soulfeast,
Good to hear you're trying this too. The more pwcs we get to try this the more we'll know. I'm concerned
about blocking acid too.
A freind on the dinet board said that dr afrin recommends we start with claritin and zantac. I was going to start
with Equate claritin since it's gf but got side tracked by a phone call from a family member. It's in the mcas confirmed thread.
I saw the info on nueroprotek but would prefer trying single ingredients first to watch for reactions.
Please keep us up on what you try. Tx .. X
I have noticed that when I eat histamine or histamine triggering foods, those crazy symptoms show up.. spine feels inflammed, gait goes off, brain weirdness that some have suggested might be brain anaphylaxis, and others.. just from the foods.
exertion triggers mast cells (aerobic activity) which might explain some PEM?
Allergies have accompanied me since I was a baby, accumulated over the years, and became bizzare with ME/CFS and MCS. As I've shared in posts here, for the first 2 years after my ME/CFS became severe there were many times I lierally ran out of foods I could eat, resorting to fasting, synthetic "feed tube" powder, and finally I.V. nutrition. Surviving that, I stabilized to a select 5 particular kinds fo food from particular sources prepared a particular way and lived on that for several years. Even so, I've had to take allergy meds at least 3 times a week for severe reactions, had no bedding due to reactions (slept on bare wood) and developed an anaphylactic response to the active ingredient in benedryl.
Treatments I've tried:
- Homeopathic treament protocol, which included lots of tests. Went through the program twice as a kid. No improvement. Naturopathic doctor was perplexed and said "it just doesn't work on some people"
- Growing out of it. Every doctor told my parents I would, so it's a legitimate treatment, right?
- Allergy shots. This was when my ME/CFS was still "mild". I began reacting to the shots with extreme exhaustion, (different than my PENE because it was physical exhaustion only and mental groggyness from being so sleepy) would sleep 18 hours at a time directly after the appointment receiving the shot. It was worsening in length and severity each time. The allergy doctor insisted there was no possible way the shots could be causing it, but eventually I decided I knew better since it never happened otherwise. The symptoms stopped. I later heard from another allergy specialist that my symptoms describe a sort of low-level extended type of anaphylaxis and was quite dangerous.
- Taking Benedryl before every meal. This approach was recommended by a doctor so that I could get enough to eat. It seemed to make things worse, but I couldn't figure out why and continued with it for several weeks. I kept changing the form of the Benedryl, thinking it was the inactive ingredients causing issues. Years later I discovered i have a true allergy to the single active ingredient - yes, allergic to an antihistamine. Note that prior to ME/CFS I had taken benedryl as needed for about a decade to relieve reactions and had no problem with it.
- Nambutripad's Allergy Elimination Technique (NAET). NAET is a method utilizing acupressure points to try to "reset" a body's abnormal reaction to specific allergens. This was attempted when my ME/CFS was at its worst, I was very unstable and fighting to find anything I could eat at all. At first, the treatment seemed to be helping, but when we hit my oldest allergy (dairy) I reacted nonstop for weeks, barely able to get enough air and liquid food with the throat restriction, and started acquiring new allergies rapidly. They actually determined the treatment was giving me new allergies, and the doctor was not comfortable continuing.
- Heparin injections. An MCS and allergy specialist mentioned that if epinephrine is contraindicated, he uses heparin to relieve anaphylaxis in patients reacting to allergy treatment. He said in 30 years of practice he has never seen it fail, though it works *slightly* less quickly. Its effect has been proven in animal studies but is not in mainstream use. Despite the inevitable bruising, heparin is still my treatment of choice for relieving reactions due to its lack of side effects and the slight temporary improvement it sometimes gave me.
Compounded Loratadine is the other tool in my toolbox that is used to relieve reactions.
I once read that onions had a lot of quercitine which was an antihistamine, so I thought those should help. I reacted very badly to them.
Cranial osteopathy. I didn't intend this treatment to address my allergies, but after a few months of cranial osteopathic treatment by a D.O. board-certified in neuromusculoskeletal medicine, I noticed I hadn't needed my allergy meds in a while. This after several years straight of needing them several times a week despite avoiding all known problematic items. I'm now approaching 9 months of no allergy meds whatsoever, and have begun expanding my diet to previously untolerated foods. My ME/CFS is also dramatically improved and my recovery is an ongoing process.
Currently, I'll still sometimes get hives, violent sneezing, and a runny nose. I seem to have narrowed it down to the combination of overdoing and my nervous system being in sympathetic mode - if either one of these is removed from the equation then it immediately settles down. Before beginning this treatment my nervous system was sympathetic all the time, even when I was as relaxed as I'd ever been in my life, and my fatigue and PENE was not relieved by rest. Now that my body is eased enough that rest relieves my fatigue, and I've worked out how to manually bring my nervous system down, managing this apparent mast cell response without drugs is a relatively simple matter whereas it would have been impossible previously. As my body improves, this reaction is becoming more rare - several months ago it was happening about once a week for 24-48 hours, and now it's more like once a month for 30 mins. At this rate I expect it will someday disappear completely as I continue to improve, but we'll see.
I do sometimes get itchyness and hives over an area where structural shifting is occurring in the fascia. It is always localized, and does not get out of hand unless the other two factors mentioned above are present. The location is never suprising to me, since generally the area will have been tight for days if not an entire week before this symptom appears.
I've heard NAET and similar treatments of a different name seem to help several ME/CFS people's widespread allergy issues, and suspect that in my current state it would bring about improvement rather than making things worse. If I finish cranial osteopathic treatment and still have allergies I intend to revisit this possibility.
If I finish cranial osteopathic treatment and still have allergies I intend to revisit this possibility.
My brain is just getting tired easily. And I'm taking a nap almost everytime I lay down.
Lol. What part of feeling groggy didn't you understand?
I vaguely remember quercitone being mentioned too. If there's an inexpensive way to do this that would be great.
Thanks camas. I'll look at this. Do I have to join that facebook group ? I've sworn off joining anymore
internet groups. Lol. Tc .. X
Well I've been off the 2.5 mg of Zyrtec for 2 days now and I have declined significantly.
I hear you. I tried to go off zyrtec for a day to get tryptase testing done, and was so weak I couldn't get out the house to get a blood draw. Kind of a dilemma.