Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Aug 25, 2012.
Zyrtec is the worse in this respect. That's why I switched to Allegra (fexofenadine).
It's more of a slight brain fog feeling. It appears to be getting better tho and I'm actually feeling totally clear headed
from time to time. I'm enjoying the energy boost
I'm getting from these. : ) I appear to need 5 mg every few hours tho.
I'm awake early because I have mild but annoying mouth and throat swelling and like a dummy I ran out of benadryl.
I took 20 mg of Wal-zyr yesterday but obviosly it wasn't enough to stop this. I'll get some Benadryl today to have on
hand for emergency but I want to see if Allegra helps this first.
Tc .. X
I have hyperinsulinemia dx via gtt plus insulin. What's interesting about my gtt + insilin test is that my glucose stay within
the normal ranges so without testing my insulin this would not have shown up.
Tc .. X
If I had to guess I would say that the mast cells are hyperactive due to low serotonin. Problem is 5-htp in many won't fix this. I think a lot of fibromyalgia patients have neurotransmitter abnormalities. Antidepressants like Lexapro (I take a very small dose like quarter of a pill a day) will boost prostaglandin e1 and help eliminate e2 which is inflammatory. And immune function depends on this interaction. Of course like nano says SIBO will cause mast cell activation. Low Gaba I guess could cause it too.
Do you mean 5mg of Zyrtec, or did I miss something? How are you feeling today?
I'm trying to adjust the Zytrec and Pecid. Just feeling a bit too drugged. Only thing to report is that my skin and nails are enjoying the NeuroProtek. I feel calmer and my bladder is feeling a little less twitchy. (I have IC, too).
I'm looking at lists of high histamine foods and attempting to eliminate some of what I normally eat. Have gone without my morning oolong for the last few days which is tough. Chocolate is going to be even tougher. Giving up my little luxuries damn well better pay off. lol
In my case, although I have many high-histamine symptoms, I never had any bad reaction to high histamine foods. When I first started looking into histamine in the spring, I came across several youtube videos of people with histamine sensitivity who were forced to limit foods. That seemed like a whole different world.
In fact, cheese never made me feel bad but instead makes me better. My guess is that methionine containing foods are helping with the breakdown of histamine. Once I started wolfing down lots and lots of cheese, which my system had developed a super craving for in the first time in my life, I've never had any days where my eyes were burning so bad and were so blurry that it becomes hard to read.
This is a good point. It is known that CRH (Corticotropin-releasing Hormone) is a mast cell activator. On the other hand, CRH is released in times of stress. Therefore, SSRI's have the potential to help. I suspect this is the reason shrinks think ME/CFS is a psychiatric rather than mast cell disorder.
I do have immediate reactions to some foods that were on the lists (fish, shellfish, eggs, processed meats, etc.) and am allergic to dairy, but interestingly enough can tolerate and do crave hard cheese. The sharper, the better.
Looks like vitamin K2 might be an old forgotten treatment for mast cell activation:
Note--> "a markedly effective rate of 27.3%) in severe patients" after apparently taking it for > one year
My guess is that it was abandoned for use in asthma because of low efficacy. But still, I do have some K2 left here so I might try a niacin experiment.
An effective rate of 27.3 - 42.4% is quite high, compared to many drugs. In any case it might not be effective for all, but only those who have low or borderline vitamin K levels.
There seem to be dots connecting ME with POTS, connective tissue disorders, mast cell activation and exitotoxicity. All these could be linked to a functional vitamin K deficiency, albeit likely not reduced to one.
Well I'd assume that anyone on this forum would find their best match in the severe patients' group, which is why I'd quoted only that figure of 27.3%. It's interesting that efficacy get worse as the severity of the condition gets worse - which might mean that those with extra active mast cells don't benefit so much from whatever MOA is involved.
I'd also assume that any anti-asthma drug which advertised itself as being taken every day for a year to get 27% efficacy wouldn't last long on the market, and actually would never make it there in the first place... and apparently none are on the market.
But hey, I was looking for efficacy figures of whatever asthma drugs are out there when I saw this:
My symptoms are worse in the morning. Why is the morning worse?
I went out of town to see family for 3 days but I'm back. It was GREAT but chaotic.
I'm hesitant to post how well I'm doing because I've felt great before and crashed.
But fwiw, I've been feeling energized but a little foggy headed for the last few days. My almost constant urge to lay down is hardly
there anymore. But when I do my body still relaxes quite a bit so I think I still need this for now. I have pots. My oh went away in Feb 2012 after taking meds for h pylori and parasites and switching from the paleo to wahls diet.
I'm taking 10 mg wal-zyr in the am
followed by 5 mg about 2 hours later, then another 5 mg mid afternoon. I'm also taking children's liquid benadryl
at night still for mouth and throat swelling. Wal-zyr help me with this the other morning but it energized me too.
I "think" this swelling is from probiotics - Metagenics, Glutenzyme by Country Life and Synergy Kombucha. So I stopped
In the last few days I've tried several fibromyalgia and pelvic pain trigger foods without getting any pain as long as I
eat these while on Wal-zyr. I'm still determining how long the effects of Wal-zyr last.
I needed Klonopin for pre-seizure activity twice but I was really pushing my limits. I only slept 5 - 6
hours for 2 nites in a row and I was on the go almost non stop.
Fwiw, I don't "think" I would've responded this well if I was still eating so many foods that I'm intolerant of. So gluten,
dairy, soy and most chemicals are still out. I'm happy with the Paleo / Wahls diet now so I can't see changing this anyway.
I'll let you know if it lasts. Tc .. X
Ps. Thanks for the additional info. I'll have to read your posts later after I wind down.
I think that sleep cycles are probably disrupted in CFS too. Like dream and REM sleep isn't even entered into in a lot of cases. I take trazadone to sleep (quarter of a pill) otherwise it gives me a hangover, but if I dose it right I feel great the next day. When I take klonopin to sleep I do not feel refreshed the next day at all, possibly due to its long half life.
I never found sleep meds that worked consistently but I was eating the standard american diet including gluten, dairy,
soy and loads of chemicals. After eliminating those I started to sleep great most of the time without any help
but after adding theanine, melatonin and 5htp I could always sleep. It's funny, when I first started feeling sleepy
at night on my own without using anything I got so excited. Lol ..
But then I added supplements (b12, p5p, etc) for
energy mainly and these disrupted my sleep again. So far, I don't need energy supplements on Wal-zyr. Kow ..
Now I just take a small amount of klonopin and benadryl at bedtime
with these sleep supplements and I'm out within 30 minutes. I'm sticking with the supplements too because my body needs these. I'm assuming my gut and brain are just too damaged now from chronic leaky gut. It takes me awhile to wake up in the morning but I'd rather do this than get preseizure feelings from lack of sleep.
Tc .. X
I'm posting a link for you that doesn't outrightly refer to allergies or mast cells, but it concerns seizures, (and me, about you).
Love it!! How did you maintain your diet? I want to take a short camping trip and that's my biggest concern.
I just buy salad fixings and wash them wherever I am or I fix it all at home and take it in
individual serving containers. Right now I'm taking
a pumpkin seed dressing that travels well. I prefer an avocado dressing but it browns easily.
They make gf salad dressings but I reacted to everyone I ever tried so I stopped wasting my money.
Others are ok with these tho.
I have a small evoo bottle I carry in my backpack purse too. My grocery store sells these.
I cook and freeze meats all the time so that parts easy. But I also buy cooked crab or shrimp
when I'm out. King crab is my favorite .. It's expensive but relatively easy to eat.
I've been on a dehydrated kale or collard green kick for years and now I'm looking for some
new recipes. These travel well tho.
Tc .. X
Thanks but I don't think it applies to me.
I take 50 mg zinc most days and have for several years now but still find that I will get pre seizure activity / jittery feeling that isn't from
hypoglycemia and won't
resolve with food. I was happy to finally realize that Klonopin works. Lack of sleep is a trigger for me.
I'm happy to say too that I'm not having petite mals all day on allergy meds. : )
I hope I don't jinx this by talking about it. Over the last few years, I've felt great on different protocals
only to fail after awhile. This one makes perfect sense for me tho since I'm so allergic
to so many things. I've seen other people's stories similiar to mine.
Tc .. X
Um, just to be clear ... If I had to do this over again as a pwc, I would try the mast cell treatment WITHOUT
changing my diet first.
If it doesn't work, then I'd eliminate common allergens asap but without trauma from withdrawals. Gluten and dairy are known to act as opiods and withdrawals can be painful. Imho, it's best to go
at your own pace since we pwcs really don't need any more stress. I failed many times before I finally
realized how bad certain foods made me feel. The negative feedback helped motivate me tho. Not eating
at Whole Foods was the hardest.
I don't know what the mast cell doctors say about this tho. I'm assuming all foods that cause
Iga antibodies still need to be removed.
I don't know if it would've worked for me because my body was so stressed out from gluten, chemicals and caffeine. I'll never know now.
Sorry if I made this sound so complicated before. : )
Tc .. X
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