I have a conundrum

I know I harp in this a lot but I still haven't figured it out. I do, and have long believed my remaining issues are immune and not infectious. However, because the MCAS is so bad I react to almost all the immune modulators. But that doesn't mean they don't occasionally show little benefit.

Ex: I react badly to cat's claw but I took a small amt last night (little less than one dropper) and had a horrendous night. Fluish- weezing, air hunger, anxiety, random pain- all the same things that would happen if I ate a histamine food before bed. But this morning, despite how bad the night was, I was feeling a slight bit more and I dare to say the derealization was slightly less. However, now that the sun is up and I've eaten im right back to where I was. That doesn't take away the fact that c.c. had some little benefit, despite making other things worse.

This is the line I tread every day and its so difficult. Something I have to do to help one thing makes something else worse. I have the same issue with Japanese Knotweed.

I'm so exhausted and just want to be making progress. I feel immune regulation is the key here but everything sets off my MCAS. I am still trying for IVIG but that's not a sure thing. Until then I would like to be active and helping myself.

Any ideas? Anyone navigate a situation like this? I hate to always harp like this but I still haven't found a winning recipe. It must be out there

have you tried the four allergy meds protocol yet? have u tried butterbur herb ? mast cells are just responding to the inflammation and is made in the gut rite so whats your root . also my teacher explained histamines like a bucket that when full its full and life is miserable. all food caused reaction from proteins and sugars leaking via gut permeability. couldn't tolerate lps of killing modalities til i made room in bucket ... i used bentonite baths ,loads of binders ,iv vit c and iv glutithione -i wouldnt have made much progress without these tools and fwiw bee venom contains mast cell degranulating peptides but the itching phase(1month) is maddening...

I sometimes suspect parasites still. I have recently done a stool test and my practitioner said its actually pretty good. I wasn't expecting that. It didn't show any active infections, including klebsiella so I guess I wiped that out.
Parasites were tested on the stool test i did and thats the third time I've tested for them- always negative. However, I thought I may still have some so I picked up some parasite cleansing tincture that I will try soon. When I treated with Dr J they put me on the parasite/babesia protocol of mepron, ivermectin, azith, and I don't remember what else. I never saw any improvement from that. Would that have been sufficient to clear them?

My liver is certainly bad. I take TIDCA, milk thistle, dandelion , NAD and all the other liver herbs. It keeps my hand from turning brown but hasn't really shown improvement in my health.

I believe my MCAS is either a stuck immune system of toxicity. The only thing that ever clears it up a little is detoxing but I can only do that VERY occasionally. I have serious electrolyte & dehydration issues and if I detox too much I will spiral into a terrible crash. Even just using the bathroom gives me major psych issues because I am losing minerals. Crazy.

My teeth are fine. I had a wisdom tooth that got infected several years ago so I got them all removed but it didn't help anything.

I gave myself 2 g glutathione injections twice a week for many months and it didn't do anything. It may have helped slightly after doing it but the effects would fade quickly.

I dont think I was ever appreciating hiw sensitive my MCAS is. It doesn't matter how much something helps, as soon as I eat next it is wiped out. And broth. Even though its a histamine I need tons of broth for the salt and minerals. Without it I will crash.

I have taken butterbur, it didn't help anything. I also react to vitamin C as well as binders. Inositol, quercetin, holy basil and rooibos are the most helpful for preventing flares so I take those several times a day.

I may try the parasite challenge since its a full moon. What am I looking for again?

Saraeli- I will keep my fingers crossed for you to try the liver herbs. You should go for it! They could prove very helpful

I know this wasn't the main point of your post, but did you mean one "drop" or one "dropper" of cat's claw? I believe a dropperful can be 30+ drops and I read somewhere that 3-4 drops of tincture is roughly equivalent to one capsule of powdered herb (when I was scouring the internet trying to find a conversion at one point). So one "dropper" would actually be a pretty hefty dose all things considered.

Garzie said...
have you considered LDN for immune regulation and inflammation reduction?

i am reactive to many foods - and if i didn't follow a strict keto diet with no grains, milk, and v low carb in general my symptoms are way worse ( at least double ) - and i suspect this is a Mast cell issue - or at least an immune dysregulation issue - and most things that have helped me so far are immune modulators - but it is a slow process so i am looking to see what else I can do in the immune-modulating direction i can try.

LDN seems to have a double action - one dimer is anti-inflammatory and shuts down alot of the inflammatory cascades that Lyme upregulates - which is c good thing.

its other action is potentially even more helpful as it causes the body to upregulate its own endorphin production and it is these endorphins that are responsible for regulating much of the immune response.
if the papers i have read on it are too be believed it ramps down overactive TH2 and TH17 responses - which case autoimmunity and things like mast cell issues I think - while ramping up TH1 responses - which are the main way the body deals with intracellular infections.

even if i get one without the other i would be in a better place - so v interested to try it.
am just starting my second week at a starting dose of 0.5mg per day.
a mild increase in achiness in the mornings and possibly slightly better sleep so far

I was given LDN years ago in the beginning of this but it didn't do anything. No one has brought it back up since, though, so I dont see it as an option right now.

I also have similar issues you describe with diet or location. If I sway off my diet at all (which, after 9 years I do sometimes) or if I go to a location that is sub-optimal for me I will go right back down to where I was at my lowest. Its so frustrating- all this strict eating and living in my truck- etc is just maintenance. It doesn't improve me, essentially

Post Edited (Aerose91) : 11/1/2020 1:30:03 PM (GMT-7)

WalkingbyFaith said...

Aerose91 said...

I may try the parasite challenge since its a full moon. What am I looking for again?

I would be looking for strange things in my stool.

As for having symptom flares with bowel movements, I have had that at times, too. I suspected a lot of toxins were coming out in my stool and some were being transported through the blood stream via blood vessels in the lower GI tract. A lot of times when this was happening, my stools were mushy. When I backed off a little on the Natural Calm magnesium, my stools would firm up a little. That helped. I guess when the stool is more compact, it contains the toxins better.

Did you ever use Microbe Formulas Mimosa Pudica or their other products? Mimosa pudica with Intestinal Mover gets a lot of ropeworm out of me. I’m dealing with it again right now. I don’t follow their dosing guidelines on the mimosa, though. I did a few months that way, and it gave me nausea and psych symptoms. When I restarted, I did 4 capsules morning only.

I was actually thinking about picking up Mimosa Pudica today. Its the only parasite herb I havent tried. Is it safe for leaky gut?

Parawellness research is a good parasite test. Can order it yourself. The doc did a podcast with betterhealthguy if you’re interested.

Have you tried any of the prescription meds used for mcas (singulair, cromolyn, etc)?

dcd2103 said...
The NP who I follow ate nothing but chicken and ghee for 2y until she was healed from the autoimmune disease she had for 17y caused by a mycoplasma infection. She was completely numb from the waist down and healed. She's the one who designed this ketogenic soup diet I'm on. I'm making a miraculous turn around eating nothign but these soups every day for the past month (and some meat). I'm not ready to post about my experience until I'm a couple more months in, but my point is you may need to just adopt a ridiculously restrictive diet and just do it until your gut lining is healed.

I wish I could do keto but I can't. I have this weird combo of gene snp's that distrust my ability to process fat so whenever I have tried keto I feel like hell and never come out.
I have done the GAPS intro diet many times and am considering going back to that. It sucks to continuously be that restrictive but it may be the only option. I do wonder if I stabalized with GAPS because of all the salt in the broth and I have a really high need for salt. I have an unbelievably bad carb/sugar craving 24/7 that is only aleviated with high doses of salt and antioxidants. I fight with that badly every day, though. Even a few pieces of chocolate here and there are enough to tank me. So, I incorporate lots of fruit now for the antioxidants. I dont react too badly to it. Im really not sure if im eating to heal a bad gut or to avoid mast cell flares. Somehow I dont even know what my primary issue is

You're seeing really good results?

Post Edited (Aerose91) : 11/1/2020 4:37:14 PM (GMT-7)

k07 said...
Wow, so you’ve done a lot. I’m sure you know that a lot of the mcas/lyme specialists feel that mold or bart are major root causes.

I have MCS which is thought to be a variation of MCAS. I’m not really sure if it is or not. I’ve found nothing but avoidance has worked.

I’m currently on LDN and struggling with it but hoping if i stick with it things will smooth out. I get weird reactions to many drugs, herbs. My integrative doc did say that LDN is helpful for mast cell issues, as Garzie said above. I’m fine with .5 mg but start to get side effects at 1 mg.

What kind fo side effects? I got joint pain at 1mg, plus headaches

k07 said...
Wow, so you’ve done a lot. I’m sure you know that a lot of the mcas/lyme specialists feel that mold or bart are major root causes.

I have MCS which is thought to be a variation of MCAS. I’m not really sure if it is or not. I’ve found nothing but avoidance has worked.

I’m currently on LDN and struggling with it but hoping if i stick with it things will smooth out. I get weird reactions to many drugs, herbs. My integrative doc did say that LDN is helpful for mast cell issues, as Garzie said above. I’m fine with .5 mg but start to get side effects at 1 mg.

I have, and that has bothered me. The only tick-bourne infection I tested definitively positive for was bartonella and I was definitely exposed to mold. However, I treated bart for almost 3 years (1 of which with Dr M) and have been living in my truck for 5 years and on top of all the detoxing never made any progress. It has made me wonder if I still have bart in me but I feel like there's no way. I honestly don't know whats still driving this

dcd2103 said...
Wow so you've really been living in your truck for 5y? Like every night? Have you ever considered that the stress that that puts on your body might be adding to your sickness?

Also, have you been screened for mastocytosis?

Also did your genetic SNPs show anything for DAO? Thats related to your ability to process histamine. So is methylation. Are you double MTHFR? Hve you supplemented w/ methyfolate?

Since I can't work the only other option is staying at my parents' place and there is mold there- i het much sicker. My truck is fine though, I pulled out the passenger seat and built a platform to sleep on. Doesn't bother me and it let's me relocate around the country to my most optimal environments.

Been tested for mastocytosis- negative on that. I do have a couple DAO snp's but nothing major. I took DAO for a while and it didn't do anything.

I am double MTHFR and have the HLA defect. However I did really intense methylation for 3 solid years and it did nothing for me. I left the idea of that as a major player behind. The Dr im currently seeing (and myself) seem to agree that this is an autoimmune encephalitis. I did get this from encephalitis in the first place, anyway.

Intersting. IVIG is gonna be your ticket then. You gotta get it. Dr Y in NYC is famous for getting people IVIG, you just need to pay his consultation fees.

https://casereports.bmj.com/content/2018/bcr-2017-221405

k07 said...
Trouble thinking, arms go numb, insomnia. I do get some weird - mostly scary - dreams on 1 mg too. But that’s not too big of a deal for me. The arms going numb is constant if I’m not moving.

I’m mostly taking it for pain (low back/hips). My pain is not worse or better yet. Still hopeful. I’ve heard it takes time.

yeah - the latest info advises v slow ramp-up in dose from 0.5mg per day and those with chronic Lyme, CFS and or thyroid / autoimmune conditions are expected to have increased in symptoms for up to 3 months before getting the benefits. but the increase in symptoms in the early phases is actually associated with greater improvement in the long term so fingers crossed I can tolerate it.

i am at only 0.5mg and less than 2 weeks in and i can already feel increased pain, and fatigue in the mornings
so as expected really ( i have lyme, hashimoto's and probably other autoimmune issues ( eg Gall bladder issues mostly in the past)

makes it tricky to know where you are in treatment - but then again - have not found anything that helps significantly without first making me feel worse ....

so i guess i am in for a bit of a roller coaster for the next few months

may start a post on it as i go through this to share my experiences

good luck with your own trials