Thanks traveler, we are going to get the adrenals tested. Especially because my bp is so low....
How are you hun? I’m nervous myself about stuff I need to try because my eyesight is deteriorating but I scared it might worsen my mcas. I realized instead of thinking I’m scared of what it might do,...
Monolaurin can break down your biofilm, so if you don’t kill the stuff that comes out all your symptoms can flare....
So I frequently develop bullseye rashes when bitten by a mosquito or even after accidentally smacking a limb against something and bruising. I took a picture once and sent it to my llmd and they said...
They’ve been tested sporadically over the years. I recently switched to taking armour and it crashes my blood pressure but it’s been doing great things for my mcas. My llmd did just order a saliva...
Sorry my eyes aren’t working well enough right now to read everything that people posted, but I get panicked feeling in my legs an abdomen when I’m relapsing my bp is too low or I’m too cold. They...
Sorry Astro, I feel your pain. I usually fall back on getting my llmd to prescribe whatever I need that I can’t get out of traditional docs....
Thanks that is helpful! I do know at the end of the day mostly I’ll just have to try it and see. I saw one guy selling his form of citrus pectin say it doesn’t,... but he didn’t give a specific...
Very cool...
My doc prescribed citrus pectin for my mold problems. But I’m worried because citrus fruits are usually high in histamine. Has anyone with mcas or histamine intolerance taken citrus pectin?...
I know what you mean about remorse over some action. But at this point there is nothing you can do to undo it. The hard part of deciding is done. We all have many fears, but the ones I really pay...
I take 1400mg of liposomal c. I don’t follow specific medical advice in this, just take one pill and hat happens to be how much is in it....
Just took activated charcoal. Happy to report it seemed to only cause normal binder reactions and not a crazy mcas reaction. Also improved my vision... but as expected crashed my bp and sent me into...
I’m not sure anyone can answer that since anxiety can be caused by many things. It depends on exactly what is causing your specific anxiety. I think there are many ways lyme etc can cause it....
Yeah I try but I have so many meds... it’s sort of hard to keep it away from everything...
Hey guys I recently got lab results from real time labs that said I have mild mold toxins. My doc prescribed a number of binders one of which is activated charcoal. I know I asked my doc and they...
Low blood pressure can cause anxiety and deep depression for me. So vigilant control of it with rigid midodrine and licorice root timing sometimes helps me. I ❤️ Cna’s. They’ve helped me a lot 🙂 not...
I’ve been with dr J since 2008. I did have an interesting experience yesterday. Went to,this chiropractor who does Naet and pemf. Not sure if naet is helping at all. We’ve been looking into getting...
Yes I’ve seen studies that say all vaccine efficacy is way lower in, I forget it was generic immune compromised patients or Lyme patients. But it basically said we produce maybe about 20% of the...
Fulvic acid breaks down my biofilm...
So I have no research to add to the discussion but like rainycloud, I heard through the international grapevine (mom’s piano student with relatives in Pakistan) that they believe novavax tech to be...
I’m not sure medically, but it think you can have gluten intolerance without celiac. That’s what I considers myself for years. My colonoscopy and endoscopy were fine when I went off gluten. Yes...
Yes I cut gluten casein and soy in the early years of my illness (around 15 years ago). Mcas causes more traditional allergy symptoms in me (itching, burning of mouth and lips, swelling of lips,...
I haven’t tried ketotifen or khella or stinging nettles. I have an appointment with an mcas specialist this coming Thursday. Last doc I saw was Lyme who has been handling my mcas thus far. I’m going...
I’ve been avoiding this med by my doc very kindly told me Bailey take the frickin med! Though in much more diplomatic terms. I hate antidepressants because they usually makes me depressed and I...
Before my body went psychotic with mcas, typical symptoms of my food intolerances (not proper allergies) were what might be described as a migraine but I usually thought of it as inflammation in head...
I found contacting global Lyme alliance helpful https://www.globallymealliance.org/lyme-patient-support/find-medical-professional/...
Yeah this is why I’m not so upset very upset with dr J. He actually went bankrupt when they came after him....
I’m not sure, mines a mess too. There are prescription probiotics though just FYI they have even more probiotics...
So I think he lets you start with his np’s if you need a cheaper appointment not sure how much they are. And you’re right it’s easy to complain about a system and not have a solution, but hey...
Did your doc try bactrim on you? It did wonders for me, particularly my breathing. It’s for bartonella but I think it also get babesia and maybe a little Lyme. If insurance doesn’t cover it it’s...
Thanks girlie!...
So I got a list of Lyme docs near me from global Lyme alliance. There was a name I recognized that I hadn’t realized was near me. Does anyone have experience being treated by dr M in Maryland? Online...
Oh that is a cool way around the mutation problem...
Oh that’s a good point. I hadn’t thought about how it might skew the results. If no one else did it. That’s smart Garzie thanks!...
The prices I quoted for s p’s office were from a new patient info email sent to me may 5th. I don’t know if they jacked my prices higher because they were already aware I was a “complex” case. The...
I’m in va and va’s COVID policy is you can only do first appointments with in state doctors. You can do telemedicine with out of state doctors if it’s continuing care. If they really were worried...
To see S P initial appointment is $2500 and follow ups are $675. Initial for nurse practitioner is $1375 with follow up $575 There’s also a naturopath but she does slightly different stuff and you...
Oh wow I’m not the only one who gets that with clindamycin? My doctor looked at me weird when I said that happens to me. Then prescribed me acid reflux meds sort of like I guess I believe you if you...
When I take clindamycin (iv or oral) if I’m relapsed I get this acid bile taste in my mouth. But then after it’s been cleared up not much of a problem. So if I haven’t taken it for a while especially...
So I don’t know very much about mcas other than obvious so I can’t comment on that part. I also don’t know almost anything about the gall bladder. But I know my Lyme docs have said if you get sick...
*hugs for you hun*...
Lol I’m glad I’m not the only one who takes meds like that. When I first got sick I was so on top on exactly how many mg of what and what brand etc. now I just sort of grab some stuff in mouth, and...
So the first drug that actually helped my air hunger was bactrim. It was dramatic improvement. Every drug before it made me herx but not have discernible improvements. When I’m off bartonella meds...
I feel you mednerd. I was trying to see S P too and his rates shocked me. He also wouldn’t let me see him without showing up in person because of my stupid states regs made expressly to try to make...
Hey guys I’m getting ready to do my real time labs mold toxin test. I know they said no binders 5 days before. Neil Nathan also says to take a hot bath night before and take glutathione. I can’t take...
Eating green vegetables used to help me tolerate clindamycin better and also drinking hot green tea....
Thanks deep sleep, garzie, wbf, donjr and medical nerd for all the info 🙂...
Well it depends on how you define herx. You would in theory start with fewer toxins in your body but herx is the reaction caused by toxins produced by the death of your infection. So the number of...
So they’re way better than taking binders?...