My LLMD Dr K thinks I may be a long hauler (either V induced or an asymptomatic case during omicron wave) so I am doing this protocol. I am about 3-4 weeks in - my initial protocol is fluvoxamine (an...
Saraeli, since you’re pretty knowledgable on this diagnosis, a few random questions. Are many people able to work/live if they control their symptoms? I’m not going into anaphylaxis or anything like...
So, I received some more test results from the 24hr urine testing. N-methylhistamine: 160 (normal 30-200) Histamine: .037 (normal .006-.131) Creatinine: 1683 (normal 930-2955) My 2 tryptase tests (1...
I am a little better but absolutely nowhere near where I need to be to - still waiting for some answers on the mcas front from Dr T (haven’t gotten the 24hr urine results yet, bloodwork for allergies...
I’ve mentioned this before but I was igM positive for Bart and Babs via MDL 2 years after initially treating and I firmly believe now that I did not have them since switching to Bicillin after 8 more...
I too would like it to go away naturally but last month my symptoms worsened severely and I needed to go on meds for the time being. Florinef has worked wonders for me (was recommended by...
I used this protocol - the main reason was not being able to tolerate Rifampin any longer. I don’t see why you couldn’t experiment and substitute Mino for tetra for better BBB penetration but SP has...
I would like to Try ketotifen if my doc indeed diagnoses me with MCAS. I’ve only seen this lady once so far and have to wait for results and telehealth before figuring out what will be done. I am...
So, I made the journey to an allergist/immunologist in NYC at the advice of DCD and the doc seemed to know quite a bit. Definitely way more knowledgable than your standard A/I who will tell you if...
So my first tryptase test from last Sunday came back and my result was 3.0 which is well within normal range. I had another one done yesterday so I’ll get that next week. I guess this is a good...
Thank you! I hope the quercetin helps. Are there any side effects I should look out for? Can you take it continuously? I checked my probiotic - enviromedica terraflora deep immune - I don’t see any...
Thank you for all this info. I am currently taking: Zyrtec 10mg am and pm, clonazepam 1mg every 12 hours, protonix, Florinef half tablet (.05mg) to stabilize BP, probiotic. I ordered quercetin and...
Anything is possible I suppose. How would I know if it were parasites/anything I could do to get rid of them? What are you doing to deal with yours?...
Hi everyone, Up until 2-3 weeks ago I was a high functioning person with Lyme. Only taking Bicillin, and was ready to resume ivig to knock out my dysautonomia to be fully healed. Working and living a...
I should also add that I did start adding in Gluten To my diet only a couple weeks ago after going 6 months without. I don’t see how this would contribute but you never know....
This may sound a bit odd, but I'll try my best to explain it. Has anyone ever experienced the feeling where you're standing still but it feels like you're in an elevator that just dropped a floor or...
FYI Dr. K has just started his presentation for those who registered....
I went 6 months gluten free to see if it would have any positive effects on my autonomic neuropathy (pots/fatigue… no perceived benefit) and as a challenge to myself since I’ve never really done any...
Yesterday I Took my next Bicillin shot (5 days after the last one), so back to my usual 5 day interval, and already almost back to baseline. Truly incredibly how well it works. Just have to stay away...
Have you tried using tetracycline (the old school tetra) + Diflucan 2 weeks on 2 weeks off as a bart treatment? It’s a Dr SP protocol but Dr K had me try it for a while and it helped - my tolerance...
Connecticut...
The Bicillin gets everything but the dysautonomia, so I’m wondering if a dietary change would have any benefit. You’re likely right and I’m probably headed back to IVIG when I reconvene with Dr K but...
IVIG will 99% fix you for sure, just have to give it time And the proper dosage per month....
Bicillin is what he uses for suspected autoimmunity, along with IVIG if Bicillin isn’t effective. He will use the Rifampin/Mino or the SP protocol for suspected active Bart infection. Even though...
This is exactly my theory on my current state as well. Dr. SP is only a few towns away from Dr K and I know they’ve communicated. Dr K will sometimes use the what they call the Dr SP protocol for...
He is one of the co-chairs of the conference. Dr K, a Board-Certified Neurologist, practices at MedAhead Inc. where he sees patients with protracted tick-borne diseases among other neurologically...
To be honest, I'm only familiar with Dr. K and not any of other speakers. I also don't think they're saying this is the entire picture, just that there's a subset of patients who are suffering from...
It's an estimated 10-20% subset of the Chronic Lyme population so I don't think it's targeting the much larger population of those who cured themselves with other methods based on targeting...
Dr. K will be presenting at 10am on Fri the 11th "Treatment for AEIE-Lessons Learned from Lyme Disease" From the description: It is estimated that about 10-20% of patients who contract Lyme disease...
My neurologist/LLMD, Dr. K is one of the co-chairs of this event and is presenting himself on the last day. As folks such as DCD1203 can attest, Dr. K may have the best understanding of immune system...
Considering this since gluten free hasn't gotten me anymore - is this similar to the captain soup product you've mentioned before? And did Mary in your original post heal herself using the captain...
Good news, I took my Bicillin shot yesterday, tolerated it fine and feel better. Bad news is I still have yet to talk to my doc and after 7 days without the shot I could feel the old Lyme symptoms...
Thank you Garzie, your responses have been very helpful. I guess my question is, and I know there probably isn’t a definitive answer and will take trial and error, is if the response was truly in...
A lot of this jives with Dr K’s theory of using Bicillin as a mono therapy, with the idea being that since it is such a low dose of abx it is essentially a stealth attack. Lyme that has gone into...
Thank you, this makes total sense. It definitely flared up my auto immunity, I’m just hoping I can continue taking the bicillin and not have this happen again. I mean, the bicillin is still in my...
It almost certainly has something to do with the newly added supplements (liposomal oregano oil/clove/cinnamon plus the buhner herbs of hout/sida/JK). Either they didn’t mix well with my system, or...
I've been taking Bicillin LA 1.2m injections every 5 days for almost 2 years now with Dr. K and it's been a miracle drug for the most part - the only symptoms that never really went fully away were...
Gupta has a floor mat with 7 steps to follow on (I Personally don’t use the map but walk on a path that mimics it in my head) Step 1: stare at a point on the wall when you notice (the negative...
Haven’t considered it - my LLMD soured on it really quickly due to side effects and I’m a pretty high functioning patient currently - not to say I would rule it out completely but I’m trying to stay...
So, I’m currently weening down off IVIG (will make a separate post another time) after a year and have been taking Bicillin LA every 5 days for 1.5yrs (works wonderfully) and trying to do the Gupta...
I think Gupta uses the term Amygdala retraining simply to avoid any intellectual property issues. I’m doing Gupta myself, but from those I’ve talked to (paging Saraeli) who used DNRS, the Gupta main...
Yesterday evening I started AG1 shakes, it’s once a day nutrient rich powder that you mix in water. Contains a ton of vitamins, minerals, probiotics, digestive enzymes, a superfood complex, and...
Not a problem at all bro, it was worth a shot and I’m still high functioning. It was just surprising how wired I felt! Didn’t think B1 would act like a stimulant since it’s supposed to calm anxiety...
Didn’t take the allithiamine last night after having surge of anxiety for a large part of yesterday (at least 4-6ths) after I woke up (I took the 50mg at night). It felt like I had 10 cups of coffee,...
The Gupta DNRS has helped my anxiety greatly - the dysautonomia is still there as of now despite the IVIG and 4-5 months of Gupta but I’m going to keep at the Gupta , IVIG I’m discussing with Dr K...
Does anyone have any experience with their products? They use soil-based and spore-based strains prebiotics and probiotics to restore gut and immune health. https://www.enviromedica.com/terraflora/...
Started 50mg allithiamine 3 nights ago, will let y’all know how it goes. This morning I definitely notice a bit of an uptick in anxiety like DcD suggested. Not sure on what a reasonable timeframe is...
Persistent dysautonomia is basically what I’m dealing with, sounds like I should give a BBB penetrating version such as allithiamine a shot. Are there any side effects/issues with taking say.. 200mg...
3 month update: I’ve been doing the Gupta main retrainer and accelerator once per day (takes about 15mins total) 5-6 days a week. I notice a marked improvement in my overall anxiety levels. The...