Okay, I am probably going to start in the next month or so. Will keep this forum updated...
Yah good thoughts. My exposure to prednisone has been pretty limited. Basically, 4 different 4-5 day tapers of usually 20mg then 15 then 10 then 5 used when pain and inflammation get extreme. I think...
Hey garzie, Saw ur post second. Yah I definitely herx massively to both traditional bartonella meds and to babesia meds. Tafenoquine was the latest very severe herx. Baseline symptoms, in addition to...
Hey, Thanks for your input. Yah I have been evaluated for all the connective tissue disorders and done genetic EDS testing. All normal. It's weird, growing up I was very athletic, but became...
Hey everyone, I actually don't know if I have lyme but I have very confirmative testing for bartonella and babesia. After treating for 4 years (infected roughly 35 years) I have suffered a lot of...
The weird thing about the dapsone + rifampin + doxy combination that I may have brought up before is that rifampin is such a potent diminisher of dapsone and doxy levels in the blood. CVS pharmacy...
Bro - I saw Kim the PA for most of the apt but Dr J came in for 10 minutes at the end....
Okay thanks got it. The MB seems to have a direct irritating effect on the bladder. My pee is bright blue and burns the urethra. No other bart treatment has caused this for me. It happened less with...
Girle - thanks for sharing and reliving that pain for my sake. I am hopeful but scared of the path ahead. I also have this autoimmune encephalitis component - Jemsek dissuaded me from continuing high...
I also just made the jump to Dr J. So I can update this thread if desired. To give you an idea: I am 34. I believe I was born with bart or got it in early childhood. I also got a tickbite in 2017 -...
Quin - why do you think bartonella seems susceptible to minocycline, but not doxycycline. Mino 200 mg gives me horrendous herxing, especially in the nerves and brain. I can take 500mg of doxy and...
Tickbite - Clarithromycin raises rifabutin levels in the blood, which amplifies its potency, which is why this combo is so potent. But rifabutin does lower clarithro levels. If I were able to...
Tickbite - there is also gentamicin I think if you can tolerate (I could not due to severe herxing) Dr M's clarithro + rifampin --> rifabatin protocol is the best shot we currently have at...
Rainy cloud I think the in vitro study showed it had some anti-microbial effect by itself. But I think it worked in a synergistic manner with many of the abx tested. I don't really think they know...
Lymie - you can prob approach Rajadas on FB messenger and ask about the study I think. I have reached out to him on there. I am not sure about recruitment. You also may have to go to California for...
Quin - thanks for reporting your experience. I doubt it will be a huge game changer. But I like to experiment. Your anti-seizure druge (forget the name) + minocycline is on my list of potential...
I neglected to mention that the pharma grade liposomes encasing the azlocillin theoretically make the drug intracellular. I think the major question I have about its potential efficacy is whether it...
I am sorry to hear about that. Thats horrible. I could theoretically get one of those continuous blood glucose monitor implants that would monitor it at night. They are available at the same...
Dr Rajadas is past the high throughput drug screening phase. He may still be doing this but the drug candidate that came up so far as most potent against bartonella (and 2nd best behind DSF for lyme)...
Yes I would monitor that. Quite easy to do at home. Metformin is being widely used by the anti-aging community. There is legitimate research showing it lowers cancer risk and may slow aging by acting...
Has anyone ever combined metformin with antibiotics? I know there has been some chatter about this topic in other communities. Metformin has been shown to increase effectiveness, enhance...
Sorry to hear about this. Dr Moz reccommends ketotifen as his go to for MCAS. It works primarily in the gut. It has helped me a little, though I have minor MCAS symptoms with no food reactivity -...
Dr Moz mentions how Bartonella has been linked to Rosacea in his new webinar on youtube. Just a heads up....
Yah it happens to me. Not always headache, sometimes just severe flushing and feeling like crap. If you are on abx, the heat will increase their penetration to tissues and sensitize lyme to being...
Very interesting. Hopefully you get some symptom clearing soon enough. Keep us posted....
I also wonder if sauna use. Like slowly ramping up to very long high heat sessions over time could be a way to regain aerobic exercise tolerance. Just a random thought....
Yah I am in zero condition to do any form of exercise. Almost entirely bedridden. That being said, for people like e=me, sauna is probably the next best thing. It has been shown to improve exercise...
You can also buy the molecular hydrogen tablets that you drop into water....
I consulted with Dr Mor a while ago. The tentative protocol he gave me was similar, but much more aggressive with quadruple IV antibiotics including gentamicin. I could share if someone wants to. I...
I am not sure it has been tested in vitro, I think it has some activity. Dr Jaller told me he likes it for bart. But Horowitx says most of his dapsone treatment failures have bart - so its prob not a...
I wouldn't be worried too worried of that as a sign that you are going to be an especially hard case. I think extensive infection dissemination into tissues, high biofilm, and presence of significant...
Def an interesting new therapy. I am def skeptical of it. Success rate seems too good to be true. Interesting it takes so long, but I guess it makes sense. There are def many CFS cases that seem...
Mine has never been high. High VEGF is most associated with bartonella. Bartonella increases VEGF levels somehow while it is infecting the endothelial cells that line blood vessels. Here is a video...
I'm not totally clear ab what you mean by brain hypersensitivity. I also know very little about herbs. It is controversial to recommend benzo's long term as that guarantees some level of addiction...
Lyme Guy, I did not have the best impression of Dr Frid. She is definitely smart, but she strikes me as a bit of a capitalist trying to make as much money as possible. Also, she only does IVIG in her...
Damn, missed it. Looks like all lectures get posted on feb 13. Still have to pay to access, which I did....
Damn, yah Dr Frid told me that she uses a minimun of 1.5 and prefers 2. I didn't even do the math on my dosing. I will probably stay with this dose for a few months and then ask my neuro to increase....
DCD, I forgot to answer ab how my neuro symptoms 'came on.' In short it was a very slow progression, but then a sudden onset of more severe symptpms. I had chronic insomnia, migraines, and internal...
Yah I am going to try that tetra + fluc soon actually. Interesting, I have the same intolerant response after trying rifampin again after my first brain herx. I tried to restart like 5 months later...
The tendon pain actually really exploded while I was on clarith & rifampin. Prior to that treatment I could go on a short jog. I only really had neck pain and plantar fascitis like pain. Dr M says...
DCD, My tendon pain is also everywhere. Poor range of motion, hurts to stretch. Worst in my neck/shoulder/trap area and lower legs. Everywhere is bad tho. A lot fibrotic changes as well which are...
WalkingByFaith, I will try my best to answer your questions. 1. The Cunningham Panel was made to diagnose PANS/PANDAS (which is really a form of AE) by testing for certain anti-neuronal antibodies....
DCD, Your experience of massive neuro flaring from even the slightest antimicrobials seems brutal. Also, I'm sure your strategy of IVIG is a good one and I know you have had success with the...
are you treating bart? When you treat bart you will often get prolonged worsening of muscle pain and neuropathies....
Could def be bartonella...
Thanks I am very hopeful for IVIG. DCD, I agree the SP is limited in his thinking regarding treating. I do think that chronic infection is massively overlooked by mainstream medicine and a thinker...
Interesting about the bicillin, i have never tried it. Mino + rifampin is def strong for neuro bart. I was like 1 thread away from checking into a psyche hospital after that combo at the 3 week mark....
Do you know if Dr K has a protocol for Bartonella patients with autoimmunity? I am not sure if the bicillin is the best drug for this infection....
DCD, I am calm thanks. Glad he sees it as a multifacted illness. I know that I have developed brain autoimmunity, more likely from bartonella. Interesting there are different theories about the...
His text is referring to 10-20% of Lyme patients who then develop chronic lyme. That is the correct way to interpret it i believe. It this the line you see in 95% of academic literature. Thats why I...