I know we’re supposed to separate the antibiotics with our regular probiotics by 2 hours. I was wondering if the same applies for saccharomyces boulardii?...
Yes, have tried, unfortunately never does much to help...
I have this headache symptom during treatment, it can last for weeks at a time. It’s throbbing, pulsating, and pressure mainly in both temples. Ive taken many migraine meds, but I’m curious if anyone...
Right, I figured this wasn’t an easy question to answer. I know we can’t measure accurately a lot of things about this disease once it’s in our body. The immune deficiency angle you bring up is...
I’m confused on this subject, since different sources say different things about if the bacteria remains in our body forever or not Does our immune system learn how to keep it suppressed after abx...
Just responded to your first email!...
Would you mind if I emailed you? Sure let me figure out how to show my email again 🤣. I typically use my wheelchair when I leave the house. I just stay mostly bedridden when home. Thanks! Haha...
Would you mind if I emailed you?...
Do you mind if I shoot you an email?...
Thanks for this I’ll check it out...
I’m wondering if anyone who has been dealing with severe chronic lyme here has been debilitated so severely that they have to use a wheelchair currently? I’ve had to use a walker sometimes in the...
I’m seeing a neurologist soon and I haven’t heard of that med so will definitely ask them about it, thank you...
Thank you for this link. I am seeing a neurologist soon but it’s helpful to have other options...
Interesting info, thank you, gonna have to read more into these. I have had CT and MRI of brain. I am in and out of aggressively treating Bart as well....
Yes, been through lots of things, trying to find something to point the finger at or numerous things. Im biologically male and these headaches really came out during heavy bart and babs treatment so...
I am a patient at JSC, so i am actively working with him/them to work on this problem, pain is certainly a huge issue...
I get them in my temples on both sides, on the top of my head, the back of my head, and sometimes the forehead. No neck stiffness....
Thank you for your responses, I do take diamox which does treat Intracranial hypertension, so my doctor dosent feel the need to pursue that route to check on that. I take nattokinase daily. I haven’t...
A question for those of you who have dealt with debilitating headaches, Occipital & Trigeminal neuralgia I have cycled through neuro drugs typically used for headaches/nerve pain. The pain and...
Bump...
Under our skin certainly opened my eyes to the possibilities a documentary can have on the Lyme community. I believe there is plenty of more that can be done through a documentary. If you’re in the...
Thank you! I appreciate that, I do hope it can make a difference, I’ve been working on the documentary for some time now. It would be good to bounce ideas off of others in the community so I’ll be...
Thank you for the response! Unfortunately, I’m only going to be doing in person interviews for the documentary. I would still love to chat over email if you know of anyone who you think would...
Hi y’all, I’ve been a member on this Lyme forum since 2017 and got pre approval a while back to post about a Lyme disease documentary that I have been filming. I myself have been through almost more...
They have patients sign a form saying they wont share protocols but some of the drugs I took during Bart persisters have been Rifabutin/Rifampin, Cipro, Omnicef, flagyl and Bactrim. Thats as far as...
If you’re chronically sick with Lyme and Co, the effective IV treatment you’d want to do would be with multiple antibiotics and regular MDs would rarely if ever prescribe that. I had to do IV for 7-8...
While I don’t have good recommendation for a quality LLMD in NYC I can tell you of a few to stay away from who charge outrageous prices, without using up to date, effective treatments. (I’ll include...
I’m referring to the recent hype around the medication due to Horowitz’s protocol, I know it’s been around a while and is helpful along with other abx. The hematologic side effects of dapsone and...
I think the potential side effects and sometimes lasting side effects scare a lot of people away from disulfiram. I looked at much of Leigner’s data as I tried disulfiram. It’s a pretty harsh...
I second what Girlie said, you should seek proper treatment for Babesia, I never made lasting progress until I treated babs first...
Yeah my best guess is he’s seen better results with the Bactrim in recent years, some things do change and evolve in his plan as you know and treatment methods...
I had asked Dr. J about a month ago about if I was going to be going on Dapsone at all and he said no since I can take Bactrim. He considers Bactrim superior and said if patients have a sulfa...
In my opinion and (others), these tick infections bring out the worst in our bodies. There are two genes responsible for DVT's, but Drs dont care since they cannot change your gene code or response....
I've been tested by IGeneX, and I have NO suspicion that they are simply offering positive results. The NY State Health Dept., I believe I'd heard, has approved of IGeneX, for certain Lyme testing....
You've been provided some very helpful information from other members on this website about the issues with the CDC regarding Lyme disease and the presence of Bartonella in ticks…I also believe it’s...
I used to have a lot of issues with neuropathy, especially during the time I saw this doctor who was ordering the tests for neuropathy. The emg showed was positive for neuropathy and they used that...
You highlighted an increasingly frustrating part of all this, because it’s very hard to trust doctors, especially after going through the Lyme circuit I had “Lyme literate” doc diagnose me with small...
It’s a herx, flagyl rocked me in the beginning and still does hit me somewhat hard nowadays but it is much more tolerable, seeing the progress, understanding the improvement, and realizing that the...
yes but you use them for many cycles, its part of the grinding and long term progress of breaking up biofilm throughout much of treatment. So in the whole concoction of meds you take at JSC, its...
Been using Xylitol + lactoferrin combo for a while now, seems to be the strongest, 500 mg of lacto and 2-tsp of xylitol but I didn't start these at such high doses, slowly progressed to them...
Sounds like she could’ve been put on maintenance too soon! Or not, but several months and then maintenance sounds early compared to most that go there...
How long was your total treatment at JSC? And did you experience pain during babs treatment? Pain is a really broad word so I find it applying to many different symptoms with Lyme + Co...
I think watching under our skin like several others have mentioned here would be a good idea, I was very confused at the beginning of my illness and even when I began proper treatment, the...
Respectfully, I must disagree. It's not realistic to say that enduring short-term pain leads to Lyme Disease remission. I've met people in the Lyme Disease community who have gone through even more...
I Would recommend taking Pepcid complete, not Zantac, Zantac never helped me and sometimes made the gerd I had a lot worse...
I know of patients at JSC who were Covid positive and told to stop Lyme treatment until after covid, you should call them about this...
I remember seeing your original post about the issues with that office and their fees, I hope the new doctor you’re seeing will bring you good results through treatment I’d also recommend looking...
IVIG was a temporary help for me, I compare it to disulfiram as they both were band aid treatments for me that only helped while taking them and then when I stopped I lost all the progress I had...
Dr. J does not do IVIG, in fact he told me to stop IVIG when I started treatment with him...