Amy, Disulfiram, from what I have read from people who are using it, can be really brutal. Please do your own research and make informed decisions. There’s no one way or magic pill for any of...
I agree and I feel sure she'd test positive through IGeneX, however it's expensive and with a diagnosis of fibro she might as well treat....
Yes, including me only to relapse years later. Anyway, Amy, please check out the Disulfiram Facebook groups....
Hi Amy, Try disulfiram. Antibiotics don't cure chronic Lyme and can be brutal in the doses you would need to take. I recommend the Facebook groups if you're going to try disulfiram. Tons of people...
No such thing as autoimmune illness without going into the science which most people on here wouldn't be able to grasp. Also, fibro is caused by Lyme. Plenty of research on this and my very severe...
I do agree with her regarding the mycoplasma. I think it's a little foo foo like the whole candida, heavy metal, parasite, gluten stuff. Not saying these things aren't an issue, but still. She...
I bathed, even used soap....
When I was young and started having panic attacks due to undiagnosed Lyme, the only thing that helped was Klonopin. My LLMD said it's because my panic attacks were most likely being caused by seizure...
You can call me whenever you need to, day or night. You don't need to be alone. I just don't know how to give out my number on here. I also have a cat who I love so much. She is my heart. Please know...
I would get a script for klonopin as a couple of others have suggested to take if needed. Doctors don't like to give it out because too many people abuse it which is unfortunate for those who take it...
Mine went away a long time ago with Lyme and B. duncani treatment. Don't remember how long it took, however, I still have Lyme/Babs and other symptoms. I believe yours will go away eventually as...
Gladly....
Yes Girlie is referencing Dr Ross. I would like to see the source of where he said that about disulfiram. I follow him very closely and I have never seen him say that about DSF and I have never...
Hi Zimica, I can relate to feeling alone with certain symptoms at times. I think probably most of us can. I know it can get scary and lonely, but you're not alone and you'll get through this. Please...
Yep the people at the CDS are sick, evil, ba$tards. I'm sure they send out rabble rousers and that they infiltrate various Lyme groups both on Facebook and elsewhere. I really want DSM to be the...
And as far as the CDC, they would love for all of us to be cured and just go away. They'll just say it was the placebo effect lol. Those bastards....
Yes, in vitro, but now we have a lot of live humans that are reporting in on their experiences. They are not "rabble rousers". They are real people with Lyme. I think there is a lot of hope to be had...
I have a lot of respect for many of these LLMDs and what they are doing, including putting their licenses on the line. The ones who are saying this can say this because they are collectively treating...
I'm just reporting on what I've been reading on the disulfiram FB groups as well as the lastest from top LLMDs. Y'all do what you want with it. The solid consensus in the disulfiram groups with...
The only thing they know at this point is that it destroys biofilm. It could be that your immune system is taking over and attacking the spirochetes now that they can't hide behind biofilm....
Hey Jova/Cygnet, I heard about it in the Facebook groups. Something that was apparently mentioned at a recent Lyme conference, but nobody really knows for sure. It's just speculation at this point....
Thank you UnsightlyCygnet and JovaLyme, I just increased my dose to 62.5 every other day. I think adding herbs is a good idea particularly since there is now talk that DSM may just be a biofilm...
Update: I don't understand why I'm not herxing unless increased anxiety/depression and stupidness counts. I'm not even sure if I spelled stupidness right or if it's even a word..... Where is the...
Rikky, I think maybe they are just scared and in denial. We all want so badly to believe this is the cure, and it may be for some people, but clearly it's not for everyone. The good news is that...
JovaLyme: Thanks for sharing about the abuse. I was also abused and had years of therapy. Still, I find it hard to trust older females. Thanks mom. I also have a major increase in pins and needles...
He had an Igenex FISH test. Doesn't get much more accurate than that and is often or at least it used to be sent out to the Sonoma County Health Department for testing. It might be an in house test...
No problem. I know that having this awful disease puts you through some kind of living hell and makes all of us a little aggravated at times. I've blown up on here before myself. It's to be expected...
The United States isn't much good for Lyme treatment either unless you are loaded. I've always wanted to live in England.... so jealous. I want a little home in the countryside, but not far from...
Oh only 3 weeks of doxy. Oh boy. Ummmm. Well, thanks for being our guinea pig anyway. Nice knowing you... No just kidding. It probably won't kill you. Don't forget to get your liver tested....
I hear you. The rabbit in me wants to increase it much more quickly and knowing me I probably will. My original plan was to take 50/week for a couple of weeks then go from there but I didn't stick to...
I haven't been on standard Lyme/Babesia treatment for over 10 years and am now on disulfiram. I was one of those perma herxers. It just didn't seem to end and probably even caused some damage. My...
Looks promising for microti. Will be interesting to see the results from the testing at Stanford....
JovaLyme, not "countless" members, really usually just one or two. And not really thinly veiled either. Pretty blunt really. It's just my opinion anyway. Everyone has their own opinion. I'm sorry you...
I hear you. I generally do get that sick but not really fatigued either though sometimes sudden periods of fatigue will hit. Thankful for the moderators that keep posting even when/if they don't...
I understand but don't go too quickly. I've been there and done that. Not a good idea as tempting as it is. My favorite story when I was little was the one about the rabbit and the turtle. I always...
Lol, yes this DSM is definitely getting into my brain....
Hey there, I'll be upping it next week to 62.5 every other day. Tempting to do it sooner but I'm going to try to stay at each dose for at least 2 weeks to be safe. I should add that I also feel angry...
Thanks to those who responded to my post in section 5. Update: Not much to report. Pretty bad left leg pain. Still at 62.5 every few days. Oh and I think I might be kind of wired....
Some people are saying that it's hitting it, but they don't even know if they have babesia for sure. Really sorry if this offends someone. They may have it. They may not. Sweating, head pressure,...
This is interesting. I wonder why it is? Hmmm? Different coinfections with different life cycles maybe, allergies, .... I just restarted crypto at 100 drops three times a day. Maybe it's too much....
My order is at Customs in San Francisco right now. Kind of excited....
Anyone else feel worse in the Fall? Seems to happen to me every year since being infected like forever ago....
Nope, haven't been treating for 20 years. Not even sure if I still have an active duncani infection as I no longer have head pressure or some of the other issues I attributed to duncani. I know I...
HI Jova, Yeah I was one of the first documented cases of B. duncani. I was treating many years ago but my insurance stopped paying, I ran out of money, etc... You know the story as so many of us have...
Hey everyone. I've had Lyme and B. duncani for about 20 years now and recently ordered some disulfiram. The thing is I've been hearing that disulfiram hits microti but not duncani so I'm bummed....
B. duncani for me. Though I think it was more of an air hunger thing in my case like I was on top of a mountain or something....
Thank you Yogi, Lexapro saved my life in the beginning but it made everything so much worse for like the first 4 weeks. I'm glad I stuck with it though. I was having trouble sleeping and not really...
Hi I also take a small dose of klonopin and am determined to get off of it even though my anxiety is much worse lately. I heard it's not good for the brain. I take half the normal dose of Lexapro for...
I feel like Lyme makes me stupid and then stress/worry over being stupid makes me stupider. In my case I think my fear is my worst problem, but then I guess anxiety is also a symptom of Lyme. I...
Yeah I definitely think I need to go back to the lower dose, thank you. This forum has been really helpful. I just wish I could stop the anxiety. I would give anything to get back on IV Rocephin....