I have had lyme for 2 1/2 years now and wanted to do a detailed testing now to see what my blood shows before my wife and I try for kids in 10 months or so(crossing fingers). I told my LLMD this and...
https://ibb.co/MBmX9gz Got it, thanks. See the attached link for the photo. Super hard to understand, I'm assuming only people that have had this test done before are the only one's that would be...
I don't really have that many symptoms of SIBO. I was on and off nauseous for week or so when my stomach first started to bother me two months ago. Only other things I've really had were stomach...
Just had a Genova Diagnostics, GI effects Stool Profile done and it is very hard to understand. I don't have an appointment with my doctor for 2 1/2 weeks so was seeing if anyone has any insight on...
Keep you head up, it will get better. For me once I was approaching the one year mark I was really starting to get down mentally as I felt I would never get better. Shortly thereafter I really...
Thank you both for the comments this falls in line with what I've read. For now, just going to try and eat extremely clean and stay away from coffee for the time being. If it persists then will look...
I treated with a lot of antibiotics in 2019 and for the past year have treated with just supplements and herbs. Was feeling a lot better, but the last 2-3 weeks I've had some nausea and stomach...
100% people get better and don't come back here. Once you start feeling better why would you come back to the message boards about the thing that made you feel like crap? I come on here maybe once a...
Appreciate the input. I have asked my LLMD and she said she would have her get on correct vitamin protocol 6-12 months ahead of time to make sure she has proper nutrients etc., but that would be for...
Yes, seems like most of the literature on the subject say it's definitely possible but more tests need to be done to confirm etc. After searching previous messages on this forum it seems like most of...
I am still treating with herbs and vitamins mostly and I'd say I'm about 85-90% back to where I was. (Bit in July 2018 and started treating in October 2018). My wife and I are hoping in a year or so...
I think it was a couple months later is when I started to feel better. Then gradually overall each day gets better. Personally I don't think it was the disulfiram that made the big difference, but...
I come on here very sporadically, but at the beginning of my journey I would come on here a lot more hoping to read success stories. I am by no means 100% yet but I definitely am feeling a lot closer...
I’m Defitniely a lil itchy sometimes so that could be related to the MCAS I’m sure...
Iv introduced these supplements (one every 2-3 day) histamine block artemesia trycline mastica 5-HTP B-Complex Plus Mag Glycinate SAMe Saccharomyces Boulardii probiotic I also was taking histamine X...
I went on a low histamine diet the last 4 weeks after having my MMP-9 level come in at 550. My results came back in even more elevated at 860. I was adding in some new supplements this month but was...
Yes I think that was the one. Anyhow based off the low amount of responses it appears people may not be getting tested for this which is kind of surprising to me....
Hmm sounds like he just wasn't aware of this test. I forget what he said he was using to test for it but it started with a T....
Just spoke with my doctor and he said he has been testing me the whole time for possible MCAS but with different test. This MMP-9 is something that is relatively new and he just heard about it a...
After 13 months of treating my doctor tested me for MMP-9 for the first time. My level was 540 which indicates I could be dealing with MCAS. I don't really have any of the symptoms associated with...
I would Defitniely start a Facebook page for your yourself and join the group if you’re going to start dsf. Having more knowledge as you go along will be much more benifical for you and there are...
Ya not so sure about that..overall I was better off before dsf.. hard to know if the drug made me feel worse due to reaction to the drug or not but my gut was telling me that it wasn’t really working....
Update for anyone interested.. I started dsf 3 and 1/2 months ago and was on 500mg does for 60 of those days. I was on abx for 9 months prior.. sadly for me I don’t think it worked. Overall I am...
Just giving an update: I know some were surprised that my doctor had me on other abx while also the disilfuram. Given that most are reporting to stop all other abx he has now changed tune and decided...
I don't know if you would want to use me as a guideline. I'm more so at a crossroads myself on what to do next. I've been on the disulfiram for about 3 months now (in total only about 50 days at the...
Just giving update for anyone interested I just finished my off week and I don't want to jinx it but I'm feeling very hopeful the difulfiram is working. The last 3 weeks I was on the disulfiram (500...
Wanted to give update on where I’m at with disulfiram I’m approaching my week off abx and have been taking disulfiram for a little over a month and half now. Originally I dropped down from 500mg to...
That’s a good point and ya it’s possible this could be a bad die off. I worked up to 500mg after 3 weeks and after being on the 500mg dose for 1 week and feeling so fatigued I came back down to...
Always good to here other people updates with the drug. For me I'm about a month and half in on using disulfiram (only total of 20 days on the full 500 mg dose) and my response has not been the same....
I've been back on the 500mg a day dose for the last 9 days and plan to keep going with 3 week on 1 week off protocol. (at least as far as I know). Overall I'd say this drug still hits me harder than...
No, it was based on how I was feeling. I ran blood work today, which is first time since starting the disulfiram, so I'll see if the disulfiram has affected anything as far as blood work soon. I...
Disulfiram Update: I've been taking for 4 weeks now. The last week I went back down to 250mg from the goal dose of 500mg since my doctor believed I was pretty toxic (note: he said he was more...
Honestly, the past 3 days i haven't even taken it (on my off week) and I'm still a lot more tired than usual. Normally I would get 7-8 hours of sleep but lately I'm sleeping more like 10 and still...
Update on the disulfiram: I took for about 20 days so far. The last 7 days I was at 500mg per day. Tough to tell exactly what the effects my body is having just off of this drug but definitely would...
Not real sure, but with all my abx and herbs my LLMD had me work my way up to goal dose. Normally it would only be 2-3 days of taking half dose to see how my body reacts but with the Disulfiram he...
So far I’ve been fine. Definitely feeling it I think but nothing crazy. Ironically today I am super beat...last 5 days iv been at 375mg and tomorrow I’ll up it to 500mg a day. I think my body...
Ya I usually do 3 week on 1 week off the abx protocols. With all the antibiotics my doctor always has me work my way up to the goal dose. With the disulfiram he has me starting at 125 mg and going up...
Just started taking it, today will be day 5 on it. I'm 8 months into treatment and was feeling better but was plateauing a little bit so my doctor stopped minocylin, mepron and flagyl and replaced...
I suspect lower level LLMD's aren't going to deviate from standard protocols. I think my LLMD, being at more of the forefront of lyme (at least around northern VA) is able to adjust treatment options...
Ya I’ll be taking Zithromax rifabutin and disulfiram all during the same week. I’ve been treating all 3 b’s the last 3-4 months and for me I don’t think iv had crazy herxes. Sure seems everyone is so...
I'm still taking zithromax M W F and now will be taking rifabutin everyday (before I was taking it Tues, Thurs, Sat) away from days I was taking mepron. Still also taking artemisinin M W F. So...
To start just 125 mg a day and gradually increasing to goal dose of 500mg a day daily. I didn't suggest anything, he just said we need to switch up. *he anticipates me being on it for 2-3 months...
I'm at the 8 month mark of treatment and my doctor has me stopping minocylin, mepron and flagyl and is now replacing it with Disulfiram. I recently read a report that it might work for lyme and...
https://cleverleverage.com/infrared-sauna-reviews/ this guy did bunch of reviews to see what the EMF actually is of the saunas. If you're on a budget looking for a portable one he says this one is...
Ya, I'm stopping for now as it is expensive. I think it did definitely help so I will be doing it again before I'm done treating but I just want to make sure I do it at most beneficial time. For...
I don't post here much but do usually look on here once a week or so. I've been treating for exactly 8 months and have seen some slight improvement but anyone who has dealt with this knows how hard...
I have been doing the hbot oxygen therapy the last 4 weeks for a total of 20 sessions. Today was my last session and am still not sure if I should continue another 20 sessions or take a break for a...
I'm in very similar situation to you i think. Bit early-mid July most likely and didn't start treating till 10-12 week mark. My LLMD knew right away I had babesia. (tested positive for...
I am on antibiotics plus herbs and other vitamins for detoxing etc. I believe we caught it semi early as I most likely got bit around 10 weeks before starting treatment. I used to smoke maybe 5 times...