How long have you had Lyme?

It sounds like people have been dealing with Lyme disease and it's co-infections for years and years, sometimes 10 years. Why isn't everyone on Disulfiram? Does it not work for everyone? Does it really kill the persistent Lyme, what about any other co-infections? I understand that Disulfiram has only been used for Lyme disease for a short time. Can someone clarify all of this for me? Thanks.

I got sick with Lyme from 2005-2007 and then again from 2016 to present.

I am not on disulfiram because I am very prone to side effects and strong herxes, and people much sturdier than I am have been floored by disulfiram. To me, it's not worth the risk. There are many members here who have had some success with it, others who saw improvement but couldn't handle the herxes and had to stop, and a few who didn't notice a difference. There are many threads about it here if you search.

How is your mom doing?

My body crashed in 2011 and I was bed bound off and on for months/weeks at a time. I had severe digestive/weight loss, neurological issues and POTS. I finally found out I had lyme (I suspected it but finally found a dr who would get the tests done) in 2016. I was exhausted from dozens of docs who thought I was psycho. I started herbal treatment immediately after dx and continued it for 4 years, having to take many breaks due to severe herxheimers. My lymphatic system just couldn’t detox and I had horrific psychiatric episodes with herxes.

I believe HeartsinPain is right, our bodies gradually get more toxic, for me, it took 10 years of mold, lymph, coinfection building up and up and then add trauma of losing two little brothers in an accident, dozens of food allergies, etc. pretty soon you just have a boatload if issues.

As far as the disulfiram I have never my whole life been able to tolerate any “hard core” meds and even pass out with Valium and super low doses of things. I’ve always had to take the herbal route.

HeartsinPain said...
Only about two years. One thing I have been wondering is do these infections and coinfections all come into your body at one time or do these viruses and bacteria add up over time? For example I had maybe five coinfections, did I get one ten years ago and then another three years ago? I believe there is a boiling point where our bodies are to full of these infections to be able to handle things. What do you all think?

I have wondered that, too. I suspect I have pick up different ones at different times and it all converged into a perfect storm at a certain point, likely due to outside factors like a flu shot and possible biotoxin exposure in my case.

I had Lyme when I was 12 and "recovered" with about 10 days of Amoxicillin. Started noticing minor symptoms in 2010 (about 26 years old) that were different from what I had when 12. These symptoms gradually increased until very severe in 2018. Still struggling but the struggles seem to have revealed that Bartonella may be the cause of most if not all of my symptoms. Lord willing, things will begin to improve as I focus more on Bart now.

I do think the Bart has become more "intracellular" since stopping treatment too soon in 2019.

I have never tried disulfiram.

And YES to the boiling point question!

https://rawlsmd.com/health-articles/chronic-immune-dysfunction-lyme-disease

Thanks Saraeli!

July 2015 I was out in the brush in a local State Park doing research for a summer university class. I found the tick on me 36-48 hours later. Initially, I had a bad acute reaction that sent me to the ER in Nov 2015.I got on Doxy Jan 2016. 2016 was mostly a mild year, illness wise, for me. It wasn't until the holidays in 2016 my illness started to get much worse. Another ER visit sent me to my LLMD in Jan 2017. I hung on to my demanding career until May 2018 when I simply couldn't "power through" anymore. Disulfiram has helped me. Albeit, very slowly.

I haven't started DSF yet. I'm going to try to get laid off before I start. I'm hoping 6 mos of treatment will do it. I always have severe herx, so that should be a pretty rough road I'd imagine.