New, Interesting Twist Just Adds to Lyme Confusion

Some old forum posts on Borrelia Miyamotoi can be found at https://bit.ly/3f0evjx

This strain of lyme has been mentioned bt lots of.ppl don't have much info on it or talk about it. I heard before they didn't know which meds to use bt then said doxy was effective as it's very similar to other strains of borellia. As for herbs or buhner protocol idk haven't read anything. If anyone has heard of any herbs will someone pls let me know

runningwild - hoping for the zith to help you. Can you add doxy to it (they are a good pair for “regular” lyme) ... or is doxy hard in the kidneys?
.... or perhaps two abx of any kind would be too much?

Hoping you can get some sustained improvement.

I tested positive for b miyamotoi last year when I visited Columbia Lyme. Test was run by Imugen lab. Evidently, miyamotoi is more common in California, where I am, than is Lyme.
It's really too bad more folks are not tested for miyamotoi ... especially those who have some Lyme WB bands positive but not enough for a CDC positive test. I think I remember Columbia said their is cross reactivity between the two.

running wild, Columbia suggested 8 weeks of Doxycycline 200mg twice a day and if that did not work, Ceftriaxone 2 grams daily via IV. Both Columbia and my LLMD recommended against the IV route because of infection and clot risks.
I did the 8 weeks of Doxycycline and saw no benefit/improvement. LLMD has had me on different combos of antibiotics since. In total I've been taking different antibiotic combos for almost 4 years. Some days I am able to go for a walk. Still gimpy and tippy but joint pain is not too bad.
In 2018 I felt the best I've felt since this all began many years ago. There were only a couple of months in '18 that I didn't feel almost "normal". This might sound odd, but going through my notes I noticed that in the spring of '18 a doc had me taking pretty high doses of Vitamin D after a very low test result. The Vitamin D was the only change at that time. So ... about 6 weeks ago I began taking 2,000 to 3,000iu of Vitamin D daily. It seems to be helping with joint issues.
When this all began I had unbearable headaches and neck pain, high fevers that came and went, drenching sweats and chills, migrating joint pains, and the dozens of other symptoms that these nasty buggers cause. Years later when finally tested by a rheumy and an ID doc, tests came back positive for Lyme, Bartonella, and Ehrlichia. Both docs told me they had to be false positives as "we don't have Lyme and Ehrlichia here". Same old BS.
Evidently, TBRF/miyamotoi, etc cause significantly worse headaches and neck pain than Lyme. I'm thankful Columbia tested for miyamotoi. I've since tested positive for it through Igenex, as well. Unfortunately, because it was first diagnosed in the U.S. in 2013, there is still little known about best treatment options, so it is usually treated the same as Lyme.
I had a CDC positive Lyme test in 2017 which I think has helped me with some doctors.
There are probably many tick borne infected folks out there without the CDC positive Lyme test who, if they had the benefit of further/more detailed testing, would find they have miyamotoi or one of it's close relatives. It is such a shame that there is not a greater awareness of the possibility of miyamotoi infection. Think how many people could receive adequate treatment as a result.
Sorry to have given such a long winded response. Glad to hear your recent antibiotic combo is of some help.
I plan to ask my LLMD about trying the Horowitz dapsone protocol. I've heard many folks are not able to tolerate it, but at this point I'm game for just about anything.
Hang in there.

I recently got diagnosed with miyamotoi also.

I just started the Horowitz protocol. The dapsone I didn’t start yet. I had to get blood work first to make sure I am a candidate for it. There was some kind of gene that the dr had to check for. It’s a g6pd test.
I hope this protocol works fast because I’m at my worst.

Mareish

Thank you. Will do!!

runningwild, I, too, have had stomach issues with doxy. Very common problem. My llmd prescribed a doxy that has an ingredient to make it less hard on stomach. Unfortunately, I don't remember the name.
The doxy I took after Columbia visit was not the same as prescribed by llmd, and I think that is why I had greater difficulty with it.

Thanks, mareish. I had not heard of that and will check with doctor. I'll also make sure it is still good on kidneys. Do you ever still get headaches/stiff neck?

That is what throws me - there seems to be no answer to the stiff neck and migraines. That leads me to believe there is also something else at play, like autoimmune or kidneys. But I am glad to see your neck stiffness and headaches have stopped. Always good to see when someone has something positive happen.