1) How did you treat for Lyme (what you took, for how long, dosage, etc. Abx, herbs, "alternative therapies" whatever)

2) Did you treat for coinfections? Which? (same details as 1)

3) What other adjunctive treatments did you do? Like for yeast, heavy metals, etc. (that is, tx not related to a specific TBD, but part of wellness)

4) Did you quit treatment before the relapse? If so, for how long? If not, how long did you feel well on tx before you relapsed?

5) When did you notice relapse? Sx only, or confirmed by tests?

6) What are you doing now? LLMD comments, etc.

If anyone can think of more helpful info to know, please say so.

For me:

1)Treated for LD with the full range of oral and IV abx, long term. Most recently before the relapse, did IV Rocephin 5 mo, Flagyl 5 mo, then 6 mo. of Zhang's full LD protocol with artemesinin. Before that, did combos of zith, cefzil, biaxin, erythromycin, IV doxy 6 mo -- on and off for years. Had several periods of recovery lasting 6 -10 mo.

2) Only treated coinfections incidentally to LD tx. Never took anything that would have affected babs or bart, if you don't include the Eurpoean babs tx of Flagyl and zith.

3) Treated for yeast with diet, nystatin. Treated for H difficile and H pylori (big help). Exercised 3-4 hours a week moderately to vigorously until the last 2 years.

4) Noticed relapse about 4 months off Zhang's protocol (about 10 months after stopping abx). Neuro sx (cognitive, mood, memory), very tired. Got a small neck/head tremor, arthritis back in hands and feet, headaches, massive insomnia. The neuro stuff is what put me away, though.

5) Had been getting progressively tireder over 2 months, but the neuro stuff and fatigue really picked up speed the last 2 months I worked. Sx -- my blood tests are always negative or very weakly positive.

6)In Feb, started Bicillin for LD, 2 1.2 units/wk; did 6 mo mepron/zith/art; am doing heavy metals detox, liver flushes, saventaro, artemesinin, antioxidants (I'm staggering these tx). Pretty much the same for the hubby, but he's also being treated for Bart with Levaquin. Just putting together an ozone sauna.

I was never treated for coinfections because I tested negative (although I had many symptoms of Babesia).

Pitnum, my doc treated me for babs based on sx alone. Maybe you could see what artemisinin does for you? I started on it before seeing the new LLMD, and had such a strong response to it that he prescribed mepron/zith as well (as well as me reporting sx).

And there's always Rife. Nice to have that idea in your hip pocket.

While on orals, relaspe at that point was a two tier process. Neulogically worsening on some symtoms (disorientation, loss of feeling on left side of body, frequent mild heart block, pain plus other stuff) while simultaneoulsy improving on others, headache, vertigo, stamina.

Stopped all ABX on recomendation of one of the countires best ID doctors (yeah right...). Started to get all the original symtoms back in about 2 weeks.

Restarted ceftin+rulid but went down hill from there. Restated IV ceftriaxone 1 year to the day that I had stopped it. It helped and slowly diminished the symptoms. Major improvement after adding mepron and flaygl while still on IV and continued to improve from that point on.

While still on IV, stopped mepron and switch to rifampin + biaxin. Started to relapse with babesia. Most significant symtoms in this case where very worn out feeling and loss of stamina + muscle spasms, recurrance of headache, reduction in feeling in left side of body + re-occurance of periodic AV block, sweating etc. Then switch to Ketek + IV ceftriaxone, babesia symptoms still increased.

Still while on Ketek + IV, restarted mepron and now after 1 week, the above symptoms are significantly diminished or gone. Still have the other symtoms though, still go through cycles of neurological impairment + overwhelming afternoon sleepyness. Next I guess will try to stop ceftriaxone IV while still on mepron to see what happens.

Summary;
Started with IV ceftriaxone (1 month)
Relapse on ceftin+flagyl+rulid (after 8 months)
Improved after IV restart (took 7 months)
Improved a lot with babesia treatment (took 5 months)
relapsed after stopping babesia (over 3 month period)

Improved after restart of babesia treatment

IV ceftraixone has been constant as base treatment for the last 11 months,

Thats it for now.

did you do the rocephin & flagyl at the same time?

Can you get a direct examination of your blood for babesia & other protozoa rather than test for the 2 out of 13 or whatever species that could effect humans? Blood is best collected at finger tips than by vein from what I've read.

Can you get tested for ameobas? Just some thoughts....

I relapsed while doing 400mg doxy, but it could have been that the different generic I started to use was less than 100mg per tab. I just finished 4 weeks 2 grams rocephin with 2 of those weeks with flagyl added in. Have 20 days of ceftin and tinni as a follow up. Then if I relapse I don't know what I'll do.

1) How did you treat for Lyme (what you took, for how long, dosage, etc. Abx, herbs, "alternative therapies" whatever)

Was on amoxy, then clinda and quinine and then rifampin over the course of a year. Went to doxy for three months, LLMD kept saying herx, wouldnt switch the meds. I relapsed BAD.

2) Did you treat for coinfections? Which? (same details as 1)
Yep babs and bartonella

3) What other adjunctive treatments did you do? Like for yeast, heavy metals, etc. (that is, tx not related to a specific TBD, but part of wellness)
Rife, sauna, some mild detoxing

4) Did you quit treatment before the relapse? If so, for how long? If not, how long did you feel well on tx before you relapsed?
Nope, I was on meds when I relapsed. I felt pretty darn good on amoxy , completely normal then my meds got goofed around.

5) When did you notice relapse? Sx only, or confirmed by tests?
After amoxy was pulled ( six months into treatment) and other stuff was added. Nothing for lyme was added for 8 months, then it was doxy and that surely was NOT a herx.

6) What are you doing now? LLMD comments, etc.
Not treating coinfections. I cant go off lyme meds and just treat coinfections. I should have been treated for coinfections AT the same time as lyme. Not a drop and switch kinda deal. According to my bloodwork, and PCRS, lyme is in my tissues, and not in my blood. Biggest problem was LLMD kept putting me on meds that are blood serum abx, and not tissue penetrating drugs.

I was put on tissue penetration drugs, and within two weeks flat gained back all of the ground I had suffered in 8+ months. I felt GREAT. Stayed that way for three months, was out living again. Became allergic, now off to zithro more than likely to get into tissues, hopefully.

One really has to pay attention to the bloodwork. If you keep pulling negatives out the wazoo, stop taking blood serum concentrate abx. The infection just isnt there! Go for the tissues instead.

What are the drugs of choice for Lyme in tissue?