stay on ABX or wait.

[gibsongal]

as i wait for igenx tests, i asked the new MD doc llmd?  if i should be taking more abx as i just finished ceftin and plaquinil he prescribed


he thought doxy and i reminded him i did a month of that in june prescribed by my other ID doc.

then he said flagyl. sounds strong, and i do enjoy a beer on saturday night.

any thoughts.
i think i have  Barts because of the incredable bone and joint pain and low temp.. lowest was 95.5 in the beginning of Aug..now i am at about 96.4 97.1

any thoughts.
should i wait as i think Barts is treated with erythamysin sp?

i felt good on the plaquinil and ceftin. 30 days.  1st 5 -6 days i was slowly getting energy back and expelling foul excuse me, diareah like i never saw and i have had some doozies!   then 2 weeks where i felt REALLY good. then a bout 5 days really bad, and the rest not so bad. i can even fold laundry again although my fatigue is coming back..

[gibsongal]

yeah thanks everyone!

i thought the Erythromycen,,,  if it is Barts. i think so.
I will see what the MD says when the tests come back and i will drill him with the abx questions. I only met him once but he is supposed to be Lyme literate.

I have to call  a woman I know who went to a different LLMD, although it is a far drive. Will find out about that and insurance.

My ID doc def said he "treated me for Lyme" when he gave me 1 month doxy , but i have it bad and painful for a year. he also said "you don't have Lyme" that he is an expert, professor yada yada..he treats my HIV and hepc. he kept telling me it was the HEP C..well i felt tons better on ceftin and plaquinil so it is not that virus! my liver is good and i take care of myself. too bad this mystery is happening..

we will see about the tests. what if they are negative? test again? and again?

oh i hope Igenex can tell me something...another week or so...

I took doxy for 30 days and went right into  combo ceftin and plaquinil for 30 days so i can give my body a break from the abx until the tests come back.

[Ricobord]

If your symptoms are worsening again, then that means either the Bart or the Lyme or both are still there.  Erythromycin is a first choice for b.quintana, but for b.henselae the first choices are rifampin or levaquin. A short end treatment is 3-4 months.

I personally wouldn't go back to the ID doc. They are indoctrinated to believe that once they have given you a month of abx for Lyme, you are cured. In fact, they can experience serious consequences if they violate the IDSA guidelines. It is unlikely you will convince him otherwise.  Other docs aren't beholden to the IDSA, so you can sometimes find a mainstream doc who isn't so rigid and will actually treat you longer. An experienced LLMD is your best bet.

I went through 12 docs before I gave up and went to an LLMD. (If I count the MS specialist, it's 13.). It is very disheartening to realize how much doctors don't know.  In the case of Lyme, it is just ugly, as the "authorities" who are supposed to be the experts, refuse to admit they are wrong. They prefer to perpetuate old opinions as if they were scientific fact than acknowledge that their treatments aren't working for a significant segment of the population.

[gibsongal]

I think i am going to wait for the tests to come back. for some reason flagyl scares me as i take other medications.
I am very leary of docs now and what they prescribe after what i went through the past year..7 docs, no diagnosis or false diagnoses bad meds for fibro that  i had to get off of that hurt your kidneys..vision etc.
i feel i should not have to do so much research to be comfortable with a prescription!

When my tests come back i may seek a second opinion (8th) if i can find the other llmd here,or go back to my #1 ID doc, or talk to my present ID doc. although he said he treated me for Lyme and that i don;t have lyme.

wait for the tests..
i may refill the plaquinil  as it has a refill and take that.
i only took it a month.

my vision has been screwy for about 6 months. i was on Lyrica for 5 months..

[mkh9]

I will just add that if you take plaquenil for very long you need to have your eyesight monitored. My friend went blind from using placquenil for her lupus. It effect the retina. They have other drugs they can give you for bart and babs etc. I think the diarrhea is a side effect of one of the drugs. Probably plaquenil. Have you seen a good LLMD?

[mojogal]

Not medically trained but before my igeneX tests came back I  followed Burrascano protocol of doxy, then Flagyl, then off a week, it was a rotation but you can't drink with the Flagyl.

If you think you have Bart's I would stay on meds because a month will not cure anything. My igeneX results came back positive for Bart's the first time. I went on levaquin with minocycline but had to stop the levaquin because I got tendinitis.  Most people dont get it. Then the second round from igenex showed positive for Babs so I am now taking malarone, Zithromax and minocycline.

Flagyl is a cyst buster so it's good to take until results come back. You may have some herxing but that means there is a die off. Which is what you want.