Any thoughts?

[Stargazer_Lilies]

Oh, gosh..I haven't been online in several days--either my PMS aggravates preexisitng symptoms, or spirochetes has "come of age"--I went downhill just after the start of fourth week of IV.  I am inclinced toward "it has come of age" (cycle of 3-4 weeks herx?) because I had one old symptoms reappear, and it is not part of my typical PMS symptoms. They are subduing now.  I am sad and braces for phone call to inform me when nurse will come to pull the line. My last dose is tomorrow.

One solace I have is I have the letter from insurance I am approved for rocehpin for the next ten years, and any practitioner can prescribes it for me as along as it is safe for me and as long as I need it.  So I just have to find someone to prescribes it for me!

Anyhow, two days ago, my LLMD's office called to see how I am doing. I told them blah blah blah. Then they say they wanted to talk with my neurologist about extends the IV because I had good response to it. I told them, noo...my neurologist cannot know I am see LLMD behind his back, then LLMD office asked me to come in to see LLMD asap. So I saw him.

For now, he wanted me on doxy as soon as i finish IV and stay on it until next move by my neurologist because it is better than nothing. He says once neurologist is done with me, no longer treating me, he will discuss with me about various ABX options, including more rounds of IV.  I was susprised to hear him suggest IV because from what i heard from other, he is usually focus on ABX, but i guess because he saw what Rocephin did for me.  

Ricobord, I am keeping your suggest of Biaxin on my mind. I am already on Plaquenil for two years, and I am not going to stop it anytime soon, it'll serve as "bonus" for me, on top of whatever LLMD or neurologist prescribes for me. My fingers are too precious for me.

LLMD says it is likely if my neurologist saw improvement with my white matter lesions, my neurologist may order second round of IV. I am cross my fingers for that.

It turns out he neglected to mention he did ordered the test for coinfections to me in last visit.  Only thing he did not test for is mycoplasma. He say it doesn't matter because lyme treatment will cover mycoplasma too.  He does not want to test for CD57 count, says he prefer to treat bases on how patient feels. Does CD57 make any difference?  

I read someplace if one have over 200 at the end of treatment, then relaspe is unlikely. I am trying to figure out in long run how do I know if I am "cured" as I don't want to feel fine, at my best ever, thinking I am cured or in remission, then perhaps during something like pregnancy have it all comes back.

I would like to have something concerte to follow and monitor on top of how I feel-how idea? CD57? Or what?

Here my tests results from blood drawn five weeks ago.
Igenex-negative
IGG-single positive for band 41
IGM-IND for band 41.

Coinfections-local lab:
Anaplasma(HGA)-Negative
Bartonella Quintana-Negative
Bartonella Henselae-Negative
Rickettsia-Negative
Babesia-Negative
EBV-Negative

Any other coinfections I should ask to be tested for?

Thanks for any insights or thoughts.

[Ricobord]

That is absolutely fantastic that your insurance will pay for Rocephin!!   :D
As you said, now you just need a doctor to prescribe it.  It sounds like your LLMD may just be the guy. I hope you feel tremendous relief, even if the neuro won't give you another round.  A couple prominent LLMDs have said that the low end length of treatment with Rocephin for people with a long standing infection is 6 months.  That is great that the coinfections came up negative.  A hidden infection could pop up as the Lyme recedes, but hopefully that won't happen.

[mojogal]

I know you have heard this but oral meds do work and you can come up negative even with IgenX co-infection tests but still have one of them so most good LLMD treat based on how you feel just for that reason. It took a friend of mine 12 times for her Co-infection test to show positive and 4 times for the Cd-57. My CD-57 came back negative but my Bart's positive so my LLMD is treating me for both based on how I feel.
You are lucky your insurance paid at all, many people that I know, their LLMD won't even take insurance. Mine will take it but I have to pay first and get reimbursed. Try to keep an open mind on oral meds. Many ILADS docs use orals only.

[dolfnlvr]

Sounds like your LLMD is doing a better job than you thought originally--which is very good news.  It also sounds like he (she?) is working with you to avoid confrontations with your neurologist and that, for the most part,  is what is prompting the ongoing treatment with doxy for now.  

And, it sounds like you are among the unlucky of us who have a clinical diagnosis with very little concrete laboratory "proof" of infection--which does NOT MEAN THAT YOU ARE NOT INFECTED!!!!  And, if you find an answer to what to look at to determine whether you are "cured" or not, please let me know, as that is something I've been looking for as well--I don't think there is an answer though, sorry.