LLMD Visit and Update

So I didn't have a lot of confidence in my LLMD locally because even there is Lyme here, it's not prevalent. Even though we caught the Lyme early and I had treated with 3 months antibiotics, I still had some persistent albeit minor symptoms. My symptoms were always minor but I was bothered that they lingered and worried it meant an untreated co-infection or active Lyme infection.

I decided to travel to Dr. J clinic in DC. I really liked them and their rationale for pulsing antibiotics in order to let immune system learn to fight the fight made sense to me, but I'm not a doctor or scientist. The PA agreed that it sounded like my family did actually only pick up Lyme in our August vacation but they actually feel that most people were exposed to Lyme long before they felt sick.

She also addressed my question regarding whether it was an active infection or residual damage from the Lyme honestly and said they don't really know. She said they can't really know unless I herx on antibiotics or perk up off antibiotics which didn't really make a ton of sense to me.

She seemed to think my case is relatively mild and said at first when reading my file she thought she might just watch and wait, but upon examination or I guess talking to me, they did decide to go ahead and put me on 3 cycle of antibiotics. I'm basically taking 3 antibiotics MWF for two weeks and then adding Flagyl in on Th/F of second week and two weeks off.

She said she would probably push me through a co-infection cycle afterwards.

She asked me to stopped the herbals I had been taking and most supplements, but gave me a list of their own supplements. She said herbals are fine ultimately but they just wanted to isolate any negative reactions I might have to their treatment. So for two weeks, I was not on anything and I honestly didn't feel worse and my arthritis actually improved a bit which kinda of confused me and made me wonder if maybe I am just dealing with post-lyme syndrome.

Anyhow, I didn't go ahead and start the antibiotics and I'm just finishing up the second week and heading into the two-week break. I haven't had any terrible herx but do notice a bit of an uptick in symptoms particularly in the heat/cold symptom on my feet.

I will update on my kids' LLMD separately.

So, if you aren't taking antibiotics, what are you on now (finishing up the second week)?

interesting that she said you'd feel worse on the weeks of antibiotics, and better on the week off.
I don't think the patterns are always that cut and dried.

Thing is, sometimes a person can start herxing near or at the end of the 2nd week on antibiotics...and continue to herx through part...of the days off....
So, not necessarily feeling worse ON the antibiotics...but first few days OFF them.

All in all, you are in good hands there...Dr. J. knows what he is doing.

I wouldn't call that a mild treatment plan - Mino, Omnicef and Bactrim
(Plus Flagyl a couple days)

So on Fridays you're taking 4. That's not for wimps...

Many LLMD's would do two abx only. (Like my LLND)

lymebug said...
I guess it's not for wimps, but I had heard from other and past patients that they felt like they were taking antibiotics most days whereas I don't feel that way. Maybe it's tougher for co-infections?

I should clarify that the Flagyl on Th/Friday is only on the second week.

Okay - I thought that was so you didn't add everything in at once.
So your next cycle, you will still only do Flagyl on the second week.

With Dr. J. it is typically (from what I've read/heard) M/W/F two or three abx and Th/F another one.

I think that is a decent protocol. Although, I thought the protocols were usually two weeks on and one week off - I see you have two weeks off.
Maybe he is starting you off gradually.

Rikky1 said...
thanks for the detailed info lymebug i may be checking out Dr. J as I'm sort of done with my LLMD he's ok but not in the same class as J.

Yah, rub it in Rikky!!!