LLMD visit and Igenex Tests

Went to see my LLMD and get results of my IGenex test from my last visit on 11/28. She was very pleased with my progress and I felt very, very good today - practically symptom-free. I had had a LabCorp run of Lyme back on July 6th and it showed Lyme bands 23, 39 and 41 (IgM) and no co-infections.

Well, I didn't entirely trust the LabCorp data on co-I's so I asked for the IGenex panel. The bad news is that I still have Lyme bands 23, 39 and 41 but the levels are coming down a lot (all IgM and nothing on IgG). AND, I tested negative for all co-infections on the Igenex side as well. I know this still is not the end-all but it's very encouraging. She is impressed with my progress and asked me to DOUBLE the abx to really blast what is remaining of the Lyme as see her back in 6 weeks. She also wants me to try Flagyl or Tinimax for two days every week starting in about 2 weeks.

She said I can increase my running - I had ramped up to abt 15 miles/week (a far cry from my pre-Lyme 35-40 miles a week but better than zero as it was a month ago!). So, now I plan to slowly add distance over the coming weeks. I REALLY believe running to be like an antibiotic - heats the bloods, oxygenates the blood and drives it deeper into the tissues. The latter drives the abx's deeper as well and roots out the Lyme hiding deeper in the tissues.

My ear-ringing is diminishing, my persoanlity is returning, my neuro symptoms are receding back. It's still up and down but with a definite and pronounced UPWARD bias...all-in-all, I am happy with the progress - I can just feel my body repairing it self and my immune system strengthening....cool stuff.  I am not out-of-the-woods completely yet but I can see the clearing ahead!
 

I see my other LLMD next week - still trying to figure which one to stick with - LOL....my other one understands and supports herbals better...the one today is abx-centric.

Post Edited (yazzer) : 1/3/2012 3:44:18 PM (GMT-7)

It did not break out the Bands per se' but it did gives levels as such:

Lyme Ab, Total/IgM Responses

Lyme IgG/IgM Ab:  3.23 High               index  0.00-0.90, equivocal 0.91-1.09, postive >1.09

Lyme Disease Ab, Quant, IgM:  5.25 High        index 0.00-0.90, ditto, ditto

How does this compare to thers???

In reviewing, my igenex data was for coinfections only - all negative...the Bb data seems to gave come from labcorp. We knew I had Bb but the question was for bartonella and babesia ( and others) no coinfections show - even under FISH test for babs. I misstated igenex for Lyme, again because I already knew that via ELISA and western blot. My original labcorp showed no COINFECTIONS which we were suspect of. Igenex came back negative for coinfections as well.

True, sunnyman, but I expected to still have active Bb - I have a LOT of it to contend with and we're whittling away at it. My main concern was co-infections....my original LabCorp tests run back in July showed none but those tests are less than reliable from what i have gathered. The IGenex tests are more complete and accurate. These came back yesterday as negative for babesia (including a FISH test), bartonella, ehrlichia, and anaplasma (another ehrlichia agent). It's unusual to have Bb and ONLY Bb with no co-infections, but three different tests from different places and types all have turned up negative co-infection panels...

So, my appointment yesterday, in my eyes, was VERY POSITIVE. I am feeling tons better of late and now we know the main culprit to iradicate is the Bb itself. That's why I am doubling my dose of Ceftin and Biaxin and adding Tindamax or Flagyl in a couple of weeks. The other weird thing is that I was only positive for acute infection (IgM) in bands 23, 39 and 41 - all my chronic bands (IgG) were negative!

I think people usually start looking into coinfections in cases where treatment isn't progressing as well as it should be. I've also heard that it's rare not to have co-infections, but I still haven't tested positive for any (and my case has been quick finicky!). Although technically some people include certain viruses as coinfections, in which case my HHV6, EBV, parvovirus, and mycoplasma would be my co-infections (which are complicated things a bit!).

It's also possible that you did have other co-infections, but your body dealt with them already. Being a runner it sounds like you already had a good defense system built up before you were infected. Either way it sounds like you're on the right path and I'm so glad to hear that you're improving!

One word of caution though - it's great if you can handle doubling your abx, but just be careful! I've been VERY aggressive with treatment (to a fault) and my one regret is that I didn't listen to my body when I pushed it just a little too far, which I'm still recovering from. Don't get me wrong I've been steadily increasing abx, doubling this and that - but there was just a point where my body said "no thank you" and it was more than I could handle. That's just my 2 cents - I just want to see you keep improving!

Border - again, you speak prudently about increasing abx dosages. I am slowly increasing the dosage of one abx at a time. If I feel like I am not "feeling it" with the meds, I will back it back down. I have become very attuned to listening to my body over the years and - being anti-med except for extreme necessity, it is not hard for me to lay off them!. For me, I felt that abx were needed to treat the Lyme, coupled with all the detox and evercise - and it is working so far - your implication of being careful not to "mess with success" is well-heard!

Bucci, april - my blood pressure stays between 110/65 to 120/80 practically all the time with resting pulse at 40-45 typically. The abx, though I was wondering at first did indeed work...and they are still working plus I added the BW protocol and ACUPUNCTURE. It was hard, but I laid off the running for a couple of months but my body just did not feel right (again, listening to the body). Burracano recommends NO aerobic exercise but I truly think this is for people with no base of fitness/running. I run through the symptoms - Today I ran 4 miles on the treadmill pretty fast - 31 minutes. I have ear-ringing afterwards and such but, in the end, I feel as if my body and my immune system are rallying. I missed out on running my 5th marathon this past fall but plan to run another this coming fall. Near-term, I am trying to get back to a fitness level to run in a 10-mile race on Mar 4th - I have run it every year since its inception in 2004 - it honors a running colleague who died of cancer in 2004.

I HAVE to run! I was 280 lbs back in 2002 and that was way too much for my 6'-0" frame - I lost 80 lbs that year by running and changing my diet/lifestyle. Since then, I have logged nearly 16,000 miles of running - I even ran through my last Lyme flare in 2005/06 (without knowing it was Lyme then) - I did everything - even going on a yoga retreat (which, looking back caused a major herx!!!)...docs kept telling me it was in my head - anxiety disorders and depression - WRONG!!! Looking back, I was herxing like crazy but kept at it with the exerise and the episode passed (it took about a year). Both my current LLMDs think I have been infected at least since age 17 - I am 52 now.

I had neurological Lyme symptoms back then and every test in the book was run on me but nothing found - it got blamed on stress and I lived with recurring flares of Lyme that happened about every 5 years (duration average of one year each) - I know ths now because all those past symptoms were the same as I have faced now with definitely diagnosed Lyme. Finally, this past June my sister said I might want to check for Lyme - I was big time positive even on the CDC criteria....evidently a tick bite reactivated the dormant stuff in my system.

Luckily, it seems I have escaped co-infections of TBIs - I did however get a reactivation of EBV that I have be dealing with as well. okay - that's the end of the story. I think it is important to stay as active as possible and try, try, try to get out into public where you can see life happening around you. It helps put percpective on your situation and it gives you more motivation to get better....I did this before without even knowing for sure what I had...I continue to do it now. But, also get plenty of rest and listen to your body. The one NEW thing for me since I now know I have Lyme is to DETOX - I had never directly done this before - though the running and all the sweating was probably doing that for me at the time.

i was thinking of doing yoga and i have noticed in the past when i stretched for a period of time and got my heart rate up, i felt bad afterwards...but i still want to do it.....i know this sounds strange but u know when u wake up in the mornings or after a nap...u have an uncontrollable urge to stretch and get the blood pumping?....well i have these urges probably 20 to 30 times a day...and i felt like since i had been affected in my muscles so bad...that the uncontrollable stretching was my body trying to get blodd flow to my muscles.....our bodies r amazing to me.....but anyhow...the urges i have is what led me to think i could get "life" back in my muscles if i learn some yoga techniques.....

Anyone have a good LLMD in California?