CONFUSED on test results

June 2015 Igenex test results show
>80 IFA B Burgdorgeri

IGM 41 IND
66++

IGG 31+
39+
41+++
58+

With these results and my many many symptoms, I was told by my LLMD that I have late stage lyme disease that basically laid dormant in my body until I had a couple of cervical spine surgeries, which, after those, Lyme came out with a vengeance.

Along with many other tests run by my LLMD, he had Advanced Labs run a Extended Polylonal Borrelia Culture. After 16 weeks of culturing, it has come back as negative, with me being told it is a 94% sensitivity and a 6% chance of false reading. (I go see my LLMD this coming Tuesday, yet I have such Lyme brain when someone talks to me, I cant retain anything, I am better off reading) such as the answers I will get here.

When I was in the office last week to get supplements and take my daughter (also Lyme positive) in for her re check, the gal behind the desk handed my the culture results and said I do not have Lyme disease. I said What? Then she started talking greek to me, I understood nothing, and I said I will wait until Tuesday when I see the LLMD for my 3 month recheck. (Which is another question I have.....how often do you guys wait in between appointments with your LLMD? Ours is always 3 months or longer)

In the mean time, I was on Flagyl and Biaxin. I only made it 3 months on both of those only to have it wreak havoc on my liver enzymes, so Dr. took me off abx Dec. 2015. I have only been on "healthy supplementation" since, and I have gone backwards to the extent of feeling worse than I did on day one.

Can anyone give me advice on truly what this culture means? Does it mean I don't have Lyme? Other tests the llmd ran on me months ago show that I have Dysbiosis, bacterial and yeast, mitochondrial dysfunction, low glutathione and a slight increase in toxic metals as well as a slight increase in lipid peroxide. And the supplements I take, supposedly address those issues.

Pre LLMD I have been to every doctor known to man (well not really, but last spring, 6 trips to the Mayo Clinic, 20 vials of blood later, and then to a rheumatologist and another 12 vials of blood, only to be told I have Fibro, which I am not buying.)

I don't know what to think. HELP please. Feeling like h*ll and not sure what to do.

Thanks,
Charliebug

LLMD told me I have Lyme

My IFA results are >80 (which means positive)

He is not treating me for Fibro, that dx was given to me by a rheumatologist prior to my Igenex results.

The llmd, after telling me I have Lyme, ran the culture test, and it came back negative. The girl behind the desk, not the LLMD, told me I do not have Lyme, and when she tried to explain it to me, I was so lost, I told her to stop, I will wait for my appointment this coming Tues.

However, it is nice to hear confirmation that "see you in 3 months" is extreme. I was uncomfortable with that from day one, and I seem to getting more miffed as time goes on.

As I said, I have has a dx of Lyme since June 2015 and as of today, I feel the worst I have ever felt. One would think with the thousands of dollars I have spent on supplements and tests such for my "other" issues he tested me for, I would feel somewhat better, but NO, I do not, and I am getting a little concerned and unsettled this is not moving fast enough for me plus confused at what I really do have.

Charliebug

So you do have Lyme and therefore need to keep treating. Why did you stop treating? "Healthy supplementation" is not enough to kill the Lyme. If you still have symptoms, you still have Lyme.

What is the normal range for appointments? My LLMD sees me monthly...

Oh also, in regards to the culture test, as we said, it doesn't mean you don't have Lyme. It just means that the particular sample didn't have bacteria in it. Lyme hides in tissues, etc. Not always easy to capture it in blood samples.

Hi Sara,
I am not back on my abx as my liver enzymes have not come completely to normal. My AST is now a high normal, but my ALT is still high (I should point out I have a large gallstone) which I am putting 2 and 2 together that is why my ALT may not be coming down.

I asked my llmd about this, and he wanted nothing to do with it, and told me to go see my reg md, which I did, and she referred me to a general surgeon. In the past 3 months, amongst all my pain, and I have tons, it appears some of the pain I have is gallstone related. It was found in June yet was not giving me issues back then. But now the surgeon says it is, and it needs to come out. SURGERY, something I do not want to have again. I feel it will only make me sicker.

I agree, all the supplementation I am taking IS NOT treating my Lyme, only boosting my immunity, which I was pretty healthy immune wise to begin with. (Always had great blood work, except for Igenex and now my liver enzymes)

Thanks for your responses all. And Girlie, those 2 abx's are the only Lyme treatment that has been prescribed from day one. I did not start taking it right away as he wanted to do other testing, Evoke EEG and heart testing and other blood work and I could not be on abx prior to those, so hence the late start on them.


Charliebug

Post Edited (Charliebug) : 2/12/2016 2:29:27 PM (GMT-7)