advice after IV antibiotics and oral over 18 months

I have been reading posts since before my official diagnosis 18 months ago but never posted. I would appreciate some input.
It took more than 15 years of asking doctors about Lyme for me to get LLMD and Igenex testing.

I was on oral doxy then after 6 months went to IV rocephin, then IV doxycycline then Mepron/azithro then IV Vancomycin. I felt more clear minded on vanco after only few days. I had serious relapse while on mepron/azithromycin.

I had had liver and gall bladder problems since 2008 and after IV rocephin I had to have the gall bladder removed.

Current symptoms: low energy, body aches, ears ringing, weak muscles, shaking, joint pain in back/knees/neck, serious cognitive problems.I have energy 2-4 hours a day max. My brain is very muddled whereas earlier I was accomplished.

This is current list of supplements and medicine: Nystatin 2X a day, Biofilm 2X a day, NT Factor Energy 1X day, Adrenal Manager 1X a day, Magnesium Malate 1X a day, Calcium 1X a day, Milk Thistle 1X a day, Multi vitamin 1X a day, Vit.D 1X a day, epsom salt baths, skin brushing, alkaline water with lemon oil, pulsing tinidazole, fermented foods, theralac, TruFlora probiotics

Was on 2 weeks of 1 gram vancomycin 2 times a day for 4 days on then 3 days off. Then,the doctor took me off because of elevated liver bloodwork. I have struggled with slightly elevated numbers on and off on the IV. My liver feels tender but not horrible.

???Needing specific advice on possible next steps???
What to discuss with my LLMD after next blood tests off IV vanco?
Other antibiotic options?

Money is consideration with supplements and treatments, but insurance has been paying well so far.
Gilmore
IFA > 80
IGm 31 positive
IGM 83-93 positive
IGG 41
Symptoms since 1999 in Long Island and CT maybe longer

Welcome Gilmore!

Sorry for the reason you're here but glad you decided to post.

A few things came to mind but I have some questions first. What *is* your official diagnosis? What exactly happened when you relapsed on Mepron/Azith?

Just as finisului17 asked, have you had MTHFR testing? If yes, please let us know if you have any of the mutations...

And, have you had your thyroid tested recently? I'm not just talking about a TSH test, either...I'm talking about the Free T4 and Free T3 levels.

If you had those tests done already, I ask that you post the results here with their reference ranges (for whatever reason, different labs use different ranges for some of the thyroid tests and your results can only be properly interpreted within the context of your lab's ranges).

You'll understand why I asked all these questions once you read my responses to your answers ;)

I went back and checked my initial blood tests with my LLMD 18 months ago.
1) I am negative for the MTHFR mutation.
2) I have not had the other thyroid tests during last 18 months. They were on low end of normal back then.
Official diagnosis was Lyme. I was tested for coinfections ,but none came back positive.
I had a small improvement with each antibiotic protocol over 18 months. Over the year going from near constant headache/ pressure/ daily migraine to 1-2 days a week. Fatigue better from no good days to one 6-8 hour days every month. Shaking less noticable and falling/ tripping occasionally rather than daily.
But overall function was still barely surviving, unable to work. Able to drive one time a day for child activity. Reading and writing at elementary school level compared to top graduate school work.
The relapse on mepron/azith was pronounced over 2 months. Falling badly, unable to drive, not wanting to read at all, speaking very faltering sentences, confusion again.
Then, when put on vanco, my mind was clearer in less than week. Liver enzymes are up so doctor took me off immediately, which is discouraging.

So,
I would like before end of year to request specific blood tests before I see LLMD. I do not know if being off vanco has brought liver levels back down. I had one blood test after 1 week but no results yet. Then I have another after 2 weeks.
What tests should I request?
Any other specific questions for doctor?
What options are there for this cognitive stuff? I was working on research that I cannot now understand the abstracts of .
Can my brain come back?
Should I get MRI or other types of tests?


Thanks for any help!

Here are the results:
Ok I finally got results.
Ana dsANA antibodies 7 range 0-4
Sclerderma scl-70 antibodies 2.2 range 0.0-0.9
AST 129 range 13-39
ALT 175 range 7-52
dHEA sulfate 51 range 80-560
Estradiol <20
Free T3 2.71 range 2.0-3.95
FreeT4 .66 range .58-1.64
TSH 1.94 range 0.34-4.0
MTHFR mutation c677t negative,
MTHFR mutation A1298c heterzyg negative A
Thyroid antibody panel thyroglobulin <0.9 range 0.0-4.0
Thyroid peroxidase <28 range 0-59

I am off all meds and supplements at this time waiting for liver enzymes to normalize.
Official diagnosis Lyme. Negative for coinfection testing
Igenex results IGG western blot 41++
Igenex IGM western blot 31 +, 41 ind, 83-93 +
Igenex IFA >80

How long did you treat Babs? I treated the first time for 4.5 months. The second time I treated for over a year. There are some mepron resistant strains of Babs out there.

Lastly have you treated for Bart? The three go together. 18 months is not that long if you had been ill for many years. I was on IV Rocephin for 13 months followed by IV Doxy another 3 months. I'm approaching 6 years total in March.

Go after Bart and look at trying some herbals like Cryptolepis, Sida Acuta, Japanese Knotweed and Cat's Claw that have some effect across all three B's

Increased symptoms during babesia treatment screams herx to me. How long did you treat for babesia?

I was on mepron for 4 months. How to tell if herx of borrelia?
Does herx cause liver and ana levels to rise?
I have bought crypto, artemisin, cats claw, and BLT. Not using anything right now with liver.
My doctor is only llmd in 400+ radius.

How high did your AST and ALT get to? Bart can raise them as well.

The first time mine got out of range my LLMD also took me off all ABX for a break. After 2 weeks off everything they were higher, and then I stayed on plan and went to IV. After that she ignored it when they were elevated.

Thank you for input!!! Really encouraging to hear from other who has been through it.
Who is person who knows about thyroid and those blood levels.
Many thanks again