Llmd update

Had my 1st appt. Today with llmd S.P.'s nurse, even though they messed up my appt twice. Was for tomarrow @9 am bt they mistakes it for today . She wants to start me on tetracycline for bart and lyme. She doesnt want to treat babesia first until certain tests come back first, and says I should treat bart and lyme 1st because they're more hard to treat than babs? A number of tests were ordered from toxo, crypto, brucella, etc. And blood parasite testing. They said the bart and lyme test at quest are "garbage " her exact words lol so told me its $200 at galaxy labs to be tested for I think only 2 strains of bart. She feels strongly I have bart and says it makes ppl stink as in my "ammonia" armpit sweat or as I like to call it "cat piss". My b12 is low which none of my docs told me except the nurse today and said it can cause nuerophsyciatric symptoms and the tingling, numbness, pins and needles, bt wasnt sure about burning sensations except bart and lyme? I was told babs doesnt cause burning so the clindamycin I took may have ramped something else up such as bart or lyme, and she wants to treat whatever infection is showing the strongest symptoms first which I understand. This nurse thinks I can have parasites and says most lyme patients have them. They want to start me on tetracycline? Has anyone been on it and side effects herx or was it rather good? Says it's to hit the lyme and bart. The only thing I did tile was their controversy on "detox" and how we herx bt dont "neccesarily " need to detox to remove die off or toxins or to herx less and im thinking like um excuse me, detox is what helps me not to herx or feel like I'm dying so I beg to differ on that lol! They were saying how they dont really cover detox (the nurse I saw) and said they have a naturpathic doc at their office who covers detox that and shes cheaper to see and she also does the herb treatment and sibo etc. Is tetracycline a good 1st choice for most with late stage lyme and bart? I asked them to finally test for mcas which she is and she wants to check mast cells for leukemia and lymphoma as well which I think is great. I couldn't get the 30-40 different docs over the years to do ANY of these test and jts so sad.

Oh wow thanks for sharing! I am curious about sp’s practice. They tend not to give me drugs in the tetracycline class because they’re harmful to mitochondria and I have mitochondrial disease. I’m personally still waiting/hoping/desperate for a azlocillin to become available, but I digress.

I’m glad it sounds like you had a thorough appointment.

Girlie said...
Sounds like a thorough appointment you had.

“ Is tetracycline a good 1st choice for most with late stage lyme and bart? “

It is the one that SP prefers.
My llmd prefers mino (in the same class as tetra) and I think Dr H uses doxy.

I believe you are in good hands with this LLMD - even tho he differs with DrJ - who says treat babesia first.
Lol 😆

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Yes very thorough appt. I thought the exact same to treat babesia 1st as I took clindamycin and herxes and experiencing POTS low blood pressure, sweating, panic which are babs symptoms and we all know clindomycin is specifically for babs so I was confused as to why they wouldnt treat it 1st?! Also she said clindo wouldnt cause burning and peripheral nuerapathy and thinks the clindo triggered bart lyme to come out and says treating dominant symptoms of whatever infection is stronger or showing most symptoms first, I guess that make some sense. I told her I didnt want to keep experiencing drenching sweats, panic and severe low blood pressure from babs I'm guessing and she said I can have one of my docs kind of lay off or mask the symptoms which made me a little mad and im like huh? Who wants to mask the symptoms if u have babs?

“ I can have one of my docs kind of lay off or mask the symptoms which made me a little mad and im like huh? “

I don’t understand that ^^^
What does that mean?

Girlie said...
“ I can have one of my docs kind of lay off or mask the symptoms which made me a little mad and im like huh? “

I don’t understand that ^^^
What does that mean?

Basically the nurse said she didnt think we sho treat babs 1st despite babs symptoms bothering me. She wants to treat lyme and bart first, and says I should have my doc help me "mask" or lessen the symptoms of babs by helping me manage my low blood pressure and POTS with meds or meds for the sweating for now rather than actually treating the babs with antibiotics for now. She said obviously it wont treat the babs but will help manage and hold off some of the symptoms.

in his interviews Dr SP says he finds tetra works better than doxy for most lyme patients.

he is a very solid evidenced based guy so i have no reason to doubt that.

he says the standard dose is over 7x that for doxy - and thinks that may have something to do with it
which makes a certain amount of sense.

overall the whole idea of going to a LLMD is to hand over some of the control and fretting about it to someone will a lot more experience than you do. so having made that step. and got into the practice of one of the best out there - i would now try to relax and roll the dice and give it a full couple of months to see how it goes.

i would expect some symptoms flares and weird stuff to happen in that time - try not to let it undermine your confidence - its normal.

i wish you every possible success

I’m not sure about cytokines specifically but omega 3 is anti inflammatory and had extremely life alteringly good effects on me. I’m just in deep mourning in I’m allergic to all forms of it I can find now. I think tumeric/curcimun is also supposed to be good for cytokines. It was ok for me.

i take a bunch of anti-inflammatory herbs that are well tolerated - but i added one at a time to be safe

have been taking knotweed on its own for years but didnt seem to move me forward ( but cannot say how ill i might have been if i hadn't used it so jury is out)

i think the ones below have helped me recover over the long term - as progress only started after adding the others

-knotweed
-chinese skullcap (anti-inflammatory, immuno modulatory, potentiator of other herbs )
-dan shen ( anti-inflammatory, "immune adaptogen" and protective of endothelial cells)
-cordyceps ( anti-inflammatory, immuno modulatory)
-uncaria rhynchophilia ( buhner likes this one for brain inflammation especially)
-cats claw ( immuno modulatory, anti-inflammatory)
-licorice ( small doses 0.5ml 4x - immuno modulatory, potentiator of other herbs )

all as tinctures doses acc to buhners latest book - healing Lyme 2nd Edition

orbitingaround said...

MedicalNerd said...
Thanks everyone for the replies, I'm just trying to remain positive. Also I will be sticking to Japanese Knotweed it helps lots with my inflammation and to bring cytokines down. Do u guys reccomend anything else that brings down cytokines?

I take SPM Active by Metagenics, which is pretty pricey, but it's supposed to help the body heal. I find taking 1 at a time helps me more than 2, for some weird reason. Also, when I started it, like everything else at first it caused more flashbacks for me.

2 other things I wish I had been taking since I started treatment are calcium d-glucarate and NRF2 detox pills, both for detox. I think my LLMD is now thinking I have the MTHFR gene mutation, specifically because the NRF2 helps me so much when herxing.

Flashbacks? Explain pls, and do u need a prescription for NRF2 detox pills?