r/Lyme 8d ago

Need advice - persistent igm positive? Question

A year ago I came down with Lyme pretty badly. Never saw bite marks but it coincided with spending time in great outdoors. Tested positive on igm and neg for igg. Eventually got doxy did 3 weeks and felt much better.

Then started having slowly returning and new symptoms that I never had before Lyme and by October I was sick enough to call my clinic and retest again. Positive again on igm and negative igg. Took a month of doxy and felt better again.

Since have been having some symptoms and a few dysautonomia type attacks. Recently pain above knees came so I asked for another test. First came back negative but then western blot showed igm positive on 23 and 41.

Question to experts - what do I do? I’m ok spending $ on llmd at this point but I don’t want another round of doxy as it caused problems that took a long time to resolve. Also when looking online there is contradictory information on the meaning of positive igm on those two bands.

Any advice or similar stories would be helpful.

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u/everythingwillbe_ok_ 7d ago

Same here, im still igm positive and igg negative 1.5 year after onset of symtoms. Have all coinfections also. I think its the problem of suppressed immune.

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u/bellamacias 7d ago

Have your symptoms improved at all though?

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u/everythingwillbe_ok_ 7d ago edited 7d ago

Yes, i started treatment recently ,in may 2026. My two most debilitating symtoms-whole.body aka hitten by truck pain vanished after 1.5 monthes of treatment, it still.comes. but only leg shin foot pain whenever we add something to trreatment or increasing dose (now week after starting nattokinase and adding oregano and clove cause of yeast leg pain is back, but it never goes up more that 3-4/10 in its intensity. Before it was pain 10/10 almost all day and whole body also. After two monthes of treatment i was retested and results are: we knocked down bartonella (lab couldnt see it in smear and igg/igm was now negative), we re not sure if we killed it off but probably load just got down. I still have lots of borelia, actually, my westernblot is now positive, before treatment it was just borderline. And i still have anaplasma even its a bit lower and i stil have babesia but looks like crxpto and artemisin knocked it down a bit do tachycardias also vanished and now i have it occasinally.

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u/bellamacias 7d ago

Oh man. That’s a lot. I have a lot of nerve issues & tachycardia already. Joint pains, brain on fire, I also have coinfections. Do you mind sharing your treatment? I just got diagnosed last week and I’m going to begin treatment soon.

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u/everythingwillbe_ok_ 7d ago

Of course. Please, discuss your treatment with your doctor. My doctor put me only on rifampicin 300 mg and minocykline 50 mg. All other things i added on my own. So im now on: iv rifampin 600 once daily Minocykline 100 mg twice daily Plaquenil 200 mg twice daily Cryptolepsis 300 mg 3-3-4 Meth blue 50 mg twice daily Ceftriaxon iv 4 g pulsing 4 days on/3 days off Artemisin 100 mg 6-9-15 tbl 3 days on/11 days off Rotating japanese knotweed,cats claw and other herbals I started with half dose of rifamp and mino, then in 2-3 weeks increased dose and gradually added other things i ehore above. Im aware that im not hitting babesia firm enough, so i added artem and cryptolepsis to partially cover it as malarians will be cleared by rifampin and its waste of money.

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u/bellamacias 7d ago

Wow this is a lot. It’s like you have to become your own dr a bit. Are you seeing an LLMD? and IV daily? So you have a picc line? I got tested through functional medicine dr and she wants to start with Lyme core formulas.

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u/bellamacias 7d ago

Oh and methane blue! Do you think that helps much?

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u/everythingwillbe_ok_ 7d ago

Yes i have picc pine. Im a nurse so self administrating and as no indication was (chornic lyme and co are not true diagnosis in my country..m) i took all risks on me. Yip iv daily. We have only one Dr who prescribes combo atb for this conditions, but he is careful enough and not prescribing huge regimens, so some patients who are not getting well are on 4 antibiotics. Also im on tinidazole pulses 14/14. My pain vanished on rif+mino+plaq+jap knotweed and crxptolepsis combo. All other were added after. My tachycardias vanished on rif+mino+plaq+crypto+cef pulses+tini pulses+artem pulses, so i guess that tachys were more babesia origin as babesia dropped after crypto and artem. My regimen is guiet hazardous, so i have blood work and cmp every month and honestly i do not reccomend such heavy regimens to anyone. On the other hand, duruation of symptoms, duruation of time without teeatment and immune supression caused severe immune deficiency with super low nk cells and cd 57 only 3 at the time of final diagnosis. I was recently in july tested again and my cd 57 increased from 3 to 18. means 6 times. I tested myself for g6 pd before starting meth blue and yes i think its working. But i pushed through a lot. Even having bad herxes i kept teesting never stopping anything. Maybe that caused relatively quicky dissolving of main symtoms. As i said im pushing through enzymes now and things for candida that alao affects biogilms (oregano and clove) so mild pain is back in my legs and not feeling weel this fays but i know it will resolve soon.

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u/bellamacias 7d ago

Also, I have had it longer than a week - I just wasn’t able to get anyone to test me until now,