Went to a different doc yesterday who claims to be an LLMD (says he has been treating for 30 years) because I feel like I'm nearing the end of my treatment and wanted a 2nd pair of eyes on the case.
I disagreed with about half of what he said, but I wanted to run those things past you all to see what you thought! If you have links to studies, I'd really appreciate it!
1. I'm presently taking ivermectin, sida acuta, and artemisinin (pretty high dose of the latter) for babesia (I cannot tolerate mepron, malarone, or lariam).
He said that ivermectin does nothing for malaria-like organisms, that it is for parasites instead. Also said that daily ivermectin is dangerous? Did not know about the herbal things, but said that if I did have babesia, it would be untreatable since I can't tolerate antimalarials.
2. He does not treat coinfections without a positive test; says that those tests are accurate, while the Lyme test is not.
The LLMD I've been treating with goes by clinical diagnoses for everything (ILADS/ Dr. B protocol).
Also, I just looked over Dr. B's protocol again, which says ALL tick-borne illness must be diagnosed clinically.
3. Said that Cefdinir does not treat Lyme because it doesn't go inside the cell, and that I've been wasting my time and money for the past year taking it.
4. This doc's protocol is minocycline for 1 year; didn't mention flagyl or anything else to get the cyst form? Says 95% of his patients are cured.
5. Said if a patient has no symptoms for 3 months off antibiotics, they are considered cured.
I thought that there was always a remnant of the bacteria in your system, so it's more like a remission?
And can't the cyst form "hibernate" for that long, anyway?
6. I'm currently taking 500mg of Azith a day. He said I'm damaging my liver with that high of a dose?
I thought that Azith had to be at a certain level in your blood to cross the blood-brain barrier...
7. I do have the MTHFR mutation (homozygous at A1298c) but he said that is insignificant and I shouldn't worry about that.
8. He does not think the herbs I've been taking (antioxidants, antifungals, MTHFR vitamins, etc) have done any good.
Also, another red flag was that he said I should be taking "Acidophilus"; he did not say "a mixed-strain probiotic with at least 20 billion CFU," which is what I've always heard was the mininum.
9. There were some good things about the appt; he found significant amounts of yeast via a nasal swab and prescribed me a 10-day course of 100mg diflucan.
I haven't taken any diflucan (or any prescription antifungals) in my 17 months of treatment, so it might be good to do that.
Also, he said my remaining symtoms (fatigue, headache, body aches) could be caused by the meds and "migraines," not Lyme itself, and recommended that I get off all the antibiotics and herbs.
Thing is, my head and body aches are muscular and pretty mild to moderate--classic herxheimer flulike symptoms; not what I'd call a "migraine" at all...
But, though I'm pretty sure that my lyme isn't completely gone, it might be a good idea to take a drug holiday for a few weeks and see if/when symptoms return...
I obviously won't be returning to this particular doctor because I disagree with him and don't trust his judgement.
Just wanted to throw the info out there and see what you all thought about his claims!
I'm not here to bash any docs; I know there are as many different ways to treat lyme as there are varieties of it! But I AM looking for the right course of treatment for my particular case :-)
Posted by Keebler (Member # 12673) on :
- "95% of his patients are cured" - or so he thinks as they probably never return - - to him.
On all points, your logic and intuition seem correct. You need a better educated, truly ILADS "continuing education minded" TBD-literate MD / ND.
Good luck. -
Posted by kgg (Member # 5867) on :
Yup. Agree with Keebler and you. Do not return to this guy. But I am glad he gave you the Diflucan. It may cause you to herx, but you will feel better once the yeast is cleared.
Posted by Keebler (Member # 12673) on :
- The issue of any Rx damaging the liver is of concern, though. He has a point there. However, since lyme can destroy a liver all by itself, it must be treated. Sadly, many of the Rx even on the market can be hard and even damage the liver. Still, there are ways to help:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by iwouldratherbeatdisney (Member # 20602) on :
Sounds like the doctor I went to here in my home town. Been studying and treating the disease for 30yrs. Grateful for him dx me with Lyme but he wasn't all that great long term. Sounds like you should find another doctor, know how frustrating this is
Posted by ralphi (Member # 33834) on :
Thanks for your insight; you guys are the BEST! You've helped me more than any doctor has ♥
Turns out this doc prescribed two medicines that would have caused severe interactions with a drug I'm already on!
Very scary, but a good reminder to double-check side effects/interactions for yourself before taking anything new; after all, you are the one putting the pills in your mouth!
Posted by VV (Member # 38828) on :
"Very scary, but a good reminder to double-check side effects/interactions for yourself before taking anything new; after all, you are the one putting the pills in your mouth! "
I second that!
Posted by Kudzuslipper (Member # 31915) on :
just goes to prove we need to be our own dr's. at least have enough info to question questionable info and prescriptions.
that being said, after treating for 18 months, a gut issue made me stop taking abx cold in december. I had a month or so, where many of my symptoms seemed to re-appear sporadically. but they seem now to have gone away. And much of my joint pain is much less off the abx. I just feel much more even off of the abx.
Posted by Lymetoo (Member # 743) on :
Ha, bet I know who it is.
Posted by ralphi (Member # 33834) on :
Hahaha!
Posted by Lymetoo (Member # 743) on :
Gee, I'm getting good at this! LOL
Sorry you had to waste money on this guy. I'm SO GLAD you were not a brand new patient that didn't know any better.
Posted by Catgirl (Member # 31149) on :
Wow, if he doesn't treat co infections without a positive blood test, he's clueless. Maybe not ILADS trained, or perhaps he missed the session on clinical diagnosis. Blood tests are fallible, and with lyme an company, they are next to useless, IMO.
I no longer accept everything a doctor tells me. I take in the info, evaluate it, and follow my gut.
We know our bodies better than any doc, period. I had a practitioner tell me I'm not an expert--wrong. With my body, I know best. Even Dr. Oz has said that on several episodes.
Posted by Lymetoo (Member # 743) on :
Just so everyone can rest easy, this Dr is NOT on our LLMD lists. Certainly not on MINE.