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I just saw my LLMD today. He is the best! I believe he is new to the game of Lyme, but he seems very committed to learning all he can about it. He put me on the following protocol:
Azithromycin 1x/day
Axoxicillin 3x/day
Fluconazole 1x/dayI was having some yeast issues recently from the Minocycline, even though I've been taking 6 PB8 probiotics a day, yogurt for breakfast (well away from the Mino), and drinking Kefir as a snack after lunch. I can't think of anything else I could do to help with a healthy gut flora and yet it was still a problem. I have a feeling it was a problem before the Mino and it just got worse. He said the Fluconazole would take care of a systemic yeast problem and eventually I could move to a once every 3 days protocol.
I wasn't surprised he took me off Mino as he also knows I am trying to get pregnant and it is contradicted in pregnancy. I'm not sure he's as comfortable as having me on a tetracycline as Dr.S is. He said all of my symptoms of SD could be of Lyme as well and that the ANA is often positive in Lyme patients. He was concerned about my ANA pattern (centromere) being indicative of SD, but he said we address the ANA after I was on antibiotics for awhile. I do think he could double as an AP doctor and would prescribe the Mino if I needed, but I was hoping to kind of stop the SD in its tracks. I don't want to wait until I'm sick with SD to start AP-that's why I went to see Dr.S.
As far as AP goes, I was doing good. No herxing, allergic reactions, nausea, reflux, nothing. I didn't really expect to herx yet, but I was happy to have it at my disposal. I have noticed my raynauds is better, but that could be the weather!
Again, I have all faith in my LLMD, but I have a bottle of Mino on my counter and can't help but worry-that I should be taking it. I remember recently one of the other members posting their LLMD had them off Mino and others asking why. Should I not worry about being off Mino for awhile? Or should I add it back in on my own?
~jen
PS-thanks for all the suggestions on what to do with my tick friend I found last week. It was hilarious! OMG Kim-20 ticks, ICK!
Jen, I can understand your concerns about the new protocol. I'm on a similar protocol with Moxatag and Diflucan. Moxatag is an extended release amoxicillin, so I only need to take two 775mg a day. Diflucan is actually a Lyme treatment, because a German doc (who had Lyme, himself), discovered that Diflucan shut off the P450 cytochrome which has some effect on borrelia and was quite an effective treatment for Lyme in its own right. So, it's actually doing two good things for you…targeting both borrellia and candida. 😉
http://www.ncbi.nlm.nih.gov/pubmed/15337633
Penicillins have a tendency to ramp up the risks of candida overgrowth in the gut, so the diflucan is a nice adjunct with amoxycillin in the treatment of Lyme.
As you're nervous about being off your minocycline, I wonder how your LLMD would feel about giving you weekly bicillin IM shots in place of the oral amoxy? The benefits of bypassing the gut are obvious, but if you look at my Progress Thread in my sig line, then you will see I listed my abx therapy in my first year when I was on weekly bicillin IM shots, in addition to high doses of tetracycline and clarithromycin.
Azithromycin is a nice companion to minocycline, however, the tetracyclines reduce the effectiveness of oral penicillins, so a way around it was to use the Bicillin IM shots. These are pre-filled syringes and my LLMD used to prescribe them to me in 4 week series (1 per week), which I would pick up from the pharmacy and then had a nurse friend inject my hip (upper right quadrant/buttock area) every week. FYI, my LLMD also rx'd me an epi-pen when I started IM Bicillin, just in case I developed an allergy to the penicillins during treatment. It was just a precaution and I handled the weekly shots for 5 months straight with no probs.
Maybe switching to weekly IM Bicillin and adding back your minocycline is something you could ask your LLMD about at your next appt?
Peace, Maz
Hi Jen,
Thanks for the update on how things went today. I am by all means no expert by any means of the imagination, just wanted to let you know that my daughter started on Doxy & Ceftin. It's important to keep in mind that her symptoms are different than yours, whereas she has more RA symptoms going on. At first by these meds I'm thinking they were trying to target the Lyme, but she actually saw a increase of swelling in her joints. She also was experiencing cysts especially under her arms.
Since there was no improvement after 30 days, she was switched to Azithromycin, Batrim and Malarone. I believe they've come to the conclusion that her co-infections (Babs) are taking over so they're treating those first and will deal with the Lyme later on.
If you get a chance, check out the article in todays Chicago Sun-Times about Lyme (and be sure to read the comments). Not sure if I can post the link without permission. There is a LLMD in WI 😉 that was interviewed for the article of whom we may be heading to due to lack of communication for a week with our current doc :headbang: I think Maria's Foundation had a mention in the article too!
As far as what to do about the mino, as wise person on this board (and since she's shy I won't mention her name 😉 but she knows who she is) mentioned to me, it's important to find a doc and stick with them as each one has their own MO regarding treatment. Some may tweek things one way and others may tweek another way. It's what you feel comfortable with as well as how you are progressing.
P.S. Have you named your little tick friend yet or has he already succumed to his inevitable demise? 😎
Cheryl
Cheryl,
I'd love to see the article in the Chicago Sun-Times. If you can, please post the link. If it's the same doctor I'm think it is, several people on the board are patients ~ Trudi and Maria, maybe others too. You can PM them for feedback.
Take care…..kim
Cheryl,
I found the link for the article, thanks for mentioning it because it is a good article.
http://www.suntimes.com/lifestyles/mindbody/2233114,FIT-News-lyme05.article
Hi Kim,
I wasn't sure if I could post the link or not. Glad you found it. I made an error in my previous post, the Lyme Foundation isn't mentioned in the article but if you follow a link in the comment section there is a link to it. Maybe Maria will chime in if this is the same foundation she works with.
http://www.chicagolyme.com/index.html
Cheryl
Cheryl,
One of the founding members of our foundation (Midwest Lyme Foundation) has had chicagolyme.com for a few years. Until our website is up, that one will remain active. Hopefully, that will happen before month end. Sorry I didn't respond sooner–I have iv's this week, and they stuck me in my right hand so, a little hard for me to type anything.
Maria
Thanks Maz, as always for the advice. I will certainly ask my LLMD about it at my next appt in 3 weeks. It's good to know there is an option. I'm getting better with the idea of being off the Mino. Another reason I was hesitant to remove it is, after I've read about it here more, Mino seems to sort of modulate the immune system. Is that right? Or no, does it just slow down the bugs so the immune system can be stronger? Either way, it seems like it is a good thing to be on. Although Dr.S said he had not heard of a correlation between mycoplasma and miscarriage, but Dr.P said there was a definite correlation between lyme and miscarriage, so maybe it makes sense to treat the Lyme first. Mino will be there just in case. I try to read as much as I can-it's just confusing. I need a medical mind like Maz!
Why do LLMD's use doxy more than mino? Isn't mino better? I'm pretty sure he wouldn't put me on any tetracycline family medicine due to the pregnancy thing. I guess I could say I'm not trying to get pregnant, but I hate to lie to him. I'm not above lying for the benefit of my health :blush:, but I also want to do what is best. I guess I'm still learning that medicine is a science, and that it is about choices. I have to choose what is right for me. Thanks for letting me know of all my choices!
Cheryl, thanks for all the help and advice, esp with docs. I'm sorry you're having issues with your doc. Makes me comfortable with choosing Dr.P. He's even increasing his hours in IL and I could always go to Iowa if I needed to. I know he is testing me for the co-infections, so I'll know soon if I need to switch my meds or not. I've read it's important to treat those first, then the Lyme.
I read the article-thanks for the link Kim, good article Cheryl. You'll have to let me know how that doc is too. I know Maria has seen him, so he must be good! 😀
Fran-yes, I see Dr.P from Grinnell. He's from IL and comes here every month to treat Lyme patients. Claims it's good for his marriage too. His wife is his office manager and he enjoys the time away! 😀
Maria, sending you good vibes for your IV's. Enjoy the weather and I owe you so much for sending Dr. P my way. Good things to come! I'd like to help out with the foundation in any way that I can. Do you attend the meetings in Elgin?
~jen
PS…my little tick friend sadly died in the baggie overnight. I didn't even get the chance to instill any harm before his demise. But I still took out the hammer anyways, just for fun :roll-laugh:
[user=2168]PetRescue[/user] wrote:
Why do LLMD's use doxy more than mino? Isn't mino better? I'm pretty sure he wouldn't put me on any tetracycline family medicine due to the pregnancy thing. I guess I could say I'm not trying to get pregnant, but I hate to lie to him. I'm not above lying for the benefit of my health :blush:, but I also want to do what is best.
Hi Jen,
Some LLMDs do use minocycline, but generally the doses to treat Lyme are much higher than the Harvard Protocol (100mg BID) and most people can't tolerate minocycline in those high doses.
By way of example, 100mg of doxy or mino is equivalent to 250mg tetracycline. When I began Lyme treatments, I was put on 750mg tetracycline twice a day. So, 1500mg of tetracycline is the equivalent of 600mg minocycline!!! Waaaaayyyy too high a dose for anyone to tolerate. You'd look like the blue monster from the deep lagoon in no time on that dose, quite apart from insane vertigo and benign intracranial hypertension. Doxy and tetracycline don't have the same degree of lipid soluability as minocycline, which enables deeper tissue penetration in smaller doses.
Put more simply, doxy and tetra are just safer in the higher doses needed for borreliosis, with fewer side-effects.
If you are not planning a new baby, then tetras would be perfectly safe for you, but not if you get pregnant, which could harm fetal development….but you know all this now. 😉
Peace, Maz
Jen- I'm thinking of seeing Dr. P in Grinnell but am not even sure I have Lyme Disease yet. Did you have all your testing done first before you saw him or did you just go to him and have him to the testing? Does he take insurance? I'm wondering if you don't have lyme whether he would still investigate and try to treat for whatever the cause was. I've reached a crossroads and not sure where to go from here as I've only seen worsening and no improvement on Ap. Thanks!
Thanks Maz for the explanation. I'm going to discuss this with him at the end of the month. He asked me if I was planning to get pregnant. I told him I wanted to get treatment first. He said why?, you are not sick, and I can treat you with acceptable antibiotics for pregnancy. It's like he was dangling a steak in front of a hungry dog. I couldn't resist. :blush:
I do know the risk to fetal development of the tetra's. Dr.S said that it would be safe until the 2/3 trimester. I'm OK with that thought as well, but I understand that most docs/people might not be. I'll just have to clarify my intent and that I'm nervous being off the Mino. We'll see what he says.
Fran, you can call his office to find out exactly what to do. When I saw him in IL, I made an appt and then he drew my blood in office and sent it to Igenex and I just had to write a check to Igenex for the test. No charge from him for the test or blood draw. He is a DO, so he can possibly treat other things as well. I'm not sure if he is limiting himself to LLMD now, you could ask. His office is just him and his wife, so just call. I'm not sure about insurance either.
~jen
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