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Hi everyone!
Good news following my visit with my LLMD, Dr. P in Grinnell. I continue to improve with nearly complete resolution of symptoms. I told him I feel great and the only problem is my hands being stiff and mildly edematous in the morning. I can definitely live with that–such a minor inconvenience! Treatment plan is to continue Azithromycin 250 mg/daily and Minocycline 300 mg daily. I go back in November for follow up. I am feeling so much better than I was a year ago I can't believe it! My husband and I are going on our annual vacation again next Tuesday. Last year at this time when we went, I was in so much pain that I spent my mornings crying as it hurt to move. It was very difficult to even get in and out of the bathtub. My legs were swollen and I was short of breath and my skin was tight. I love our annual trip and didn't want to cancel as we had planned it prior to my becoming so ill. This year will be so different!
Vonni – that is wonderful to hear. Hope you have a truly wonderful vacation. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Congratulations, Vonni… have an amazing trip! Thanks for keeping us feeling inspired and motivated to get back to full health 🙂
This is so good to hear!!! Good for you!!! Have a great trip!
I'm a native Iowan and have driven through Grinnell many times. 🙂 I'm impressed there is an LLMD there!!! I'm very glad to hear that!
Michele
Michele,
Yes, Dr. P was originally an orthopedic surgeon and I referred some of my clients to him. Then after I became ill, I learned that he was now an LLMD.
That is great news! Congrats. Could you send me a private message on who the doctor is in Grinnell. I live in Des Moines.
Thanks
Julie
That's encouraging news for all of us to hear, Vonni. Congratulations and don't change a thing!
I noticed your meds are pretty intense dosages. Have you been on that regimen the entire time since your dx in 09? Assuming you've handled it just fine. I'm wondering if anyone else here has endured those amounts and if there were any of you who could not tolerate.
I go the the Riverside clinic next Monday. I'm both anxious and apprehensive. My symptoms (cutaneous) still recur, whereas I enjoyed about a three week reprieve. Not sure if my taking the NattoK (a salicylate) from Whole Foods precipitated the flares, but I have a suspicion that it has. The low dose enteric aspirin probably played a hand as well. Back to sticky blood for a bit I guess.
R
Hi,
After the initial 5 days of IV Clindamycin in 11/09, I was on Minocycline 200 mg a day from 11/09 to 5/10. Beginning in 5/10, my meds were Minocycline 300 mg a day and Azithromycin 250 mg a day. I anticipate in another 2 months that I will be done treating for the Lyme disease and my dosage will drop back down to 200 mg of Minocycline per day.
I saw Dr. P (of Grinnell) yesterday and feel he has a lot of knowledge of lyme disease. Tomorrow I will be starting his protocol, which makes me very nervous because I very sensitive to drugs.
Anyway, I will be starting Omnicef 300 mg 2x per day. Then adding zithro 500 mg per day in two weeks and then in 6 weeks adding tinidazole (flagyl). It sounds like a lot!! Anyone else take these? Side effects?? Since I've been on doxy 50 mg 3 times per week and barely tolerating that, I'm concerned how this will be!
Fran, this is Vonni's response to my question as to what her initial treatment consisted of, as I noticed what seemed like an intense volume of antibiotics in her current treatment. But I guess, as the saying goes, you can't argue with success!
“Hi,
After the initial 5 days of IV Clindamycin in 11/09, I was on Minocycline 200 mg a day from 11/09 to 5/10. Beginning in 5/10, my meds were Minocycline 300 mg a day and Azithromycin 250 mg a day. I anticipate in another 2 months that I will be done treating for the Lyme disease and my dosage will drop back down to 200 mg of Minocycline per day. “
It appears you are both seeing the same doctor, so I thought it might be interesting for you to compare. Of course two different patients probably require different regimens.
rick
Rick- I think we are seeing the same doctor. I have already done two rounds of clindy ivs with Dr. S and cannot take minocycline due to DIL. It is interesting to see the different protocols. But, you are right, it does seem like an enormous amount of antibiotics!
[user=2609]BG[/user] wrote:
Very important, please read:
http://www.state.ia.us/ibme/Press/2009/02_26_2009.pdf
<span style="font-size:"3"]http%;”>[/size]I found the above, just like you, on internet about 5 weeks ago, prior to my making an appointment with the doc. And I am most happy that he is LLMD now. I've heard only most wonderful things about this LLMD.
I don't know what exactly happened and after reading these announcements and considering all the possibilities, I think it's our gain.Anybody at all, in any capacity, may come across a person (or a patient / patient's family) whose anger, venom and need to charge will make big waves, disrupt careers, etc. You are one very lucky person if you never encountered people like that. And all kinds of other things can happen, too. There will be more of those in hospitals and dr's offices. Of course! I, myself, have noticed the impact of the disease on my personality. It is not just depression, it is often downright aggression (thank God it is all inner, not the outer, reaction thus far) and I used to be always happy, sparkly and soothing ruffled feathers.
All I'm saying is things may happen. My wonderful friend, quite famous orthopedic surgeon himself, commented once on a dr : ” He hasn't had even one complaint against him within last 10 years”. It made me think. “Even”? So they do happen. And what happens when you as a doctor have a patient with big and very angry ego and some “connections”?I think I am more upset about you posting it than with the fact that something happened. I cannot quite figure out what your motivation is. I only hope you are trying to instill more hope within all of us who are happy to have found this LLMD and are or will be working with him on getting well. I have read a lot of most wonderful postings about him. And I think most of us read the same things on internet. Maybe if he had had very strong “connections” there would be no above links to show.
I am most happy to be seeing him in 2 weeks time!Wonderful everything,
Krys
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