posted
I saw my Infectious disease doctor yesturday, and she happily concluded that I should be well by now. I will not be seeing her again, I don't think. I am seeing a LLMD on tuesday. I am praying he will extend my treatment with antibiotics. I do not know what to expect, however. I have had Lyme for about 7-8 years, undiagnosed. I am almost done with my IV Rocephin 28 day course.
I would like suggestions as to what ABX are usually recommended AFTER the first month. How long should I expect to be on them? And what do I do to keep the yeast at bay?
Paula
-------------------- Jer 29:11 Posts: 12 | From Braselton, georgia | Registered: Sep 2005
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posted
If you're seeing a LLMD (thank goodness you are), he/she will test for coinfections. Some LLMDs just go ahead and treat you for all known coinfections since the tests are so unreliable. And that's a good idea in my opinion.
The antibiotics for lyme and co. are too numerous to list. Your LLMD will make decisions about how to proceed with treatment.
How long will you be treated? There are just so many variables to consider it would be impossible to guess. What one generally takes into consideration is how long you've been infected, your symptoms, the status of your immune system, your age, coinfections . . . the list goes on and on and on.
Hopefully someone else will come along and post more thoughts than I've provided. I sure hope things go well for you on Tuesday and I will be thinking of you!
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Paula,
Congrats on the LLMD appointment. There are no easy answers to your questions though. Everybody reacts differently to the meds and needs a different combination and a different amount of times on medication.
Many LLMDs have to try a number of different abx before they find what works for you. It depends somewhat on your coinfections and somewhat on what your symptoms are.
I personally think that there are also a lot of infections that we don't know to test for. I think that's why some people react better to different abx. I think it's just like luckily picking the right med to get that unknown infection.
I also think certain symptoms need more than medicine. I had a lot of muscle related pain. I don't think I could have gotten the symptoms under control without a great physical therapist. I had 16 years of this building up in my system, and needed to do physical work with the muscles.
My personal experience, was that I saw improvement at month 7 on antibiotics. I'm now on month 18, and this is probably my last month.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
It takes a long time to see results ususally, especially when we've gone undiagnosed for years.
You've gotten some good answers above.
Just hang in there day by day....
Things will get better!!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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liz28
Unregistered
posted
I recently went into remission after being disabled for five years. I was seeing LLMDs the whole time, and abruptly got better after seeing a non-LLMD who happens to be friends with Dr. F.
Please let me strongly advise you--okay, out-and-out tell you--to read as many Lymenet posts as you can without passing out, even if you think the subject has nothing to do with you. Lyme is not like other health issues, where you visit a wise and kindly healer and go through a rigorous process of trial and error. It is imperative that you know exactly what all the drugs are, and that you take an active role in your treatment. If I had presented the antibiotic treatments listed below from the moment I walked into these former doctors' offices, I'd have gotten them, and would not have lost five years for no reason.
Here's the drug combinations that have worked for me. Please do not imagine that I took these all at once. I took the Lyme/babesia treatment, then switched to the Lyme/bartonella treatment. If I had to do it over again, I'd treat the bartonella first.
It took ten months to get rid of the babesia, and I still take artemisinin as maintenance. I ramped up on rifampin for bartonella for four months, then took the full dose (with ketek, but you can also use bactrim or zithromax) and was symptom-free in eight weeks.
I now jog, lift weights, practice yoga (which produces mild Lyme flares, but nothing serious), and work seven days and three evenings per week.
Lyme: omnicef 300mg/2x day ketek 400mg/2x day
Bartonella: Rifampin ramp up for four months with 150mg/2x day Then: rifampin 300mg/2x day Ketek 400mg/2x day
Babesia: Mepron 2 teaspoons 2x/day Artemisinin 300mg/day Ketek 400mg/2x day
Liver support: Phosphatidylcholine (high strenght lecithin) CoQ10 Milk thistle NAC Dr. Zhang's Hepa Formula 2 (active ingredient=schisandra)
posted
In my opinion, one of the best probiotics is Primal Defense by Garden of Life. When I was on another forum, I mentioned that the doc where I was going had me on Jarro-Dolphilus, several people on the forum said Primal Defense is so much better. They were taking 4 to 6 a day.
I've now been using it about a month and I can really tell a difference with the candida.
I don't know what will work for you but here's what worked for me:
I've been on antibiotics for 14 months and have seen huge improvement.
I have kept yeast under control by taking primal defense caplets 2 hours after I take abx and by sticking to a strict anti yeast diet. I did this pretty early on. see www.wholeapproach.com. I'm stricter on the diet since switching to Plaquenil & Biaxin. I currently do not eat any grains (incl flour), fruits or sugars. I eat lots of vegetables, eggs & nuts and a little meat, fish & cheese. I have gotten used to this diet and feel good on it. Despite the drugs my stomach & digestion are just fine.
I used to be able to eat a little bit of grain and cheat occasionally but not any more.
I took an inadequate dose of doxycycline from the time I was diagnosed until I got an LLMD. During those 4 months I continued to get sicker. Once my LLMD put me on high dose tetracycline I saw immediate improvement. My brain fog cleared up immediately. The months ahead were up and down with some severe herxing on the 3rd & 4th week. I continued to make improvement.
After 5 months of tetracycline I switched to Plaquenil & Biaxin. After a few days feeling lousy, I adjusted to the drugs and had an increase in energy. Brain fog was 95% gone and I started to feel "normal" again. Progress is continuing.
I am able to work now. I still can't exercise much or it saps my energy and I can't do anything else. I am able to walk a lot though. I sometimes have many hours when I forget I have Lyme. A few days have been nearly symptom free. All my symptoms are milder and less frequent than before.
Good luck and eat lots of salads.
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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