I'm new to this very informative board. I was diagnosed early March 2008 with LD along with bart, babs, and ehrlichia.
I am only 9 weeks into abx; but, I just see zero for any improvement. I believe I was infected 3 1/2 years ago.
My LLMD has me on 500 mg Zithro, I just started Flagyl - but it's just 500 mg. twice in one day...but only twice per month. Have you heard of this type of dosing?
The plan for me is to switch out the Zithro for Doxy and Mepron at the end of this month. I believe her concern was hitting it too hard too fast - making me just too sick
I'm also on thyroid, many supplements and eating an anti-inflammation diet.
My neuro symptoms are crippling...not in the literal sense; but, I am just so jittery/trembly/tremors 24/7...some days/hours I'm much worse, other days/hours slightly improved, all very random.
I'm discouraged. I know this is so early on, just wanted to touch base with this board.
Thanks loads. I appreciate any input/info you can provide.
[ 06. May 2008, 05:19 PM: Message edited by: tickssuck ]
Posts: 566 | From West Coast | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Oh my gosh! your plate is certainly full! Welcome to the group. I did not see any improvement after 9 weeks either. Although it is discouraging, you will eventually see improvement.
If you have been infected for 3 1/2 years before beginning treatment, the buggers have had their way with you for awhile. It's going to take some time to eradicate all of these infections.
Let me be the first to say that if given the chance to choose to kill the bacteria slowly or go in for the massive kill, I would opt for the slow and steady. My 1st herx was HELL and lasted 2 1/2 months, mostly in bed.
When your bacterial load is so high it is better to kill them slowly so that the herx doesn't kill you.
Others will be along w/ more advice than I am able to give....Just wantd to say welcome!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Treatment for Lyme can be very unpredictable, but just stick with it. You'll have huge ups and downs, with no way of telling when they'll come.
I've been on treatment for about four months. I got much better after a month, then it came back twice as hard a few weeks later. A week ago, I was in hell, five days ago, it felt like someone just flipped a switch and turned most of the Lyme off; I felt half-dead Thursday, then I got out of bed Friday and just felt better than I had in months. I still have some symptoms, and I know I'm not done with the Lyme by any means, but I've definitely enjoying the reprieve, even though it's likely temporary at this point.
It's a very tough disease to deal with, but keeping a positive mindset is -very- important. You absolutely will get through it, no matter how much it feels otherwise at times.
Posts: 23 | From Rhode Island | Registered: Dec 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I've been treated about nine weeks also. Thought i had a couple good days, then wham -- migraines from hell, total body herx, thought i would die a couple days ago.
My meds are low-dose -- glad about that now! Hang in there--you will feel *the love* (lol) soon.
Posts: 1173 | From USA | Registered: Nov 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Welcome!! Glad you found us.
quote:My LLMD has me on 5oo mg Zithro, I just started Flagyl - but it's just 500 mg. twice in one day...but only twice per month. Have you heard of this type of dosing?
Flagyl is a cyst buster and I've seen some strange dosing for cyst busters. You don't want to release too many spirochetes at once and you want to be sure to have something on board to kill them.
quote:The plan for me is to switch out the Zithro for Doxy and Mepron at the end of this month.
I'm not a doctor but zithro is usually given with mepron to keep babs from becoming resistant to mepron.
According to the manufacturer of mepron, doxy can reduce the effectiveness of mepron by up to 40%. I got this directly from their pharmacist. Several other people have been told the same thing. Mepron is very expensive. Last I checked it was over $800 for one bottle which typically lasts for 3 weeks.
I took mepron with doxy at first but my doctor switched it out at my request. I have to go back to mepron after babs treatment because 6 1/2 months of treatment was not enough to knock it out. Who knows if not taking doxy would have made a difference but it certainly seems possible.
The book about babesia by Dr. S. is a very good source of information on babesia.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Wow, tickssuck, you are on some heavy duty ABX dosing. I can't tolerate zith, much less Flagyl. No wonder why you're so ill!
I found the most improvement with doxycyline. It cleared my brain fog, but then it leveled off.
I'm now on to Plaquenil to hit the babesia.
Good luck. CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I am so thankful for the information/education that is available to me. I must admit, it sometimes makes my head spin! What to do?
CherylSue...no one has ever commented that I was on such a heavy abx plan. When I read Dr. B's guidelines it doesn't seem so.
I guess every case and LLMD are different. Does anyone else think the abx therapy is way heavy - keep in mind I'm packing babs, bart and ehrl on top of the LD. Thanks!
Posts: 566 | From West Coast | Registered: May 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Everybody reacts to antibiotics differently.
There is evidence that doxy lowers the effectiveness of mepron.
Also doxy is hard to take during the summer due to photosensitivity issues.
I herxed the first two months straight on antibiotics.
Felt better for about 2 weeks, then bam!
It has been a roller coaster ride ever since.
Hang in there.
Give it more time.
Drink plenty of water. Watch your diet and take your probiotics.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Simple answer: Yes. Expect 4-6 months to really notice.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Thanks for the heads up on the doxy/mepron combo. I will definitely read up and discuss this with my LLMD at my next consult - will be interesting to hear her thoughts and knowledge. Thanks again.
Posts: 566 | From West Coast | Registered: May 2008
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posted
Hi and Welcome I, too went undiagnosed for 3 years. My first LLMD started me on low dose abx (like yours) with cedax 400mg twice a day. I saw immediate relief but unfortunately after 2 months I started sliding downhill with even more worse symptoms than prior to treatment. You really can never tell when your gonna start to feel better.
I do see your Drs concern for not giving you too many abx right away, but for me I thought treating aggressively was the best way to go, so I switched LLMD's.
I now am on 6000 mg amox with probenecid, 500 mg zithromax, 400 mg plaquenil 4 tsps mepron and various supplements and herbs (I hope this was a good idea though since I am now in bed 90% of the day when before these high dosed abx I was still pretty functional without the terrible brain fog I have developed)
I have never been on that combo before, but I am suprised your Dr. wants you taking Mepron and Doxy. Usually Mepron and zithromax are taken together.
Posts: 370 | From NJ | Registered: Dec 2007
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Thanks for your welcome and reply. Yes, my LLMD is really trying hard, at the same time I don't think she's treated that many Lyme patients. I am consulting with a ND who is also an LLMD next week to get someone else on board with advice and strategy. I also know this other doc has more experience with Lyme.
I want to hit this from all angles, if aggressive abx can help, bring it on; any additional naturopathic supplements to help - fine by me. I am already watching my diet closely, low carb, no sugar etc.
I don't know if my LLMD just forgot about not doing the doxy w/ mepron or maybe I misunderstood her, not sure. But, I will discuss this with both docs before the mepron and make sure we get it right (I hope).
Sorry to hear you're feeling so badly. How long have you been on the more aggressive treatment? I hope you start seeing positive results soon. Take care.
Posts: 566 | From West Coast | Registered: May 2008
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