posted
I found out that I had Lyme over a year ago. It took three doctors and about five months after symptoms started to get the diagnosis. I ulitimately found a LLMD out of state who treated me. I was on Doxy for approximately 8 months. I got off of them and have done quite well till a few weeks ago. I had been to see my LLMD and he said that appeared my system was now fighting off the bacteria, so he was good with me going off.
In the last few weeks and occurring more frequently one of my original symptoms was sweats and then chills. This symptom is now going on many times throughout the day and night. No fever involved. If you were me would you start back on the antibiotics again for a couple of weeks to see if these symptoms go away? I have plenty of Doxy left.
This stuff is intolerable. I am going back to my LLMD in August for a final followup, which may now not be the final followup. Do you think this is Lyme or some adrendal problem? Opinions please and thanks!
Posts: 44 | From Oklahoma | Registered: Aug 2007
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Lymetoo, thanks. I will call dr. c. and see what he thinks? Thanks. He is an incredible doctor but the first time I went it was so overwhelming with the big words, etc.
But he is a good guy and a brilliant doctor.
Posts: 44 | From Oklahoma | Registered: Aug 2007
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I got a call back from dr.c's nurse and she said he said to go ahead and go back on Doxy since that is what I took before with same symptoms. If doesn't work, move to something else. Has anyone else used Doxy for Babesi?
You know what? This all sucks!!! But I did get to go see my son down under during my "well" phase. Thanks everyone.
Posts: 44 | From Oklahoma | Registered: Aug 2007
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He kept you on Doxy for 8 months.. And he told you to stop because your own immune system was now fighting it.. I can't see him saying that. I mean really. Your own immune system is going to fight off Borelli? Has he asked you to switch abx's once you platue on one??
I see him too. We have a support group in our area. I have never heard of any one being treated the way you are being treated.
I have asked him about co-infections. He does not treat them because he said the same abx's that are used for Masters/Lyme is used for the co-infections.
Once you quit taking the abx how long did it take for the symptoms to come back? I thought I was healed a few times and quit taking them and the symptoms came back in about 3-7 days. He told me next time if I feel symptom free to keep taking the abx's for about 2 months once I feel symptom free then after the two months then try and quit.
He actually told you that your own immune system was now working to fight the infection off.. wow.
Posts: 22 | From St. Louis, MO. | Registered: May 2007
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First a single abx such as Doxy will not cure Lyme no matter how long you take it.
Lyme takes several forms in your body; spirochete, cycst etc. and can reside in many parts of your body. This is why most LLMD's treat with differnt abx based upon symptoms- pain vs cognitive as well as cycst busters such as bixan and palqunal (sp) that can kill the cystic forms.
One of the key problems with the Lyme bacteria is that it is NOT universally controlled by a single antibiotic- say like Syphilis.
Second I would also get checked for co-infections such as Babesia and Bartonolla as the sweats are very common to Babesia.
For what it's worth I learned the hard way. Got bit and Lyme 10 years ago. Given 2 weeks of Doxy, then a month or so more 6-8 months later.
Fast forward 9 years and I was never better till I saw a real LLMD, found out I most likely was still very positive for Lyme with 10 positive bands of WB and very positive for co-infections Babesia and Bartonolla-- that I had never really heard about before.
Now after 5 months of treatment 3 for babeisa and 2 for bartonolla-- im felling better, not 100% but better.
Take care
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
Do you remember how long it went from the time you stopped abx, until you started feeling worse again?
Posts: 275 | From Home | Registered: May 2007
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O.K. here's what happened folks. I originally had symptoms (fatigue, hot, cold) for approximately 4-5 months before I got the Lyme diagnosis. I was put on Doxy for about 7-8 months. Then one night after that 7-8 months, I did something stupid and I took two abx with some milk late at night and went to bed. That was early Feb. Low and behold I burned my esophogus. I don't what I was thinking but I knew better. I went to gastro doc. He said stop taking all meds immediately, he said for sure I had a couple of ulcers. It was agony like I have never known, couldn't even swallow water. Called Lyme doc and he agreed with that, of course. After starting to get well from ulcers, I didn't go back on antibiotics, as was feeling good. It is now June 10 and no symtoms till last couple of weeks. So I went almost four months with no symptoms. When I was originally was diagnosed and did my own research I was under the impression the sooner you go it, which was like I said about five months, that I would not have to take ABXs for years catching the Lyme within several months. I appreciate all you and I am now so confused. End of April went to Lyme doc, told him had been off ABXs since Feb and doing fine. He did tell me that my body was now probably fighting off the Lyme (not in those exact words) and my husband was sitting right there. We had come back from NZ and he did say that and to live a stress free life. (I just asked my husband if that was said, yes)
Posts: 44 | From Oklahoma | Registered: Aug 2007
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Sixgoofykids, yes I was symptom free for a lot of months while on ABX's (Doxy) never felt the need to go to next med. In fact I kept wondering why I was taking them at times, maybe that's why I got lax and forgot and took those two right before bedtime and screwed up the esophogus. That's the only reason I stopped.
In fact I just came back from gastro doc, had a scope to look at esophogus today. All healed from that ordeal. So I couldn't take any abx or anything today.
And yes, if I don't see any results pretty quick, I will call him and see what to do next.
Everyone, I am not as literate in the Lyme world as you all. I have done a lot of research when I found out, but I also know that I tend to dwell too much sometimes and I have to back away. I've got the books, etc. Thank you.
Posts: 44 | From Oklahoma | Registered: Aug 2007
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Don't apologize, kiwi. You're doing great! I'm sorry you burned your esophagus.
I'm having trouble with mine too, though it's not because of abx... unless I messed it up when I was taking abx for a sinus infection over the past months.
I'm glad you hear that yours is healed up!!!
Relax and get started on the meds when you can.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I really hope it works for you. It's good to hear about people who are cured quickly. My daughter only had to take abx for 8 months and three of those were symptom-free.
My daughter did have a Lyme flare up when she got the flu, but it self-resolved and hasn't come back at all in the past couple months. The doctor has kept her on some of the Cowden herbs to keep her in remission and aid her immune system.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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