In the beginning my case was almost identical to what you describe. I found that I was heavily co-infected with Bartonella and the low dose doxy just annoyed the bart more than anything and sent it north deeper into the CNS.
More people will chime in soon but you have to get to an LLMD and get treated according to ILADS guidlines. You really have to be on multiple abx to cover several forms of lyme and possible co-infections.
Levaquin is my super drug. I also did well on Doxy for a while so although the levaquin was not curative for Bart, I am hoping adding Minocycline as a second inter cell abx might push me around the corner.
The initial "standard" 4 weeks of doxy left me ten times worse then before I had started. Thanks to the IDSA that was all I was going to get and I can rot in hell for all they care.
I believe a big problem for many of us is under treating these bugs in the beginnning. These bugs are extremely hard to eradicate from the body and you might be in this longer than you bargained for.
The anxiety and deep brain fog makes me think Bartonella as a possibility for you. Hope you are well soon.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
As I am on day 11 of a flagyl herx, yes I would say the cure can be worse than the disease at time. Just have to stay positive (hard to do) that you are on the right course and killing the bacteria.
If you have only been sick for about 5 months your chances of recovering should be very good. Many people on here have been sick for a very long time.
Stay tough. I know that it is really, really hard. Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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I was cast as Lola in Damn Yankees. I thought this would help to take my mind off my body, but it has been so difficult to memorize lines and the constant mucus makes singing as difficult as well.
I can put up with most anything if I see a light at the end of the tunnel.
But when I read some of the stories on line and how long some people have been living with this, it gets a bit depressing.
I am going to a LLMD. My internist wouldn't even put me on anything even though 3 bars showed up on my Western Barr
Posts: 13 | From MD | Registered: May 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Many people initially get worse during treatment BEFORE they get better. It is caused by the dying bacteria, and is often called herxing.
I never could tolerate doxy for too long. Went a couple of months, but fortunately there are other abx to treat lyme and other co-infections. Speak with your doctor about other possibilities.
Also, you are on a very low dose of doxy, so maybe it is not as effective for all symptoms as one might like.
Posts: 2557 | From home | Registered: Aug 2006
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I hear ya. It is tough to stay focused on the light at the end of the tunnel when you feel like you can't even see the tunnel.
Glad that you are with an LLMD.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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Also I have an appt. with an integrative Dr. here that is suppose to be great.
It took me 3 mos. to get an appt. He takes no insurance. But at this point I'd sell my husband for the money to see him. He's very cute. Any takers? Posts: 13 | From MD | Registered: May 2009
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yeah, it can cost a lot to get well from this disease.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have treated LD for one full year. I feel horrible the whole time I take antibiotics, but tend to feel better when I am off of them. I have taken several breaks from them. For some of us that is the road to the cure. While others seem to feel best while on meds.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I've been on antibiotics for six months. Every month, for two weeks I feel like crap. Fatigue, body aches, increase in neuro symptoms. Wish I could just take a handful of pills and be comatose throughout my horrible herx's. Today is a bad herx day.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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