posted
Can someone tell me if there are degrees of Lyme disease? What I mean is if someone has a 5.9 Lyme antibody, are they sicker than someone with a 1.9? I'm so tired of this illness I would love to quit all meds, go on a long vacation and come back well. I know if I don't continue treatment my organs and tissues will be destroyed, so I'm hanging in with this. I just wish I knew the prognosis and if I will ever be well again. I've been on different antibiotics for 18 months and it feels like I'm still at square one. Am waiting for results of newest Western Blot but my body is telling me I'm still sick.
Posts: 13 | From ri | Registered: Sep 2003
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hopefully someone else will come along to correct me if I am wrong, but since everyone's body reacts differently to this disease, I don't think there's really a way of telling how sick someone is by their antibody count.
Also, a higher antibody count could mean that your body is doing what it is supposed to: fight the Lyme bacteria.
People who have had this a long time without proper treatment often have little to no antibody count as Lyme bacteria can hide out from the immune system.
If the immune system doesn't see the bacteria, it won't attack it (won't produce antibodies).
Or, if the immune system is run down from having this a while, it will produce little antibodies in trying to fight it.
Probably the best thing you can do with lab results is keep careful record of results compared to your symptoms. And use the lab results to compare to how you specifically are doing.
But remember, Lyme is a clinical diagnosis. Lab results may or may not mean anything. You've got to go by how you are feeling.
Sorry you're having a rough time. A lot of us have been there but are finally feeling a bit better. Hang in there violet! Know that we are all pulling for you.
------------------ Tabby
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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posted
So sorry you aren't seeing much improvement after 18 months on antibiotics (abx). This has to be discouraging for you.
A few questions come to mind, but you're not required to answer them.
Are you seeing a Lyme Literate Med Dr (LLMD)?
What abx are you taking & what dose per day? Was wondering if it's the dose recommended by Dr B in his "Diag Hints & Treatment Guidelines..." www.ilads.org/burrascano_1102.html
Read "Basic Info", part 1 & part 2, at www.ilads.org
posted
cbb, I am currently taking 500 Biaxin twice a day. Previously I was on 500 Amoxicillin three times a day. I was on this for 9 months. Following that I went on 250 Zithromax twice daily. That made be very ill and at that time I gave my body a month-long time out. After the break I started on the Biaxin. I've been taking that for a few months. I also take Acidophilus supplements with pectin twice a day with meals, and eat yogurt. There are no LLMDs in RI but the doctor I'm seeing has been treating Lyme patients and has Lyme herself. When diagnosed I was checked for co-infection but not since then. That was July, 2003. I am discouraged because in July, 2002 I noticed the rash, had flu-like symptoms and high fever and met my dr at her office on a holiday. I was immediately put on Doxycycline for three weeks. I had no further symptoms and thought I "caught" it in good time. About 6 months later I began having weird symptoms. After a few months of that I went back to my dr who instantly remembered the rash and tested for Lyme which was positive. That began my odyssey. I have read as much about Lyme as I can find, especially anything by Dr B. I am now reading Coping with Lyme Disease by Denise Lang. It's very informative and does validate a lot of what I'm feeling. I'm going to pass this book on to family members and friends who are trying to help me cope with this. tabbytamer, thanks for the info. It helped to make some sense of this.
Posts: 13 | From ri | Registered: Sep 2003
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
You're welcome, Violet
Like I said, I'm sure there are others that could explain things better than I. This is such a complicated disease. And it seems they are finding out new things everyday.
Violet, hang in there. You did get some treatment from the start. It wasn't quite as long as suggested--at least 30 days. Actually, I think the new guidelines are recommending 60 days--
But at least you got something right away. I'm sure it did do some damage to these critters trying to set up housekeeping in you.
Hopefully you'll be able to kick this before too much longer.
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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