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Posted 7/19/2012 2:48 AM (GMT 0)
Hello  - I had dx of early diseminated LD by western blot on 6/18 - long list of symptoms and bulls eye.  Rx of 100mg/2x Doxy starting 6/22.

Last Doxy on 7/13 in AM, I had a few days of great improvment then beginning 7/16 minor joint pain, stiff neck, mild headache, brain confusion increased. 

Does this seem standard as part of back to normal - slowly getting better over time or relapse?

I had a retest on 7/12 - right before my last two doses of Doxy - which came back "NO ANTIBODY TO B. BURGDORFERI DETECTED BY EIA" - which is good news, I think.

Any advice is helpful, I sure do not want to go back to devil & herxing.

Thank you all.

Posted 7/19/2012 8:16 AM (GMT 0)
I would try to see a LLMD. Often doxy alone for 4 weeks (especially in a low dose) is not enough even for early cases. I had a month of doxy initially with a regular doctor and the same thing happened. I got better in the 2nd week and then started to get worse.

As you probably know there are two opinions regarding Lyme. The IDSA thinks that pretty much everyone with Lyme improves after a short course of doxy and if they don't, it is normal to feel really bad indefinitely and there isn't a treatment for that. ILADS thinks that if you don't feel better after a "standard" treatment you still have an active infection. I 100% agree with the ILADS viewpoint. I would find a LLMD ASAP to discuss longer treatment whether with antibiotics, herbs or something else.

I quickly went downhill after my first course of 200mg of doxy. I started to have liver and heart involvement, unconscious seizures, paralysis in my limbs, twitching, pain etc.

The ELISA test is EXTREMELY inaccurate and cannot be used to determine if you still have Lyme. Determining if you still have Lyme should be clinical. That's why a LLMD is needed because they are more likely to work with you based on your symptoms rather than just a one-size-fits-all guideline. Some of the sickest patients don't test positive at all after a while because their immune systems are so damaged that they don't produce antibodies anymore.

Good luck with whatever you decide to do. I hope you start to feel better soon.
Posted 7/19/2012 11:11 AM (GMT 0)
I second Summer's opinion and strongly encourage you to go and get further effective treatment from an LLMD. Let us know if you need help finding one.
Posted 7/19/2012 1:39 PM (GMT 0)
Thank you both, I do need to see an LLMD. I feel right back to the beginning with the symptoms in less than a week off the Doxy.

I expect my LD to date back to April/May of 2010 (maybe earlier) so it is not really so simple. I was to be referred to Infectious Disease Dr by my PCP but that is not happening until Aug if at all.

Based on my last blood work on 7/12 I have elevated ALT and AST enzymes - liver problems?, looking back in my med records in 12/07 when my gall bladder was removed I had a "tiny" cyst on my liver (great). Also blood showed low Free T4 on my thyroid another thing that needs to be in good shape to fight the LD.

I feel that my only choice now is to beg my PCP for more anti bio to buy time to find and appoint with an LLMD. I will take prime care of myself as well as I can starting with breakfast.

I would like help finding an LLMD in the boston area.

Thank you both so much.
Posted 7/19/2012 5:06 PM (GMT 0)
Hi aliabb3 - welcome to the forum! I posted a new thread for LLMDS in Boston - so keep your eye on that. Also, make sure your email address is available so our members can send you personal recommendations.

I think you're on the right track - a lot of people get "tricked" into believing that if they're still sick after a short course of antibiotics, it must be something else, but all of us here know that lyme is a persistent bug!

You might also want to look through the "new to lyme" thread if you haven't already - there's a lot of great information there put together by our members to help understand lyme disease, as well as some suggestions for detoxing which can alleviate your symptoms both during treatment and in the meantime. Best of luck - we're here to help however we can!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 7/21/2012 2:02 AM (GMT 0)
Hello and thanks for helping out.

I have to give kudos for all the great info and support given on the "new to lyme" thread, it was what got me through the first days of my doxy & herxing. I am new here but I can see that just a visit to review the topics on the current posts gives a true sense that you are in good company with a huge amount of support and understanding.

I am going with the LLMD as suggested for proper treatment but I will be keeping an appt on Monday with the Infectious Disease Specialist I was refered to by my PCP today. I hope things go well and since my symptoms are back, in a rather random order, including irritability, frustration and rants it will be a long weekend.

Thanks
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