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lifedancer
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/26/2009 5:29 PM (GMT -7)   
Hi, thanks for taking the time to read a new person's post. Most of this is a vent.

I got my positive diagnosis last week and I have been on doxy- 100 mg 2x day - the "norm" I guess - for 6 days. I probably got my case in late June or early July 2009. So I know I am lucky to have been tested, diagnosed, and treated within a few months - especially since I didn't have a bite or a rash right away. I spend part of most summers in a heavy Lyme area - so my Dr. trusts my early symptoms even though she has almost no experience with Lyme where I live the rest of the year. Yet I can't help but wonder if I should be be a higher dose...especially since it might be possible that I've had it much, much longer? I have read most of the Newbie posts, thank you for those. I haven't gotten my labs back yet to examine...but...

here's the vent: I'm feeling really stupid and scared that I waited for test results to treat. My Dr. was willing to treat me right away, I think I was really hoping that it wasn't Lyme - at that time my primary symptom was a headache. I had a bad headache that lasted days and didn't realize that was a symptom - and the ibuprofen I was taking was probably masking other symptoms. Once I went off the ibu's the muscle pain started I was pretty darn sure. Now, 7 days into the doxy, and about two months after when we think I got it, I've got joint pain, mostly elbows, wrists and ankles, swollen achy stiff hands, and tingling and numbness in my fingers and I'm starting to freak out. I don't have a LLDR yet. Any words of support and suggestions are appreciated. Seriously, is there any chance that the protocol I'm on is going to work?

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 8/26/2009 6:21 PM (GMT -7)   
You found a great place. Somebody will get back to you with better info. You really should see a LLMD and get a higher dose of Doxy.
 
Good Luck. Feel free to ask anything.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/26/2009 9:52 PM (GMT -7)   
Hi lifedancer,

Welcome to the forum! We're so glad you found us:) I love your nickname by the way. 

This is just my opinion. I am not a doctor and this is only from what I have researched but you should be on at least 400mg of doxy for a new infection. Did you ever get a rash at all? Most people don't get a rash or even know they were bit. I am just curious. 

Since you are having all those symptoms, I'd ask your doctor to increase your dose....just to be on the safe side. 

Here is some information on dosing and Lyme Disease. 

>>Dosage:

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.<<

http://www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 8/27/2009 6:04 AM (GMT -7)   
Welcome lifedancer! As Lyme is treated and dies, the dead Lyme forms toxins. Detoxing is super important to help your body rid itself of the dead Lyme. A portable infrared sauna can do wonders. You can find one for around $169 new on ebay. If you google infrared sauna, you will be amazed at the health benefits. I was on antibiotics for over 2 years. It wasn't until I started doing other things, like the sauna, that I finally feel like me again.

lifedancer
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/27/2009 9:47 AM (GMT -7)   
Thank you CajunGrl, ttlittlestar, and Really Lyme for your quick and helpful responses. I am getting up the nerve up to call my Dr. and ask her about a higher or longer doasge of Doxy. Even the CDC's link has a protocol for Lyme Arthritis for 28 days, and that was published in 2000! I think NLLMD's aren't even aware of current practices in their own sphere.

ttlittlestar thanks for the detox info. I have been going to the sauna but I can tell it will take work get this all out of my body. The portable sauna sound great!

CajunGrl I like your nickname too! I went with mine on the day I got my diagnosis - thinking "OK, I'm going have to dance with this now too." Some days it may be a pissed off angry dance, though, or a weepy poor-me dance. Today it's a "buck up and talk to the Doc and call the health insurance" dance.

I didn't get a rash right away. In early July 2009 I found two deer ticks crawling on me, and I thought "where the buggers are crawling, there friends might be attaching"...I didn't do very complete tick checks daily though, and I didn't test and treat until the obvious symptoms showed up, then I got tested. I was kind of denying my instinct earlier. I "had a feeling" that I got it this year. My NLLMD admitted later she was shocked when my test was pos! I'm grateful to my body, in a weird way, for giving me an obvious signal that Something Was Wrong. Then I got a mild upper arm rash six weeks after exposure. I thought I knew about Lyme but it turns out I missed the severe headache as a symptom initially (I also didn't know about the high instance of false negatives and the complications in testing) so given the fact I have potential exposure each summer I really should have treated right away...but that's in my past now, and I am moving forward today. : )

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 8/27/2009 11:40 AM (GMT -7)   
Lifedancer, You should print out Dr. Bruscano's (sp?) guidelines and take a look at them, you could even bring them to your doctor if you think they are open to something like that.  If they are maybe the could give you a longer Rx for the Doxy.  Read all you can, you really have to be your own advocate. 
Take Care, KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/27/2009 11:49 PM (GMT -7)   
lifedancer,

I really like your attitude. That is what we need to get through this disease. I'm glad you still have a fight left in you. It's very imporatant to never give up, no matter how bad you feel.

Good luck hun. Keep us updated on your outcome.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

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