lifedancer update/track-a-newbie

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lifedancer
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/28/2009 8:35 PM (GMT -6)   
I thought I'd post my updates under this title and see what happens! If I end up with PLD or RLD because I couldn't get enough doxy soon enough, I can join the case studies. Don't get me wrong, it's too soon for me to be bitter, and I'm going to try again Monday to get a longer, higher dose. (I have an appointment with a ID guy Sept 17th, but I gather he could be even less aware of the new protocols - and more biased against them - then my current Doc is.)

The Story: So my friendly NLLMD called me back today, unfortunately right after I left work and before I got home. So I'm juggling my purse with my swollen achy hands and my sore forearms, trying to find my notes and get to a quiet street because who knows what will happen if i don't talk to her right now, right? She's got the names of three ID guys for me and agrees to fax me my labs and a script for massage so my insurance will cover it. (Hurrray!) I give her a quick report of my new and increasing in severity symptoms and she asks if I'm taking any ibuprofen. I say not much cause I sort of want to keep a sense of what's going on (read: in case I have to "prove" to someone that I have disseminated LD to get more meds?) She says she's worried about long-term damage from the inflammation, that sounds reasonable, so I agree to go back on the ibuprofen.

I get up my courage to ask about a higher/longer dosage. I can even quote that the IDSA protocol for Lyme Arthritis is 28 days. (She gave me 21 days)
But I freeze when she asks me about when I heard about higher dosages. I obviously don't want to say "some cool people on the internet". (Though you are. All. Really. Really. Cool.)

So today I actually printed out the ILADS guidelines and I'm really reading them. Then I'll get back on the horse Monday, present her with these findings and ask her:

"What if it's possible that my (2-month old) LD doesn't respond to 100 mg 2x daily, and it could be cleared by a higher dose? What's the risk/benefit analysis and will you consider it?" Cause the clock's ticking, lady!

Send me courage to keep asking for what my instinct tells me. Sometimes I feel like everyone wants me to just take my doxy and wait and see. Wait and See with LD seems like a very very risky proposition. (I feel like I had my chance on the phone today, I blew it, and now I get to enter the "annoying/crazy patient category" by calling again). That's just my fear talking.

And, I keep forgetting to take my probiotics because of the timing - 1/2 after meals but at least three hours before the doxy...this weekend I'm going to make myself charts of what to take when and eat what when, etc etc.....I could go on and on but the wrists say noooooooooooooo moooooore typing! massage us with arnica, please!

Oh yeah, my husband's Nurse Practitioner refuses to give him a Western Blot with the Elisa. I have explained to him 1000 times that the Elisa is 35% or more false negative, but she said the Western Blot costs $200 and there's no way she's going to do it unless he gets a positive or an inconclusive on the Elisa!!!!....he was in same tent in the same woods as me for the same week, and I never got a bull's eye or found an attached tick, argh, argh, argh. And it took me a week of begging to get him to even ask for a Lyme test. I don't want to seem paranoid, but his ankles hurt! End of rant.

God/Buddah/Higher Power/Your Inner Guidance Bless Us All!
I'm going to watch a movie and try not to think about any of this for a while......and not eat anything so my stomach will be nice and empty for my yummy doxy at eight!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/28/2009 10:55 PM (GMT -6)   
lifedancer,

You should seriously right a book. I felt like I was right there with you, in your car while you were juggling your purse, looking for your notes, lol. I'm sorry you froze up like that but it's okay. You can go in there Monday with the correct information in hand. If you talk to her like you just posted here, I think she will listen. Let us know what happens. Good luck!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 8/29/2009 6:39 PM (GMT -6)   
Hope you found a good movie, and I agree with CG, I was ready to help you catch your phone in case you dropped it. My PCP would only do 100 mg bid. She looked it up and came back and said that she could only prescribe 100 mg bid. She did at least keep me on it until I got to the IDMD. In 2005, when I was bitten I was only given 10 days of the doxy, by a different doctor. I did improve at the time, but relapsed in March. The symptoms were slightly different this time, but not going away with the doxy, so I was put on IV ceftriaxone for 28 days, and that worked. I also take an herbal treatment and supplements to keep my immune system strong.

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 8/30/2009 4:03 AM (GMT -6)   
Hi Lifedancer,

Welcome to the forum. I think I have read that it is better to take doxy with food because it can really cause pain and stomach issues. Also, I think it is advised to take with a lot of water because it can cause esophageal erosion and pain. Also, don't lie down, but reamain upright for 30 mins or an hour, for the same reasons. Plus, I can't remember what foods/supplements are not to be taken at the same time as doxy. Sorry, my memory is shot from this illness. Hopefully, someone else will post about the other "rules" of taking doxy. Also, be very careful of sun exposure. You can get severe sun burn from even a little bit of sun while on doxy. Maybe there is a post in the newbies thread that talks about this (again, I can't remember) but it is worth reading "The Basics, Newbies check this out". It is located at the top of the first page of this forum. Please remember to take your probiotics. It is very important to help you, especially when on antibiotics.

Good luck to you and your husband. I hope your recovery is swift and complete.

Best wishes, bablymers mom

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/30/2009 5:54 AM (GMT -6)   
Lifedancer,

Here is a great site explaining everything you need to know about Doxy:

http://www.ehow.com/how_2165217_avoid-doxycycline-side-effects.html
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


lifedancer
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/30/2009 8:48 AM (GMT -6)   
You guys are the best. Thanks for the word on Doxy, too. I've read conflicting things about Doxy (shocking!) : ) like take it on an empty stomach for best absorption or with food (but no dairy because it binds with calcium) to avoid stomach pain. I've experimented and compromised and let my stomach get empty then take it with the smallest amount of food possible and lots of water. Boy, am I getting good at drinking water.

I am realizing I have to let my husband have his own journey with this. As much as I want to jump up and down and "insist" (ha ha) that he get a western blot somehow I realize that each of us have to figure out what we think is best for ourselves. That's hard when it's someone you love like crazy!
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