New to Lyme and need advice, please=)

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Candlegirl
Regular Member


Date Joined Jan 2009
Total Posts : 32
   Posted 8/5/2009 4:46 PM (GMT -6)   
Hello,
 This is the best and most visited Lyme forum I have seen so I wanted to see if I could get some input from you all!
 Almost four weeks ago I was bitten by a tick on a Saturday ( I was in the deep woods that day) and didn't find the tick until Monday evening on my ankle. I removed the tick and there was a small, small bump left. I didn't think another thing of it until one week later I noticed a rash on my ankle growing. I kept an eye on it for two days and it continued to grow. I saw my PCP and he prescribed 100mgs Doxy 2X's daily for two weeks. I took the doxy as prescribed and during those two weeks have had terrible night sweats, flushed feeling, dizziness and just alot of joint soreness. My period was two weeks late (no chance at all of being pregnant) and just yesterday I developed diarrhea.  Yesterday was the last day of antibiotics and the rash is still on my ankle. It not pronounced like it had been but is still definitely there.
 I have another appointment with my PCP tomorrow. My DH is military and I worry the doctor is not going to take me seriously tomorrow about needing more antibiotics. Do any of you have "reliable" (I find people more reliable than most doctors) sources that I can print off info about how much doxy and for how long. I want to be prepared tomorrow=)
Thanks,
Beth

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/5/2009 6:53 PM (GMT -6)   
Candlegirl -- I hope you get more replies than just mine, but I am concerned that you may need to go to the ER and not wait until tomorrow, depending on if your symptoms progress! I/we cannot diagnose lyme, but you must certainly have a TBI and you need stronger treatment.

Please be careful -- my ex-husband's brother recently died of Rocky Mt spotted fever. He did not have a rash, but he told them repeatedly about the tick bite and they never diagnosed RM until the autopsy.

I am seriously NOT trying to scare you, but we and our Drs ALL need to be aware of how serious these diseases are!

If you're OK til tomorrow, I'd suggest that you go print off this info from the Newbie section. There is a lot of good info in that section! Meantime, I hope others will also advise.

http://www.ilads.org/burrascano_0905.html
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


Candlegirl
Regular Member


Date Joined Jan 2009
Total Posts : 32
   Posted 8/5/2009 7:13 PM (GMT -6)   
I had just printed off that before coming back to the forum=) Thanks! I filled in the checklist and was quite shocked at how many symptoms I have.
  I am concerned that the doctor isn't going to take me seriously. The doctor who gave me the abx said that he had another lady come in and he gave her 7 days of doxy. I said that didn't seem like enough and he said well then lets do 14. He was just guessing. Oh my=(
 I am going to highlight the different sections with the recommendations. I am not taking this lightly, I am actually quite scared at what could happen. This stuff is no joke.
 

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 8/5/2009 7:57 PM (GMT -6)   
Good luck with the DR. Lyme is a very hard disease when it doesn't go away. You really need to be your own Health Advocate and remind the Drs they work for you.
 
Keep staying informed it seems like you already know alot of info on Lyme and can stand up for your self.
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


Candlegirl
Regular Member


Date Joined Jan 2009
Total Posts : 32
   Posted 8/6/2009 3:54 PM (GMT -6)   
 I went to the doctor today and was blown out of the water at how much doctors don't know about Lyme. The doctor said my rash just looks like a localized reaction to the tick bite and didn't think it was anything more than that. How many people have a localized rash around a tick bite for a month? She thought I had been treated with sufficient abx and didn't want to prescribe more. She said with my symptoms (muscle soreness, lower back pain, profound fatigue etc) that I should be tested for Rheumatoid arthritis, STD"s (despite being in a monogamous relationship for twelve years, she said you never know mad ), Rocky Mountain fever, and a complete metabolic panel. I kept saying over and over and over again that all of this occured a week after the tick bite and that I had a tick that was on me for 48hrs. She said she thinks it was a coincidence and was I really sure it was a tick? I was FUMING and demanded another week of abx until I can see the internist that she referred me too..I am so upset at the lack of understanding. She said it must not be Lyme because the ELISA was neg. I told her that it would be neg no matter what because it was done at 2 weeks out and it needs at LEAST four weeks to show anything. Her response, Oh....................................

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/6/2009 4:05 PM (GMT -6)   
Oh wow! It's sad but alot of us go through that. You should live in the South. It's said that we don't have Lyme here. You will be so much better off finding an LLMD.

Btw, did she give you the extra week?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Candlegirl
Regular Member


Date Joined Jan 2009
Total Posts : 32
   Posted 8/6/2009 4:23 PM (GMT -6)   

 She did give me an extra week at my persistence. I am seriously shocked that she is insinuating an STD or other things. It completely coincides with the tick bite. She said that the extra week of abx along with the two I had is more than enough. I  know that bad things can happen if this is not taken seriously and I am not playing around with this. I still have the rash but it has gone down a bit..It is a perfect circle with white in the middle. Is that a bulls eye or am I crazy?

 For those that have seen a LLMD, what are your general costs for the initial visit/labwork etc.? I know they will all not be the same price but I just want a ballpark figure, please=)


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/7/2009 12:21 AM (GMT -6)   
Candlegirl
plz make sure you take pics of your rash, place something like a ruler next to it for sizing. and if you do this and show it to a LLMD when you deside to see one you have the proof. and JMHO your DR much be related to some of mine, and i think they are full of it...

i wish you well soon and hope you have better luck with your next DR.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/7/2009 12:07 PM (GMT -6)   
Candlegirl,

It's sounds like a bullseye rash but without seeing it, we can't be sure. RD is right, take pictures of it and put something by it like a quarter to give it size definition.

The cost for an LLMD depends. The one I am currently seeing started off taking insurance and I only have to come out of pocket with my co-pay. Now, he is not taking insurance and a follow up visit is $250.00!!! The lab work is still covered by insurance though. The Western Blot has to be paid out of pocket if you send it to igenex, and then you file it with your insurance. I paid $200.00 to have it done.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 8/7/2009 12:45 PM (GMT -6)   
Hi Candlegirl,

Wow, that appointment sounded frustrating. Unfortunately, unless you see a lyme-literate docotor, that's about the best you can expect. But you're already off to a better start than most- good for you for pushing for further treatment!

My LLMD charged $550 for the initial consult, but the follow-ups are much cheaper...somewhere between $100 and $200, but I've lost the exact numbers.

Candlegirl
Regular Member


Date Joined Jan 2009
Total Posts : 32
   Posted 8/7/2009 3:17 PM (GMT -6)   
 Thank you for the ball park figures. I see the internist next Thursday and that is the day I run out of antibiotics. I am going to take the printouts from Ilads and push for three more weeks of antibiotics at a higher dose. I went to the doctor immediately when I noticed the rash and I am not going to sit by and let them pass me off.. No way..
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