New to Lyme disease forum...could use some guidance

We think that my daughter is suffering from Lyme although we still don't have test results. She has been on doxycycllen for 2 of the 3 weeks prescribed. She was feeling pretty good the past few days but today she has been fatigued, with joint pain. I have had her on vitamin D for the past week but from what I see in this forum most people suggest D3. Is vitamin C also recommended. I am also thinking that she should be continuing the antibiotics for a total of at least 6 weeks. I feel as though I am running in circles trying to figure out the best course of action for her so any advice you can give me would be really appreciated. I am very glad to have found this site. From what I have read so far the members seem very reassuring compared to some of the stuff I have read on the internet.

Hi Acheivinggrace

Thanks for your kind words. We think she got bitten in late July 2010 and started treatment on Dec. 6. We are currently working with our family doctor who has been very helpful and willing to listen but is not lyme literate. I am hoping to get a referral to an infectious disease specialist.

You mention co-infections. She has only been tested for mono, iron deficiency and thyroid prior to us investigating lyme. What co-infections should we be looking for?

Thanks again for your help

Hi Leslyn!!
Welcome to our forum!!! I too am terribly sorry that your daughter is ill, but you did
find a good site to ask questions & learn a bunch! I am sure that you will find us to be kind, caring & very understanding.

Achieving Grace & Bucci had a lot of good info.

I'll start with explaining that LD has affected my vision & using small paragraphs is the only way I can get through a lot of posts.

I will repeat what they are saying about getting in to see a Lyme Literate MD. Infectious Disease Docs are not really the best choice (believe it or not) for getting the kind of treatment your daughter most likely needs.

As far as co-infections - so that you can read up on them a bit - the most common ones are; Bartonella (or Bartonella-like infections), Babesia, Ehrlicia, Rocky Mountain Spotted Fever, and STARI (Southern Tick Associated Rash Illness). STARI is also known as Masters' Disease.

There are about 300 Lyme Disease strains, and only a small handful of them have been identified. We are able to only test for about 3 of them (I think it's 3).

This doesn't count any other tick-borne infections like babesia - which has over 100 different strains. Also like Lyme, only just a few can be tested for. This is one of many reasons blood tests are not an accurate way of getting a diagnosis.

The CDC website says the same, although they got their information about treatments wrong. It can be found here;
www.cdc.gov/ncidod/dvbid/lyme/

If you could get your gp to order another 'script, so that your daughter stays on the abx while you locate a LLMD, it will save her from quite a bit of set-back if she has to go with out any abx.

Just so that you know, there are those of us that have chosen to use other forms of treatment rather than abx - I'm one who has chosen a different route.

Please do read the sticky on the top of the forum, as it is packed full of info that the members here have put together.

Please be sure to read up on detoxing, as your daughter will suffer a lot less if you can get her started on dry skin brushing & epsom salt soaks. As the bacteria dies from the abx, the poisonous toxins will build up if her body can't get rid of them quickly - hence the need for detoxing.

I hope that all of this is helpful!! Please do keep asking questions of us & telling us more about you & your daughters' situation. We will learn from you as well!!

Hi Leslyn,
If you feel okay about it, why don't you post your general location - like a large city that is nearby. It's quite possible that someone here sees a LLMD nearby you.

If this is what you choose to do, just start a new thread & be sure to include what state you live in in the title & then in the body of the post, you could tell us what large city you are near.

We don't post drs' names on here in order to help protect them, so you will need to activate an email address so that someone can send you a message.

I hope this helps. Please don't hesitate in asking any more questions - that's why we are here!