I have recently been diagnosed with LD. My current doctor is nefinitely NOT an LLMD. She had to look up Lyme Disease on the internet to determine weather or not my rash was that of Lyme Disease. She gave me three weeks of Doxy, and ordered a blood test. I have been off the Doxy for two weeks, and have just started to have my first symptoms of Lyme. (Arthritic problems) I am going in for another blood test today, but I am worried about the results because I know that Lyme won't always show up in the blood. My Dr. is such a crappy one that I bellieve that she knows nothing about Lyme. She even went so far to say that there are not ticks in Texas! What a goof.

So, for now, I have ordered the test kit from Igenex. I have no idea which tests to reqest, though. Can someone help me with this? Also, I am scared that my Doc won't be able to read the results. I can't get into a doc in Dallas (where I am currently living) because I am moving out of state in three weeks, and it just so happens that there are no LLMD's in Minnesota (where I am moving.

I feel so alone....please help me. I feel like I have tried everything. What should I do?

Thanks for your suggestions and help. Krista
 

First thing you need to know is, as you already stated, Lyme does not always show up in blood tests even when you have it.

That applies to Igenex too. They are very good, and if any test would show it theirs would. But you should not rely on test results to tell whether or not you have Lyme.

See U.S. CDC: Lyme disease: diagnosis
and What the FDA says about Lyme testing

Next, you really need to see a LLMD. I know that can be difficult, but it is essential to have a doctor guiding your treatment who is knowledgeable and willing to treat you as necessary.

If your doctor is willing to read (and follow) Dr Burrascano's Diagnosis/Treatment Guidelines, 2002 (ILADS site) , that would be good but isn't likely. You could try showing that to her, but if I were you I'd be setting up an appointment with a LLMD a.s.a.p.

As mentioned in the post above, some people get relief or even believe they get cured from alternative methods. And many feel that a combo of alternative plus antibiotics is best. Different things work for different people, but my advice is to be wary of any claims of cure-all, from any source whether "mainstream" or "alternative" - because there is no one thing that works for everybody.

Dan
 

Find another doctor, one who knows what they are doing. get the medications! make sure your doc follows the ILADS Lyme treatment guidelines, and that your doses are high enough. You must be checked for co-infections, babesia, ehrlichia, bartonella etc. You have to do this NOW!!!

You should have found a new doctor the day you found out that your current one did not know what they were doing.

Email me if you need a doctor referral.
In the meantime, you have alot of reading to do, and planning to make.

Here are the basics.
http://www.ilads.org/burrascano_1102.htm http://www.ilads.org/index.htm http://www.lymepa.org/Basics2003_Word_Version.htm http://www.lymeinfo.net/ http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html
http://www.jersey.net/~joebur/conspire.htm

My Site: http://www.wildcondor.com/lymelinks
www.wildcondor.com

[This message has been edited by WildCondor (edited 21 May 2004).]
 

How about if you get into see a LLMD here as soon as you can and establish a relationship before you go to Minnesota and then get a Doc up there to work with the LLMD down here? Worth a shot. Even if you have to delay your move. Like others have mention it could be the difference in you cutting this mess off at the pass or being disabled for the next several years.

Oh, I was bit by a tick in Texas and I've tested positive.

I've heard Dr. M has a bit of a wait sometimes, others here who know better may tell us different, but I could send you the info on my Doc if you need it. If so let me know and I'll email it to you.

Good luck.

[This message has been edited by Lenny777 (edited 21 May 2004).]

[This message has been edited by Lenny777 (edited 21 May 2004).]
 

I want to add that you need to be tested for co-infections as well as for lyme. These ticks carry several diseases that we must be mindful of. For example, if you have babesia and don't treat it, the lyme will not be treated sucessfully until you get rid of the babesia..As you can see this is not your average bug.

Secondly, I would suggest calling the lyme docs in Dallas, explaining that you are leaving shortly and need to get on meds as soon as possible. Perhaps the scheduling person will be able to work you in knowing that it will most likely be a one time visit with follow up from the new doctor up north.

It's easier to get a new doctor on board with your treatement if the previous doctor is definitive about your diagnosis and treatment protocol. I'm sure that you are really busy getting ready for the move, but this needs to be a priority. You're here, so you most likely already know this.

I second printing out the documents available on the ILADS site and handing it to any new doctor that you see, unless you already know that the new doc is a lyme doc.

ILADS is a site for medical professionals and might carry a bit more weight with the new doctor.

I am so sorry that you have had to find us here, but certainly welcome you!

Carol Ann
 

I just want to give you some empathy, also alot of sharp people on this site which you have to filter out all the tons of info & pro-con issues including the debates.

For yrs. have begged for treatment changing doc, lost count & ins. Still no good LLMD have I been able to get to since 20 yr. spending all my money chaces rainbows.

I think my final resort is going natural route with Samento,Cats Claw just mor refined.

If I go out of state & have trouble need a doc close to back me up. Being as sick as I am, know I need some help on this end also.

My suppossed LLMD belives only in the 4 wk. round of doxy. Even though have, I am sure other co-infect. Also it has been atleast 20 yr. Alot of healing to be done. Besides for all the other things found wrong now internally.

To let me know I feel for your,frustration,questions,weeding through so many diff. opinions & med treatment.

Let me know. Hang in there. Sending my thoughts & blessings. Huggggsss
 

I live in northern Iowa..have family in the Twin Cities and will be there at 8 PM tonight!

Here's what I would do....
Are you driving when you move?

I hope .....

call this Doctor...meet him on your way up north.
www.drcharlescrsit.com

There is a Female MD that just recovered from near death that has opened a clinic in Winona, MN....2 hours from the cities.

He would coordinate with her.

Unfortunately there aren't too many GREAT Lyme Doctors up north.

jj is from up there and has knowledge of a couple of....

Go into profiles and look her up.

You can email at [email protected]

we can swap phone numbers...

Now...I have a personal brochure available...you want it I'll mail it.

Trout