15 year old daughter misdiagnosed since September.

Feel your pain...my daughter now 21 has been misdiagnosed with many aliments since she was 14 yrs old. It is a daily struggle for her. As a teenager she struggled to get up in morning and missed a lot of school. Teachers would not understand...again the lazy thing. She would be barfing and having diarrhea and crying knowing she would miss the school bus once again. She has recently finally found a female Dr that actually listens to her.

What other symptoms does your daughter have???? As I remember my daughter started out with the back pain.

My daughter diagnosed with fibromiligia, arthritis, crohns

Post Edited (jobell) : 2/26/2012 3:19:30 AM (GMT-7)

I agree, it's really important to find a LLMD if you have any suspicion of Lyme. I was a very skeptical person at first. I hesitated to go to any doctors including a LLMD.

I had joint pain and severe fatigue for years, and then got very sick with a high fever and numerous other symptoms which kept getting worse. When I finally did go in, I saw a NP, a regular MD, a rheumatologist and attempted to see an IDMD. I did not have a good experience with any of them. It seemed like their job was to dismiss my concern of Lyme.

None of them would run a Western Blot for me even though I had multiple known tick bites and typical Lyme symptoms. They ran plenty of tests for every other condition which luckily all turned out fairly normal. Then I was told I had a psychological issue, my symptoms were caused by stress, or I had an eating disorder.

Seeing a LLMD and a ND was very helpful for me. If I had to do things over, I would have went straight to one rather than wait for the rheumatologist or try to convince the family doctor to at least test me for Lyme.

Unfortunately, like many rheumatologists, most infectious disease doctors will not adequately treat Lyme. Most will go by the standards of the IDSA which are very limited and not individualized based on patient response. If a lyme patient doesn't respond to a short course of treatment as outlined by the IDSA guidelines, they are said to have untreatable post-lyme syndrome rather than an active infection. This results either in no treatment for the patient or symptomatic treatment. Symptomatic treatment with doctors that follow IDSA guidelines often includes the use of steroid medications which are highly contraindicted in lyme disease.

If you have had standard blood work done on your daughter and major things have been ruled out or are unlikely, I would not hesitate to see a LLMD. Especially after a known tick bite.

There are also many books that may be helpful as you begin to deal with Lyme disease. Here are some of my favorites. Often they can be ordered into your local library to save on cost.

Cure Unknown
The Lyme Disease Solution
Coping with Lyme Disease
Insights into Lyme Disease Treatment
Healing Lyme

Thank-you for all of your posts and great information. I am going to try to get her into the University of Chicago. The problem is the local doctors want her referred to an ID here and I am having a hard time getting them to cooperate with me. I had a list of symptoms from an ILADS MD and I highlighted all of the symptoms except Psychosis, Tremor and Seizure. I took it to the RHEUM with us and he acted offended that I was trying to diagnose her and I said that I was just showing all of the symptoms she had! I had a lot of unanswered questions resolved in reading last night especially the bottom of the feet hurting. I wanted to start her on detox but the problem is we have well water and I didn't know if that would make a difference?

Well water doesn't make a difference for me, that's all I have access to, but am used to the minerals and such as I drink it all of the time anyway.

Most doc's really resent when their patients know more than they do - LOL! - and once a person starts to learn about these infections, it doesn't take long to know more than most doc's know about Lyme and co-infections! A true LLMD would have taken that list and said something like "Ahhh, I see you've already filled out a list!"

As Treehousemom said - the key to getting past these infections is seeing the right kind of Doc, and your daughter needs to see a Lyme Literate Doc that will follow the ILADS' (International Lyme and Associated Diseases Association) recommendations, not the IDSA's (Infectious Diseases Society of America) recommendations. Here is a link that will take you to a basic run down of the differences and has some pretty good info besides - www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

Please be sure to read through our "New to Lyme?...Start here!" thread as Achievinggrace suggested as well as the other site that she recommended -Dr Jones' site - as Dr. Jones has a lot of experience in treating children for Lyme and co-infections.

Please let us know what you find out!!

Kristinsmom,
I went into your post and removed that doc's name, as we don't allow even even the not so nice doc's names to be posted here.

I'm so sorry that you had something like that said to you! Although I would encourage you to stay away from the ID docs - in general (as there are always exceptions to the rule) ID docs don't recognize chronic Lyme and will only give a short course of abx and declare you are healed. Most patients come away still having symptoms - which is a sign there is an on-going infections based on scientific evidence - and the only thing that the ID doc will say is that that person now has Post Lyme Syndrome - rather than admitting that they need more treatment! \\ You can read more about this controversy here:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

and here:
lymedisease.org/index.php?s=IDSA&x=0&y=0

Have you tried these places yet?
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Another thing you could try is to start a new thread with a title something like "Looking for LLMD in the Chicago, Il. area" - although you will need to enable your email option in your profile, so that members can share their information with you.