LymeNet Flash: Scared...need pep talk

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Posted by lkpod (Member # 6187) on :

I'm going to see my GP tomorrow. I'm going in specifically to talk to him about Lyme. I don't quite know what to say other than "I think I have Lyme and I want to see a specialist."

Any suggestions other than taking him info (Dr. Burrascano's paper and When to Susspect Lyme) as well as a list of symptoms I'm having/have had that would indicate LD?

I'm nervous and don't want him to blow me off. I don't think he will as he actually tested me for Lyme of his own choosing a few years ago and really does believe I have something going on that is not "just in my head".

Anyway, I'd love a little pep talking. Thanks

Posted by amyb (Member # 5520) on :

why do you have to go to him before going to an LLMD???? listen it is your life....you need to go in there with a positive attitude ( i can not spell ever)and not take NO for an answer....i have had doctors blow me off and that was the last time they ever saw me...go get em

i think taking all the info is a good thing

amyb

Posted by treepatrol (Member # 4117) on :

I hope it works out for you. All you can do is give him/her the right info and hope he/she uses there head. Good luck.

Posted by TheCrimeOfLyme (Member # 4019) on :

I think the worst thing you can do is ask your GP for a Lyme Specialist! They are probably going to send you to an immunologist or a rhematologist who is then going to laugh and tell you that you dont have lyme.

None of the LLMD ( lymeliterate medical doctors ) that we see are hardly on any list of specialists in GP offices. Because, they keep a low key and devote their lives to this disease, because they actually know what they are doing. It SHOULD be opposite, it really should , we should all be able to go to our GP's

and say LOOK .. I think I have lyme, send me to a LLMD, but its not, hence all types of proposed legislation, etc.

The only way to find a proper doctor to care and treat your Lyme is to get one that IS a LLMD. Did you post in seeking a doctor yet?

Posted by lkpod (Member # 6187) on :

I have the name of one LLMD that I have heard talked about here and will call him after I see my GP today. I got one other name that is closer to me but that doc is in ID and I hear that all of his patients love him and he has experience to some degree but I'm going to hold out for the known Dr. H, the one connected to Igenex.

No matter what the GP says, I am going to the LLMD but my mom (who is paying for all my medical) wants me to at least talk to the GP first and see what he says.

My mom finally read some of the stuff about Lyme and agrees that a lot of it sounds like me. So at least that is good. Thanks for the encouragement.

I have been having terrible insomnia lately and it's driving me nuts. Just needed to share.

Posted by amyb (Member # 5520) on :

i agree with COL not one of the GP's i went to said oh you need a LLMD....i think you should NOT wait...make an appt with one TODAY..you never know when they will be full and not accept any new patients...my sisters GP actually admitted he was in over his head and told her to seek a specialist instead of wasting her time....amyb

[This message has been edited by amyb (edited 14 September 2004).]

Posted by kam (Member # 3410) on :

If your GP or the specialist they send you too helps you with lyme disease or even is willing to work with your LLMD, it will be the exception and not the rule.

I saw over 35 doctors in California including doctors from UCSF Medical Center, UC Fresno Medical Center and Samsun clinic in Santa Barbara while trying to find out why I was able to work one week and not the next.

While in Southern CA, I needed a new PICC line installed. I went to 3 hospitals before finding one who could do a PICC line.

At least at Pomona Valley Hospital, they were interested in learning more about lyme disease and keep coming in while I was receiving an infusion while waiting for the PICC line installation.

I was in the emergency center two nights receving the infusion and both nights I had several docs coming in and out asking questions about my treatment for lyme.

They kept saying that all the knowledge they had for lyme was to give a few weeks of doxy.

I will be sending them information on lyme disease. I wished I had the info with me at the time.

Samsun Clinic in Santa Barbara did have an infectious disease doc that was open to lyme disease and called SAm Donta for consultation on the subject.

I also saw an IVY League Doc in San Luis Obispo County who said he was lyme literate.

But when I showed him the test results from Igenex Lab, he did not know how to read them.

He was more concerned that my LLMD was prescribing more abx for me than the norm of 22 to 6 weeks. He had no other suggestions on what to do to help me re gain my health.

Unfortunately, I am not the exception and the rule when it comes to lyme disease.

Unbelievable..isn't it!

If I can be of any help let me know.

NOTE: I saw so many doctors because they were trying to rule out MS, Valley Fever, Myasthenia Gravis and a many other conditions. I am thankful that as far as my test results went...I was a walking picture of health. The only problem was and is...I have difficulty being on my feet for long.

Posted by DJP (Member # 5893) on :

My daughter has Lyme and our pediatrician is consulting with a LLMD in CT (Dr. J). So far this has worked for us and I have an appt with Dr. J in October for her.

I continue to work through my pediatrician because they are getting educated through this process. I would really like for them to know more about this disease, so when the next child comes along they aren't working with outdated information/opinions on Lyme.

My daughter just had her blood drawn for the Lyme and co-infections tests and I'm making sure her ped gets a copy of the reports.

It will be interesting to see what they think of the reports vs what Dr. J has to say about them.

Anyhow, my point is that if your GP is willing to consult with a LLMD then it may help someone in the future. That being said, by all means your health is what counts right now and you need to do what is best for you.

Posted by lkpod (Member # 6187) on :

I put up a new post over in medical that is an update since I saw my general doc. He was very open to the "Lyme hypothesis" and immediately knew to send the tests to Igenex. Anyway, you can read about it there. (It's called Good news)