LymeNet Flash: Seeking LLMD in NY

This is topic Seeking LLMD in NY in forum Seeking a Doctor at LymeNet Flash.

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https://flash.lymenet.org/ubb/ultimatebb.php/topic/2/25681

Posted by bonnie11 (Member # 45797) on :

Hello my name is Bonnie.

I was Dxed with Lyme yesterday. I must have gotten it when I as a child, because I dont remember being bitten by a tick since then.

I do remember feeling sick and chronically fatigued for a long long time. I also have Aspergers, MCS, food and environmental allergies,MTHFR 1298, adrenal fatigue and hypothyroid.

My functional doctor, DR. E, wants me on doxycycline, methyl B12 shots, D3, Orthobiotic, L-lysine, Igg 2000, Hist-DAO, and Neuroprotek.

I know nothing about Lyme and Im not sure if Dr. E would be the best doctor for this. Plus he is very expensive.

Im pretty depressed, but Im fighting it to come on here and try to do the best job I can to take care of myself.

Thanks

Posted by hopingandpraying (Member # 9256) on :

Welcome to Lymenet! PM sent for CT.

You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

Unfortunately, LLMDs are far and few between. You need to go where they are. I don't know what part of NY you are in and I only have names for upstate NY.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
www.lyme-aware.org/new-york.html
www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Read the new book written by Dr. H, the top Lyme-literate doctor, entitled, "Why Can't I Get Better?". It is an excellent source of information.

Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.

View "Under Our Skin" for free on www.hulu.com

I suggest you write a new post in "Medical Questions" with all the information you put in this post. Have the title be "Newbie - Need Advice". Other Lymenet members will come along and gladly help you.

Posted by Lymieloo (Member # 45753) on :

Hi Bonnie, I just joined here as well. Was dx last month.

My sister insists that my son has mild Aspergers, but I think it could possibly be gestational Lyme. His wife and my granddaughter have MTHFR, but my d.i.l.'s Nd only has her on two things...folate (NOT folic acid) and another thing I can't remember.

I don't know of any doctors in NY, but I'm sure someone here will be able to point you in the right direction.

Wow listen to me, I am NO help at all! [dizzy]

I may not have the facts you need, but I just wanted to let you know that you've come to a great place here, and that you WILL get through this.

I may have had Lyme for 32+ years, and only now found out -- and if I can get through this, you can too, 'cause I may well be the world's biggest whiner!😨

Hang in there and hang out here, and don't give up!

Posted by bonnie11 (Member # 45797) on :

Thanks for the PM hoping and praying! And thanks for the encouragement LymieLoo. Lol! My 6 year old has been Dxed with Aspergers and it was told to me through a blood test that he does have gestational Lyme. Yes, you need the B vitamins that are already methylated since MTHFR has methylation problems. Maybe magnesium was the other one?

Happy to meet you worlds biggest whiner, Im worlds second biggest whiner! lol!