This is topic Searching for an LLMD in OH in forum Seeking a Doctor at LymeNet Flash.


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Posted by foxinsox (Member # 46482) on :
 
Hi there,
I am searching for an LLMD in Ohio to treat my 16 year old daughter and myself. We've been flying to Louisiana for treatment. I cannot fly anymore due to the cardiac damage and subsequent breathing issues Bart and Lyme have caused (amongst many other things). We live in MI, I was given the name of Dr. B, but she doesn't treat pain as well and has only been practicing for several years. My daughter and I are both so sick that we are homebound, and I desperately need to find an LLMD with enough knowledge to treat congenital Lyme and my 30 year old infection. I haven't been able to find any others in MI, so I'm hoping I have better luck searching in OH. Thanks so much [Smile]
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet! PM sent for OH, MI & IN.

You both 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!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between. You need to go where they are.

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/OhioLyme/info

https://groups.yahoo.com/neo/groups/MichiganLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):

www.lyme-aware.org/ohio.html

www.lyme-aware.org/michigan.html
www.mlda.org [Contact Linda at (888) 784-5963]

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

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

The top LLMD, Dr. H, has written a new book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

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

Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do that, click on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
 
Posted by foxinsox (Member # 46482) on :
 
Hi there,

Yes, we have done all that. I have lived and breathed Lyme every day for 9 years already. I've paid out of pocket for every visit (with help from my family, thank goodness), and I don't expect to find an LLMD that accepts Medicare.

I was also a member on here years ago, this site helped me recognize that we had Lyme and co. after I was searching for an answer to our symptoms and joined to ask questions

For the life of me, I can't recall my 8 year old screen name, so I had to create a new one.

We've already been to Dr. J in DC and Dr. J in CT, plus a few more after the fairly well-known Dr. F in LA, who got my daughter into remission in 2008, stopped seeing children.

We began seeing him again in 2012 after he began treating pediatric patients again, though both my daughter and I have been on downward spirals since then. Lyme infected my heart years ago, I now have CHF and cardiomyopathy at age 43 and I can't breathe well enough to fly.

I already searched and left phone and email messages on the links for both MI and OH state awareness groups before I posted my inquiry on here.

I found a Dr. H in OH who doesn't answer his phone, there are 2 other LLMDs, a male and female, in OH that I have friends that have seen. Although I have massive respect for the LLMDs who stick their necks out for us, neither of them had great reviews on either doc.

I was hoping for a few numbers I could call of actual LLMDs that members have seen and had success with.

My daughter's symptoms, particularly her crushing daily headaches, have taken complete control over her life and personality. I'm pretty desperate to find a good LLMD in OH.

Thank you for the PM that I just noticed you sent...I should really read messages a few times over before responding [Smile]

[ 08-17-2015, 06:00 PM: Message edited by: foxinsox ]
 
Posted by Ann-Ohio (Member # 44364) on :
 
This is the best resource for Michigan:
www.lyme-aware.org/michigan.html
www.mlda.org [Contact Linda at (888) 784-5963

Sending you a private message.
 
Posted by Ann-Ohio (Member # 44364) on :
 
I am in Ohio. Please check your private messages.
 


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