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


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https://flash.lymenet.org/ubb/ultimatebb.php/topic/2/28522

Posted by TriciaOH (Member # 51742) on :
 
Need LLMD in Columbus OH area - or anywhere in OH.

My son is 16. When he was 9 we were in PA and NJ for vacation. We noticed 2 bullseye marks on his leg and took him to Urgent Care.

He was treated for 10 days with Amoxcillin.

Now 7 years later, we have noticed for the past 4 yrs he is extremely tired no matter how much sleep he gets, exhausted after showers, rowing machine "makes me more tired", has fallen asleep in class 3 times in the last year, tremors in leg, tingling foot "my foot feels like it's falling asleep", gut pain.

Sensory issues. Sensitivity to lights. Anxiety, some depression.

Hopefully someone can help me find him the right doctor for him [Smile]
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Welcome to Lyment TriciaOH

Very sorry to hear about your son. We can help you.
You need to learn all you can about Lyme Disease and the co-infections that come with it. You also need a LLMD. Start by reading this link which explains why LLMD's don't participate in insurances;

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13239

You can request a LLMD through ILADS here;

https://www.ilads.org/patient-care/provider-search/

Also watch 'Under Our Skin', a documentary about the struggles Lyme patients face while trying to get diagnosised and treated from this debilitating disease;

http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

There are a few LLMD's within a 2 hour drive that also treat children. I will send you a private message. Healing wishes.
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet! PM Sent for OH.

Your son was under-treated and the bull's-eye rash is definitive for Lyme!

Your son needs 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. Your son needs to go where they are.

Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "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

Maybe they can help. They would know better about OH.

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

http://whatislyme.com/lyme-in-ohio/

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

Here are some links about Lyme and children with very good information:

http://www.childrenslymenetwork.org/

https://sites.google.com/site/drjoneskids/symptoms-literature

https://sites.google.com/site/drjoneskids/home

Links about teenagers and Lyme Disease:
https://www.lymedisease.org/45/

http://www.livingwithlymedisease.org/teenagers-with-lyme-disease.html

http://www.lymefight.info/lyme-disease-general-information/children-teens-and-lyme-disease/

Here is a link for a book titled, "When Your Child Has Lyme Disease: A Parent's Survival Guide" which also might be helpful:

http://www.lymeliteratepress.com/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.

Also 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 http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8
 
Posted by JanelleK (Member # 51748) on :
 
Hi, Tricia. I've sent you a private message with a contact's suggestion. I don't recall what her specific credentialing was for lyme, but that she is credentialed. I hope it helps, as she is great, treats various areas, and has a lot of professional and personal experience.

I am a patient of hers by referral of one of my friends (who was referred by one of her friends, who was referred by one of her friends.) There is a reason she has so many referrals as her new patients. E.X.C.E.P.T.I.O.N.A.L.

[ 11-20-2018, 12:21 PM: Message edited by: JanelleK ]
 
Posted by hopingandpraying (Member # 9256) on :
 
JanelieK - Welcome to Lymenet!

Is the health care practitioner you mentioned a "Lyme-literate doctor" (=LLMD)? How many years has she been treating Lyme and what percentage of her patients have gotten well?

This is very important to know when finding a good LLMD. It's good to know she has many referrals made to her and is "exceptional".

If she is a LLMD, then Lymenet rules state you cannot write her full and last names, only last name initial as well as state, not town where she is located. This is to protect the doctors who put everything on the line to treat Lyme patients.

To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
 
Posted by JanelleK (Member # 51748) on :
 
Thanks for clarifying. I've updated the post to respond to above. Good luck to all!
 
Posted by Ann-Ohio (Member # 44364) on :
 
Sending you a private message.
 
Posted by smileynot (Member # 18095) on :
 
I searched under the name Jen O'Brien NP and found this thread but don't see her name or anyone mention her. She definitely is in Ohio, but not seeing anyone even using her name with initials? Looking for how good she is for a sufferer in that state?!
 
Posted by JanelleK (Member # 51748) on :
 
Sorry I have not been active and thought I deleted my profile. I am going to try to do so now, but FYI....I sent this private message to tricia back then....

"......
After getting initial results, my primary doctor wanted me to get a 2nd opinion. Others locally were engaged (OSU etc) since the test results were not just the standard ones. They suggested to instead work with a more specialized with Lyme group, which was Cleveland Clinic's Infectious Diseases group.

They don't agree with the lyme diagnosis. It was suggested I stop the antibiotics, etc. I understand the difference of views on all of this is part of the reason this forum exists. However, I just thought I would mention it in case you also want to work with someone like Cleveland Clinic for testing."
 


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