LymeNet Flash: Found LLMD in CT

This is topic Found LLMD in CT - need advice in forum Medical Questions at LymeNet Flash.

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Posted by christelleny (Member # 6719) on :

My doctor thinks 4 weeks on Doxy will be enough to kill the little bugger that infected me years ago. He also thinks that follow-up western blots is not necessary. Makes me very wary. I have 2 weeks to find somebody else and I'm getting desperate here.

I didn't think it would be so hard to find a LLMD. I've been at it non-stop for 7 days and finally found 2 that accept new patients not so far from where I live. One doesn't accept insurance and is outrageously expensive (BTW, does $750 for a visit seem expensive to you?).

The other, Dr.S from Westport, CT has a family care practice. No insurance either, but I can handle $450. He's a LLMD (according to his assistant) and is a member of the ILADS.

Does anybody know him, who could give me some feedback?

Thank you

Posted by nan (Member # 63) on :

In my opinion, you need to deep-six the guy you saw. If you were infected years ago, 4 weeks of doxy is not enough. Keep in mind I am not a doctor, but I am quite sure others here would agree.

Also, it is possible that your insurance could cover part or all of your visit.
($750 is outrageous!) You can call your insurance company and ask. They may send you a form to take with you. You pay up front and then they reimburse you. Dr. Jones
in CT charged $900 for the first visit for my grandson. This included all testing and a 2 1/2 hour visit. They submitted it to BCBS insurance and they paid all but $50.

Hope you will keep looking. I can't help you with names, but perhaps someone will email you some LLMD's near you. You can also call the Lyme Disease Association and request names. They help people with up to three recommendations. www.lymediseaseassociation.org

Good Luck! nan

Posted by christelleny (Member # 6719) on :

Thank you a bunch. Still looking. I'm trying to get my 20-month old to see Dr. Jones, as I was infected prior to getting pregnant (might explain the many miscarriages). I wish I had been diagnosed a long time ago.

Thank you for your help.

Posted by beachcomber (Member # 5320) on :

Chris:

There are 2 "LLMD"s in Fairfield County. The one you mention that wants $750 is one that I tried to see. I thought the $750 was outrageous too. And, he does not take insurance. I found the whole thing to be arrogant, personally. However, I know several people who swear by him.

Another local LLMD was just cited for taking "kickbacks" from the drug companies - that is what one of his patients told me.

I am not sure which Dr. S you speak of.

Do you have an email address so that I can write you directly about what I know of the MDs in your area?

Posted by nan (Member # 63) on :

Here's an article written by Dr. Jones which I thought might interest you.

You will notice I left his phone number there...because he is the only LLMD who has given permission for us to do that.

The Children of Lyme Disease

Charles Ray Jones, MD
Pediatrician, Private Practice, New Haven, CT (203) 772-1123

Current research indicates that the Lyme disease bacteria,

Borrelia burgdorferi, can be transmitted within

hours after an infected tick attachment. Failure of parents

and teachers to recognize Lyme disease early in its

course can result in a child developing a chronic

difficult to treat infection in the brain, eyes, joints,

heart and elsewhere in the body.

In my experience treating

6,000+ children birth to 18 with Lyme disease,

50% have no tick attachment history, 10% or less

have an erythema migrans (bullseye rash) history,

but all have a history of living in or having visited

a Lyme endemic area and have a decline

in the way they play and perform in school.

They are tired, wilt easily, have dark circles under their

eyes and are sick. Lyme disease has a profound negative

impact on a child?s life, cognitive function and ability to

perform maximally in school. Severe fatigue unrelieved by rest

results in decreased stamina and a decreased ability to play and

to do school work. Insomnia, headaches, nausea, abdominal pain,

impaired concentration, poor short-term memory, an inability to

sustain attention, confusion, uncharacteristic behavior outbursts

and mood swings, fevers/chills, joint pain, dizziness, noise and

light sensitivity, and difficulty thinking, expressing thoughts,

reading, writing, and making decisions as well as a feeling of

being overwhelmed by schoolwork plague a child with Lyme

disease. Pain and impaired cognitive function make it

difficult to sustain attention and to learn and

recall new material.

Although Lyme is usually transmitted by Ixodes scapularis

(deer) and Amblyomma americanum (lone star) ticks,

it can also be transmitted in utero and through breast milk.

These children, frequently floppy with poor muscle tone,

are irritable and ill early in their lives with frequent fevers,

increased incidence of ear and throat infections, pneumonia,

joint and body pain. They have gastroesophageal reflux,

small windpipes (tracheomalacia), cataracts and

other eye problems, developmental delay,

learning disabilities, and psychiatric problems.

All respond to months or years

of continuous antibiotic therapy.

When Lyme disease is a possible diagnosis,

the children should be evaluated by a Lyme knowledgeable physician

who will continue antibiotic therapy until all Lyme symptoms resolve.

In most circumstances, Ixodes scapularis tick attachment

should be treated with one month of antibiotic therapy.

Posted by Rita on :

There is a new LLMD in Norwalk who trained with Dr B. He's a neurologist who accepts insurance and treats pain. Dr B recommended him to me.

I'll email you.

Posted by peachsc (Member # 4969) on :

beachcomber,

can you email me the name of the LLMD in CT who was cited for taking kickbacks from drug companies??

thanks,
[email protected]

Posted by ticktox (Member # 6739) on :

Dr S in Westport is supposed to be pretty good. He's relatively new to Lyme but has spent time working and learning from Dr J.
You might also consider Dr P in Wilton. He is president of ILADS and an excellent LLMD. I am curious and dubious about the comment about an LLMD in CT who was getting kickbacks from drug companies. There are only a few LLMDs in CT and all have great reputations in the Lyme community. They put their necks on the line every day for those suffering from Lyme. The insurance companies and many non LLMD docs would love to tarnish their reputations. So don't believe everything you hear. Good luck and make sure you find a LLMD. With this disease, mistreatment is costly.

Posted by ArtistDi (Member # 2297) on :

Rita,

Could you email the name of the neuro that
also trained with Dr. B? I am still having
many neuro problems.

thank you kindly. New [email protected]

ArtistDi

[This message has been edited by ArtistDi (edited 07 January 2005).]

Posted by christelleny (Member # 6719) on :

Thank you ALL so much for the posts and many emails. I feel more comfortable about my appointment with Dr. S now. That's a big weight that you have helped remove from my mind.
And, as prices go, he's much more reasonable (if not yet affordable) than others out there.

Thanks