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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » Doctor needed in MA for 13 year old

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Author Topic: Doctor needed in MA for 13 year old
K.
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Member # 50025

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My son was diagnosed and treated for Lyme twice by infectious disease specialist at Baystate in MA. Several years later still has aches and pain, POTS, elevated HR, sinus tachy, severe but intermittent chronic fatigue, fatiguability with exertion, slow processing, unspecified connective tissue disorder similar to EDS, history of slightly elevated ANA. Thank you.
Posts: 1 | From MA | Registered: Mar 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Member # 9256

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Welcome to Lymenet! PM sent for MA & CT.

Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Patients end up getting sicker.

Here is a link for you to read about "Two Standards of Care":

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-standards-of-care-revisited.html

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. He needs 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/MassachusettsLyme/info

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

Some more resources for you (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/

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

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/

"When Your Child Has Lyme Disease" book

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

Posts: 8984 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Nancy2
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Member # 95

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PM Sent!
Posts: 1487 | From New England | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
   

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