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» LymeNet Flash » Questions and Discussion » Medical Questions » Desperate Mom needing advice

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Author Topic: Desperate Mom needing advice
Sunshine1984
Junior Member
Member # 52144

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My son had Lyme Meningitis when he was 3. He had extremely high fevers, rash, fatigue, body weakness, etc. He was on a medication through a Picc line for 2 weeks and that was it. He is now 15 with Autism Spectrum Disorder and ADHD. He has and continues to suffer from migraines and over the years has developed pain in his legs. He has been to several neurologists when he was younger and nothing came of those appointments.

With this leg development issue my husband brought back up the Lyme of possibly being the culprit. No doctor thinks this is a possibility but they say no without testing. Should I take their word for it or pursue it? Not to mention, I have no clue who to go to, to pursue it. Thanks for reading this and any and all advice you can give.

Posts: 1 | From Philadelphia | Registered: Jul 2020  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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You will need to seek out an LLMD in PA or nearby state. We have lists of doctors if you request over in "Seeking a Doctor."

Mainstream doctors DO NOT GET IT. .. They never will and won't know how to treat even if they know how to test. (and most will NOT use the best testing)

I would suggest using Igenex Lab for testing. The Western Blot is very reliable.

I'll move this to Medical Questions so you will get the most exposure and help for your question.

THERE IS HOPE FOR YOUR SON!!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94389 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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My advice to you would be to get an evaluation from a Lyme Litterate Medical Doctor (LLMD).

Please read "The Lyme Wars" which describes how regular doctors follow the Infectious Disease Society (IDSA) guidelines instead of following the International Lyme Disease and Associated Disease (ILADS) guidelines;

https://www.clinicaladvisor.com/home/features/controversy-continues-to-fuel-the-lyme-war/

Also watch "Under Our Skin" which describes the hardships faced by Lyme patients in trying to get diagnosised and treated for Tick Borne Infections;

https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1

Lymenet is an invaluable asset for those searching for answers. It is a community that constantly gives back to others who find themselves stuck in the medical Lyme maze. We have all experienced it first-hand.

You should reach out to your area's Lyme support group.
This is one that is close to you;

http://www.lymepa.org/

If you decide you would be interested in getting a referal for a LLMD, please post your request in "Seeking a LLMD" forum and we will provide you with your area's LLMD's.

Healing wishes

Posts: 2060 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Carol in PA
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Sunshine1984,
Welcome to LymeNet.

You said, "He has and continues to suffer from migraines and over the years has developed pain in his legs."

I had migraines and leg pain also.
Do the migraines have a pattern? Has he been prescribed any medication and has it helped at all.

Does he do anything that brings on the leg pain, and how does he describe it?
Has he been diagnosed with anything?
Does your son have any other symptoms that you know of?

Does he take any vitamins or supplements?

Posts: 6918 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Garz
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I can only echo the above and wish you every success going forward.


I don't know if it's at all helpful but I watched the now-famous documentary "under our skin" the other day and there was a case featured in the film that reminds me of your description.

it does a pretty good job of explaining the Lyme disease controversies and shows there is hope for people who get appropriate treatment.
https://www.youtube.com/watch?v=2JgR_Jfbhv8

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hopingandpraying
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Welcome to Lymenet! PM sent for PA & OH.

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!

It took six years to find out what was wrong with our son, and he has been ill for twenty years now! You must be your son's health care advocate!

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 PA Lyme Support Groups - maybe they can help you. They would know better about PA.

www.lymepa.org

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

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

Here is a link for you - contact them for more info:

http://www.childrenslymenetwork.org/

Links with a great deal of good information about Lyme and children:

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

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

http://whatislyme.com/children-and-lyme-disease-collection-of-links-and-articles/

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/

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

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

View "Under Our Skin"
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

and "Under Our Skin2: Emergence"
https://drive.google.com/open?id=1iAzRksyHfSNWBGsHcugYl9a8WQ9TnDCW

Btw - I know you are new to Lymenet, but 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 this click the "Edit Post" icon, make your changes, then click "Edit Post". Thanks.

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