posted
A couple days ago, my teen came home from school completely overwhelmed by his Tourettes and anxiety. I went on the web to find something new we could try that might help. I stumbled upon an article: "Lyme Disease Presents as Tourette Syndrome" Imagine my reaction!
Well, since then, I've been scouring the web for more info, and now I'm more confused and scared than ever!
I understand the reasons for LLMDs keeping silent, but it makes me nervous - it feels like I'm doing something "wrong" by wanting to look into this, trying to find someone to help. It makes me not trust these LLMDs right from the get-to, because the secrecy just seems so "shady". Isn't there a doctor ANYwhere who will be upfront about this?
Also, after reading what so many people post about what they're going through WHILE BEING TREATED... it just makes me even more scared and afraid to even consider looking into this any further.
Help... This is just all too cruel - there may be help for my son, but it seems all so wrong at the same time...
Posts: 2 | From PA | Registered: Jan 2012
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Don't be afraid!! We have some wonderful, caring doctors willing to stick their necks out to help us get well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Also check the symptoms for parasites by googling parasite symptoms and checking the info at www.humaworm.com Parasites/worms cause a lot of symptoms affecting the brain and CNS.
They can also be a co-infection of Lyme. Hope you find an answer for your son.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
The cruelty is not coming from the LLMD's. Like Lymetoo said, they are sticking their necks on the line trying to help us.
The cruelty and shadiness lies with the IDSA and CDC, etc.
Please watch "Under Our Skin". It will clear up a lot of your confusion. Yes you will still feel the anger, but it will be directed at the true cause of this mess...not the LLMD's.
It is disgusting that my son's pediatrician ignored his autism symptoms and constant illnesses. After 1 month of treatment with the LLMD using antibiotics and supplements, he is making eye contact and using conversational sentences!?!?!?
It is disgusting and shady that my Infectious Disease Dr dismissed my constant low-grade fevers and weakness for months.
For years, I was told my painful eye twitching was "anxiety" and my bone crushing fatigue was "depression". That's what I would call malpractice, when the source all along was chronic infection.
It is horrific that my regular Dr's told me: "you're fine, you're labs are fine", "you just need to learn to ignore your fevers" What on Earth??? While I had infection in my brain! (not only Lyme, but Brucella that had to be reported to the Health Dept)
My LLMD saved my life (and my son and husbands). Although treatment is rough, the alternative, not being treated, is unimaginable and horrific.
I have learned that you cannot put blind trust in the mainstream medical establishment. You have to be your own advocate.
posted
It is very scary to learn about Lyme disease, I wholeheartedly agree. Especially for a parent. But even scarier, to me, is the possibility of Lyme disease being the culprit but then going ignored.
I suspect I have had Lyme for 16 years, but only figured it out a little over a year ago. If there was any way for me to turn back time and figure it out sooner (and start treating sooner), you bet I would.
As a parent it can be so scary to suspect that something is wrong with our kids. And the initial reaction can be to bury our heads in the sand and pretend it isn't happening. But the best thing you can do for your son right now is to turn that fear into motivation to get to the bottom of what is going on with your son's health, and then do whatever you have to to get the proper treatment for him.
My two year old son has craniosynostosis, ASD and developmental delays, so while my words may seem harsh and direct, please understand that they come from a place of absolute understanding.
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I understand how you feel. When my son was first diagnosed, I felt like Alice in Wonderland, like I just fallen down a rabbit hole into a topsy turvy world. And I had a career in health care, and was overwhelmed!
Please check out my thread THE STORY OF GREG to get a sense of things. My best advice is get yourself the most experienced LLMD you can find and get your son properly evaluated. When we first saw our LLMD, rather than just leap to a Lyme conclusion, the doc did a very careful, hour-long history, and a battery of specialized lab testing that was really thorough.
Just take it one step at a time, and keep uppermost in your mind that people can recover from this illness. I was sick for 5 years, really really sick, and I am 90% better after only 6 months of treatment.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
i definitely agree than you need to watch "under our skin"
until you understand the controversy behind lyme, it will be impossible for you to find the right care...
i honestly hope to God your son does not have lyme, but you definitely want to explore your options to be sure... lyme will only get worse without proper treatment.
Posts: 442 | From usa | Registered: Oct 2010
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