2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Sorry to expound on another topic.
But, my son has been diagnosed with tics of his limbs.
Not sure what to make of that.
I can say he has flutters of his legs and arms throughout the day.
I feel them when he rests his legs on me, especially. Sometimes I see them.
At night, he has the myoclonic jerks throughout his sleep. It usually arrouses him, but he goes back to sleep. Not in the morning though. He wakes up early. Surprisingly, he is not tired. That's the new hyperactivity he has.
Does anyone know what food he can eat or something safe he could take to help with this?
I would be so sad if it's here to stay.
Thanks again
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I've been looking at old posts. Magnesium and fish oil are touted by Keebler.
We,re taking Dr. Mercolas krill supplements. Just started three days ago. Not sure if that is helpful. I assume not harmful. It's for children.
Maybe I should get Magnesium tested?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Magnesium testing won't work unless you get the RBC test. Go to requestatest.com
Almost everyone is deficient in magnesium, esp if they are on any type of prescription drug.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
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posted
Bartonella and protomyxzoa both cause major muscle spasms. In fact, Protomyxzoa is linked to MS. You do not want to supplement magnesium if he has PR because it will make it much worse. It is used to make biofilm.
I would try a low fat vegan diet to see if he improves. It would take several months if you are not also giving him meds to help reduce it, like plaquenil or ivermectin. Keep all dietary fat to 15 grams or less. If you supplement krill oil or phosphytidylcholine, count those grams as well.
If his IGENEX test results were positive on bands 23 and 41, that is an indication he has PR. Another indication is a low CD57 without the 28 day borellia flares. Both bart and PR would cause sleeping disturbances (not oversleeping).
If it is PR he might also have muscle pain, joint pain, teeth or jaw pain, nerve pain, clammy cold hands and feet (in winter), headaches, hot flashes, sweats, depression, profound fatigue, inability to concentrate, stabbing nerve pain, irritated eyes, frequent urination, IBS, auto immune diseases. . . .
I took magnesium for years and it did not help my twitching. Treatment did. I also followed a high fat diet because I was taking mepron/malarone and like so many others, I did not improve.
When I began the low fat diet and ivermectin I was in remission in less than two months. I went from fatigue so severe I could hardly climb the stairs, twitching, muscle and joint pain, cramps and stabbing nerve pains that made me scream, daily headaches, and a mind so dull I was unable to put 2 and 2 together -
- to beating my husband in every single game of cribbage, climbing two flights of stairs with ease, no pains and riding my horse again.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Here are a few links- you notice it talks about strep- well, it is also Lyme, Myco P. and other infections induced, hence the name change to PANS.
Did you get him on antibiotics after tonsils came out? What happened?
Our first 'trial' of treatment was daily, full dose treatment of Azithromycin, along with ibuprofen given 2x a day for 1 month-
Copious notes taken- the change in my daughter was dramatic and significant - I had school people pulling me aside asking me what happened (GOOD)
And I have to be blunt: no regular Dr., neurologist, MRI's, will help you in any way. They will offer psych drugs.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
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Member # 40917
posted
EMG's can be very painful and traumatic for adults. I can't imagine them being any less painful for kids. Others will expand on their EMG experiences here, I'm sure... Is there a pediatrician in your area with PANDA's expertise that can do an evaluation without an EMG?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
No one here is an expert on PANDAS.
I'm not convinced he has that. I feel he was hurt by a strong tincture.
What can you do with that?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
There is a huge support network in PA for PANS.
I'm not pushing PANS. I am not a Dr. (lol)
Just another Mom- and concerned for your son.
Has he never been on antibiotics? Are you trying major liver detox?
That's it from me. If I can help in any way, just PM. Good thoughts and prayers-----
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I know I will NEVER do another EMG. They can forget it!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
u have all convinced me not to do an EMG.
Thanks for the insight-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
2roads - please read my post about those with sick kids....my kids have had similar symptoms and are BETTER now. I have been through PANDAS/PANS and have concluded based on my experience and that of many others that parasites are a major contributor.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I've had two emg's. There are two kinds of needles. One is old and the needles feel like knitting needles being pushed into your skin. The newer ones feel like thin thumbtacks and compared to the old are much better but still painful.
I've been diagnosed with Lyme and Bartonella. I too have had spells of muscle jerks in my stomach and shoulders. The shoulders mostly happen at night. The stomach was different. A continuous jerking almost like a seizure.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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posted
If it meant getting a diagnosis and/or getting better I would still get an emg. I would find it incredibly traumatic to watch my child go through it though but we do what we have to, when we actually have to, to make our children healthy. I certainly would not do it if I didn't have to.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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posted
Rest your mind about the Parkinson's. It is about shaking, not tics.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks surprise, I always welcome 2 cents. I even welcome a ration of crap. So, your insight was appreciated. Honesty is the best policy. My mom used to say she'd take a thief over a liar any day.
I have kicked that possibility around, coupled with so many things such as the poor decision to mix it with an alcohol based enula then water, to GSE dose, to tainted bottle, to well, it's a tail spin.
I know I can't treat him with antibiotics. His liver and kidneys are not very strong. So, I'll never know if something expounded out of control, because I don't have the latittude to do anything, not to mention my husband might strangle me.
It,s been an unbearable almost 2 years now.
Thanks Tutu. I was hoping that one was far reaching, but if latent effects of chemicals may have caused this, only God knows what more I'm in for. Cancer, terratogenicity.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Gosh, I'm just so sorry. I don't know all the background and details, obviously, but hopefully
you have a decent Pediatrician who can run blood tests to check liver and kidney status.
Sending prayers-------
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I hope you have taken him to a Pediatrician, and had this checked?
What are they saying about the uncontrolled movements, day and night? Tourette's?
The website/forum I PM'd you has papers you can print off to bring to a Pediatrician, as well as regular insurance covered Dr.s in your area that may help-
regardless of where your husband's at, surely he can see your son needs medical help/relief, at least.
Sorry---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Lymetoo, that sounds more like and NCV. Stands for Nerve conduction study and is done with patches stuck on skin and electrodes. Shoots electrical impulses through you.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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