Help my kid has a lot of tics

amother

Natural

Wed, Jan 26 2022, 9:57 pm

amother [ Sapphire ] wrote:

Why do u think he may have strep? (I don't disagree)
Btw his symptoms are back. Tics like crazy.
Also, were all those things ordered a waste? Activated charcoal, liposomal curcumin, methyl B complex, liver nutrients, imag T brain wellness, plus more...

No, they weren’t a waste, chronic strep and chronic Lyme are treated similarly outside of how the infection itself is treated. These other things weren’t directly treating an infection. The reason I think he has strep is because most of these kids are overrun with multiple chronic infection, and strep is just a biggie for a lot of these kids.

I’m sorry the tics are back, and the other symptoms Sad

what is he taking now, and has it gotten worse since you started?

amother

Sapphire

Thu, Jan 27 2022, 12:24 am

He is only taking Zithromax
And mega sporebiotics separate.
I didn't start natural stuff yet, bc I wasnt sure about dosages. I'm gonna clarify that with dr. tomorrow at the appt.
I called tonight a heimish guy that is an expert on Lyme and he told me to follow with this dr. Also to ask him for antibiotics for a longer time, at least several months. Even to take two types of antibiotics at once. He said symptoms will come in waves, worse and then better, every month until he gets better...
He advised to chart it, so I can follow along what helps for him.
And..to rob a bank, as this will be a costly ride.

amother

Natural

Thu, Jan 27 2022, 7:15 am

amother [ Sapphire ] wrote:

He’s right that multiple antibiotics work well for Lyme. Was he tested for coinfections as well?
Curious who this dr is. Can you post location and his initials?

amother

Sapphire

Thu, Jan 27 2022, 3:27 pm

amother [ Natural ] wrote:

Seems you’re in pretty good hands. He will probably give you more than 1 type of antibiotic for Lyme.

Make sure he tests for coinfections.

The supportive supplements, make sure you start low and slow.

Thanks!
Coinfections like what? He originally ordered tons of tests..

So many questions and so much information...maybe I should email u directly?

amother

Sapphire

Thu, Jan 27 2022, 7:52 pm

amother [ Natural ] wrote:

I heard he is a good dr. He just works extreeemely slow. I had a half hr on phone, and he asked me why I am not taking supplements yet. I told him I was waiting for dosages and blood results. He said he will text me the info. Still nothing. I paid already $1000 few weeks already, and got nothing going yet. My son's tics are sooo bad, I kept him home from school. He literally cant be around ppl. I want to treat him already! Btw he said not to give him yet the doxycycline, only the zithromax... Mad

amother

Natural

Thu, Jan 27 2022, 10:52 pm

amother [ Sapphire ] wrote:

Thanks!
Coinfections like what? He originally ordered tons of tests..

So many questions and so much information...maybe I should email u directly?

Very often when someone has Lyme they also have other tic borne disease, and or other chronic infections due to the immune suppression caused by Lyme. It’s important to test for them and treat because otherwise you might not see improvement. These coinfections include
Babesia
Bartonella
Erlichia
Ricketsia
Rocky Mountain spotted fever
Ebv
Cmv

amother

Natural

Thu, Jan 27 2022, 10:57 pm

amother [ Sapphire ] wrote:

That sounds frustrating about the difficulty communicating. You deserve better service for all that money Mad

So sorry about the insane tics. Did you end up trying the motrin/Benadryl/robitussin protocol for tics? It can really stop them in their tracks. Other things that help quickly for tics is very high dose NAC, Gaba, cbd, vit b1, glutathione, epsom salt foot soaks. The other things he wants to give are great but they are more slow acting long term type of things. Even antibiotics can take a while to kick in. You need things that will take down inflammation now. What is his diet like?

amother

Sapphire

Thu, Jan 27 2022, 11:30 pm

amother [ Natural ] wrote:

In addition to mycoplasma infection, the CS Elisa Peptide is positive indicating Lyme
He said coinfections negative BH.
He is adding Methylene Blue and Chinese Skullcap.
I am dizzy....

amother

Natural

Thu, Jan 27 2022, 11:34 pm

amother [ Sapphire ] wrote:

In addition to mycoplasma infection, the CS Elisa Peptide is positive indicating Lyme
He said coinfections negative BH.
He is adding Methylene Blue and Chinese Skullcap.
I am dizzy....

Mycoplasma can be considered a coinfection . Chinese skullcap is great for neuroinflammation, tincture works best. I’m not familiar with methylene blue but have seen some discussion about it.

amother

Sapphire

Fri, Jan 28 2022, 12:15 am

amother [ Natural ] wrote:

That sounds frustrating about the difficulty communicating. You deserve better service for all that money Mad

Wow..you really know your stuff..
How do I get NAC gaba, etc?
(Glutiathone is part of the regimen I will start)

His diet is regular. Not fair to stop him from having ice cream when the whole family has...or a chocolate chip cookie.

He ate chicken, farfel, crackers, lettuce, for dinner. After that a brownie and some orange juice ices...

I'm gonna go back to motrin, altho it sounds crazy to give him all three (motrin, robittusin, benadryl) on top of everything...
It's really not a solution.

amother

Natural

Fri, Jan 28 2022, 12:19 am

amother [ Sapphire ] wrote:

Nac and Gaba you can get at a hfs or on Iherb.com

Why is it crazy to give him those meds on top of the antibiotics? It’s important to get the tics and inflammation under control.

You might want to address his diet at some point, what we eat has a HUGE impact on our neurological health.

amother

Sapphire

Fri, Jan 28 2022, 1:07 am

amother [ Natural ] wrote:

He is a skinny kid, small eater...I should give him three over the counter liquids, 4 concoctions before breakfast, 4 more AT breakfast, 3 at lunch, four more at dinner. Poor kid. I dunno how his stomach Y
And I should control his diet too? Prob no corn or sugar...so basically he wont eat anything reg that ?

What is HFS?

Explain how foot soaks in connection to the brain.

amother

Natural

Fri, Jan 28 2022, 8:08 am

amother [ Sapphire ] wrote:

What are all these things? I thought you said he’s just on azithromycin and probiotics now? You don’t have to start the other things yet if you first need to get the tics under control. This is a flare protocol, not a long term thing. The other things can wait, it’s important to do whatever gets the tics under control first. You’ll figure out your next steps later. Other than antibiotics there is nothing in his protocol that aggressively targets tics except maybe Chinese skullcap and he will need massive doses. Also, unfortunately lots of Lyme kids are on extensive protocols and they do need to end up taking many many many “concoctions” in order to get better. I understand not wanting to stuff his with meds, but he’s sick. He needs this.

As far as diet, it’s an important part of healing for most kids. What he’s eating can quite directly contribute to the tics. I know it’s overwhelming but if you want to get a handle on those tics...

Footsoaks help the brain by absorbing magnesium and sulfate into the bloodstream which aids in cellular detoxification and lowering the inflammatory response, which leads to a reduction in symptoms of inflammation.

Hope this helps.

amother

Sapphire

Fri, Jan 28 2022, 12:40 pm

amother [ Natural ] wrote:

Sorry If I wasnt clear. My brain is stressed out from all. (other stuff too)
He was taking zithromax and probiotics, until I received those supplements on order. Now that we got his diagnosis dr added a few more things (nystatin, methylene B, and chinese skullcap)

So every morning:
Methyl B complex
burbur pinella
Micellized pure PC
Glutiathone

Breakfast:
Curcumin
Magnesium threonate
Methylene b
Chinese skullcap

Lunch:
bodybio balance oil
Mag threonate
Curcumin
CS

Dinner: similar as above
Night: activated charcoal

On top of that motrin, robitussin, benadryl, NAC and all other stuff mentioned?? Foot soaks, probiotics, multivitamins...

How in the world can one kid consume all this in one day?

amother

Natural

Fri, Jan 28 2022, 3:26 pm

amother [ Sapphire ] wrote:

I hear that, that’s quite a protocol. Not uncommon for Lyme though, but I could see why you’d have time squeezing 3 more things in. My personal opinion would be to prioritize things that will help stop the tics now.

amother

Sapphire

Sat, Jan 29 2022, 7:49 pm

So...it hit me over Shabbos...

A company called me on Friday to order yet another 2 vitamins/remedies. $120 each

I have spent over $1000 at this dr. All I got was a blood test (which I did for another child free by diff dr.). I got results, but no clear instructions how to take, what to take...every time I call there is a charge. It seems that this will be a never ending journey of buying and treating. My counters are full of bottles, I became tense and busy with this, and the dr wants to see me every month, but is very hard to communicate with

In his own words he said it is not an overnight cure, and he cannot promise any remedy.

I have a larger family, and I simply can't afford it. I feel like I am getting ill myself. I am done with him. I will either get straight up antibiotics, or pursue a diff way to treat him (maybe double check if it is indeed Lyme. My sister is in medical field and said false positives are not uncommon. She also said joint pain is the main symptom of Lyme, which he does not have).

Call me crazy, but there has to be another way.