Reporting on something that is helping us

[mommakath]

We too use antiviral. We are using it as a back door to building nk cells and were told one of added benefits is it takes the edge off. We use Acyclovir. Not too sure I can tell difference.

[trggirl]

Thanks for reporting Mammakath!! Please let us know if you start to notice anything, good or bad.

[fightingmom]

Thanks for all the info! So glad you are seeing progress! Happy for you!!

[norcalmom]

Thanks for posting this. I've not heard of amantadine before, and will be looking into it for symptomatic help. My son has chronic mycoplasma, and pandas of course, and we are making strides with mycoplasma treatment. Hi Cam KII was 176 - when he was not in exacerbation. He appeared almost normal when we had that taken - relative to exacerbation, so like your child very high CamK.

 

I think what is helping the underlying condition is the minocycline. Perhaps the amanadine is working on a secondary condition or helps with the toxic load that is very high with mycoplasma and makes symptoms worse. Minocycline is in the preferred class of antibiotics to treat long term mycoplasma. Doxycycline and a couple other are also used. MycoP can be very hard to get rid of (or control). My son was on adult treatment does of Azithromycin - for pandas - this before we knew about the mycoP - and he had two IVIGs during that time as well. I stuck witht he Azith for so long because I saw a good improvement when he started, and because I thought I could see a decline when we stopped a few times. And Azith is one of the drugs that is used for it! It just isn't the best, and perhaps since some of the time at the beginning of pandas we were only on prophalactic dose, perhaps his mycoP developed a resistance to it. (which happens if the does is not high enough).

 

During that time - his mycoP IgG went from 2450 to over 3100 - normal is under 300. So, obviously the the Azith was doing nothing for his mycoplasma. Those two levels were taken about 6 months apart. He had not IgM - which happens to many if you've had mycoP more than once, or for a long time.

 

MycoP treatment is long term - 1-2 years and very high does of antibitotics with two week break every 6 weeks or so after the intial phase of treatment (which is longer - 12 weeks or more with no break). And the antibitocs are sometimes rotated to get at the myco at different phases.

 

I encourage you to get your myco levels checked every few months and look at the IgG (not Igm) to see if it is going down.

 

If you want anymore mycoP info, I've posted a bunch in the past year that I've gathered. We started with Doryx - and saw a big benefit after first week or so (when their body is adjusting to the myco starting to die off) Doryx is version of Doxycycline that does not upset stomach as much. DS was on it for 13 weeks. We just switched to Minocycline. Because Doxy (or doryx) usually causes sun sensitivity and my son is fair and baseball season had started (he plays). He also takes an herbal tincture called A-Myco. It is from Byron White Formulas.

 

Thanks for the amantadine tip - we will be researching it!

[fightingmom]

So, I actually searched for this thread after just reading through Barrascano's tips for Managing Lyme Disease and thought you might be interested to know that he has used/recommends amantadine in combo with azithromycin in treating lyme. I thought that was interesting, since many of our PANDAS kids have been prescribed zith as well. I'm going to ask our LLMD and Dr. B. in CT about the possibility of trying amantadine. I have always been suspicious of dopamine levels being too low for DS and wonder if this may help while we clear out the infections and build up his immune system.

[trggirl]

Norcalmom, thanks for your post!! How is the Minocycline working out?

 

 

Fighting mom, I'll be interested to hear what the LLMD and Dr. B say!

 

Quite honestly, I'm not so sure Amantadine is helping due to the dopamine. Ritalin and Focalin increase dopamine and we had terrible side effects. Also, even though it is controversial, we had my dd's neurotransmittor levels checked. She came back high on dopamine as well as some others. I don't know why Amantadine is helping. That's the million dollar question! It could be the dopamine action, or the glutamate action, or something totally different.

 

I did read about giving Amantadine for Lyme. It has something to do with altering the pH. I am weak on my chemistry, but I have wondered if this was the key. If I understand them correctly, several studies say that pro-oxidant conditions stimulate the CamKII. I have wondered if pH somehow does the same thing??? Also, If my dd has pro-oxidant conditions in her body, how does that affect the pH?? See, weak on chemistry !!! What I do know is that our CamKII is very high and something is my dd's body is causing it. I know that Strep, Flu, and other sickness cause exacerbations but I wonder if they are the ultimate cause??? More questions than answers unfortunately.

[coco]

I asked both dr b and dr t about amentadine, dr b did not offer too much, but dr t said it was used quite often in brain injury, and thought positively about it. Our conversation moved onto other things and I forgot to close the loop on that one. Next time I talk to him I will revisit.

[trggirl]

Coco, please let us know if you ask more questions. I am very interested in hearing what other doctors say and the results if anyone tries it!!!

Edited May 16, 2012 by Trg girl

[britneymag]

Coco, please let us know if you ask more questions. I am very interested in hearing what other doctors say and the results if anyone tries it!!!

What dosage of minocycline is your dd on?

 

Melanie

[trggirl]

My daughter weighs 80 pounds and is on Minocycline 50mg once daily and Amantadine 100mg once daily.