Pandas/Lyme Update

[P_Mom]

Absolutely with food....severe nausea and stomach pain if not...also, do not take with any dairy...it interferes with absorption of Doxy. Protect your eyes, too because eyes also become very sensitive to light when on Doxy and my doc had me get special cocoon sunglasses.

 

I took that med for about 6 months and hated it! I didn't have any problems with any others.

 

Sorry all for the double (triple)(no,multiple) posts...don't know what happened.

Edited October 1, 2010 by P.Mom

[P_Mom]

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[P_Mom]

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[P_Mom]

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[sf_mom]

This is what I am worried about, I don't do well on antibiotics.... Thanks for the tips.

[norcalmom]

ok - good, glad you will still be on the forums. I will pm you when I am heading north for appoint w/ drs H, or associates.

 

take care!

[justinekno]

I also recommend not lying down for 45 minutes after taking it. Otherwise the pill tends to cause some serious heartburn.

 

Thanks, They did mention the sun issue as I am very fair skinned/freckles/do not tan easily.... But they didn't mention to take the Doxy with food and will need to move to lunch time.

 

As you can imagine: nothing but a pill dispenser with not enough time in day.

[MomWithOCDSon]

SFMom --

 

Many months ago, you turned me (and probably some other PANDAS parents, as well) onto bentonite clay. We have never used it to the extent you were at one point (lower doses and lesser frequency), but given your DS's current gut diagnoses, I feel like I need to ask if the current doctors have found any correlation between bentonite use and some of these latest manifestations? Especially the intestinal wall issues. I'm wondering if some of that might not be a side effect us other users of bentonite might want to take into consideration.

 

Thanks!

[sf_mom]

It was the unidentified intestinal parasite (at least seven weeks) and the underlying untreated Lyme Disease (possible co-infections) that caused the stomach problems. When kids have LD they can become 'trash cans' for co-infections, etc. because they have almost no facility to fight these additional infections/viruses/environmental toxins. An average kid can handle molds, an average kid can handle and resolve viruses, an average kid can handle additional bacteria's.... a child with LD often can not. When we added the Alinia the stomach issues resolved within 48 hours (or at least we stopped having red/brown stools) and haven't had problem since. We continued with the Bentonite Clay throughout these events. BELIEVE ME we consulted with many individuals regarding everything we were doing inclusive of the Bentonite Clay in early August. I also received some very interesting information from the Dr./compounding pharmacy on how the mucus lining wall is deteriorated by parasites and once its broken down it can lead to additional yeast issues because the yeast attaches to intestinal wall easier.

 

Other things that contribute to damage of intestinal mucous layer:

 

- Gluten Intolerance

- Steroids - e.g. prednisone and cortisone

- Alcoholism

- Certain Antibiotics

- Crohn's Disease and other severe inflammatory bowel disorder

- Chronic Giardiasis

 

Our LLMD also recommends the use of Bentonite Clay in addition to your nutritionist. How our LLMD describes Bentonite Clay... is it acts as magnet for the toxins in the liver bile. The toxins from both the bacteria (exotoxin) and the die/off (endotoxin) is shipped off to the liver for elimination from the body. When the body is overload, the liver can't handle the processing of toxins and as a result the toxins are shipped back out into the body for other organs to process/cleanse. The bentonite assists the liver by pulling the toxins from the bile and then eliminate them through the stool.

 

Interestingly, you can take the toxins from one diseased animal and inject it into another to create the same disease. So the toxin alone can make the animal sick.

 

‘Microbial toxins are components or products of microorganisms

which, when extracted and introduced into host animals, can

reproduce disease symptoms normally associated with infection

without infestation by those microorganisms’, Williams and Clarke,

1998

 

http://www.agls.uidaho.edu/foodtox/lectures/lecture21/L21-Bacterial%20Toxigenesis_outline.pdf

 

I hope the above information helps and gives you some reassurance about the use of Bentonite Clay. We are continuing with one cup of Bentonite Clay per day, per person in our household inclusive of our 3 year old twins. BUT, definitely consult your Dr. if you are worried about its use.

Edited October 2, 2010 by SF Mom

[RNmom]

SF Mom your posts have helped me in many unexpected ways. Thank you! We did check into Lyme Babesia, Bartonella (Igenex), Mycoplasma, EB virus, yeast, and other issues because of things that you and a few other parents have posted. We are so grateful - our ds14 with PANDAS tested positive for EB virus and Mycoplasma and he has a lot of symptoms of Babesia (so we can suspect Lyme all the more). We are anxiously waiting for our Igenex results.

 

Where would we be without this valuable information? Probably very frustrated that the PEX our ds14 had this past summer was not more effective. He was at 60% improved 8 weeks post PEX when we started Valutrex a few days ago for the EB. SUDDENLY, he has had a burst of improvement - much of it in the areas of his communication and interaction with the family, and his cognitive function. His eyes look "brighter" to me too. I think much of the 40% improvement we were missing post PEX will be gained as we move forward and treat these additional infectious issues.

 

Our son would not have this chance without the information I learned from SF Mom and others who advocate for a deeper look into all possible sources of assault on the immune system. Thank you SF mom!

[sf_mom]

Wow, so sorry for the diagnoses but I know when all the underlying issue are address he will slowly begin to 'fully' recover. Your post this evening has made all it all worth the effort and why I've continued.

 

We have seen rapid improvement in our twins 'lupus' like symptoms since treating them for Babesia!!! There is hope.

 

-Wendy

 

P.S. It's been a long journey to get to our current diagnoses..... Our family wouldn't be here if it were not for some of the friend's off forum that unraveled the Lyme connection in their own children prior to our families. They truly deserve the credit in the pursuit for co-infections and prompting of my posts.

Edited October 3, 2010 by SF Mom