Update and question

[Guest guest]

> Anyway, we are going away for a weekend in a couple of weeks for a

> baseball tournament, staying in a hotel etc. and I have decided to

> challenge gluten so we can all relax and enjoy eating in

> restaurants.

Challenge it now, so if he has a bad reaction, it won't ruin your

entire trip.

> My first question is this, do I need to up the AFP Peptizyde and

> should I start upping the amount now?

I would give one full capsule with any meal which contains gluten.

>

> My other question is regarding the whole yeast/bacteria issue. My

> son has had alot of gas, and extremely smelly BMs for a long time,

he

> also has a bloated belly. I had thought this might be yeast but he

> had a bad reaction to GSE.

You can try oil of oregano and see if that helps.

This also might be the reason he has problems with fruits. Might not

be the fruit itself, but the sugars causing yeast overgrowth.

Then I was reading this morning that

> bacteria causes the foul odor. I have read Dana's page over and

over

> and I am still confused. Any other advice on how to tell if it is

> yeast or bacteria?

He might have both. Try giving Culturelle for a few days, see if that

helps.

Dana

[Guest guest]

Hi Roni,

I will attempt to help as I am on the cocktail too.

I think the 250 2x aday may work well but if not then try the 250 2x

aday only 3x aweek and go with 250 the rest of the days.

Just am idea.

Also if nizerol did not work well, give nystatin a try as they do

make a powder and its gentle.

The theory this doc has is that there can be mycoplasma attached to

yeast so by zapping the yeast he gets both.

I use diflucan here and there too.

Just ideas.

We need to work with whatever agrees with our body.

As far as switching antibiotics, there are several reasons. Som do

becaus ethey ave been onminocin a while and feel it would be good to

switch off. Other get a darkening of the skin and go to doxy bevcause

it does not do that.

www.immed .org's protocol uses 5-6 anitbiotics in a rotation and has

info about that there.

Check the protocol on this site as your questions may be answered

more fully.

Love

Marge

Love

Marge

> Hi Everyone:

>

> Thought I'd give everyone an update on what has been happening and

also have

> a question.

>

> Some time ago I asked for input from those who had tried the

cocktail

> therapy. I attempted the flagyll and nazrol. While I was on the

flagyll

> (500 mg) the swelling in my hands went down however I had side

effects that

> were too severe. I also had to stop the nazrol, even though it is

not on the

> side effect list I started bleeding from the rectum after a bowel

movement.

> I stopped the nazarol and the bleeding stopped. Now the swelling in

my hands

> returned.

>

> I've tried 250 mg. of flagyll with no side effect, but the swelling

in my

> hands also did not improve. My doctor wants me to try the flagyll

at 250 mg.

> twice a day. As far as the nazarol we will stay away from that.

>

> My doctor also suggested trying Moducare. I tried that several

years ago, but

> did not see any results, however, I did not take the high dosage of

6-9

> tablets a day either. Shortly after being diagnosed with

scleroderma, on a

> friends advice I tried Mannapol from a multi level compant called

Mannatech.

> I stopped taking it because the comapny uses sugar as a base for

the product.

>

> My numbers seems to be stuck at 640, quite a way down from greater

than

> 5,000, but sure would like to get to a normal reading.

>

> Finally, my question,

> When I mentioned to my doctor that some people have switched from

mino to

> doxy he questioned why it would make a difference. Anyone have

scientific or

> documented proof as to why swithching antibiotics helps?

>

> Thanks for all of your help and your ears.

> Roni

[Guest guest]

Hello everyone!

As most of you know, I've had bronchitis for three months, was healthy for a

week and since then, get Upper Respiratory Infections every few weeks.  I went

to the doctor on Friday before Memorial Day weekend and had  yet another URI and

was put on an antibiotic.  Today, I went again, and yes I have another URI and

have to try Zpack.  This is so frustrating! I have to stop my sulfasalazine yet

again and my knees are so stiff I cannot bend, walk, or barely stand.  There is

some pain but the stiffness is unbelievable.

 

So while I was there, I discussed with him my rheumatologist discontinuing my

Plaquenil when its the Sulfasalazine I am constantly being off of due to illness

and infections.  I told him she did phone me back and explain that Plaquenil

would stay in my system for quite some time.  The doctor agreed with her that

yes, the plaquenil does stay in the system.  I told him today how stiff my knees

are, and he asked if they are swollen.  I can see sagging pouches on one of the

knees so it appears there is slight fluid on it as usual.  I told him about the

foot pain and a toe that is going crooked and how I will be calling a

podiatrist.  I told him that the rheumatologist told me we are doing a " wait and

see " approach as she was worried about my liver and adding a more aggressive

drug, but that my symptoms and stiffness are still not being helped by just the

sulfasalazine (when I am actually taking it ) and the increased mobic.  When I

mentioned that we

were doing a wait and see to see if I needed a more aggressive treatment, he

stated to me " in this case, clearly, the handwriting is on the wall. "   I'm a

little out of it with the sinus and URI infection...do you think this meant he

thinks I do need a more aggressive treatment plan? I travel a round trip of 7

hours to see my rheumatologist.  And if they aren't willing to do this, I need

to switch or try talking her into trying something else.  I thank you for any

assistance you have! I know its a stupid question, normally, I can be

intelligent, but I have cognitive dysfunction and fibro fog with  my FMS and

when I am sick everything is beyond my comprehending.  I can barely focus on

anything.  I haven't had anything really to eat in days, I've been having one

snack a day, and normally drink 6 to 8 16.9 ounces of bottled water a day and

haven't even been drinking anything.  He wanted to do a test to see about

dehydration yet is leaving in one hour

for a vacation so he wouldn't have results back in time so started the

antibiotic and said to try to force things such as water, and some food.  I

didn't get the cliche " the handwriting is on the wall in this case " yet I

interpreted it as he thinks I definitely could use another treatment.

[Guest guest]

Wow Demi I got chills reading your story -I remember you and I going back in

forth in private when you first started...and reading about how far she has come

in such a short time ...yes I agree -there's no other way to explain this other

than there is some sort of neuro repair going on. (I know people hate the words

" I told you so!! " so I'll just post my theory page here LOL

http://pursuitofresearch.org/science.html ) From what I am seeing the progress

doesn't stop -they just keep moving closer and closer to normal...and then in

some cases going beyond that to above average. The academics and height are two

areas of surge that come to mind for that

About the bed wetting -did you see this recent topic that Sherry brought up? I

am pulling from an answer I sent to her on a product I highly recommend-

http://sleepdryalarm.com It's also recommended by pediatricians all over (how I

learned about it) Demi as I write below we only needed to use it a few days -it

worked that well! I used to give our their fliers at our Cherab meetings when

we met in person because I believe in this product that much. I know how

difficult this situation can be -and how wonderful it is to overcome this too!

my older son took longer to

stay dry through the night and I got him one of those simple moisture-sensor

alarms that go off with the first drop of urine (don't think they are meant for

daytime use -but if used at home...why not?!) I recall it also came with a

calendar with stars...and each dry night got a star and X amount of dry nights a

week meant a certain prize, from small to large depending on days -simple

behavioral approach. Here's the one that I used...and it worked so well we only

had to use it for a few nights ...but for anyone going through this worth every

penny http://sleepdryalarm.com

But we didn't use the alarm and calendar alone...I also did something else. It

may have been one of the many suggestions that come with the alarm? Can't

remember but I had my older son (notice I'm not using his name even though just

about everyone knows who I mean!) help me pull off the dirty sheets and make the

bed with the dry sheets. He had to also by himself change his dirty clothing

and help me carry the wet clothes and sheets into the laundry room so I could

wash them. He was always half asleep and I would say " You have to help me do

this " Prior to this I would do everything and it seemed like he slept through

it all! You can teach Josh as he is a bit older how to do the laundry and how

to wash the clothing he is soiling.

~~~~~

CONGRATULATIONS DEMI!!!!!

=====