Barbara

[Guest guest]

Hi i am new to the group. This was the first posting I read. I came to the

group because after being gf/cf, sugar, yeast, soy, corn free 9 months and

chelating for about 3 months, my sons micro digestive test still shows

terrible digestion. He is now on three different enzymes. Enzymade/ jarrow

zymes/and pepsin,betaine HCL. 9 months ago we started on some other enzyme we

dont use anymore. We have yet to test the digestion since we have added the

pepsin betaine HCL. Although I do notice visually the diarrhea is much more

smooth and not full of big chunks of food. Sorry for being so graphic.

Through all my frustration wondering when these enzymes will kick in, I do

have one positive thing to say and that is my son is gaining weight not

losing. Am I safe to asume that this means the digestion is not as bad as I

thought and the enzymes are working some? It took him about 6 months to gain

2 pounds. He is 2 1/2 and 40 pounds and very tall. The other good thing is,

when we started the diet his stomach was terribly upset every time he ate

food. We used alkaseltzer three times a day with meals. We have not used

alkaseltzer for months.

My son has had diarrhea ever since he had his MMR vaccine (12 mo) we

recently started treating him for parasites, clostridium, yeast (2nd time) we

are treating with vancomycin, paromycin, paramicrocidin 250 (herbal). My hope

is this will be the cause of all the diarrhea. Only time will tell. We have

stopped chelation until we can get his gut and bowel under control some. It

is so frustrating. It seems like such a catch 22.

I am getting from your post that I just need to wait after these other

issues can get under control and then I will be able to tell whether I have

him on the proper enzymes or not. Any suggestions or support welcome!!

mom of Tristan 2 1/2

[Guest guest]

,

I also read a lengthy article on Mercury, along with some stuff our

DAN doctor gave me, and noticed the same info. about heavy metals and

yeast inhibiting any positive effects of the gfcf/enzymes. For right

now, I decided to stop the enzymes, stay on the diet for the most

part, and I'm starting chelation on him tomorrow. I say for the most

part because he went to a birthday party today and had cheetos. I'm

just not going to worry about an occasional infraction anymore, as it

seems to have no effect. I will also look into Culturelle. Are you

using an acidophilus? What is it supposed to be for? Barbara

> Barbara,

>

> I was just reading at the mercury site on metals and digestive

> enzymes. It says the metals are known to inhibit the gluten/casein

> enzymes in the stomach, calcium, magnesium, B6, B12, sulfur and

liver

> detox. And that supplementing with these should be done to override

> the effects until the metals are out.

>

> If you want, try giving like 4 peptizydes and only 1 zyme for a day

> and see if you see any results. My thinking is that this will test

to

> see if the metals are inhibiting and a really high dose might show

> positives, and then you will know there is a high threshold to

> overcome. High doses of enzymes are not harmful in and of

themselves.

> This would only be a short test. If not, skip back to the lower

dose.

> Another angle would be to try a higher dose of the Zyme (like about

4

> capsules) and see if your son feels better. Are you giving any of

> these other supplements? If not, that may be needed. The enzymes

may

> be working to provide more nutrient absorbtion from the food at the

> moment, but the amount of nutrients in the food are not enough to

> compensate for an established deficiency. Magnesium and sulphur

seem

> to make a big difference for people. We give milk thistle daily for

> liver detox.

>

> I did hear back from the two people I wrote. One said it may not be

a

> diet/enzyme based problem and you could consider dropping both and

> move on to other therapies. The other said that the diet/enzymes

may

> not show significant effects until either an out of control yeast

or

> bacteria overgrowth is under control, OR a metals problem is

> sufficiently removed. He suggested peptides test, metal analysis,

and

> yeast/bacteria test. I don't know if you have any of those done.

>

> So, I don't know how helpful this is. Please let me know what you

> decide. If the enzymes/diet continue to not show results, if it

were

> my situation, I would probably stick with 1 pep and 1 zyme at meals

> (skip the snacks) just for overall digestion, eat a well balanced

> regulat diet and go on to something else. No need spending extra

time

> and effort on stuff not giving results. If I run across anything

else

> I will let you know.

>

> .

[Guest guest]

Hi ,

Thank for. I have a meeting with a rep from Orthomerica and one from

CT tomorrow. I appreciate all the advise from parents who have

personal experiences with each band. I've gather up a lot of

information and am trying to research this as best possible to make

the right decision for us. I'll let you know how that goes.

Thank you

Barbara

>

> Barbara,

> Actually, that's one of the key reasons I liked the DOC band, for

its

> lightweight (I think 5 grams), and the pressure points will hold

areas that

> are round, so that the flat areas can grow and round too. In my

opinion it

> really doesn't take much to hold the points needed, so thick foam

is just

> excess and thinner seems more comfortable and less cumbersome. My

son only

> needed one band, and he was fitted once a week, they shaved the

foam all the

> way to almost the plastic. As Debbie said, it really depends on

the growth

> time in the band, and how much further correction needs to be

made. If your

> child has had so many growth spurts that there is nothing left to

shave, but

> yet, still could use more correction, a second band will be

introduced as it

> should be. I would not put too much stock into what these

companies are

> telling you to pit you against another company. Your best bet is

to do your

> own independent research, ask parents and both reps of each product

tons of

> questions that have experience with both, and gauge your decision

on the

> facts that have presented themself. This board has many members

that have

> used both the STARband, the DOC band and locally made helmets, each

with

> their own stories of success, failure, or problems respectively.

It's really

> up to you to decide what you feel is the best choice for your

child, given

> all the variables (success rate, cost, location, etc). Good luck

and keep us

> posted when you decide!

>

> ' Mom

>

>

>

> >

> >

> >

[Guest guest]

Daryl,

The dr. I went to didnt want to even give me the antibiotics but I basically told him I really wanted them. So he gave me enough to take twice a day for six weeks with one refill. I was suppose to take 100mg of doxycycline twice a day. But I took it once a day for 2 months and now I am reducing to 3x a week. I still have brain fog and get fatigued but I have noticed in the past two weeks I havent had any joint pain. So maybe its working. I had a follow up with him Monday and he said doxycycline also acts as an inflammatory but he said I could get the same results from ibuprofen. But when he saw my chart I was 92lbs when I went to him 2 months ago and now I am 100lbs I think he thought it may be helping me somehow so I got another script for it. But again he prescribes it twice a day, but I am taking it according to the roadback org. directions. I have enough for 10 months and I dont know how long I should take it. I have candida in my digestive track according to a stool sample and I am sure it is systemic, but I think as long as you take probiotics every day and add some antifungals like GSE,etc you should be ok. I also had a phone consult with Dr. Janson and he is an MD and holistic doctor and he said I should continue the doxy and make sure I am taking the GSE and probiotics and I should be ok. I think candida can take so many months to clear and I wouldnt wait to treat the mycoplasma. If you arent feeling well and tested positive for myco I would def. take the antibiotic. You wont get better if you dont get rid of this infection, it gets deep in the tissues and is very hard to get rid of. You also need to be taking supp lements to build up your immune system. I spoke to Dr. Vjodani head of immunoscience lab about mycoplasm and he said to clear the infection its a combo of antibiotics and boosting the immune system, its not just the antibiotics. I have seen over 10 Drs. and havent had any luck with any of them either. If you want to talk sometime I can call you or you can call me just let me know. I take a lot of supplements but everything new I take I introduce slowly because I get reactions to everything.

Barbara

[Guest guest]

Hi-I've tested positive for Mycoplasma too, but the doctor wanted to only give me a strong antibiotic for a short time. I couldn't find another Dr. who believes in it.

I did find a Dr. that would give me Minocycline, but I haven't started taking it because I have a Candida problem. Do you think that I should take it now even though I'm trying to detox? I'm overwhelmed with all my supplements but if those could help me, I want to start ASAP!

said that no matter how much she detoxed, she didn't start feeling better until she took Minocycline.

I have such a terrible attitute towards Dr.s now. I've seen dozens of Dr.s all over the country and none of them believe in my getting ill from implants, or Candida. They keep saying that I have fibro and I need to accept it. I don't want to be in pain the rest of my life!!

Love, Daryl

Re: mycos ???

It's not just the infectious disease doctors that are idiots, it is all of them, when it comes to something about implants.

BARBY4271@... wrote:

Shari,I think infectious disease Drs. aren't very understanding about mycoplasma either. The one I went to here teaches and lectures at Boston University medicine school and still didnt think myco was a problem. He said I may have low levels in my tissues but he really didnt want to treat it. He said its usually confined to an area,blah blah blah and said I probally had a false positive and then he said the lab I used wasnt certified, etc. But somehow I got him to give me antibiotics and he wanted me to use the short term high dose but I am doing the 3x a week on my own. I have no other choice but to kinda do my own treatment. But sorry for all this rambling but I just wanted to let you know I had experience with 2 infectious disease drs(the other a yr ago) and they were not very open minded. Barbara

[Guest guest]

Thanks for the E-mail. How did you end up asking for Doxycycline? Did someone tell you that it worked for them? I heard about Minocycline from and I'll start it tomorrow.

How do you know what kind of probiotics to take and how much? I don't know if I should follow the directions on all the bottles or not because I have really bad Candida (I think) I've been tested for it several times by Dr.s who didn't even believe in it, and they said that it was negative. The signs are all there though and a Dr. last week said that she found Thrush in my mouth (I went in for a sore throat) I didn't even know that was a yeast thing until I asked Patty.

Are you doing a special diet? I don't like meat, so I'm having a hard time with it. I also have awful sweet cravings, just thinking about chocolate easter eggs makes my mouth water! Could you tell me everything you are on? I would love to call you if you want to give me your #. If you don't want to put it on the group than send it directly to me at

daryljean@...

Thanks! Love, Daryl

Re: Barbara

Daryl,The dr. I went to didnt want to even give me the antibiotics but I basically told him I really wanted them. So he gave me enough to take twice a day for six weeks with one refill. I was suppose to take 100mg of doxycycline twice a day. But I took it once a day for 2 months and now I am reducing to 3x a week. I still have brain fog and get fatigued but I have noticed in the past two weeks I havent had any joint pain. So maybe its working. I had a follow up with him Monday and he said doxycycline also acts as an inflammatory but he said I could get the same results from ibuprofen. But when he saw my chart I was 92lbs when I went to him 2 months ago and now I am 100lbs I think he thought it may be helping me somehow so I got another script for it. But again he prescribes it twice a day, but I am taking it according to the roadback org. directions. I have enough for 10 months and I dont know how long I should take it. I have candida in my digestive track according to a stool sample and I am sure it is systemic, but I think as long as you take probiotics every day and add some antifungals like GSE,etc you should be ok. I also had a phone consult with Dr. Janson and he is an MD and holistic doctor and he said I should continue the doxy and make sure I am taking the GSE and probiotics and I should be ok. I think candida can take so many months to clear and I wouldnt wait to treat the mycoplasma. If you arent feeling well and tested positive for myco I would def. take the antibiotic. You wont get better if you dont get rid of this infection, it gets deep in the tissues and is very hard to get rid of. You also need to be taking supp lements to build up your immune system. I spoke to Dr. Vjodani head of immunoscience lab about mycoplasm and he said to clear the infection its a combo of antibiotics and boosting the immune system, its not just the antibiotics. I have seen over 10 Drs. and havent had any luck with any of them either. If you want to talk sometime I can call you or you can call me just let me know. I take a lot of supplements but everything new I take I introduce slowly because I get reactions to everything. Barbara

[Guest guest]

Daryl,

Doxy is the recommended antiobiotic by Prof.Nicholson and Dr. Vojdani suggested the doxy also so thats why I suggested it. Doxy is also suppose to be a relatively safe one. I dont know too much about minocin. I take Enzymatic therapy acid. pearls they are suppose to deliver the full amt in tact in the intestines. I think took this one also. I take 2 a day 6 hrs after antibiotics. My phone # is 401-354-8369 and my cell is 401-338-6464 I will tell you everything I take and I do follow a no sugar diet and I follow the Blood type diet. Call me and I will talk more.

Barbara

[Guest guest]

I think I put a wrong number my numbers are

401-354-8368

401-338-6464

Barb

[Guest guest]

Minocin is a tetracycline drug, related to it anyway.

Lynda

At 06:31 PM 3/20/2004, you wrote:

>Daryl,

>Doxy is the recommended antiobiotic by Prof.Nicholson and Dr. Vojdani

>suggested the doxy also so thats why I suggested it. Doxy is also suppose

>to be a relatively safe one. I dont know too much about minocin. I take

>Enzymatic therapy acid. pearls they are suppose to deliver the full amt in

>tact in the intestines. I think took this one also. I take 2 a day

>6 hrs after antibiotics. My phone # is 401-354-8369 and my cell is

>401-338-6464 I will tell you everything I take and I do follow a no sugar

>diet and I follow the Blood type diet. Call me and I will talk more.

>Barbara

>

>

[Guest guest]

Barbara.About 4 years ago my arthritis was largely in my hands. I started with Celebrex and as things worsened, went to other NSAIDS and Plaquenil, finally on to methotrexate. Yet, my disease progressed. I was going downhill and unable to do many of the things I used to enjoy. If I pushed myself and did them anyway, I'd find myself in a hideous flare.

Finally I agreed to go on Enbrel. After 2 weeks, I work up one morning to find that I felt so good! It was incredible. This wonderful time lasted nearly 2 years before the Enbrel began to lose its effectiveness. Sometimes this happens. So, on to Humira. The dose was at first not effective, but in the last few weeks since the dose increase I am slowly but surely feeling so much better! I don't think entirely pain free is something I will ever have again, but I sure can lead a fairly normal life and do many of the things that I used to do, especially gardening. Thankfully my job in not physical, I am a nurse but I am in a more administrative role now. I would not be able to work as a bedside nurse. But I am so much better and have a great quality of life! I say go for it...you too can feel so much better!!, 46, adult onset RA

Hi everyone. My name is Barbara. I'm 41 years old. I was diagnosed with RA 6 years ago (I still work full time). My RA is severe. I have good days & bad days.I take Plaquenil, Methotrexate, Naprosyn, Darvocet, Medrol & Folic Acid. So far, that combo seems to be working & I haven't had any major side affects from the medication. My rheumatologist is considering adding Remicade because the xrays of my wrists show arthritic erosion, so he wants me to get them xrayed every 6 months to watch for any changes. Right away I thought...oh great, more medication. I see the commercials on tv for various RA meds showing people who have severe RA & couldn't do "anything" before taking the advertised medication. They took this miracle drug & now they can go water skiing and get on their knees to do gardening. First of all, water skiing is out of the question for me as I cannot swim. If I could do that before my RA diagnosis, I definitely could not do that now & would probably end up at the local E/R from excruciating pain in every joint of my body. I cannot get on my knees with my RA, so I cannot imagine one with severe RA able to do gardening on their knees & to be out in the direct sunlight for an extended time period. When I go to church, I cannot kneel to pray so I position myself on the edge of the pew to "kneel" as best as I can. Of course I am speaking from my own experience with my severe RA. Is it me or does it seem like the people in these commercials advertising these (expensive) RA drugs that the activities they're able to do since taking that medication are somewhat unrealistic?If anyone here is on the combo of Methotrexate & Remicade, please let me know how that is working for you. I would appreciate any advice.Best wishes to all of you for a pain free day,Barbaraemail: ash_belle