Ryan

[luvmywonderfulkids]

Yes we have — thanks to everyone on this board! We have the humaworm and I just want to get his diaharrea back under control before we start because he has to stop the probiotics while doing that — correct?? And when he did the liver flush, it caused him to have diaharrea again and we are not back on track yet.

Should we be doing anything else for the yeast? He is currently sugar, milk, gluten-free.

I can't tell you how much I appreciate everyone's knowledge!

Sue

[justsaynoemore]

I haven't jumped into the colon health part of the discussions here, but I had my first high enema colonic almost 30 years ago, and have them on a regular (that's a pun) basis. 

I had gotten so constipated early in my adulthood (probably from the thyroid disease), that I turned to this modality to help keep me going, literally.  After a long series of colonics, he broke through the blockage and now its on an as needed basis.

I am also on a huge regime of enzymes, core bile, parasite cleaning, etc., alot of which is discussed in here.

I truly highly recomment high enema colonics for good bowel health. 

Hope things start to improve for Ryan and your family, take care ~~ Cathy

[JBJBJB]

[user=147]Mary M[/user] wrote:

Hi,

Mitchell, my son, has Crohn's disease. Mitchell, 15 years old, is on AP and in remission.  He does have problems but his medication can be adjusted.  If the pediatric gastro doctor doesn't recommend the tests,  I think it is better not to do these procedures.   I hope this helps you make a more informed decision.

Mary M  

Mary,

What type of antibiotics does Mitchell take for his Crohn's disease?

Thanks,

JB

[JBJBJB]

Sue,

Ryan may have Cron's Disease (CD). Have you checked that, too? I agree with Kim. First I would take a blood test to rule out  Lyme Disease. If Ryan does not have LD, then check the CD. I would ask Mary M what she would do if she'd start all over again.

It's a very hard decision. Ryan can handle anything he has to, I am sure. But it's hard for him to hand anything at this young age.

JB

[Parisa]

As far as I know there's no reason to stop probiotics while doing the parasite cleanse.  Maybe you were thinking antibiotics???

[Maz]

[user=13]Parisa[/user] wrote:

As far as I know there's no reason to stop probiotics while doing the parasite cleanse.  Maybe you were thinking antibiotics???

Hi Parisa,

I emailed the Humaworm people about whether to stop antibiotics while on Humaworm and they said, “No, as both are doing the same thing and working in synch.” However, they did say not to take probiotics while on Humaworm. Not sure if this applies to all parasite cleanses, though. I think it has to do with the Humaworm negating any good effect from the probiotic, as it probably kills off everything in the intestinal tract. Kim, our resident parasite cleanse expert, might be able to elucidate further. To be sure for one's self, though, an email to Humaworm support is worth the while to confirm this for one's self. They're pretty quick in responding. I think it was about a 24 hour turnaround time from my email to them.

Peace, Maz

[luvmywonderfulkids]

We did check with Humaworm and they did say to stop the probiotics while on the Humaworm — I am a little nervous about that because as I said, we just got Ryan “regular” with the probiotics and now we are going to take them away and use Humaworm and antibiotics — just a little scary.

According to the pedi gastro, if Ryan had Crohn's, it would have shown up in his upper GI test — is that true? Also, we are working on getting the dermatologist to order the Lyme test from Igenix — she is supposed to be calling us back to let us know — if she can not, we will order it ourselves to see if there is any Lyme. He has had the western test already and it came back negative.

Maz, he should have the PCR test correct? what other one that Igenix offers should he have?

 

Sue

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

Maz, he should have the PCR test correct? what other one that Igenix offers should he have?

Hi Sue,

The test that many of here have had is called the “Western Blot,” both the IgG and IgM. As far as I know, the PCR is not as sensitive as the IGeneX Western Blot. You might be interested to read this LLMD's discussion the WB test. As far as he (and many LLMDs) is concerned, any bands on the IGeneX WB that show up positive or even equivocal are evidence of exposure, even if it doesn't meet the IGeneX two double-starred criteria for positivity, especially on the highly specific bands:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

Worth keeping this link to hand in order to compare results with the explanation of the different bands on the test.

Peace, Maz

[Parisa]

If the reason she said to stop the probiotics is because Humaworm will kill the probiotics, then why don't you give him the probiotics several hours after even if some of it gets killed.  He still might get some benefit from it.  If it's for some other reason, I'd like to know what that reason is.

[luvmywonderfulkids]

Maz,

These are the tests he has had so far, performed at All Children's in Tampa

Lyme IGG <0.80

Lyme IGM <0.89

Sue

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

These are the tests he has had so far, performed at All Children's in Tampa

Lyme IGG <0.80

Lyme IGM <0.89

Sue, the standard WB tests are not as sensitive as IGeneX WB tests, in part because they removed some bands – if memory serves, in the 90s – that were highly specific to certain antibodies for borrelia when they were creating the Lyme vaccine. The bizarre reasoning that was given was that those antibodies were statistically insignificant…but they were significant enough to use for a vaccine???? The bands that were removed from standard testing, but positive on IGeneX WB testing are often found in the sickest patients.

Incidentally, the Lyme vaccine was removed from the market because it was causing a high incidence of….ta-da…autoimmune diseases! This is all documented in the book written by Discover magazine editor, Pam Weintraub in her ground-breaking book, “Cure Unknown – Inside the Lyme Epidemic.” You can read the first chapter here:

http://www.cureunknown.com/

Peace, Maz

 

[Kim]

Sue,

You'd probably have better luck getting the right test if you order it yourself from Igenex.  The basic Western Blot is test #188, and #189.  They will send you the test kit and forms.  You can fill out the forms then you have to have a doctor sign it and agree to receive the results.  It's less pressure on the doctor if you do the work.  Then you can take your signed form and your kit to the lab, fill your two vials then drive it to the overnight shipper.  You have to do the blood draw Mon/Tues/Wed to assure it arrives back in California during the work week otherwise they won't accept it. 

That's how I did it and it worked fine for me.  My local doctor is clueless about Lyme, but he was happy to oblige my request.

kim

[luvmywonderfulkids]

Thank you Maz and Kim — I will call the dermatologist today and make sure that she will sign, then I will order from IgeniX — Sue

[luvmywonderfulkids]

Hi, everyone. This is Ryan's Dad, writing under my wife Sue's account (with her permission, of course). 🙂

We decided not to do the colonoscopy or the endoscopy. Those procedures had been requested by the dermatologist. The results of the biopsy that she performed on Ryan indicated Morphea, and she thought that a colonoscopy and endoscopy would help to rule out systemic SD. The pediatric gastroenterologist disagreed, his reasoning being that whatever autoimmune disease Ryan actually has, we are not going to change our treatment of it (AP, diet, etc.). So, why put him through two invasive procedures. I sided with the dermatologist, and Sue sided with the pediatric gastroenterologist.

This stalemate led us to the realization that we had been leaving out one very important component of the decision-making process: Ryan. Ryan is 14 now, old enough to be involved in these decisions. He's a smart young man, and he understands the seriousness of all of this. So we reviewed all of the pros and cons with him, and his “deciding vote” was to not do the procedures at this time.

I also want to reiterate what Sue has posted on several occassions: we can't thank all of you enough for your suggestions, comments, insight, and support. I can't tell you all how lucky we are to have found this website. Thank you!

[Cheryl F]

Hi Dan, and welcome! I got goosebumps reading your post. My daughter was 16 when systemic SD hit, I know a bit older than Ryan, but I wholeheartedly agree with your decision to fully involve Ryan in the decision making process. It is really quite empowering, and I believe that empowerment will serve to help his body have the strength to fight and RECOVER! Just knowing that you have and are making choices for your own health and future will be a life lesson for your family, one that I believe you will come to someday be grateful for. This experience has changed my entire family for the better.

Now that Jess has conquered SD, she is taking on one of life's big challeges, cooking for herself. No kidding, just minutes ago she said that she didn't think she could make lausagne, she said it was too hard. I talked her into trying. Bottom line, Ryan will be better off knowing he is a part of his own solution. There will be time for those tests when the time is right, just continue discussing all of his options and learning new options.

Good luck, and again, WELCOME, we're glad you're here.

Cheryl Ferguson

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