The H2S Test Poll Part I: ME/CFS Patients

[R**]

Where to get the test?

Where do we get the test?

Also, just read Cort's blog on this:

http://aboutmecfs.org/blog/?p=633

Fructose test was mentioned.. and lactose and fructose breath tests. Where do you get these?

What is the diet? Is there a link to it?

Thank you.

 

[PWB]

Diet for H2S bacteria problem

I've cut out cheese and fruit, and have noticed I do feel better, not cured. I've heard fiber also feeds the H2S bacteria. I'm not sure what to eat if I cut out fiber. It seems like after removing starches, cheese, fruit, and fiber all that's left is meat.

Does anyone know more details of the diet and supplements for the H2S problem?

Thanks,
PWB

 

[Tony]

From Dr Logan's interview with Cort: "At this point we need more concrete studies although the soluble fiber in oats, barley, rye and root vegetables will be more likely to fuel fermentation and increase lactate production."

If you feel better off fruits that have a high fructose load (apples, pears and lots of fruit each day) you may have a fructose malabsorption problem. For testing ask your local doc or nearest hospital that has a gastroenterology area. Someone would surely know...I'd hope!
Some fruits are more problematic than others and it could be you can handle a lowered amount. Wheat is a major source of fructans for us and is part of the same problem as the fructose load.
We had a chat about it and some external links earlier in this thread:
http://forums.aboutmecfs.org/showthread.php?t=73&highlight=fructose+malabsorption

 

[Tony]

Color change in test

I did the test and thought it was negative as it didn't turn the green/blue color on the leaflet. It turned grey, fairly clear.
Dumb of me because the leaflet says, "Any color change observed within 3 minutes indicates a positive result." My urine went from yellow to grey.

The nurse at my docs office confirmed this as a positive result. So for those who had a colour change to brown etc, it's positive.

Cort, can you change my vote in the poll? I plead stupid!

 

[R**]

Where can we get the test? Thanks!

 

[dmholmes]

Same question. I tried to order it from ProHealth, but it was back-ordered and then they cancelled it. Still says available for pre-order, expected to ship 8/17.

 

[Tony]

http://www.proteabiopharma.com/

Maybe it's available from Redlabs too? Although I think they go by another name in the US now?

 

[Cloud]

Red Labs is now "VIP labs". It's still in Reno, and I believe expected to become part of the new Whittemore-Peterson Institute.

The biopharma site is saying the test needs to be returned to them for processing. Is that the same test being discussed here?

 

[Tony]

Hi Ross, the H2S test is a DIY at home. Biopharma call it a Neurotoxic Metabolite Test. Just pee in a cup and transfer some into the testing solution. No need to send it anywhere, we just note any color change.

 

[Cloud]

Thanks Tony,

Do you know what Dr. Kenny recommends if it's positive? I highly doubt he is gonna treat from Belgium without seeing the patient, and finding a doc here who understands this test will not be easy?

 

[Tony]

The Prof seems to use the H2S test as an indicator of gut dysbiosis. I don't know if he would recommend anything based solely on it. I think it's just a starting point for further investigations.
From the d lactate research he's put out the recommendations include a low carb diet, non d lactate producing probiotics (like bifidus) and short term antibiotics.
www.cfids-cab.org/rc/Sheedy.pdf

I saw KDM last July here in Melbourne and some of my blood went on a working holiday to Belgium. The results will be back next month and I see him late October when he revisits.

 

[Cloud]

Thanks Tony......this is a great thread because I have known all along that gut issues are major player in this disease for me. I am currently being treated for enterovirus (and CNS infection) by Dr Peterson, yet I feel pretty strongly there is more to this gut infection.

 

[Tony]

Hi Ross, I too think many of us have gut issues and some food intolerance. Be really interesting to hear what Doc Peterson thinks about gluten, fructose malabsorption, dairy etc.
De Meirleir tests for these things.

 

[kolowesi]

strong positive, but Epsom salts OK

Hi, Rich,

Maybe there is some other factor at work in my case, I haven't had the Vitamin Diagnostics panel (will someday).

I used to take a lot of MSM, but get indigestion from onion and garlic. I do fine with Epsom salts.

My H2S was a strong positive; it immediately changed color and was almost black at 3 minutes. I am working out treatment now.

I think I will add some stronger digestive enzymes as I have had hypochloridia in the past. Stone-age diet, but kefir is OK as far as I can tell. Not sure which antibiotic, as I opted for the cheaper one, neomycin, but it can cause hearing loss. Don't remember what the other choice was.

Kelly

 

[_Kim_]

Shipping costs to US?

Has anyone had the H2S test shipped to the US? On their FAQ page, the chart reads 15,4 USD. Is that $15.40? So confused...

 

[kolowesi]

Kim shipping

I ended up mailing the form to them, which cost under a dollar.

The total cost was 26 euros, I think. Wish I could remember for sure. It was around $40 US for the test and the shipping.

Sorry my memory is terrible.

Kelly

 

[_Kim_]

Thanks Kelly,

I'll do the same (mail the form). I totally understand about the memory thing - especially when it concerns numbers. The only way that I can remember numbers is by saying them (or singing them) out loud a few times. Weird, but it works.

 

[Cloud]

Had a month long flare up in spite of continued progress with the Vistide treatment. It wasn't due to stress. I feel strongly that it's other gut infections that have now gotten stirred up since we have been killing off all the enterovirus'. Dr Peterson agrees that this is a possibility and ran some GI tests to re-check for Dysbiosis. I will get those results this next week when I return for treatment # 23. He also re-tested to make sure the Virus' hadn't re-activated. That would be aweful because that would mean they are now resistant to the only available treatment. I really don't think that's what happened because tests showed the CMV cleared back in June. Hard to imagine it could be re-activated and resistant after being pounded down to "non-detectable, and yet continuing the Vistide on schedule. I will get results this Monday.

 

[kolowesi]

Ross gut dysbiosis tests

Hi, Ross,

I had something that was around $500 a year or so ago and it came out normal. So I wonder if those tests catch everything.

The H2S urine test might be worth looking into. H2S can cause a lot of symptoms (memory loss is one, my excuse for incomplete list), including post-exertional malaise and immune problems. Scuse me if you've already had this

Not saying this is the root cause or anything, but in my case, it's worth going after. One week's antibiotics (xifaxan I hope) and changing my diet which I've needed to do for a long time, so the bad bacteria don't grow back.

IVIG is good, but I can't afford that, so will just try a lot of colostrum with IgGs.

Good luck, Ross. Please keep telling us what's going on. I might have to try vistide someday, as I had CMV in my stomach tissue along with enterovirus. I got better on valcyte, but my liver enzymes elevated and the doctor took me off. Now insurance no longer pays and I'm not poor enough for the free stuff.

Hard to choose which pathogens to go after, but a 1 week course of abx is nothing after taking them for years on end. I hope to re-do the urine test at some point, if my symptoms go away.

Let us know about the tests, please. Hope you get this turned around.

Kelly

 

[Cloud]

Hiya Kolowesi......No I haven't done the H2S test, but that is an option to consider. I will get my test results this Monday when I see Dr Peterson and maybe find out what that crash was all about. For now I feel much better. I have no idea what happened. Thanks for your response. Off to Tahoe this weekend for more goodies.....