From Our Readers – Comments & Suggestions 06-10-09

De Meirleir H2S Home Urine Test for ME/CFS – Patients Can Order by Mail

I e-mailed [the Protea Biopharma website] to order a test for myself. This is the reply I got:

"We have received your email and thank you for your interest in our test. Due to the large number of mails we have received we will need a couple of days to process your request. We apologize for this delay. As soon as possible we will forward you an order form on which you will find more information about our test, as well as payment instructions. We thank you for your patience.”

[But] the wait wasn’t that long (about a week). I guess it’ll take time for them to ship it… – P


Why I Forward Jokes

Sometimes, we wonder why friends keep forwarding jokes to us without writing a word. This explains why I forward jokes…

• When you are very busy, but still want to keep in touch, guess what you do? You forward jokes.

• When you have nothing to say, but still want to keep contact, you forward jokes.

• When you have something to say, but don't know what, and don't know how, you forward jokes.

• Also to let you know that you are still remembered, you are still important, you are still loved, you are still cared for, guess what you get? A forwarded joke.

So, next time if you get a joke, don't think that you've been sent just another forwarded joke, but that you've been thought of today and your friend on the other end of your computer wanted to send you a smile.

My sister sent me this and I thought it would be sweet to share. – D


M Pneumoniae Likely Caused My Pain

I tested positive for Mycoplasma pneumoniae, one of four mycoplasmas that are said to be commonly found in CFS and Gulf War illness, and have been on antibiotics for three months. I don't know how long I have had it or how I got it, as no other doctor bothered to test for this in the past. My doctor believes that mycoplasmal infections can cause a lot of pain with symptoms similar to Multiple Sclerosis and Rheumatoid Arthritis. I thought for a long time that I probably had one of these diseases because I had all the symptoms.

After being on antibiotics for a few weeks and having a severe Herxheimer reaction [fever, chills, etc. that occur as large quantities of toxins are released when pathogens die], about 80% of my pain went away. – F

Note: to learn more about mycoplasmas, go to Dr. Garth Nicolson’s website


Some Other Causes of Gut Damage

Re: “The gluten syndrome: A neurological disease” reporting that gluten sensitivity can cause nervous system problems even when there's no technical celiac disease (gut damage).

Yes, celiac disease causes gut damage, but other things can cause the gut damage and thus cause the same kind of gluten sensitivity symptoms. In my case, I was using a lot of Advil and Tylenol for pain. I also had problems with sinus infections, so I was on a lot of antibiotics, which destroyed all the good gut bacteria. So, the combination of medications, poor diet, and antibiotics caused the gut damage.

THEN, along comes Candida albicans, a really nasty fungus that loves to live in the walls of your intestines when there is damage and creates lots of nice toxins for your body to deal with. Normally the fungus can't get in, but a weakened immune system is an open door. Your gut will NEVER heal if the Candida is there. Add some wheat/gluten products in your diet, and you're going to have a reaction. I healed my gut using 2 main concepts: take oral powdered Nystatin to kill the Candida while taking away all the offending foods using the Paleolithic/Caveman diet. It took about 6 months to fix things, but it finally worked. Good luck to all! – S


Plantar Fasciitis – Help for the Heel Pain Problem

I know quite a few people with that very painful foot problem (plantar fasciitis). Some of the things that helped them were:

• Freezing a bottle and rolling it on the bottom of their feet

• Cortisone shots …

• CROCS silver cloud rx clogs (that 'rx' is part of the name, they don't require a prescription) found online

• Flector® anti-inflammatory patches (prescription, great and very, very expensive)

• Physical therapy

• Wearing a brace at night (the Podiatrist provided it)

• Prescription anti-inflammatory medication

• TIME = 6 mos to 1 year was the time frame one doc suggested.

Hope you find relief – V

Note: The plantar fascia is a band of connective tissue like a tough rubber band that starts at the heel, supports the arch of the foot, and attaches to each of the bones that form the ball of the foot. Plantar fasciitis is a painful condition caused by damage to the fascia/inflammation – usually a sharp pain in the bottom of the heel when putting weight on it. (See Mayo for an illustration and basic information.) One ‘clearinghouse’-type website that offers a wide range of foot health products including some of those mentioned above is


Another Tip for Plantar Fasciitis

I… have plantar fasciitis and do this quite often. To help relieve the soreness soak your feet in hot water (the hottest you can stand) with Epsom salts, and vinegar (white/cider). It really works! Just let your feet soak until the water cools. It may sound a little odd but honestly I have never found anything to help more quickly. – K


Patient’s Report on London Invest in ME Conference

Re: “London Conference Report May 29, 2009,” by ‘Chris’, posted in ProHealth’s ME/CFS/FM Message Board.

Thank you very much for your excellent report… I went last year but could not go this year. I was very interested to hear how it went and what was said… We are so lucky really that we have such brilliant doctors/scientists working for us… – S

Same as about 2 decades ago. "The questioner expressed his feeling that the speakers had been upbeat, but that he, the questioner, felt that he was lacking specifics about diagnostics and treatment. Somehow he seemed disappointed at the day’s events. A few of the speakers gave vague answers – but no one would give the questioner what he wanted." Thanks for the report. It's becoming increasingly clear to me that the cause(s) and post-Goldstein effective treatments for CFS, will likely come from research outside the CFS community. I'm proud of the questioner – we need more like him. – N

• …Somebody saying effective treatment will likely come from research outside the CFS community looks to me like an excuse to not donate to ME/CFS research. I'm sick of people who can spend thousands on speculative treatment, most or all years give little or nothing to research (or try to raise money from …their family/contacts fundraising) and then complaining that research progress is slow. If more people put their shoulder to the wheel there might actually be progress at a faster rate. (Of course, if people are excited by theories in other areas of medicine and financially supporting this research through donations/fundraising that's ok). – Q


Critical Look at Dr. De Meirleir's News – Implications Remain to Be Seen

Re: Cort Johnson’s blog opinion piece on Dr. De Meirleir’s news release/presentation – “The Big Breakthrough(!)(?)”

…I also suspect, as does Cort, that De Meirleir's findings do point at something relevant. There are many fingers pointing at relevant findings at this time. I was a bit taken aback, I must say, by the way in which Friday's press release was worded. It seemed a bit too good to be true while also offering little in the way of specifics. Nevertheless, it does seem to have, perhaps limited but important, implications for our ongoing efforts to understand ME/CFS. – R


Patients of Dr. De Meirleir Weigh In

His treatment is always based on the test results. I’m a patient of Prof. De Meirleir and I’m from Germany. He knows a lot about diagnostics. Really a lot! He runs the latest tests as well as all other tests on his patients depending on what symptoms they have. If you have CFS there is no doubt that De Meirleir will find something.

• He checks your blood for bacteria which are related to leaky gut.

• He checks for fructose malabsorption.

• He can check for viruses from stomach biopsies.

• He has excellent contacts to all kind of professors in Brussels. He is still lecturing at University of Brussels.

• He checks for all viruses (EBV, HHV-6, HHV-7, etc.)

• He checks for hormones.

• He checks for interleukins. He checks for antioxidant capacity. He can check for NK function.

• He checks for all kind of blood values.

His treatment is ALWAYS based on the test results. He does NOT have a special protocol, which I find very positive since we all are different and have different symptoms.

For IBS he prescribes probiotics, antibiotics and a diet based on allergy test For viruses he prescribes Valcyte and when you can't afford it (like in my case), Zelitrex (Valtrex). + Isoprinosine, Zadaxin etc. He knows about everything! He is one of the few doctors who has access to Nexavir (Dr. Cheney uses it). He prescribes Armour Thyroid as well as Cortef and all other hormones when needed.

I hope so much that he is onto something – but unfortunately he has no general cure for CFS. He is a good doctor in my eyes but CFS is just an awful and very complicated illness. – S

Fructose Malabsorption Test Helped My Son. Both my son and I are diagnosed by Dr. De Meirleir, in 2007. I was diagnosed in 2005 already by another doc. I did not expect from Dr. De Meirleir a treatment which will cure us! I went to him to get a recognized diagnosis for my son and myself.

That said, he still helped especially my son with a simple test for Fructose Malabsorbtion. My son has had all his life problems with intense stomach aches and landed two times in the emergency and was hospitalized. We have been to God knows how many docs and heard the whole rap of IBS and so forth. Dr. De Meirleir diagnosed my son with Fructose Malabsorbtion [and] in one week of cutting out all fructose sugar he had no stomach problems any more and until today he had no problems with his stomach again.

I don’t believe that Dr. De Meirleier has the miracle treatment for ME/CFS and I don’t agree with some of his treatments which include ABX. Mainly because I researched this topic extensively and came to the conclusion that ABX is causing in a big percentage of ME/CFS/MS sufferers a worsening of the condition.

But other than that I believe Dr. De Meirleir has gained over the last twenty years a very good oversight and is a great diagnostician. He covers the whole ground and I am sure he helped a great many sufferers. – K


Advice for ME/CFS/FM Patients Thinking of Applying for SSDI

…[Sophisticated new tests – for NK cells and interleukins, etc.] don't matter for us. I got my long term disability and didn't have any of that testing done. …but I did spend many thousands of dollars seeing a CFS Specialist who was unable to help me, although he wrote great letters. The problem was I found out they didn't count. …The CFS Specialists who charge a lot aren't considered legit by most judges. You want to see regular MDs. NKs are Natural Killer cells in your immune system and interleukins are part of the immune system too. All that means nothing to the judges as, maddeningly, it's considered fringe medicine.

I feel that the important thing is to get doctor documentation. The best way to do that is to find doctors who believe you are disabled. The way I finally found some doctors who wrote good letters for me was by Googling for "Chronic Fatigue Syndrome (written out) Support Groups in _______" my town and then surrounding areas. Then I e-mailed the groups and asked for doctor recommendations; specifically doctors who are good at helping patients get disability. Even some of those were duds but I finally found a good Rheumy for my FMS and a family doctor who had had some CFS training.

They wrote letters and I also found a great chiropractor who wrote a letter for me. Again, you can ask support groups for names to save you time. Then ask the secretary over the phone if the doctor believes in CFS to save even more time and energy. That saved time and energy for me once I thought of doing it.

I believe that there are also materials here at Prohealth that explain how to file and win… I've heard that you don't need to get a lawyer either. Why waste the cash, time and energy? You can expect to be denied the first or second time whether you have one or not. But most people are approved by the third time.

Oh, and one more thing. Start keeping a list of all your symptoms each day and bring that to the doctors. I found a blank body chart online that I copied and then drew on as well. I used color markers for pain and weird symptoms and I had a key on them as well. That made documenting this crazy illness much easier.

The best investment I made towards getting my disability was buying a copy machine. I need it still to make copies of doctor notes to keep up with the paperwork of being on disability. – T


MS Patients Have Same Problems as We Do

From time to time I peruse some Multiple Sclerosis message boards and I have found that they run into many ignorant doctors who don't believe they're ill with MS or anything else significant and disabling. They have the same complaints we do – that they aren't listened to, that people in their lives don't treat them right, and that they're often not believed. Many of them also have FMS.

It's common for them to go to 5 doctors before they receive a diagnosis, and for many of them the diagnosis isn't even definite. It doesn't matter if they have spinal taps or many lesions on their brains, either.

What does this mean for us? Their illness is more accepted and more recognized, right? For most of them, treatments don't seem to help much either.

Let's just say we get our dream-come-true and ME is finally given the status that MS has. Will anything really change for us? – TJ


The CFSAC Meeting May 28, 2009 – A Day to Remember

I just thought that this needed reposting. “A Day to Remember,” by John Herd

As John Herd says “This has been advocacy at its best. Nothing like this has ever happened in the history of ME/CFS.” This is not over yet though. We need to pace ourselves, but now is the time get those letters/e-mails out to hammer the message home. Contact your association advocacy groups for virtual lobby campaigns. Together we can make our voices heard. And EVERY letter, e-mail, and person who downloads the CFSAC meeting counts. (you can write CFSAC videocast to CD and watch bit by bit). There are ready-written letters and campaigns so you can join the call for action and let our message be loud and clear. Together we can do this and now is the time. – S


Parents of ME/CFS Children Our Best Hope?

I place a lot of hope in the parents of children with ME. They've often got the health and stamina to advocate for us. Their stories are gut-wrenching too. I think that's why [the CDC’s CFS research director Dr. William] Reeves doesn't attend on the 2nd day of the CFS Advisory Committee meetings when they give their testimonies. I hear he's usually been MIA during testimonies over the years.

The Whittemores [drivers of the Whittemore-Peterson Institute in Reno, Nevada] are parents of an adult daughter who has severe ME and look what they're accomplishing for us.– T


Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it with your professional healthcare team.

1 Star2 Stars3 Stars4 Stars5 Stars (No Ratings Yet)

Leave a Reply