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John in GR
MemberI met Dr. Raza at Rush in 2001. She suggested rabbit ATG, but after learning from her staff about the less than sterling results her ATG patients had experienced, I decided to stick w the nutritional/alternative approach. I found it to be frustrating that none of Dr. Raza’s research efforts could be used to explore alternative approaches because of the sources of the funds, although Dr. Raza was supportive of the approaches I was taking.
John
MemberBack in March 2005 I had some lesions on various parts of my body including cysts and nasty nasty sores in my mouth. I was placed in the hospital to receive iv antibiotics. It really didn’t help. Eventually I was determined to have Sweet’s Syndrome, an autoimmune thing that is completely unrelated to anything viral or bacterial. It cleared up rather quickly w a round of prednisone. Sweets was diagnosed based on the fact that cultures taken from the sites of the lesions came back negative.
If antibiotics do not seem to be doing much for you I strongly recommend that you suggest to your doctor the possibility of Sweets and insist that cultures be taken to rule out viral and bacterial causes.
Since Sweets is rare, it is sometimes not considered. It is, however, somewhat more common in MDS patients than in the general population.
John
MemberI read the article. It’s encouraging. There are certainly good reasons to hang in there, the best we know how. You never know what good things tomorrow might bring.
John
MemberDear Sigit,
I am very saddened about your loss.
John
MemberWhy do I always attract the weirdos?? This Tahoe Donner fellow I think needs to spend a little more time at sea level. My Dr. Quack diagnosis is that lowered hgb combined w thin air can push fringe washed up hippies who spent too much of their lives at Haight Asbury (sp?) into true space cadets. I’m starting to get a little worried about the unfortunate Mr. Donner who is still a card carrying Democrat, by all reports. Unfortunately, he seems to be proving my theory.
BTW Tah, I do not recommend coffee enemas for everyone. In your case, for example, I suggest unleaded gas. I heard you were a real cheapskate and were sore about the rising price of gas. Depending on your retention time, this might provide a way to store some up in case the prices continue to rise.
Also BTW, have you ever stopped chasing skirts in Europe long enough to consider the possibility that you and your cohorts who have fought every new oil and refinery plan for the last 40 years might have anything to do w the present energy situation??????????
Of course, of course, Tah, I understand completely. How could I be so foolish as to even consider that millions of people might be more important than a few spotted owls etc etc.
Please be careful, Tah. All this fooling around in Europe is nothing to ‘clap’ about.
John
MemberOrganic beef liver extract sounds like a good supp. Organic beef liver lightly grilled is also excellent.
I do get feelings about the effectiveness of various protocol items, and do add or delete items, But it is not possible to prove what is helping.
john
MemberHi Carrie,
My father was buried on his 89th birthday. God allowed him a full and satisfying life filled with enrichment for himself and those whose lives he touched.
The knowledge of our physical separation was more than offset by the knowledge that he was celebrating the day in heaven.
On August 26th I commemorated my brother’s first birthday since his sudden passing last November. Birthdays are thought provoking events, aren’t they. My prayers and condolences are w you and your family.
John
MemberHi Tah,
I think Terri’s comments are excellent. I am a strong advocate of the red meat routine. Beef, lamb, wild game, such as venison, etc. Range fed if possible.
I drink mushroom tea in alkaline water. I also think you need to push yourself a bit on exercise as I think that encourages the body to deliver more hgb.
Procrit is also an option.
Of course, I am also a strong advocate of enzyme supps and coffee enemas.
Some of the stuff I am doing may be absolutely worthless for me. The other side of the coin is that some of the stuff I am doing may be very helpful. The problem is that I don’t know which is which.
It’s like trying to put a puzzle together. Each one of us is different. What works for me might or might not work for you, and vice versa. There are patterns, however, both in conventional medicine and all my quackery.
My particular peculiarity is this Sweets Syndrome thing. When it hits, my blood values go in the toilet. It hit in March bad and was finally resolved w a round of prednisone. It started up again recently, so I’m once again on a round of pred.
My hemadoc recommended tx when I went under 9.0 but I refused for a couple of reasons. First of all, I suspected that it was the prednisone that I needed to knock the Sweets down. Second, I was still functioning well physically. I think the exercise might be at least a part of an explanation for why I am able to still function well even in the face of this Sweets (apparently) induced hgb drop.
Iron overload unfortunately accompanies tx. This new drug Exjade might provide a real benefit to alleviating that problem. But it’s not here yet.
And so, I don’t accept tx unless my body tells me I absolutely need it. Don’t let an arbitrary number dictate whether or not you need a tx. Let your body tell you. On the other hand, don’t punish yourself. If you need it, you need it.
Except for a super nasty time in March 2005 I have not needed it.
I think all the stuff I’m doing may have something to do with that.
BTW you recently said that you figured you have about a year to live once you start tx. Don’t believe it. Only the good die young. You’ll probably live to 100.
John
MemberHi Sandy,
I assume your question re approach was directed to me. My approach is posted at http://www.geocities.com/marlakins/ . SCT stands for stem cell transplant.
In March 2005 I was hit with something called Sweet’s Syndrome which caused sores and drove down my blood values. I needed a round of prednisone to knock down the Sweets and restore my blood values. I did receive five units of blood. Recently, the Sweets started reasserting itself. This time we knew what to do, so it wasn’t near the problem–no further tx’s.
I am now looking for an alternative to the prednisone, as it can have some nasty side effects with extended use.
John
MemberDear Sigit,
You might want to check the following website which outlines much of my alternative/nutritional journey. You have the most difficult decision of deciding how to proceed. The more info you have, the better. http://www.geocities.com/marlakins/
John
MemberI suggest a second opinion from another doctor.
John
MemberWelcome to the world of MDS. If there were a lights out cure we would all be flocking to it. Instead the doctors, the nutritionists, the alternative practitioners and in the end we, the patients all take a shot at our best guess. There is a risk if we do something and a risk if we do nothing. If I could guarantee that what I am doing is a universal lights out cure I would do all I could to cram it down the throats of everyone. Since I can’t, I find it impossible to be overly critical of other approaches or even no approach. That’s not to diminish the fact that I’m very comfortable w the path I have chosen.
When it comes to MDS, however, we’re all a bunch of pilgrims doing the best we can; and, for most of us, hoping that God will bless our efforts.
John
MemberHi Cheryl,
The restraint your doctors are showing is commendable. Many have had nasty reactions to ATG. Revlimid seems promising, especially for those w the 5q- chromosomal defect. To my knowledge, Revlimid users have not experienced the high incidence of nasty side effects associated w ATG.
John
MemberHi Ron,
I met Dr Erba in July 2001. He recommended that I have a stem cell transplant. I decided not to follow his advice and instead followed a nutritional/alternative approach.
I have heard from others, however, that Dr. Erba is well qualified in the area of MDS. There is a gentleman I have been in contact with whose wife is a phlebotomist at the U of M Hospital and who also speaks very highly of Dr Erba.
Best wishes for wise choices on how to proceed.
John in GR
MemberNaomi,
It makes tons of sense. I agree. The Pharmaceuticals like most other businesses are profit driven. If they can’t produce profits, eventually they go down. It’s hard to blame them.
In the area of cancer research, however, there is available a great amount of donated and government money. Why is 99 % of this money also used for only finding pharma solutions?? Meanwhile, folks like me are anecdotally finding help through nonconventional means. These therapies need to be studied. Instead they sit on the research shelf while money is poured into ideas that have no history of helping anyone.
By the way, I’m not fussy re where the solution comes from. I just think there ought to be more thinking outside of the box.
According to your bio, it appears Revlimid is definitely doing you some good. Congratulations. Supposedly it’s more effective than thalidomide w fewer side effects. What is your experience w side effects??
John
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