Sweets Syndrome–I crashed
April 23, 2005 at 12:56 pm #5699
John in GRMember
Another medical term that that I now know more about than I ever wanted to. “Sweets Syndrome”
For those who are new to the forum I was diagnosed in 2001 w hypocellular refractory anemia w 3 chromosomal abnormalities, 9q-, 11q- and trisomy 8. I chose alternative therapies over conventional approaches as described in http://www.geocities.com/marlakins/index.html .
I enjoyed excellent health and energy until Feb-Mar 2005 when I noticed things like unhealed scratches and sores or lesions starting to appear.
My March 1 bloodwork was OK but not great. By the 19th I felt lousy and the lesions were increasing. At the strong urging of Jeff, my MD son, I stopped by the hema for bloodwork. Instead of picking up the results and walking out, the phlebotomist advised that I needed to see the doctor. I went into the meeting room and asked to see the results. When I saw that my hgb had absolutely fallen through the floor to 7.9 I joined it on the floor.
My next stop was emergency where my heart, electrolytes, blood were once again checked. I was then released based on the promise of going to a dermatologist to get the lesions checked out.
A few days later I went to my family doctor who took one look at me and dumped me in the hospital for iv antibiotics and blood transfusions for what he suspected were bacterial lesions . The lesions by now were in my mouth and tongue and getting worse. I had never been so physically miserable. I was weak as a cat, swollen and painful, and the doctors were sure that I had flipped over to leukemia.
I felt totally defeated on another level also. Here I was, the man who had never needed blood tx or any conventional therapies getting five units of blood in three days w only marginal improvement. The hgb and reds were being sucked up, it seemed. Ditto the whites which fell as low as .8 w neutrophils at .2.
Finally the biopsy results of the lesions came back. Not bacterial, nor viral, it was autoimmune. In other words, my dumb body was attacking itself. Sweets Syndrome.
So off the antibiotics and on to antiinflammatory. The antiinflammatory was not effective and I went on steroids (Prednisone)which thankfully has beaten back this nasty nasty stuff.
I am very grateful to the fine team of conventional doctors that got me through this crises situation.
They were still convinced that I had flipped to AML so we did a BMB. Much to their surprise and my relief, the BMB revealed that my condition based on the comparison of the 2 2001 tests and the new test showed no decline and perhaps an improvement in the condition of the bone marrow. Specifically, cellularity had improved from 10-20% in 2001 to 10-70% now.
Once the Sweets was knocked back my blood values did recover with no additional tx. My hgb is now at 11.1, whites 2.2 w neutrophils at 1.1. Some of this could be related to the prednisone. I am now on taper and will take 10 mg for another week.
I learned some lessons.
1. Although I believe I am called to be a steward of my body, my healing or lack of healing is in God’s hands, not mine. God can bless or not bless any approach. I was giving myself too much credit and a bit smug re conventional treatment. That pride has spilled over to my submissions on this forum. For that I apologize to you all.
2. Although I experienced a terribly nasty setback, based on the BMB, my alternative approaches seem to be associated w at the minimum no decline and perhaps an improvement. I accordingly intend to continue and perhaps even expand my search in that regard.
3. Hopefully I have more empathy for those who are physically suffering after receiving the bitter medicine myself for the first time.
JohnApril 23, 2005 at 1:51 pm #5700
John, What a thing to go through!I am glad you found good doctors and the right treatment! I have found there are surprises around every corner with this disease. Often one can’t even tell if they are connected. Even tho I did not go your way, I too have been remarkably “lucky” with very possitive results without a BMT. I am finally off all medication and counts are great!
Well here’s another one to watch for! Last week my legs hurt-thought I had done too much yard work Got Worse-hips and legs-Thought I had a sciatic nerve problem. It actually felt like a bone marrow test that went on forever. Add leisions in a very private place. Shingles or proper name Herpes Zoster from the dormant virus everyone has remaining from having chicken pox as a child. I was in more misery then at any time during chemo or any part of our disease. Luckily they got me on medication and a special pain med for nerves pain right away. My internal Medicine Dr said something about happens when you are run down-didn’t think I was & someone else mentioned stress-maybe. I went into my internal Dr. on an emergency basis so had little time. I will ask more about causes and how to avoid when I am back at Hopkins on Friday. I know i was on the same medicattion they are giving me now during both chemo rounds so they were preventing it from happening when “run down” .April 23, 2005 at 4:44 pm #5701
John Glad you are starting to do better, and so sorry you had to go through this. My prayers are still with you. On a Lighter NOTE since you are on your way back to yourself I can’t wait to see if TAH responds. Like you we Have been using the alternatives but as well also the conventional. Happy you felt comfortable with the doctors.
MY best to you.April 24, 2005 at 5:16 am #5702
I’m glad that you are on the way back to good health!
Not much to joke about re your experiences. As a token of our esteem for you Michiganers (or whatever you call yourselves) I hope that you noted that today in the NFL draft our 49ers passed on our great UC Berkley QB so that Green Bay could sign him….isn’t Green Bay in or at least near Michigan…..all that empty land East of Nevada kind of blends together for us Westerners!
After reading your account of what you are going through, it became obvious that problems are relative. One person’s mountain may well be another’s mole hill, but just after I heard that I was going to try Vidaza again and also get a three unit red cell infusion, I commented that I was glad that nothing else was happening….then I opened the mail and learned that I had jury duty!
Best wishes!April 24, 2005 at 11:09 am #5703
Tah, I love it-the jury duty part-!The sports stuff goes right over my head. Good to hear from you. Guess the three units juiced you up! I hope you are doing well and that the vidaza helps you.April 24, 2005 at 2:30 pm #5704
John I truly believe your belief has brought you this far and will sustain you. No apologies necessary at least to me. If you didn’t try and didn’t believe that would be the problem, recognizing when you need help doesn’t mean you weren’t right just that you have sense enough to get what you do need. This darn stuff sure seems to have the power to humble all of us at times but you keep doing whatever works for YOU. I’ve been on my soapbox too and been rather over the top at times and somehow these good people understand and still love me, I hope. Ha. Take care. BarbraApril 24, 2005 at 5:17 pm #5705
Yes ,We still Love you Barbra. And it is wonderful to see you back on the forum. Your wealth of knowledge, Experience with Ron’s fight, and you sense of humor is an asset to us all.April 24, 2005 at 8:57 pm #5706
Wow, I’m sorry you had to go through all of that! Thanks goodness you had a great team of doctor’s that were able to identify the problem.
Oh, and great news about your BMB! Improved cellularity…that’s Awesome! Your alternative therapies are definately working for you.
Take care, Jody
ps. I enjoyed reading your story…printed it up for mom.April 25, 2005 at 12:52 am #5707
Hi John, Hope you are doing better. Keep That faith it gets us through so much.April 25, 2005 at 3:25 am #5708
I am so glad you are fine, despite that nasty shock. I hope and pray that you have many years of good health.
ConcernApril 25, 2005 at 6:42 am #5709
I, too believe that our healing is in God’s hands but also that He leads us to points where we are to make decisions. It’s good that you realize and profess that God is in control. Your decisions to use alternative methods was not taking it into your own hands and may have contributed to you being able to get through this little episode. Glad you did better than I did last year. You still have options and and the free-will to weigh the options offered.
I read a bit about Sweet’s Syndrome. Hope it has been cleared up and won’t come back. Looks like most of the meds for treatments are the same as post SCT: cyclosporen, prednisone, etc.
Keeping you in my prayers for continued good quality of life for a long time.
JimApril 25, 2005 at 2:40 pm #5710
John, hope you are feeling better, will keep you in my thoughts and prayers. Keep the faith.
SarahApril 26, 2005 at 5:14 am #5711
John, Just glad to hear you’re okay. I was wondering where you’ve been for so long. Thankfully your back and doing okay. Do whatever it takes to stay well, conventional or unconventional. God Bless.
KathyMay 6, 2005 at 9:37 pm #5712
Hey John, I see that you are back posting, hope you are doing better.May 7, 2005 at 11:08 am #5713
Glad you were able to determine what the problem was without waiting too long.
Good luck and may God be with you.
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