Anyone feel worse after stem cells??

[Achillian]

Hello everyone,
Joined a few days ago, so still trying to find my way around!
Had SC therapy in Germany on 13th Nov, for tissue repair following 10 years of undiagnosed Lyme disease. Have lot of joint, muscle, tendon pain and weakness, plus never ending fatigue.
SC therapy was supposed to enhance my very weak immune system (Under 15% active). First week after treatment I had flu like symptoms, then nothing until almost 2 weeks ago when it seemed like all my symptoms got worse!
Can anyone tell me if it's "usual" to have this reaction??
I've tried to read as many posts as possible, and it seems like most people have the same worries, ie is it going to work, how long will it take, did I get enough cells etc etc!!!!!
Wish I could fast forward about 6 months!!
Would really like someone to allay my fears, but suppose we're all in the same boat here.
Thanks for reading!

 

[barbara]

Another rider

I can't speak for anyone but myself, but you are in for one gigantic roller coaster ride if you are in the norm. Jeannine and I wrote a book, "Stem Cell Pioneers" because of what you describe. No one told us what we might incur along the way after stem cell therapy. We were scared to death and very, very sick more than once. You might find it good reading to know that we have been in your shoes. There is a point, however, that you must determine if you are having post stem cell reactions vs having caught some sort of bug. Only you can tell if you are so ill that you need to call your doctor or if you have just started to feel yucky again like you did prior to treatment. I have actually had a rotten week this week and I am almost at the 9 month post mark. Today is the first day I have felt halfway normal again. I was not ill enough to call my doctor, but I sure as heck was disappointed to feel as rotten as I did. I have to remember, however, that just because I got stem cell treatment, does not make me super human. I have found as the months pass, that my progress is much more steady. This week is really the first week, I have had any problems of late and I don't think it is anything more than a temporary condition. I felt like I was getting a cold, but I never got it. It left me somewhat out of breath and I have had some aches in my neck and back. We have had some miserable weather in Colorado and between that and the holiday blahs, I guess it was just my turn. If a person has had treatment less than 3 or 4 months ago (which would include you), I would not worry too much if I was you unless you truly feel you have some other kind of illness that might get you down. Then you should call your doctor.

 

[Achillian]

Many thanks Barbara,
I suppose it's the unknown element of this that scares me. Sometimes I wonder "what the hell did I do??", but the potential benefits outweigh that.
I'd gathered from reading some of the posts that others have the same experience. What I've been experiencing is a worsening of my original symptoms, nothing I recently picked up. Because my immune system is malfunctioning, I never catch "normal" things like cold or flu!
I'm so grateful to have found this site, as my doctor doesn't really seem to be able to explain what's happening either. Sharing experiences etc is so helpful. I know we're the "pioneers", and hopefully will be in a position to help others in similar situations in future.
In my case, it was either endure years of antibiotics which made me sick, or try to get my own immune system to do the job. Time will tell if I've made the right decision!!

 

[hlichten]

Many thanks Barbara,
I suppose it's the unknown element of this that scares me. Sometimes I wonder "what the hell did I do??", but the potential benefits outweigh that.
I'd gathered from reading some of the posts that others have the same experience. What I've been experiencing is a worsening of my original symptoms, nothing I recently picked up. Because my immune system is malfunctioning, I never catch "normal" things like cold or flu!
I'm so grateful to have found this site, as my doctor doesn't really seem to be able to explain what's happening either. Sharing experiences etc is so helpful. I know we're the "pioneers", and hopefully will be in a position to help others in similar situations in future.
In my case, it was either endure years of antibiotics which made me sick, or try to get my own immune system to do the job. Time will tell if I've made the right decision!!

Since you (and I) were treated with our own marrow cells, there is nothing to be scared of. The only risk was infection from the hip puncture, and you would have known by now if that had occurred.

There is a bit more risk with implants from cord blood cells and marrow from other people (which we didn't have), since the cells do not come from the recipient, but much is done by the labs processing those cells to minimize those risks.

Truly, it is time to relax, eat well, try to sleep well, and NOT think about your progress on a day to day basis. I try to look at it month to month.

 

[Achillian]

Belated thanks for your kind reply Harv.
I take your point about having gotten our own cells, but sometimes worry that my own cells were already malfunctioning. I wonder if the "bad" cells could have reproduced, but my German doctor assures me that can't happen.
I spoke to someone yesterday who had autologous stem cells over a year ago. He had the treatment for cancer, so had chemo first to kill his own immune system. He said the aftermath of the stem cells was worse than the chemo!! It took about eight months before he began to improve. Now he's fit to fly!
Patience, I know!! It was never my strong point!
Anne.

 

[barbara]

Anne - A very hopeful message

Anne - What encouraging news that you posted for those that are still waiting or those that have had the "worse than before" symptoms. This is all such a learning experience for us that your input is valuable. Again, thank you for posting. I do remember a period that lasted a week after Jeannine and I caught some bug on the trip to get treatment that I literally thought I was going to expire. It took me 1 1/2 hours to get my cats fed one night when my husband was out of town. I have never been so miserable in my life, but as mysteriously as it came on, whatever it was left, leaving me better than ever. There is a flicker of hope that burns brightly for all of us. I truly believe that. I also think that as months pass that our immune system does start to recuperate and that in itself can make us feel better.

Anne (and others) - If you would, please give the forum address out to anyone that you think would like to join. The person you had a conversation with would be someone who could give us valuable inspiration.

 

[Pat Chronister]

One mo. anniversary

The first 3 weeks I felt nothing unusual happening with the body. To begin with, my energy level is extremely low and am on oxy 24/7. Had bladder infection in week 4 (that's standard problem for me - every 2 mos or so) and went on Keflex for 7 days. I stopped the supplements during that time as Keflex makes me sick and the supplements are not easy on the stomach. Last week I was even more fatigued (that's hard to imagine) and went to dr. He thought it was flu virus and did nothing. After 7 days of feeling no better, I convinced dr. to give me Cipro. Today, after taking only 2 Cipro, I feel a little better. Wonder if that little amount of Cipro could make the change or I really did have a flu virus??? I seem to be rambliing - hope all of this means the stem cells are doing SOMETHING. Having major problems with diet - nothing appeals to my taste buds. I do try to keep away from dairy and use Soy milk on cereal. I need something fattening to gain weight.

______________________
Had treatment Dec. 6, 2007

 

[barbara]

Diet woes

Dang Pat, Sorry to hear that you don't feel well. Yes, the antibiotic could already be kicking in. As for the diet, there are some things on there that are full of calories - like avocados. You can also eat many foods that aren't low in calories that won't take you off the diet. The diet was designed so that you will avoid the foods it says and try to eat several of the good foods on it. It doesn't mean you can't eat other foods such as burritos (beans have some good protein and calories), non diary ice cream, pancakes, etc. These are not "lose weight" foods. Just be creative. The diet does not restrict you to the foods listed, it is merely a guide to have you eat several of the foods listed daily to improve cell enhancement and avoid a few others. Juices are always full of calories too. I have been drinking blueberry juice and I make fresh orange juice and lemonade.

 

[hlichten]

I like smoothies too:

My favorite is Acai Palmberry, with soy milk, frozen banana and apple juice. Acai is a very strong antioxidant. You can get Acai frozen for smoothies or bottled for drinking straight.

Pure coconut juice is high on my list of good drinks. I get it canned from Thailand or smash into a coconut.

I also drink Kombucha drinks. These taste kind of like vinegar, but they are flavored with fruits that make them taste like fruity vinegar drinks. But, supposedly very, very good for all that ails you. First few bottles of it I drank I felt like holding my nose while I drank it, but it got easier after that. One of the manufacturers of Kombucha drinks GT Dave is a guy in California who swears that Kombucha cured his mother's cancer when nothing else would.

I often get small "ice cream sandwiches" under the brand name "Tofuti Cuties", which are small frozen confections, with, you guessed it...tofu instead of ice cream. I guarantee that if you were not told, you would not know that they were not ice cream! I guess I will have to find out if Howard and Rose can get these on the web!

I have also had the frozen confection called "Rice Dream", which is an ice cream-type concoction made from....rice. Wow, you guys are catching on quickly!!

I feel a trip to Whole Foods coming on. One of us goes there once a day.

 

[barbara]

You are making me hungry and it's bed time

This stuff sounds good Harv. Thanks for the info. Like I told Pat, be creative. Don't suffer and not want to eat because your stem cell doctor suggested a healthy diet that may be a little strange to you at first. Once, you get healthier, you may find that you won't be too thin like many of us with COPD experience. I used to look like a stick. Prednisone took care of that however, but once I got on the stem cell diet, I lost some weight and now I feel a lot better. I love juices and will try some of these. I had a great Thai soup last night made with coconut milk. We have a recipe thread that you might check into Pat. Is there something you used to really like that you are now not able to eat? Let me know. There might be a substitute that you can have. Sour cream for instance comes in non dairy form. Soy milk can be substituted in all recipes calling for milk. Eggs are okay, so don't worry about that. I would suggest organic, free range however. Sea salt is becoming very popular for those needing to cut down on sodium. Turkey can be used in lots of recipes that call for beef. You will feel better for all of it, so hang in there Pat and the rest of you that are having a few post stem cell diet pains.

 

[ladystewart]

Stem Cell in Mexico????

I was on a consult call yesterday, 2/17/08, and I will go from Southern Cali (where I live) to Mexico for replacement. Ok--I have a neuro appt 2/21/08 and now I am soooooo scared but I want to have stem cell replacement. My husband is against Mexico but I may go?? Help----help---

I know that medicine is different in everyone!! I am an Afican-American woman. My father used to always joke and say that my mother (who had MS) and myself where white because MS was a 'white woman' disease. I am light and so is/was my mother.

I am just scared-- especially about Mexico?? Should I be afraid??

Sharon
personal email if anyone needs??
sstew3333@yahoo.com

 

[barbara]

Don't be afraid

LadyStewart - I sent you a PM in reply to your message to me also. I went to Mexico and the hospital where I had treatment is a very nice small private facility. You cannot just walk in without an appointment. It is in a residential area and the highlight of my treatment was lunch on the verandah after my therapy. It was delightful. The doctors are U.S. trained. I think people have preconceived ideas about Mexican facilities. Jeannine and I have pictures of the hospital in our book because we were impressed with it. It is not large for sure, but who cares about that? The only thing I could tell that needed updating was the elevator. It was so slow that I thought maybe someone was operating it with a rope by hand. Since you live in southern California and I doubt if traveling is easy for you, it is probably going to be your best choice of places to have treatment. MS usually does require a booster. You are taken to the hospital by a private medical van and someone is with you at all times, so there really isn't anything to be fearful of. Also, you are allowed to bring someone with you - your husband or whomever you would like.

 

[Jeannine]

ladystewart

There is nothing to fear about this clinic in Mexico. The worse that can happen to you is nothing, but there are several people on the MUltiple Sclerosis thread who have been there. Perhaps you should send Ed Johns a private message and ask him of his experiences. There might be others who posted there you could contact as well.