Questions!!!

shazza

New member
Hi everyone as you alll know, l wont be having treatment with SCB, it was hard to get any replies from my emails, it was taking them 2/3 weeks to answer them!
and because of other things too, l decided not to go,, i'd always said that if l had doubts about somewhere l wouldnt go!
im in touch with the new clinic barbaras told you about, the Dr's son,and its like a breath of fresh air, there so prompt, depending on the time of day, ive sometimes gotten emails back on the same day or the day after, they know l cant talk and mentioned doing a consultation via computer, which did impress me as no one else has said this, they seem officiant, but very approachable!
They asked me if i'd any questions and ive got loads, but cant remember them lol, l did have some written down that i'd asked SCB but l cant find the list and my mind goes blank when l try to remember them, help lol any suggestions?
sharon
 

barbara

Pioneer Founding member
Questions

Sharon - I think you should ask for the doctor's credentials. I think you should ask what kind of cells she is using and if you don't understand, ask for clarification. You should ask about the screening of the cells for diseases and if certification is available. Most clinics and doctors will not give the name of the actual lab for fear of having their competitor's find out(this is my opinion anyway), but they should tell you what country the lab is located in and why they are using that particular lab. I would ask about post treatment care. Are they going to be accessible and if so how would be the best way to contact them. What about a supplement program? Do you need a wheelchair and if so, do they have one? Will they meet and assist you at the airport or are you on your own? How long until you might notice something positive from the treatment? How many months can the cells still be engrafting? What does the doctor realistically think you can gain from the treatment? (There are no guarantees, but you could ask for a simple opinion). Will you be included in a clinical study she would like to do? How many cells will you be getting and what is the method of delivery? Maybe, someone else will have a few suggestions and you may know some of the answers already. I am glad the service has been prompt. Waiting 2-3 weeks for replies by e-mail is unacceptable and should bring up a red flag for anyone who finds this happening to them at any clinic. If it takes this long before treatment for a reply, one can only imagine what post therapy communication would be like because by then you have paid. I guess I am just finding that competition will up the standards we should expect and I am not going to be silent about giving warnings to members that they should not accept substandard service. If a clinic is too busy to have someone reply to your calls or e-mails, they are too busy to give you the proper treatment and that's my two cents. (with inflation, better make it 4 cents).
 

hlichten

Super Moderator
Hi everyone as you alll know, l wont be having treatment with SCB, it was hard to get any replies from my emails, it was taking them 2/3 weeks to answer them!
and because of other things too, l decided not to go,, i'd always said that if l had doubts about somewhere l wouldnt go!
im in touch with the new clinic barbaras told you about, the Dr's son,and its like a breath of fresh air, there so prompt, depending on the time of day, ive sometimes gotten emails back on the same day or the day after, they know l cant talk and mentioned doing a consultation via computer, which did impress me as no one else has said this, they seem officiant, but very approachable!
They asked me if i'd any questions and ive got loads, but cant remember them lol, l did have some written down that i'd asked SCB but l cant find the list and my mind goes blank when l try to remember them, help lol any suggestions?
sharon
Your other option is to find a clinical trial that you can qualify for. You will possibly have a chance of receiving placebo for a short time, then ultimately getting the stem cells, but at least you will know that you are dealing with a reputable hospital and doctor. You won't have to pay anything, it will be free.

There are some other negatives to trials like lots of pre-testing and follow-up visits, but again, you won't pay a dime, and you won't get scammed.

It is hard to get qualified for one, because many pre-conditions and other ailments may disqualify you. That is one reason why trials are slow, other than funding. The doctors doing the research want results which can be fully validated, so they are very picky about the people who are selected.
 

shazza

New member
hi barbara

Sharon - I think you should ask for the doctor's credentials. I think you should ask what kind of cells she is using and if you don't understand, ask for clarification. You should ask about the screening of the cells for diseases and if certification is available. Most clinics and doctors will not give the name of the actual lab for fear of having their competitor's find out(this is my opinion anyway), but they should tell you what country the lab is located in and why they are using that particular lab. I would ask about post treatment care. Are they going to be accessible and if so how would be the best way to contact them. What about a supplement program? Do you need a wheelchair and if so, do they have one? Will they meet and assist you at the airport or are you on your own? How long until you might notice something positive from the treatment? How many months can the cells still be engrafting? What does the doctor realistically think you can gain from the treatment? (There are no guarantees, but you could ask for a simple opinion). Will you be included in a clinical study she would like to do? How many cells will you be getting and what is the method of delivery? Maybe, someone else will have a few suggestions and you may know some of the answers already. I am glad the service has been prompt. Waiting 2-3 weeks for replies by e-mail is unacceptable and should bring up a red flag for anyone who finds this happening to them at any clinic. If it takes this long before treatment for a reply, one can only imagine what post therapy communication would be like because by then you have paid. I guess I am just finding that competition will up the standards we should expect and I am not going to be silent about giving warnings to members that they should not accept substandard service. If a clinic is too busy to have someone reply to your calls or e-mails, they are too busy to give you the proper treatment and that's my two cents. (with inflation, better make it 4 cents).
im in touch with dr branyons son, and theres onlybeen a few emails but there like a breath of fresh air, they've answered my emails so quickly! depending on the time ive sent one, ive received one back either the same day or the day after, and they've already stated what post care i'll get after treatment and mentioned supplements, they've said they can help with travel arrangments, ive sent you one of their emails, l thought better for you to see for yourself, rather than me tell you! They come across as so thorough, this is how l expected SCB to be and they were the complete opposite and its so refreshing! l think my mind has gone blank because l never expected this professionalism, ive never experienced it before and its lovely!
upto now l am impressed, but l remain cautious!
sharon
 

shazza

New member
hi harv

Your other option is to find a clinical trial that you can qualify for. You will possibly have a chance of receiving placebo for a short time, then ultimately getting the stem cells, but at least you will know that you are dealing with a reputable hospital and doctor. You won't have to pay anything, it will be free.

There are some other negatives to trials like lots of pre-testing and follow-up visits, but again, you won't pay a dime, and you won't get scammed.

It is hard to get qualified for one, because many pre-conditions and other ailments may disqualify you. That is one reason why trials are slow, other than funding. The doctors doing the research want results which can be fully validated, so they are very picky about the people who are selected.
there arent many clinical trials for my illness, its so rare! l think Drs want to make the headlines by finding a cure for M.S , Parkinsons and any other illness that millions suffer from, and only a few hundred get mine each year as more people get it in the states, than they do in other countries, ive seen a clinical trial for it in the states, but as im in the uk, l wouldnt qualify for it, but ive emailed countless places putting my name forward for any future trials!
sharon
 

jpfarm

New member
Same response from SCB

Sharon,

Just wanted to let you know, I have had the same response from Stem Cell Biothrapy & they are quickly moving to the back of my list (haven't ruled them out yet).

I am in a similar boat as you, with CMT being a rare disease and no clinical trials, infact I haven't found any company that has ever treated it with Stem Cell.

One thing you might want to know, the USA just granted a patent to Stem for nureo stem cells. Maybe this will lead to some US clinical trials.

jpfarm
 

shazza

New member
hi

Sharon,

Just wanted to let you know, I have had the same response from Stem Cell Biothrapy & they are quickly moving to the back of my list (haven't ruled them out yet).

I am in a similar boat as you, with CMT being a rare disease and no clinical trials, infact I haven't found any company that has ever treated it with Stem Cell.

One thing you might want to know, the USA just granted a patent to Stem for nureo stem cells. Maybe this will lead to some US clinical trials.

jpfarm
l have a type of encephalitis called acute disseminated encephalomyelitis,l havnt found anywhere thats treated it, my friends daughter has a totally different kind of encephalitis, shes about to go for her second treatment in china! now im quite severely disabled, l cant walk, or talk, my right side is completely paralsyed and my left side is weak, but at least l have a little movement and can communicate, whereas this girl cant move at all and doesnt have the ability to communicate at all, the disease we had damaged our brain in certain areas, so l know it could have been much worse for me!
her first treatment has given her a brighter smile and she can now track her eyes, l want to be able to do so much more! l know that as the first with myillness to be treated, i'll be a guinea pig and l dont mind that, im just glad my illness can be treated and with knowing that i'll never get into clinical trials, being treated with stemcells is my only hope!!
sharon
 
H

Henry Young

Guest
Adult Stem Cell Treatments

Dear Sharon,
I can feel for you. My only American Medical Association (AMA) approved treatment option is methotrexate or some other chemotherapeutic drug. I have systemic lupus fibrodysplasia. Anytime, anywhere I have an inflammatory response my body heals the lost functional tissue with scar tissue. Basically, the rheumatologist wants to kill my immune system - takes about five years - then I will be lupus free. Unfortunately, I will be open for any oportunistic disease to come along and kill me. But, hey the doctor said "you will be cured of your lupus!".

I have spent 30+ years studying adult stem cells. I will take anyone who wants treatment. Either you can come to me in Macon Georgia USA or your blood can come to us. Our only current exception is anyone with a communicable disease, but we are working in that area as well. We take the person's own blood, extract their circulating stem cells, activate them, and then return them to the person for an autologous (self) transplant. No immunorejection drugs required. You will need an accredited person, i.e., phlebotomist, nurse, doctor, to remove your blood, place it into the tubes we will send you with directions, return it to us in the pre-paid package, we will isolate, segregate, and activated your stem cells, then return them to you. You will need an accedited person to set up a a slow saline drip reinfusion. Please hang in there, help is on the way, if you can just last a few more weeks, we should be up and operational. Take care, Dr. Young
 

Achillian

New member
Encephalitis (Sharon and Dr Young)

Hi, Have you found the cause of your acute encephalitis?
Just a warning!! I have chronic Lyme disease which also causes encephalitis, and indeed can mimic Lupus. It's known as the "new great imitator", syphillis being the "old" one!
I had autologous stem cell treatment in Nov 2007, when I'd had some negative Lyme tests. Unfortunately this bacteria is very clever in evading detection and now I know it had not been eradicated. So, in getting the stem cells from my own bone marrow, it was inadvertantly multiplied!
I'm once again testing positive for Lyme, and my worsened symptoms are testimony to that.
I think it's extremely important for anyone thinking of getting autologous stem cells, to be free of any infections before having the treatment.
I don't attach blame to anyone, my tests had been negative, and I was the one who first approached the subject with my doctor.
Sadly, I think it was the wrong decision.
Best wishes,
Anne.:)
 

barbara

Pioneer Founding member
I think your information is valuable Achillian. A person should strive to do their very best as far as exercising, eating right, detoxifying, etc. prior to any kind of stem cell therapy in my opinion. Not all conditions respond well and you are a prime example of how the treatment you were hoping would make you better actually made you worse. I have a lot of inflammation associated with my disease and there are ways to reduce it. I have been working very hard to get myself into as good as shape as possible prior to my next treatment. I still am on O2 most of the time and my goal is to get rid of the nose hose for good some day. I am still on the Pioneer trail. Thanks for your good post. Your information may save someone else from having this happen to them.
 
H

Henry Young

Guest
Dear Anne, I inherited my systemic lupus fibrodysplasia from my mother. She passed away in 1998 from pulmonary fibroses secondary to lupus. We had a standing date the ten years she was with us in Macon. Every Wednesday I would spend the day with her. I would pick her up and take her to the mall for her weekly manicure and pedicure and then we would eat at the restaurant of her choice. About a year and a half before she passed away, she also acquired vascular fibrosis-induced dementia. It was kind of like Alzheimer?s disease. She did not recognize who I was, so after awhile instead being so down because she did not recognize me as her own son, I said ?Oh, @$#% with it. Therefore, I would introduce myself as her date for the day and that my name was Henry. She would say ?What a coincidence, my husband was named Henry too?. I would go and have her get a manicure and pedicure, and then we would go to her favorite restaurant for lunch. I would listen to the stories she would tell of her brother, uncles, and her Dad.

I understand the heads-up from you and thank you very much. Those that get transplants from any source need to be aware of the genetic history of the donor(s) ? whether there are any genetic diseases hidden in the background, I can think of the BRAC-1 gene for instance, or of lingering or hard to reach somatic diseases, like Lyme?s disease (yourself, for instance). That is why a full history and complete physical of the transplant donor should be performed, with certification of being as disease free as possible before any transplant is performed.

Since my problem is genetic and not somatic, I need to get my adult derived stem cells from someone else, as an allogeneic transplant. I have already identified the donor and he has agreed to the transplant. We are just awaiting the permission from the FDA to proceed with the procedure, i.e., allogeneic adult stem cell transplant.

In contrast to most of my peers in this field, I obtain the adult stem cells we use from the peripheral blood. Each one of us (you, me, Barbara, Jennine, etc.) carries around our own first-aid kit of stem cells in various stages of differentiation. Unfortunately, our peripherally located stem cells (in the vasculature) are not normally activated, and only when they are activated can they perform their function. I am putting together a little slide show (power point presentation) that I would like Barbara to post on the open forum for anyone to download. It will describe how we can identify the different types of non-activated and activated stem cells in the peripheral blood. Again, thanks for the heads-up. Take care, Dr. Young
 
H

Henry Young

Guest
Inflmmation treatments

Dear Barbara, Your comment of inflammation got me wondering. What do you use to prevent inflammation? The inflammatory pathway starts with cell damage and the arachadonic pathway. This pathway gives rise to cyclooxygenase-I, cyclooxygenase-II, histamine, leukotrienes, and thromboxane, all of which can induce inflammation through their own subsequent pathways. I also have problems with inflammation. I personally inhibit cyclooxygenase-I, and ?II by using a non-specific inhibitor, aspirin. Some Doctors are reluctant to use aspirin, because of its irritation of the stomach. One can bypass the stomach irritation, as I do, by taking enteric-coated aspirin. Enteric-coated aspirin dissolves in the small intestine, rather than the stomach. I inhibit histamines with the prescription medicine ? Allegra, and inhibit leukotrienes with the prescription medicine ? Singulair. Unfortunately, thromboxanes have no pharmaceutical drug for inhibition. Also, one would want to be careful about taking any more than 500 mg per day of naproxen sodium (generic name) or 500 mg per day of ibuprofen (generic name), because both can harm the kidneys and the liver, in excessive doses.

The other item you need to be cognizant of are allergies, especially to food and environmental. They will also induce an inflammatory response in your body. Usually the inflammatory response will end up in the part of your body that is the weakest in function. There are two methods to discern your allergies. First is to go to an Allergist (costly, but safer) and have them run a ?checkerboard? assay. They mark your back and arms with a checkerboard pattern and place a small amount of a substance (antigen) underneath your skin on each box. Then they should have you wait for a least an hour before they let you leave the office. If you have an anaphylactic response to something it will occur within 60 min. The Allergist usually has a ?crash cart? on hand to deal with such emergencies. The antigens used should be those that you normally come into contact with during your daily routine plus extras. They then wait from 1-5 days and look for rashes, whelts or wheels. The stronger the response, the more allergic you are to something. As one would suspect, if you find yourself allergic to something ? stay away from it.

You can also get a shot series to desenthetize yourself to the antigen. I was anaphylactic to bee stings ? something one can not, with 100% absolute certainty, stay away from so I had the shots series ? mine lasted 3.5 years. Now I can get stung up to three times within a 24-hour time period and not worry about anaphylaxis. I just treat the stings, both inside (pill) and outside (cream) with Benedryl, a histamine blocker.

The other method is the basic trial and error method (inexpensive, but potentially dangerous). You would want to stop eating for about 3 days ? except water. Then add one thing back into your ?menu? at a time and see if you get a response (1-3 days). Keep adding items. If you find one that disagrees with your bodily functions, then you are probably allergic to it. There are various forms in which the inflammatory response can manifest themselves, I will give you examples from my own experiences.

Anaphylatic shock (smooth muscle contracts constricting bronchial airways, blood vessels, etc.): for me the culprits are shellfish, such as lobster, shrimp, scallops, mussels, oysters, etc. I have problems with food transfers in restaurants (utensils touching above items without being washed or items fried in the same grease). If you have similar problems, ask first, don?t assume that they follow good sanitary practices, otherwise stay away from the location.

Adult Respiratory Distress Syndrome (lungs fill up with fluid, need to sleep in an upright sitting position so you don?t drown in your own body fluids): for me any dairy product will elicit the response, such as milk, ice cream, yogurt, cheese, whey, etc. One has to be real careful reading the ingredient labels on food products, you wouldn?t believe how many products contain whey. One also needs to be cognizant of food transfer here as well, i.e., ?processed in the same facility that processes milk products?

Celiac Disease (loss of gastrointestinal lining cells, leads to bloating, nausea, flatulations, and explosive diarrhea). It is an allergy to gluten that is found in wheat, oats, barley, and rye. If I have a celiac flare, I usually don?t eat anything, except water for about two weeks during the flare and after the flare ends. My last serious gluten flare lasted six weeks and I dropped 80 pounds in weight. Since the body?s response is to get rid of the offending antigen (gluten) one loses the lining cells of the gastrointestinal system, so one can not ingest food anyway. Another serious problem is that there is no absorption of vitamins and minerals during this time, as well as eliciting a system wide inflammatory response.

Migraine Headaches (light, sound, and smell sensitivity ? localized severe headache pain that can last 24-48 hours): for me any food stuff that alters neurotransmitter release or function will elicit this response. Examples of such foods are monosodium glutamate (found in any food where there is an intense taste response, i.e., asian food is especially high in MSG), aspartame (Nutrasweet), artificial sweeteners (saccharin, sucralose, etc.), and most spices (i.e., thyme, rosemary, oregano, etc.). The only spices that haven?t affected we so far have been salt, pepper, chili powder, cumin, and garlic. Again, it is necessary to read the label of ingredients very carefully, the items listed are usually in very fine print.

Cluster Headaches (multi-focal severe headache pain that can last up to a week ? longest one so far): for me the culprits are cigarette smoke, chocolate, caffeine, and colas (such as Coke or Pepsi). One person described it as ?having hot pokers stuck in your eyes and then the top of your head being pulled front to back?. For me a cluster headache is like having six migraine headaches happening at the same time.

Rhinitis (runny nose): the usual culprits: cat and dog dander, dust mites, dust, ragweed, and pollen.

Hives, Whelts, Wheels, and Rashes: for me the culprits are insect bites, spider bites, poison ivy, poison oak, poison sumac. Again, best defense is to just stay away from these items.

Any of the above will perpetuate systemic imflammation, except anaphylactic shock, which will kill in a matter of minutes. If you are prone to anaphylaxis you should carry an Epi-pen on your person at all times. I usually carry two with me and my wife has one in her purse. I have gone into anaphylaxis by walking through the smoke of a grease fire in which they had been frying shrimp, by eating at a buffet restaurant where there was shellfish in some of the bowels (utensil food transfer), and by eating at a restaurant where they served shellfish on the menu (unknown food transfer).

Be very careful with allergies. The wife of a close friend has an allergy to peanuts that is so severe that if a bag of peanuts were opened up on a plane they were travelling on that she would go into anaphylaxis within a minute. They do not fly anywhere. Besides an allergy?s own immediate affect on the body, the allergy can elicit an inflammatory response in other tissues, such as joints, lungs, liver, kidneys, tips of fingers and toes, face, essentially any organ with a microvascular supply. Take care, Dr. Young.
 

barbara

Pioneer Founding member
I use NAC and medicinal mushrooms to curtail inflammation. I have also heard that collodial silver works well. I find that drinking ashitaba and taking colostrum also seems to keep mucous to a minimum for me. There may be no scientific basis, but when I find something that works, I become a believer and a regular user of such things.
 
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