Stem Cell Therapy

Chest and lungs
1

Hello All. I am very disgusted and discouraged with my health at this point. I have asthma, bronchiectasis and pseudamonas for at least 2 years now. I was wondering if there is the possibility of stem cell therapy for our condition at this time. I sure hope so for all of us. I would give about anything to be rid of this condition. If any of you are aware of this I would be greatful for any information you could share. I live in the Northeastern U.S. Thank you all so much for being there with encouragement and just knowing I am not alone in this nightmare.

Debi

2

Hi Debra sorry your down but I know how you feel. I'm not sure of this in UK . At least we have this site. I'm sure someone will tell you in a while . Thank care .

3

Hi Debi.

Someone from the States reported on this site that she was planning on having f stem cell treatment a few months ago. Can't remember her name, but she promised to report back when she'd had it. I looked on the company's website and wasn't convinced about it being worthwhile. They don't provide any evidence of the effectiveness or success rate of the treatment, just hard sell! Our national health service in the UK doesn't recognise this type of treatment and there are plently of negative comments on the web from people who've had this very expensive treatment ($6000?). I would treat it with extreme caution. If you are interested I suggest you email the company - they're very good at responding to emails. I get regular emails since my inquiry, but no facts, just more publicity - and ask them for some hard data about success rates etc. I don't think I'm allowed to mention company names of this site, but it's easy to find them if you google 'stem cell treatment for lung disease'.

Best wishes,

John 

4

Hiya Debi,

The person John NB was talking about is a lady named Beth I have been on this site for awhile and evrything Beth has talked about is really been very helpful to me and others,I'm sure she will be on,and inform you of what she has done,also

you should go throgh past discussion and you could find all the past replies she and others have talked about with regards to stem cell.

Best Regards

5

Hi, Debi, 

You are not alone in your nightmare.  I have asthma, BX and COPD - at some point in the past I had pseudomonas and have also had an NTM.  I've had a reply to someone in another discussion moderated and I think deleted so I'm not sure what I can't say but I'm not going to mention so many names just in case.

I've been treated by a natural doctor and I'd recommend trying to find one and see if they can help you. Always taking antibiotics isn't good and you might be able to get better with more natural ways.  I just got rid of a horrible cough and sore throat with mug after mug of hot tea and green tea with honey one after the other.  The cough has gone at least in the daytime while I'm drinking the tea and the sore throat went in 2 days  Zinc lozenges worked. And the green mucous I started out with is now white and clear.  But I knew this had not gone to my lungs like pneumonia.  I read so many good tips on this site and plan on trying all the ones I think I can do.  Started Nebulizing with salt water last night and it didn't make me cough the way albuterol does but my Pulm. Dr. said that's OK to do but to still do the albuterol and my COPD drugs I do and I haven't been in the hospital or had an infection that I know of.  Nothing that didn't clear up on it's own with natural things.

I read about stem cell therapy 2 wks ago and was curious and called them up as they were just a couple of hours from me in the south US.  I made the query online and they immediately called me back so I sensed 'interest on their part' and she was explaining the procedure to me and I asked her the price and it was higher than what John N.B. mentioned in his reply to you. It was more like 1500 more than that.  So I expressed shock and explained my concerns about 'what if it doesn't do anything?'  She quoted me percentages and they were reasonable; I can't find my notes now but it all sounded good. They do have testimonials and successes on the site I was on.   I just couldn't fathom why it was so expensive when the procedure is quite simple; I'd had a procedure done exactly the same way only not with stem cells and the expense for that was nowhere near what they are asking. Perhaps it's the cost of separating the stem cells that is expensive.  Because I was sounding hesitant they offered me a chance to come down and look at their facility and meet their people etc. and we were setting it up and she was to call me back to confirm a date that she couldn't do that day, but I heard no more from her.  If the day comes that I am desperately worse I would consider it only if I heard positive results from more people who have had it done.

6

Debra,

I'm the one the others have mentioned having Stem Cell Treatment.

I had the treatment done in late December, I live in the states.  The place I had it done was the Lung Institute. They have clinics in Nashville, Pittsburg, Tampa and one in the south west.  Since it is still concidered research, I had to pay out of pocket ($12,000). So my husband and I had to think long and hard before committing to having the treatment. We decided it was worth it to try. I am at the 3 month after period, so going forward, I should be feeling, if not better, not worse.

Before treatment, I sat in on a webinar explaining the treatment and benefit. They remove your own stem cells by way of blood and, a more aggressive, bone marrow (which I choose). Then they remove the stem cells and reintroduce them back into your system.  The result should be that the extra amount of stem cells migrate to the damaged issues in the lungs and start to repare the damage.  It won't help with the weakening of the airway walls, which is a sign of Bronchiectasis, but it should improve lung function and help reduce infections.

I was also told to take certain supplements to help with the stem cell growth, which is out of pocket costs.

In this day of modern medicial technology, I'm hearing more and more about stem cell use.  The Lung Institute having been doing this for only 3 years, so it's long term results are unknown.

Go online to The Lung Institute and check it out.

Another thing, since being a part of this forum, I have learned a lot on how other people deal with this hateful disease. As a result,

I Had my specialist put me on a long term low dosage antibiotic, Azithromycin.

I take Manuka Honey every day (antibiotic properties)

I take 1,000 mg of Turmeric (with pepper) twice a day (anti inflammatory proerties)

Do posturing exercises, every day to help drain my lungs.

I've even been to the Mayo Clinic in Rochester, the doctor there told me about doing the posturing exercises, use a flutter valve and use a nasal rinse every day.

I also have a nebulizer and percussion vest that I use 3 times daily.

Sorry this is so long, but you will learn a lot from this website,  Beth

7

Hi Debi,

I have had Brochiectasis for around 60+ years. I got it after having pneumonia as a 3 year old. I also have pseudamonas which I picked up while visiting someone in hospital about 12 years ago. It always lays dormant until you get a bit rundown then it rears its ugly head. The best thing I find is to try and keep really fit. I am a motor mechanic with my own business, so I am up and down under cars all day long. That helps me to keep getting rid of the mucous pretty well. The other thing I have found is that alternate treatments are much better for you than antibiotics. Sometimes we just have to have them, but not many of them work for me anymore unfortunately. I have found a great Naturopath who works on my immune system. The last time I had a cold I was able to fight it off in a week without it going to my lungs and that is unheard of for me. So I swear by the mixture he has given me and I only take it twice a day now. If you can do some form of work or exercise that makes you sweat it helps to get rid of the toxins as well. So try and stay positive Debi and don't let it rule your life if you can help. It is not easy I know, especially when there is no real treatment out there for us.

Stay well.

Max

8

Hi, Max,

Listening to you and others on this site I have just made an appt. with an Immunologist and have an appt. for tomorrow!!  I really hadn't thought about going to an Immunologist before as I'd been tested prev. for 4 things and 2 were a little low but nothing to be concerned about but that was 4 years ago - and this man is also an allergy and asthma specialist and I have both of those and COPD and BX and boy of boy I guess that got them excited to be able to fit me in right away and she said the Dr. loves to talk and will get my history at the appt and I don't have to bring anything.  That is quite different sounding from most appts around here where the doctors don't love to talk. 

It's nice to hear too that you also prefer the natural way.

One thing I'm curious about - how did u get dxd at 3? Did they do a CT for something else and discover BX or did they suspect that you might develop it later because of your illness at 3?  I had lung abscess & pneumonia in the 50s but wasn't told of potential damage although I wish I had been!  and I might not have started smoking at 16 (Don't worry, I quit eventually at 35 but too late).

I'm also amazed that you can tolerate the 'fragrances' that abound at an auto mechanics' place of work - am I right in thinking that smells do not bother people with BX?  I'm exceptionally sensitive to all chemical smells incl. oil and gas and perfume etc.and I sort of assumed everyone has those issues with respiratory disease but perhaps BX has nothing to do with nasal sensitivity  - COPD is probably more the culprit.

Tabatha

9

Hi Tabatha,

I hope you have great success with the Immunologist tomorrow.

In answer to your questions, I wasn't diagnosed at the age of 3, no, not until I was 31. The problem was that back in the early 50's (in Australia anyway) there wasn't the treatments available for pneumonia that there is today and it never really seemed to clear. I guess that was really when the lung damage initially occurred. I was left with the perpetual cough etc that goes with Bronchiectasis. Another thing that may have contributed, I have since been told by my lung specialist, is that research has shown that back in the 50's Mums' used a white teething powder on their young children, which they believe had a connection to lung damage. Unfortunately my Mum had passed away before I was told about this, so I don't know whether she used it or not.

As for the smells in the workshop: I have to use a mask when I am using chemicals or dealing with anything dusty. The smell of oil or petrol doesn't seem to bother me though.

I do however suffer from sinusitis quite a bit. The other thing that is connected to the lung problem which I haven't seen anyone else mention here is Blepharitis. I continually had ulcers in my eyes and was starting to have to use quite strong antibiotic drops until I started using the Manuka honey eye drops. They have been marvelous. I have only had one ulcer in almost 2 years now and it cleared very quickly with my normal antibiotic drops, not the strong ones.

Have a great day,

Max

10

Thank you, Max, for the well wishes - I'll let u know how it goes tomorrow.(I wrote this a couple of days ago so I'm behind).

They gave me Penicillin in 1952 and that was in Canada.  It saved my life.  they said I would have died if it wasn't for  that - the doctor came rushing over to the house (no kidding!) to bring 'the new drug' and I still remember the 'big' needle.  It must have been that Canada had just gotten the drug since it had been out in England and the States. 'It's Cherry Pink and Apple Blossom White' was playing on the radio.  I'll always remember that song -  I laid in bed very ill barely able to breathe with the radio playing favorites all day long.  After that shot I recovered rapidly.          I guess Australia was further behind.

I don't recall the white powder u refer to either.

I think I've read that Bronchiectasis can affect other parts of the body and you are the first I've heard where you have an issue with that with the eyes.- that's too bad - and Manuka honey eye drops?  Obviously not as gooey as it sounds : )    BTW I'm  ordering some Manuka honey this month thanks to others' suggestions.  I LOVE THIS SITE! Thank you everybody and thanks Max!

11

Hi Max

I am enquiring re my 20 year old daughter who apart from the lung issues, suffers badly from sinusitis. In fact hasn't been able to smell anything in about 3 years.

Her sydney lung specialist has removed her from steroids ( which helped but had serious consequences for a young person) and she is on ongoing antibiotics for their anti-inflammatory properties rather than the antibiotic properties.

This has helped her lungs, but not her sinus. We haven't met the right ENT to help with this. We are in NSW. Have you heard of a clinic/ENT/naturopath that is familiar with sinus as associated with bronchiectasis?

Thanks

12

Etty,  my daughter suffers terribly from sinus and she was going to have surgery years ago that's how bad she was.  For some reason she canceled the surgery - I think she got some ideas from other people and tried them and decided to live with the problem.  Here is what she does which helps

'I take Zyrtec D every day (religiously) and I use an over the counter sinus spray every day.  Any of them are fine…Nasonex, Flonase, etc – they have a small amount of steroids that keep the inflammation down.

I sleep elevated (I have a wedge under my mattress) and if things get really bad, I use a neti pot (saline rinse).'

'Also, my sinus issues end up as migraines (at least a couple of times a week),  so I go through quite a bit of prescription Sumatriptan (generic), but it allows me to function and not be flat on my back all day.'

'I know that others use warm compresses on their face to keep things moving (so to speak)….also warm soup/beverages help and drinking a lot of water is also supposed to help (I don’t drink enough water).'

Perhaps some of these suggestions will help. Also I can tell you that moving to a new location can definitely be the answer - I had terrible sinus problems in Canada but I moved to an entirely different environment more tropical definitely warmer and humid and all sinus problems went away. Since then I've moved again to Florida where it gets colder in winter but still humid in summer and I have post nasal drip but not sinus headaches or sinus infections.

Tabatha

 

 

13

Thank you Tabatha ( and your daughter) . Some of those my daughter does now, & others she will now give a go. Does your daughter have bronchiectasis too? I wish there was a surgery, but her ENT said it wouldn't help. She may try to get another opinion on that. 

Thank you!

14

No, she does not have BX but I do.  I don't think the sinus has anything to do with BX since it's the nose and not the lungs.  At least I know that's the case with me.  However, I suppose all that p.n.drip can go down and get mixed up with the mucus from the lungs.  I know I'm a drippy mess sometimes  You say she's on antibiotics at times, why not give the Vitamin C therapy a try and see if it would work for sinus infections.  It truly has done wonders for me and others I know - it can prevent infection - go to the Vitamin C Foundation discussion forum and read under the topic, General Vitamin C and learn what you can.  Viral infections are easier for Vit. C to get rid of than Bacterial which could require much more.  The worse the illness or infection the more C you can take with no effects like diarrhea.  that's why you start slowly and build up so the body gets adjusted.  

Let us know what you end up doing and the results.  Hopefully your daughter will be doing better from now on.

Tabatha

15

Thank you Tabatha, I will go the Vit C site now. Thanks

16

Hi Etty,

I am sorry to hear that your daughter is suffering so much with sinus. I know what it is like and not very pleasant. I don't know whereabouts in NSW you are but I see a naturopath in New Lambton who is very good. I haven't had a look at the Vit C site but I am a big believer in vitamins and in particular powdered C. I will be seeing an ENT guy late next month, will let you know how I go.

Cheers,

Max

17

Tabs, it's Russell. Last we comunicated a hurricane was bearing down on you there in Fla, But sit eem to go off shore so maybe you were ok?

About the changes in locality I found when I went out to visit my niece for TG  in Portland ORE. alot of my sysmtoms went away even tough I was only there for three days. And the symtoms did not return for about a  month after coming back home.  I even caught a cold while I was there. So is it not so much moving  from a colder climate to a warmer but really a change in the "triggers"? 

Anyway glad to be back in touch.

R

18

Hi, Russell, yes, we were fine with the hurricane.  I don't think it bothered us at all - just light wind on the west coast.  We did lose two heavy enormous oak trees tho later from a strong wind and rain one night.  Heavy vines that the wind couldn't get thru pulled the trees right out of the ground and two thinner trees got broken off and we had one heck of a mess in the cul-du-sac for weeks until we found someone to clean it up.

Of course you're right about 'triggers'. And different locatons could affect people differently.  I know when I visit out west in September where it's dry I have no problems whatsoever with anything.  But the cold winters there might give me sinusitis.

But hopefully Etty's daughted will understand that it may not always be that way and if she should move one day she may not have the same issues.  

By the way, I'm really happy to hear that Max is a big believer in the powdered Vitamin C - how are you doing with that, Russell?  Last we talked you were trying it but you were also still taking the antibiotics so I feared that you could never get a true result.  Did you ever get to the point where you stopped the antibiotics and just took the Vitamin C for several weeks/months alone?  That would be the goal - to just elminate the drugs and trust in the Vit. C and take enough to do the job.

I'm still infection free even tho I have the same frustrations many BX patients do with so much gagging and congestion and feeling worse some days than others but then feeling better once I get the mucous up. Along with all my vitamins and C I do focus a lot on hot teas and ginger tea and blackberry tea to loosen things up (I tell myself).

Tabatha

19

Hi,

Wonder if you have updated your success with stem cell therapy.  I just scheduled mine for mid February.  I have COPD, med's not working, and infecttions keep coming.  I sure hope you've had great success with the stem cell therapy.

20

Hi Tabatha! Debi here. I was reading dialog between you and Russ and realized it sounds like you live in Florida. I have lived in NE PA for my whole 50 years. I am seriously thinking about relocating to Florida (probably anywhere from Orlando to Sebastian. I cannot tolerate the cold. I was thinking the humidity may keep stuff loose (BX, bronch & asthma). Plus I had hoped for better access to fresher, healthy foods. Vitamin C really seems to be helping. Do you notice a difference if you travel to colder or snowy places? Thanks for any input!