Stem Cell Therapy

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.

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

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

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!

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

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

 

 

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!

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

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

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

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

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

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!

Debra,

The only way I can answer that and I'm almost embarrassed about it, is that I avoid going to cold places when it's cold.

For example:  My son asked us on a cruise to Alaska and at first I said no but I mentioned it to my dr. and he said 'go and enjoy life'.  then I asked a bag boy at the grocery store who said he had lived up there and he said 'you don't want to go there the cold would be terrible for you with COPD'. I asked him how he knew about COPD and he said he was a paramedic up there.  So I went on the cruise but I did not get off the ship at Juneau in the cold rain. Another port we got off was pretty fair and I walked thru the town and had no issues at all.  just like being in Florida in the winter.  A recent December trip to Alabama in the low 40s at night didn't bother me but I was only there 4 days and mostly inside or in the car. I lived in Alabama for 17 years and had severe hay fever in the country but now it's built up with civilization and in the same area this last trip I had no problem (the ragweed was gone). I made sure I had a scarf and bundled up if necessary.The trip out west I'd referred to before was in October in Las Vegas and it was still nice and no problems at all.  I did not go to Toronto in a bad snowstorm one January because if I caught a germ (my immune system apparently lacks something) I would be susceptible to pneumonia which I've had several times.  Toronto is where I lived and had acute sinusitis prior to moving to that tropical location I'd mentioned where all my ailments went away.  That was Bermuda and I think anyone's ailments would go away there.  Surrounded by salt water too, can't be bad.

When we have planned timeshare vacations it's always been to a warm place or to a ski resort in the summer like Gatlinburg or Colorado in the summer etc.  we used to go to ski areas in the winter and sit by the fireplace and watch the skiiers but then the smell of the fire bothered me so we had to stop doing that too. We don't go anywhere in the winter if it's a very cold place.

Re your comment about fresher healthier foods - maybe u mean fresh caught fish etc. and I suppose that could be true and we have health food stores but don't u have them in PA?

You must have vacationed in Sebastian??  How do u know about it?  We spent a wonderful vacation there at a resort on the Intercoastal. Oyster Bay. We went again to check it out last year just driving thru from Vero Beach and found a wonderful restaurant with the best lobster bisque I've ever had, right there in Sebastian - it's nice over there in that area you mention.  On the coast.  We are still encouraged to eat Organic so not sure about food quality in Florida but just plain living here is great. We have a French neighbor and she says she can't find a restaurant that has good food.  I have no problem with food in Florida so it's a personal thing I guess. Summers are tremendously humid and I do feel as if I'm choking on humidity and smells from things bother me more in the wet heat.  If you keep the outside of the house clear of black moldy looking pathways or stepping stones after torrential rains and get a house that sits in the sun and not in the woods like ours, you'd do fine. 

I guess you have taken a trip to that area before making a definite plan to move. Stay in the spring or summer in pollen season, which is the time you might experience problems to see if your sensitivities react. - I've been up and down that coast and have no problems near the water.

 One good thing is that Florida has 'no smoking' in restaurants.

Gosh, I do go on and on---

Tabs

Great Scott!! You had more damage than I thought you might have. Glad you were all safe. I remember something that goes along with big storms is they seam to clear the air for a few days, so I dont know if you noticed any change in your respiratory environment back then?.

Interesting how people are looking more closely at Sten Cell rejuvenation. It seems to have some promise from what I have read and should get better with time if it truly helps. Glad to have backups.

We had a couple days of freezing weather, but a nice balmy 75 today.

My freind Tonia and I finished a Level ! script writing class since last we talked and had actors do our scripts. It was amaqzing. Tons of laughter all around.

My dog, John Lennon is doing just great. In the last scene from "Marley and Me" when Owen Wilson's character is talking about people's relatioships to their dogs says "if you give them you heart, they will give you their's".

That's what has happened. We exchaged hearts.

As far as my old freind BX, I have been doing well, excet for a little more congestion in the last week or so. Using my neb. and Nasal Lavage that helps. Since reading your letter I have decided to give VIT C another chance and stay on it for a month to begin with.Advise me to a different lenght if necessary. Will keep you posted. I forgot, our back alleyway were finally paved last month and is "smooth as butta".

Best x 1000

Russ

Russ

 

OK, Russell,

As requested, I'm advising a different length of time.  MORE THAN A MONTH.  I don't know what you ended up with I think u told me you were at 2500 mg ?  I doesn't matter - whatever you were on get on the same amount and increase it 500 mg ev. day or so and do that until your body tells you that's enough.  there are no side effects other than the D affect. So you back up 500 mg for a day or two and let the body get used to that amount.  You don't have to increase too quickly unless you are having infection or get a cold or something.  I moved up quicky to 8000 a day with no problem and I can jump from 2500 to 5000 in two days and up to 8000 with no problems at all.  I have not gone higher and haven't been ill with anything so in my mind I'm good at 8000.  Read some info on that website I mentioned (the C foundation) and see what others tell you. Some people who have been really sick know much more about it than me. Don't be afraid of it, Russell, it's like a friend when you're in need.  It's not a drug at all but a beneficial vitamin. But if you stop it you won't have any advantage at all and you'll get another infection and be back on antiobiotics again and think the Vitamin C failed you. The idea is keep on it and get off the drug and see if you DON'T get infection.  If you do then INCREASE the dosage - also I recall you were looking into that doctor who gives the IVs.  What happened there?  Becuse that may be your best introduction to a good plan.

Glad you're having fun in life with your comedy show and that script writing class sounds like a hoot.  I should get my neighbors together -----

Tabatha.

Hi I stumbled across this post I'm 24 and have bronchiectasis but also suffered from sinus problems after seeing a ENT consultant he said he could see no issues ! However my sinuses do flare up and the post nasal drip makes my chest worse ! I swear by a saline solution it's salt water with magnesium, which is sprayed into the nostril and relieves symptoms immediately especially if you feel a flu virus starting !

Hi, gsoal,   I've written u a private message to get the name of that spray.

You can't give it here I don't think.

I swear by Magnesium - it's great for inflammation and I'd not heard of a spray with that in it so that's worth a try for me with my p.n.drip at night.

I had a swollen ankle which resolved itself with magnesium soaks (Epsom Salts)  I wonder if THAT could be inhaled or nebbed or sprayed.

I'll go and read my bag right now!

Tabatha

Thanks Max. She has been to respiratory specialists, ENT, allergists, immunologists , but havent tried a naturopath. We may have to find someone closer to home though. How did your appt go with ENT?

Hello Tabatha! I wanted to inquire about the quality of doctors you have found in Florida to help manage your lung issues? In PA i have to drive about 2.5 hours to get to mine. He seems ok but I think I learned more on this thread. Another problem with winters (and some spring and fall) is my neighbors (numerous) with wood stoves REALLY make me ill. The suffocating smell of smoke ALL the time! You would think my house was burning down. My house is currently up for sale because I cannot tolerate it any more. I don't mean to be a pest , you were quite helpful!! Thank you for any input you have to offer.

Debra, when I was in Ft.Lauderdale I had an HMO and it was excellent care. All my specialists were great and my primary.  My lung doctor seemed to be very efficient - he examined my nose and throat every visit and took copious notes and told me he wasn't sure of my dx but put it down to asthma at that time. He did CT scan etc. as necessary.  THEN we moved north to a small town and HMOs don't do so well because they don't have the population so therefore no money and care is not so good.  In fact the HMOs pulled out of all the small towns after we moved so I went to the only Pulm. drs in town and I had one who had recently just started to practice therefore he was very efficient and careful.But in the 12 or more years I went to him he never once examined my nose or throat.  I thought that was strange. He gave me far too many CT scans I later found out but he explained things well and dx COPD and BX years later.  I've lost him due to the Affordable Care Act and he had to close up shop as he wasn't making enough money.  I've learned that many doctors here are doing that - they are going to work for the VA here in town or moving to larger cities like Ocala or Gainesville and others I'm sure to work in the hospitals on salary.  It's sad.  A friend worked for a local doctor and she was let go when they closed their office.   So your care will depend on what town you move to. If you are close to Orlando you shouldn't have any problem.  You might want to check out doctors online - they list them for miles around and you probably will have to drive to one you like.  I could go to Ocala but it's an hour away and going to Gainesville is a pain as it's 2 hrs. That's a teaching hospital.  I did that several times when i went to the Mycobacteria specialist up there. BUT NOW HE'S GONE.  Got a letter this year informing me.  They say someone else has taken his place and I suppose if I got in real trouble I might venture up there again.

I think you could call the local Health Dept. and ask them about Pulm. specialists in the area you want to move and get an idea from them. They are who recommended me to the guy in Gainesville otherwise I would never have even thought about going there.  

Otherwise we have LOTS of doctors and walk in clinics around where we live and my neighbors all seem to like the different ones they go to.  It's all personal preference.  I'm not happy with my Pulmo now because he does not mention X-ray or CT or Bronchoscopy and I don't know if it's because I've told him I don't want any X-rays as I've had too much - I intend to ask him and talk about that a bit. He doesn't check nose or throat either - maybe that's not a big issue with BX.  He and his 4 other doctors took over the patients from the doctor I was going to and his partner.  When that happens you might tend to get less time with the 'new' doctor.

We have certain days that you can burn yard trash if there is not a ban on burning. If it's been real dry you can't burn.  But when you CAN burn people do and if you are outside you will quickly go inside and shut the doors and windows.  I'm inside mostly but occasionally I'll smell burning up the road somewhere and come right in.  It doesn't bother me as it is not every day.  At night if I walk and I smell cigarette smoke behind somebody's house (we are close to people's back yards) I cover my nose and mouth and quickly turn around and go home otherwise I have to pass it again going back down the road later.  Same house barbeques too so their charcoal smell bothers me but they play good music!!  I'm sure all this is the same for everyone with these sensitivties.

Oh, I was going to say that I've heard of some good Pulm. doctors in another town south of me about an hour and I have it in mind to visit one day and check out their office - a friend's husband went there and the dr. did a bronchoscopy and cleared out all his mucous and he's been fine since - he was in hospital at the time and apparently very badly off.  I've just never heard of that except on this site and no doctor has mentioned it to me - I think that means I'm not bad enough to warrant that.

So Debra, I'd say you probably would be perfectly fine with good doctors if you are close to Orlando where u have a choice of hospitals and lots of doctors.  I'm kind of interested to know why you picked this area you are looking at between Sebastian.& Orlando.  It sounds like you are looking at being INland and not on the coast?  It would be a lot cheaper inland and much fewer doctors for sure.  They would want to be near the water like most of us would and the closer to a bigger town or city the better for more population.  Driving thru the small inland towns if there are any over on that side I'd think the care you'd want could be pretty sparse.

You are not a pest at all.  I love to help if I can.  Not sure all this info helps since I don't live where u want to move.

Tabatha