Hi I've been recently diagnosised with Alpha 1. I have had severe asthma for 5 yrs. I waited 2 months to get in. The allergist told me it looked like I had emphysema. The pulmonary told me I had asthma. Now I'm going back to the allergist. 6 months l

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Hi I've been recently diagnosised with Alpha 1. I have had severe asthma for 5 yrs. I waited 2 months to get in. The allergist told me it looked like I had emphysema. The pulmonary told me I had asthma. Now I'm going back to the allergist. 6 months later. My lungs will deteroate up to 15% s year without augmentation therapy. But my insurance will not cover because I have asthma and not emphysema. I get to die young because I don't have the right disease to save my lungs.Judy

Well most primary care Dr's are not hard to get into, but, it is the specialists, some of them. I waited 6 months for a rheumatologist, and then they messed up the appointment. So I am looking for another one, I feel my time is just as important as theirs. It seems to be getting harder and harder to see certain specialists. With all the new health laws some of the Dr.s are being really picky about what insurers they will work with. I have pretty much been lucky gettin Dr.s but, things are changing, I have been looking for awhile now for two specialists, and so far no luck. To: asthma Sent: Tuesday, February 21, 2012 3:32 PM Subject: Re: Doctors my wish

If we need one of them we get referred by the doctor. Some areas are better than others - where I went to uni I had to wait months to see a rheumatologist and an orthapaedic person, whereas where I live now waiting lists are a lot better (having said that where I used to live there was a 3 week waiting list just to see a GP). Where you get sent again depends where you live. In my area they are starting to get more services into the smaller hospitals which is good as you don't have to pay parking there - I did complain about having to pay £2 to park for a blood testJennTha can tek t'lass outta Yorkshire...! Don't brand me, don't classify me, don't tell me what to wear. I'll be who I want to be, and I'm proud to be me.Subject: Re: Doctors my wishTo: "asthma " <asthma >Date: Tuesday, 21 February, 2012, 21:14

That is a really good idea about all of them in one place, they are trying to go toward something like that around here, but, not much happening. To: "asthma " <asthma > Sent: Tuesday, February 21, 2012 3:13 PM Subject: Re: Doctors my wish

Just like many of you I am having so many problems with one dr saying something and then the other one saying something else. It is confusing. Quit honestly I have found lots of people called drs who I wonder why they gave them a license. In a perfect world there would be clinics that would have many doctors for most areas. Allergist & Asthma, immunologist, internist, ob gyn, uro, gp, ENT etc. . . . You would intially have consult with GP and they would find what your problems are and have a meeting about you to see what would be best treatment & test. Once you find a group you like you can continue to go there. I needs to be just small enough

though. Many minds that work together come up with better solutions than just one. This having everyone scattered is wasteful and not in the best interest of the patient. Lynne To: "asthma " <asthma >

Sent: Tuesday, February 21, 2012 1:55 PM Subject: Re: Back to you Slats

Hi Slats, that was a very interesting email. I checked and I am taking the cholecalciferol vit.D3 and 1,000 IU dose daily.

My immune system has been destroyed by a life time on prednisolone, so much so that the Professor said the IgG's etc were virtually non-existent! The Vivaglobin treatment I was suffering was in plain English, an anti-body replacement therapy in which the IgG's were boosted.

My immunologist is great at her job treating allergies and immune deficiencies but has absolutely no understanding of respiratory conditions, even though the majority of her patients have respiratory concerns! For heaven's sake, she didn't even know what a Ventolin inhaler was! The Ventolin (or Salbutamol or albuterol) is the most commonly used relief inhaler in the UK!

At one point she even suggested giving me more IgE's! Just what an asthmatic wants to hear, you're gonna be dosed up with more of the anti-bodies that can actually increase asthma! Silly cow!

Anyway, after about 5 months of treatment I received a letter from her telling me not to worry, but research in the USA had found that Vivaglobin could kill! It could also give one HIV, Hep.B, CJD and other assorted nasty and fatal diseases! But she insisted, in her opinion I should continue with the treatment.

I went to see my Cornish respiratory consultant who advised me to stop the Vivaglobin asap, in his opinion the risks out weighed the benefits and for some one in my knackered condition, the risks were quite high!

My Prof also agreed and it was he that started me on Vit.D but unfortunately he didn't suggest a dose. I settled on 25ug after researching Vit.D on the wed. I have no idea what my Vit.D levels are, getting test results in my part of the world is not as easy as breaking into Fort Knox! All I know is that my IgG levels and overall immune system has improved faster than it did on Vivaglobin without the risk of becoming a mad cow!

I must agree with you that the frequency of my chest infections has improved greatly, before the Vit.D I was having recurring bouts of pneumonia and/or H.influenza at least once a month! Now it's only two or three times a year, so a great improvement there. Unfortunately I am immune to the pneumonia vaccinations, about the only damn thing I am immune to!

I'm due to the the Prof in April so I'll discuss the dosage of Vit.D with him, most Dr's here in Britain's big toe still think all natural remedies are an evil propaganda set out by the Druids! To have a vitamin that does actually work in improving a disease is unheard of as far as they are concerned.

So thanks for the info, I will check out those sites and have a read.

Cheers from Mike (Chip) Chapman

Cornwall. UK

To: asthma Sent: Tuesday, 21 February 2012, 16:00Subject: Re: Asthma questions Lynne2

Hi Chip,You may not be getting near enough Vitamin D in your 25 mcg to do you much good. This is especially true considering where you live. (I'm assuming it's Vitamin D3 (cholecalciferol) that you're taking, not Vitamin D2 (ergocalciferol).) In the US we don't measure Vitamin D in micrograms, but in IUs (International Units). Your dose of 25 mcg is equivalent to 1000 IU. That is more like a "maintenance" diose than a "corrective" dose.http://www.robert-forbes.com/resources/vitaminconverter.html Vitamin D3 is a hormone-like vitamin in that it is a "steroid vitamin" and effects organs and body systems in ways more like hormones do than like vitamins do. It is required for absorption of calcium and phosphorous; it regulates and strengthens the immune system; it can reduce the severity and frequency of asthma attacks and help keep

asthma patients out of the hospital; it can help us get to and maintain a healthy weight; and it makes us less likely to develop cancer. It's really pretty much a miracle vitamin.http://www.medicalnewstoday.com/articles/161618.php Children and young adults are able to synthesize enough Vitamin D3 in their skin from sunlight, but as we age we gradually lose that ability so that by the time we are 80 we can no longer make Vitamin D3 in our skin. It is available as a supplement only from animal sources, particular fish liver oils, with cod liver oil being the single richest source. Most Vitamin D3 supplements, including the one I take, are obtained from lanolin after it is washed from sheep's wool. It is a fat soluble vitamin and what we don't use on a daily basis is stored in our body fat.I take a dose five times the size of yours, 5000 IU

daily. Doses of 10,000 IU have been found safe and beneficial for adult humans. You would probably be on entirely safe ground to increase your dose considerably. In the US we usually are tested for our Vitamin D3 levels before deciding whether to supplement D3 and by how much. The normal range for the test my doctor orders is 30 - 100, but most of our doctors feel 30 is way too low for optimum health. My doctor wants my number at least at 60 and preferably at 80 or higher.Slats>> Hi Lynne, regarding your immune system, or lack of it! My immune system disappeared a while ago and I was given a treatment called Vivaglobin. This had to be injected via pump into the floppier bits of my belly with each

infusion taking

one

hour to complete. I inserted two needles first, one in each side of my stomach (with only a few tears!), before inserting the last when one of the other pumps had finished. I needed three infusions but only had two pumps.> It was not the most pleasant treatment and I had to put aside one full morning a week, I chose Tuesdays, to undertake this masochistic treatment, a day I soon learnt to hate! Once the needles were in and the pumps attached, I could carry on with minor chores as straps were provided to hang the pumps around ones neck. I looked like an electronic medallion man!>  > I suffered this for 5 months before one of my consultants, an eminent professor informed me that recent research had concluded that daily doses of vitamin D would do just as well! I stopped my weekly pin cushion practise and gave the vitamin D a try. Lo & behold not only did I improve but my immunity

levels increased to almost normal!> Vitamin D is becoming widely recognised as the best and safest form of treatment for immune deficiencies, there is plenty of information list on the web. I take 25 mcg (micrograms) per day, one pill popped with my evening meal and that works for me. Others I know of take larger or smaller doses depending on their metabolism, condition and other requi