 |
| Author | Post |
|---|
andy1968
Member
| Joined: | Wed May 6th, 2009 |
| Location: | |
| Posts: | 7 |
| Status: |
Offline
|
|
Posted: Mon Jul 6th, 2009 10:59 |
|
Hi,
I'm getting very concerned about the Swine Flu headlines, everybody that seems to be dying from the desease also seems to be suffering from other underlying health problems, a 42 year old gentleman died nearby this week in Christchurch from Swine Flu and he also had a lung desease. Does anybody know how much more at risk Sarcoidosis sufferers are from becoming seriously Ill by catching Swine Flu?????.
Andy
|
Kas
Member
|
Posted: Wed Jul 8th, 2009 21:50 |
|
I woud not panic.
It does not appear that one person on the MP has contracted swine flu, so perhaps because our innate immune systems are awakened and working, we will have some protection.
Having said that, just take all the usual precautions - stay away from sick folk, if possible, wash your hands well and frequently and sneeze or cough into a sleeve, tissue etc and encourage those around you to do the same. Eat healthily and get enough water and rest.
Unless you wrap yourself up in cotton wool and isolate yourself indefinitely, you just have to take your chances here like everyone else and hope that you do not get sick. If a shot against this type of flu does come out, perhaps you should consider the risk/ benefit ratio for yourself and have it.
I have systemic sarc, with lung involvement, I have not had a flu shot for two years, work in a high - risk environment ( large, old high school), and on the MP, have not had a sick day for colds or flus. I firmly believe that the MP will keep us as well as we can be.
Carry on living and don't make this something you constantly worry about.
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
|
andy1968
Member
| Joined: | Wed May 6th, 2009 |
| Location: | |
| Posts: | 7 |
| Status: |
Offline
|
|
Posted: Wed Jul 8th, 2009 22:58 |
|
Hi Kas,
I'm currently not on MP as I am still going through the research stage, I was diagnosed with Sarcoidosis 18 months ago due to catching Pneumonia, I currently suffer from constant Lung pains,sleepless sweaty nights and a mild shortness of breath so nothing too serious yet. I have every intention of starting MP but i just want to do the ground work first to make sure I know exactly what I'm getting myself into.
I know the longer I leave it the worse the decease is going to get to me but I feel that being a relatively fit 40 year old I don't want my 5 year old daughter to see the state that I could possibly get into with MP as it might upset her.
I know what everyone say's "living a comfortable life in 3 - 5 Years is more inportant" but I have a really close relationship with my daughter and it would break my heart and hers if she saw me suffering.
As for the swine Flu, I just worry because everyone who dies always seems to be suffering from underlying health problems,but thanks for your comforting thoughts.
Take care Kas 
|
Kas
Member
|
Posted: Wed Jul 8th, 2009 23:20 |
|
Hi Andy,
I understand your not wanting your daughter seeing you suffer the IP's of the MP, but if you leave your sarc untreated, or go the conventional route of steroids, she is going to see a lot more suffering and disability later in her young life.
She is still very young, but also old enough to know that her daddy is doing something which will ultimately get him well enough not to have the pains and breathlessness etc. Children adapt very quickly to new situations if they care carefully explained, and she will get used to living with you on the MP and have you. but a better you, around for long and healthier years.
Good luck with whatever decision you reach and stay well,
Kas
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
|
andy1968
Member
| Joined: | Wed May 6th, 2009 |
| Location: | |
| Posts: | 7 |
| Status: |
Offline
|
|
Posted: Wed Jul 8th, 2009 23:54 |
|
Evening Kas,
Over hear in New Zealand Sarcoidosis is not widely known so finding a doctor who would be willing to support me through the process of MP ( I now have a local Doctors name who I will contact nearer the time).
I've just read my last post and it seems like I used my daughter as an excuse, I really want to start the MP but I am afraid of the impact it will have on my family and career, I know I shouldn't be thinking like this but I suppose thats down to the fact I'm not suffering yet.
How long have you been on MP?, is it working for you?, are you starting to feel any benefits yet?.
Thanks for talking about this as I find it very difficult to talk to my wife, I don't want to worry her until I get all of the facts first, I haven't really told her much about the sarcoidosis as she would only worry.
Kind Regards Andy
|
Kas
Member
|
Posted: Thu Jul 9th, 2009 01:03 |
|
Hi Andy,
Sarcoidosis is a chronic disease and it is not going to go away on its own. It may stabilise, but it may also progress if the bacteria causing it are permitted to proliferate. Leaving it alone and hoping it will just go away, is akin to having cancer, not undergoing treatment and praying that it will miraculously be cured. The longer you leave it, the harder it will be to treat.
This isn't a nothing disease, and you need to be frank and forthright with your wife. Together, you need to educate yourselves as fully as you can about the illness and your options here. Keeping her in the dark will ultimately prove to be more detrimental to her and your family than allowing her to be a partner in your treatment and road to better health. Your wife will be more worried if she does not understand what you are going through. A problem shared, is a problem halved.
I have been on the MP extremely slowly and with many ups and downs for over two years full- time now. I was briefly on it back in 2004, when it was still pretty new, and had trouble convincing my doc to allow me to stay on it for various reasons. Have I improved - well, I would like to think so, although I suffer really bad IP's with my kidneys and liver and low BP, which makes my progress very slow. I still totally believe that it is the only viable treatment and refuse to be pumped with steroids, which never cure anyone and are merely a band aid with way too many side- effects. So, I plod along as best I can, and I know that this may take years in my case or even forever, but heck, I work, I lead a pretty normal, if sun and light limited life, without D foods. I hold down a job, I run a home, I am a wife and mother and my family has learned to live with my choice to do the MP. I walk in the evenings when I am up to it and I have learned to rest and respect my body when it tells me it is having a tough time of things. My hardest part, has been to get my doc to accept abnormal test results constantly and to go against the grain about everything she learned in med school about my super low BP. especially.
The MP is not a walk in the park, but neither is having sarc. Only you can decide which path you wish to travel and you need to be reading up as much as you can on the site here and discussing it with your doctors. If you do make the decision to go ahead, know that it is not a quick fix, that it will change your life style, that it will be slow and hard at times, and that you need to understand the science behind it and be committed to working through the IP's when they hit.
Follow your heart and do what you feel is right for you and your family, but do look at the long- term, big picture.
Best of luck,
Kas
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
|
andy1968
Member
| Joined: | Wed May 6th, 2009 |
| Location: | |
| Posts: | 7 |
| Status: |
Offline
|
|
Posted: Thu Jul 9th, 2009 02:02 |
|
Kas,
Thanks for your wise words, I have pretty much made up my mind that I will be going ahead with MP, I just need to pluck up the courage because I know it's long term and the family will be affected greatly during this period.
You've convinced me to contact our local doctor who is familiar with MP and to see if they are prepared to work with me.
I will also show this site to my wife tonight so that she can get a better understanding of what is happening and what is likely to happen once I start.
Again thanks for your words of experience and I hope that if I have any further questions I can talk to you via this site.
Kind Regards Andy
|
Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 556 |
| Status: |
Offline
|
|
Posted: Sun Jul 12th, 2009 16:00 |
|
Andy,
Thanks for talking about this as I find it very difficult to talk to my wife, I don't want to worry her until I get all of the facts first, I haven't really told her much about the sarcoidosis as she would only worry.
Please read the page on familial aggregation before you talk to your wife. You cannot shield your family by keeping them in the dark.
-- Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
| Status: |
Offline
|
|
Posted: Thu Jul 16th, 2009 05:22 |
|
Hi Andy.
Sometimes reading someone else's story helps clarify where you are at yourself.
Here is a story that might do that for you: Interview with Guss Wilkinson – Sarcoidosis, psoriasis, insomnia.
You are on the right path by researching and learning for yourself what it's going to take to fight for your life and your longevity.
And, best of all, there is a whole community here to provide social support as you go along.
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
matthew.gatenby
Member
| Joined: | Wed Feb 4th, 2009 |
| Location: | Australia |
| Posts: | 292 |
| Status: |
Offline
|
|
Posted: Fri Jul 17th, 2009 06:00 |
|
About the swine flu ...
there are sosme previous posts about this topic have a look..
basically .... you are in the situation you are in.. obviously use good hygine and try not to catch it but as eventuality is .. you will either get it or make it to the immunisation.
i am concerned about it and here is my findings
when a person is introduced to a virus they have never experienced
they are actually usally more endangered by what is known as a cykotine storm
this is where a over active response happens from the immune system rushing to the lungs to expel the virus but actually damaging and flooding the lungs.
apart from that it is often a bacterial infection that results in death , this was the case for most deaths in the spanish influenza. i.e. pnumonia
so it is not a good time to be to healthy , joke...
what you have with the mp is benicar/olmetec .. in the family of arb's and ace inhibitors doctors are actually using these drugs to dampen cykotine storms for influenza paitents ... your already using this ..
secondly
one of the most common antibiotics used to treat lung infections is azythromicin.
pnumonia was studied in sarcoidosis patients and found to be more common in long term steroid use , as with any steroid use paitent.
otherwise sarcoidosis showed not to increase your chances of aquisition. (statistcally)
so the mp puts you in a better position imo than any other situation with what you have.
will you come out ok .. all we can do is hope.
i had the flu a few weeks ago .. was not tested for the swine flu ran a mild temp and was unwell for a few days .. deing in western sydney there was a chance i had it or if i havent will get it before you...
as we have the most cases in the world ...
so when i get it i will let you know how it was .
in addition there is no report of a death in a patient with sarcoidosis ... (not that this information is too detailed)
there was one report of paitent that had an antiviral resistant form of h1n1 and sarcoidosis ... he was in his 40-50's admitted to hospital recovered in 10 days. and that was a resitant variant .. the only reason he was admintted was because of the fever as it seems ..
i know it does not sound good but it was a resitant variant .
Last edited on Fri Jul 17th, 2009 09:44 by matthew.gatenby
|
Kitty
Member
|
Posted: Sat Jul 18th, 2009 14:46 |
|
Matthew,
Thanks for the info on the swine flu, I have had moments of concern but am trying not to get in a tizzy about something that may never affect me, my spouse said one of the guys at his shop came to work for 2 hours and then told everyone he may have swine flu, it is closer than I thought however Canada does not have many cases so I worry when something is dx.
Andy,
Everyone reacts different on the MP and to lyme disease, I have some similar symptoms to others, but am able to work every day cleaning 2 or 3 houses every day. I had a tick in 1976 and started having health issues. Dx. with Rocky Mountain Spotted Fever and Bartonella, I have managed to work for the last 33 years, the last 5 have been very challenging to get out of bed but I push forward and I have missed only a few days over the years. I saw my first doctor that knew how to treat lyme in 2006 and I was at the bottom of a very steep hill having mobility problems but still pushing myself to work. I have improved energy and strength since then and no longer feel as though I am made of lead, my fatigue was extreme. I understand your concerns about your daughter, however, in order to be there for her in the future, you must look after yourself. Parents are made to feel selfish when nurturing themselves. This is the most generous gift you can give your daughter, your presence in her life in the future. I lost my dad when I was 18 to cancer, I wish everyday he was here, and would have supported him if there would have been something he could have done to live. Sometimes a parents job as a good dad is to turn inward and monitor his own health. That is not only necessary but also what we all have had to do. I was raised to ignore my health and think all would be well. I saw the tick under my skin, went to the doctor when I was 16 years old, the tick was gone and he had no clue and I just went on with my life with out worry. Now 49 years old, I have reason to worry, what damage has been done while my head was buried in the sand?
Self Nurturing is not selfish!! If somebody tells you it is, send them my way!! 
I will totally tune them in for you!
____________________
New to the MP. allergy and asthma symptoms gone since starting treatment in 06. on phase 2. pos. for bart and RMSF. Noirs since Sept when I started MP. vit.D-20n/ml, D125-34.6. Paresthesia, asthenia, sarcoidosis.
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
| Status: |
Offline
|
|
Posted: Wed Aug 19th, 2009 11:20 |
|
Recent news:
Swine Flu Vaccine Linked to Killer Nerve Disease - London Telegraph
A warning that the new swine flu jab is linked to a deadly nerve disease has been sent by the Government to senior neurologists in a confidential letter.
It tells the neurologists that they must be alert for an increase in a brain disorder called Guillain-Barre Syndrome (GBS), which could be triggered by the vaccine. GBS attacks the lining of the nerves, causing paralysis and inability to breathe, and can be fatal.
Does the Marshall Pathogenesis help make sense of this report?
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
Kas
Member
|
Posted: Wed Aug 19th, 2009 13:06 |
|
I have signed up to be part of a study in Ontario for high risk individuals from all demographics, to see if you have antibodies to H1NI flu. Given my age (54), it is probable that I have been exposed to many flu viruses. If the test ( blood and saliva) shows that I do indeed have antibodies, then I feel it will be totally unnecessary to even consider the flu vaccine. I will let you know what the results are when I hear them.
All the previous flu vaccines also carried warnings for GBS, and every year a small number of people do get it, but it will be argued by doctors that the benefit far outweighs the risk, especially in high risk folk.
Here in Canada, they are predicting a much more severe flu, due to the virus mutating, over the winter months. They are urging everyone, and especially people like me, who work in a high risk profession and have 'other underlying health' issues, to ensure they are vaccinated.
This is always a dilemma, isn't it?
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
|
Alejandro
Member
| Joined: | Mon Nov 17th, 2008 |
| Location: | Germany |
| Posts: | 53 |
| Status: |
Offline
|
|
Posted: Thu Aug 20th, 2009 13:58 |
|
You can take a look to the recommendation of the Vitamin D Council in their newsletter:
I recommend 2,000 IU per day per kilogram of body weight (which is about 1,000 IU per day for every pound of body weight) for three days at the first sign of influenza. While there are no randomized controlled trials showing it will help, there is a randomized controlled trial showing such doses will not hurt.
So they talk about around half million I.E. Vitamin D in three days.
Interesting comment "while there are NO randomized controlled trials showing it will help.."
Kind regards,
Alex
PS: I hope you will NOT follow the advice of the council Last edited on Thu Aug 20th, 2009 14:00 by Alejandro
____________________
-------------------
Skin Sarcoidosis treated with Corticoid creme 1,25 D3 : 41 pg/ml (was 63) 25 D : 10 ng/ml (was 22)
In MP since Dec 2009
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
| Status: |
Offline
|
|
Posted: Thu Aug 20th, 2009 23:49 |
|
CAUTION: heavy sarcasm ahead *not my usual attitude, but this is upsetting*
I guess what the Vitamin D council is saying is...
We like to think it is a good idea...
... and no one says it isn't a good idea
... therefore, it is a good idea
... based on our hope
... that it is a good idea!
Well, I have another idea...
If you give someone a slow acting, systemic poison
(such as high dose vitamin D in rat poison)
and they don't drop dead today,
then
I propose they will never drop dead from their daily dose of poison.
Or at least, I don't think they will.
So, since I don't think they will,
I am sure they won't.
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 334 |
| Status: |
Offline
|
|
Posted: Fri Aug 21st, 2009 01:49 |
|
the vitamin dinosaurs sure do not give random counsel, what a bunch of fish oil salesmen 
For something that is not even a vitamin such doses will not hurt someone's profits, un-natural as it would appear to anyone but a sun-worshipper. (What did the bible say about false idols?) OMG
____________________
Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
|
Leroybrown
Member
|
Posted: Sat Aug 22nd, 2009 14:57 |
|
Andy,
My 2 cents - My dad died of sarc and had it since I was 3. I saw him slowly go downhill over the years and not be able to do any physical activities, and end up merely existing instead of living life. Get yourself better - your daughter should not have to see you suffer on prednisone all your life and die at an early age.
____________________
Autoimmune Pure Red Cell Aplasia, Jan 2009 * hgb: 82, wbc 1.5
Phase 1: Sept 25/09
25D=25 1,25D=58 Aug 18/09
benicar 40mg q6hrs
|
Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 556 |
| Status: |
Offline
|
|
Posted: Sun Aug 23rd, 2009 17:31 |
|
Andy wrote:
I know what everyone say's "living a comfortable life in 3 - 5 Years is more inportant" but I have a really close relationship with my daughter and it would break my heart and hers if she saw me suffering.
Andy, at least she will see you. If it's really that close, she probably notices that you aren't at your peak right now. Do you really think a long spell of sleepless nights has no effect visible to others?
It gets harder later, and you really do want to go to her wedding.
Been there, done that, and really would have missed meeting my grandkids.
Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
|
Rico
Moderator
| Joined: | Wed Oct 17th, 2007 |
| Location: | |
| Posts: | 308 |
| Status: |
Online
|
|
Posted: Thu Mar 11th, 2010 16:35 |
|
Flu shots futile
New doubts over Tamiflu
The Cochrane Study
____________________
MP Knowledge Base; Bacteriality; Success Stories; Dr Marshall's Perspective
|
Kas
Member
|
Posted: Thu Mar 11th, 2010 20:20 |
|
Well, I made the decision to avoid all flu shots again this past winter, and again, I am very glad I did so. Despite having no spleen, and working in a high - risk environment ( large, old high school), and travelling in peak flu season to Australia for a family affair, I have not even caught as much as a cold. I went from extreme heat and humidity in Sydney to the cold of Toronto, and all is still well, thankfully. The minute the temp dropped a bit in Sydney, all our family got sick with colds etc, and I was fine.
At present, I am taking only benicar Q6H ( although I will soon be adding a small amount of abx soon, hopefully), and I am totally convinced that the benicar is what is doing the trick for me.
Perhaps we should just put everyone onto Benicar, and we could do away with flu shots, tamiflu etc!!! I have been taking benicar for three years straight now, and the way it works for me, I may well remain on it for life!
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
|
Current time is 11:26 | Page: 1 2   |
|
|
|
|
