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Topic H1N1 Vaccine for PD patients Go to previous topic Go to next topic Go to higher level

By Newcaregiver On 2009.09.10 16:36
To all: Just wanted to report in that my parkie saw the neuro today. One of our questions was whether it was advisable for him to have the H1N1 Vaccine when they are ready. The neuro said there was no neurological reason for him not to take the shot and he advised that he do so. Just wanted to let you all know our experience with this question.

By Mary On 2009.09.10 17:19
Thank you! It never occurred to me to ask before getting this vacine for Dad.

By dkleinert On 2009.09.11 00:36
Be sure to read all of what is out there on the H1N1 vaccine. I have read strong arguments against anyone with neurological issues taking this vaccine because of the high mercury content. Make sure you have all of the facts before you decide. We are not going to take the vaccine.

By Newcaregiver On 2009.09.11 08:45
It is hard to know what to do with any vaccine, isn't it! I will watch and read.

By lurkingforacure On 2009.09.11 08:57
There is another thread about this on the off topic part of this forum. Also there is tons of info out there about it on the internet.

One question I have is: we are in the northern hemisphere of this planet...on the southern side, they have already had their "winter" and so correspondingly their flu season. If there was a horrendous pandemic, they would already have seen it in the southern hemisphere...why have we not heard about it? I can find nothing about this out makes me wonder if the swine flu is just not being seen in the huge numbers they have talked about. If that's the case, it's a case for not taking the shot (we won't be taking it anyway, for reasons including those listed in the off topic thread).

By susger8 On 2009.09.11 13:23
South America had a lot of cases of swine flu over their winter months, and quite a lot of deaths. Our news media in the US just don't report much news from that region.

By gilly On 2009.09.22 16:35
We still have not decided about this shot. Our primary Dr. is not going to give the shots. He thinks there sould be more testing. I usually trust his judgment but I am worried about not having the protection of the shot.


By lurkingforacure On 2009.09.22 23:55
I just saw part of a four part series on Youtube by Russell Blaylock. He is a retired neurosurgeon whose own father died of PD. You can go to his website and see his credentials. They are, to say the least, impressive. I have read one of his books and it was incredible. His knowledge of the brain and how it works and what all can go wrong and how and why is far superior to any neuro we have ever dealt with. Too bad he's not in my state.

The gist of the youtube interview, that I got, is this:

1. the threat of this flu is grosssssssly exxagerated;
2. "the experts" throw out a figure of 36,000 people dying every year from the regular flu, Dr. Blaylock says this is incorrect as the CDC's own figures show the annual deaths of the flu to be around 800-1200 (I was guilty of using that 36,000 figure myself, actually);
3. the makers of the vaccines are making tens of BILLIONS of dollars off of this new vaccine that many feel has not been adequately tested;
4. this situation is eerily similar to the trumpet-sounding, pandemic-fear-instilling flu of the 1970s, when a new vaccine was quickly produced en masse and given to millions...many people developed the dreaded guillian-barre disease and died, it was tragic.

You can go watch his four part interview on youtube and see for yourself. From my understanding, this "catastrophic" swine flu is actually not that bad. If you get it, doctors are treating it the same as the regular flu. It is not as virulent as they are claiming, nor as severe. About six of my daughter's schoolmates have already had it (she goes to a huge school) and they have all returned to school within a day or two, perfectly fine. And none of them were that sick, just headache, fever, achy.

I also got from Blaylock that it is key during the flu season to:

1. stay RESTED! Hard for PDers who don't sleep worth a damn, but I am trying to make my husband rest more;
2. stay HYDRATED;
3. eat healthy nutritious foods that boost the immune system (multi vitamin, multi mineral);
4. he is big on Vitamin D3...the best way to get this is from sunlight on the skin, but if it's freezing or perpetually cloudy, you can get D3 from a bottle. A bonus if you have higher-than-desirable cholesterol...your body uses it to make D3 when the sun hits your skin, I always think of this when I am eating a bag of french fries and it just melts that guilt away...
5. of course stay clean, wash your hands, and more important: keep hands and fingers off/away from the face (my daughter's pediatrician told me if people would just keep their hands off their face (eyes, ears, mouth, nose), they would not get sick, great advice and it has worked now for many years for us).

I personally believe this whole swine flu vaccine frenzy is a manufactured way for the pharmas to make several billions of dollars at a time when they desparately need to replace revenues lost from falling sales of their drugs whose patents have expired/are soon to expire and are now being made in generic form by competitors. True or not (and who will ever really know), the reality is that we do not believe this vaccine has been tested sufficiently. When significant numbers of healthcare workers around the world are refusing to get the shot, that speaks volumes for us.

You also have to remember the shot is useless if the virus mutates....something I had not considered until I read about that possiblity this weekend.

By Newcaregiver On 2009.09.23 09:00
Lurking: I am going to look at that youtube. sounds very informative. We had pretty much decided on getting the vaccine, but our area is now being saturated with the H1N1 illness and I feel we will have had it before the shot even gets here. If that is the case - the decision will have been made for us!

In fact, my parkie is sick now with a "bad cold" which actually might be H1N1. The local news had a doctor on who said that the testing they are doing in the offices for whether a patient has H1N1 are very faulty. With only 50% accuracy, so really no point in going to find out. He is having hot tea and chicken soup. I will remind him to hydrate too! You are right, so far it has not proven, in our area, to be serious. Hope it stays that way.

By annwood On 2009.09.23 09:18
My area (Cincinnati) has been hit fairly hard. We actually had 3 deaths from H1N1 over the summer. Two were brother and sister in the late teens. One of our colleges has 90 cases right now. The media is telling us that it seems to be hitting the young adults (18 to 25) the hardest and people over the age of 60 probabbly have some immunity to it because they have been exposed to a similar virus in the past.

I received my regular flu shot yesterday and they told me there would probably be a shortage of the H1N1 when it is available. They will be reserving it for pregnant women and people under the age of 25.

By mylove On 2009.09.24 14:35
My daughter (age 17) has just had a deep vein thrombosis (DVT) from her totally routine foot surgery four weeks ago. It has been a terrifying week. As of right now she is on bed rest, Coumadin, and two shots a day of Lovenox, into her belly, that I am having to provide. She will be at least three months on anticoagulant therapy, and that is IF the clots do not move and cause other complications.

On top of all of this, today she developed flu-like symptoms. Her younger brother developed them yesterday. We were going to get the H1N1 shots when they became available, but it may be a moot point now. There are over 10 kids out sick in every class right now in our area.

Our nearby college is WSU, which has made national news as the largest outbreak of H1N1 ever so far. They say that the people who have been dying have been young but with some other complications. I hope your patients are all older than 60 and immune, because right now my family is very frightened. I don't know how much more scary news I can take.

By annwood On 2009.09.24 20:31
So sorry that you are going through all of this. The H1N1 virus is a real concern for people under 30 - we just had our 4th death here in Cincinnati last night. The girl was a 23 yr old student at the university. One of our schools has been closed. It is frightening.

By WitsEnd On 2009.09.25 09:57
Out of curiosity...I thought the big concern was for individuals who already had some type of medical issue.....were the Cinncinnati deaths otherwise healthy young people?

I hadn't heard the older people comment about prior exposure providing some protection. That's interesting.

I keep hearing about pandemic and emergency planning, etc. and I haven't figured out whether this is like the hurricane reports on the gulf coast (watch out the big one is coming---it's 10,000 miles away and it's only a thunderstorm now--and we aren't sure where it is going--but get ready for this monster storm anyway)......or it is something we should all be really worried about.

Terrorists, pandemics.....I don't know whether it's because I lost dad this year (after having lost mom so recently) or if it just my getting older.....but there's times I really do miss the old days when the world didn't seem like such a "scarey" place.

By lurkingforacure On 2009.09.25 15:58
It is tragic that any life has been lost. I fear for my family as well and am taking great pains to be sure we don't get it. As they say, "chance favors the prepared".

I do wonder, however, why those places who have already had their winter (ie, those in the southern hemisphere of our planet) have not been in the media if there were a true "pandemic" going on with this strain?

Anyone know how Australia et al are faring, since they are past their peak flu season? I can find nothing indicating they have had a "pandemic", much less a newsworthy outbreak. It is significant, as well, since no one in that part of the world would have had access to this new flu vaccine yet, since we don't even have it yet in the northern part of the world. If they are past their flu season, and had no access to the new swine flu vaccine, and did not have a pandemic (trust me, I'm pretty sure it would have been all over the news)....what does that say...

By annwood On 2009.09.25 17:52
I tend to agree that it is overblown; however, here we do seem to have a problem and yet it isn't on the national news. As far as reported, three of the deaths were young people with no history of any pre existing problems. The fourth one had a history of asthma which would certainly be a problem with any flu virus.

It sounds as if it won't be an issue for many of us since the vaccine will initially be reserved for those 30 and under and health care workers. They appear to be the most vulnerable. My son and his fiancee are in anesthesia school and they have to have proof of both flu vaccines by Oct 20th or they will not be allowed to work.

If my husband was still alive I think I would be concerned about getting the H1N1 vaccine for him but I don't know for sure. I share the concern that it may not have been tested long eough to know all of the problems. As with so many of these things it is a risk vs. benefit ratio - how many people are projected to die from it compared to how many people will develop side effects.

By WitsEnd On 2009.09.28 11:35
Well, there's only four possible outcomes....

1 - You don't take the shot and get sick;

2 - You take the shot and don't get sick;

3 - You take the shot and get sick

4 - You do nothing and don't get sick.

A good statistician could calculate the probabilities...but in the doesn't really matter if there's only a 1% probability---if YOU are that 1%.

It is really scarey when healthy young people are dying from the stuff.

Does anybody know if any of the other vaccines they have given over the years had the thermisol stuff in it? I know I had a friend who was allergic to that many years ago when they were putting it in contact lense solutions. If they've included it in other vaccines you've taken before and you didn't have a reaction....then that might help predict whether you'll have a bad reaction or not.

By lurkingforacure On 2009.09.28 21:27
NY healthcare workers, who have been ordered to receive this shot, are rallying in protest. Here's the link:

By susger8 On 2009.09.29 08:09
Latin America had a lot of swine flu cases over their winter, with quite a few deaths. I think our news media just don't report much from that area of the world.

By lurkingforacure On 2009.09.29 17:48
Found this on another forum, complete with links:

"H1N1 Swine Flu Vaccine Insert Admits It Causes Guillain-Barre Syndrome, Vasculitis, Paralysis, Anaphylactic Shock And Death

Bird Flu Pandemic
Tuesday, Sept 29th, 2009

The package insert for the Influenza A (H1N1) 2009 Monovalent Vaccine manufactured by Novartis has been leaked on the Internet. According to that package insert, the vaccine (based on an earlier vaccine product known as Fluvirin) is known to cause a whole host of very nasty side effects such as guillain-barre syndrome, vasculitis, anaphylactic shock and even death.

Of course anyone who has been studying vaccine side effects already knows that it causes all of these things, but the story here is that the insert for the swine flu vaccine itself is admitting all of these things. The insert says that it was updated during September 2009, so it reflects the very latest information.

You can read the package insert for this vaccine for yourself right here…..

The following is a list of some of the very nasty side effects that the vaccine package insert admits to….."

I'll add that two friends of mine, both cancer survivors, in different states with different docs, have been advised by their respective doc to not only NOT take this swine flu vaccine, but to not take the regular flu shots.

By annwood On 2009.09.29 17:58
I think if you check the PDR you will find that aspirin causes the same side effects. The trick is to compare the incidence of side effects to the death rates of actually getting the flu.

By WitsEnd On 2009.09.29 18:37

I know what you mean. There's been so many lawsuits that they disclose everything. I think if there was a placebo it would probably have warnings about dizziness, fatigue and not driving until you were sure of the effects. Unless you look at how many people were affected you don't know if it was a big problem or a minor issue.

By lurkingforacure On 2009.09.29 22:26
No one has mentioned this but my understanding is that there are two types of "vaccines" for the swine flu: a nasal spray, and the injection. My understanding, again, is that the nasal spray contains LIVE VIRUS and the injection does not. Might want to avoid places that are using the nasal spray since those virii could be flying around. For us, that means the nurses' office in schools, pharmacies, groceries stores on certain days, etc. You need to be aware of what is in the air around you since this thing is airborne, and take precautions.

By annwood On 2009.09.30 00:18
I think we all have to calm down about this. There has been a great deal of research done on this flu and I think your physician is the best source of information. It is my belief that the last thing the pharmaceutical companies want is a massive class action lawsuit resulting from a faulty vaccine. The live virus in the vaccines is a very mild form and not able to live outside the host. We do not have to be afraid of going to a school or grocery store where vaccinations are taking place. Published work this week has demonstrated that the injection is more effective in adults and there is some concern that many adults are opting for the nasal spray. That one is more effective in children. Many of these articles on the risks of this vaccine are from sensation tabloids - speak with your physician about it. He has access to the medical literature.

I do know that if you are a PD patient either flu is going to be devestating. Look what a simple bladder infection can do to you.

Every vaccine has some risk but the disease can be much worse than the small risk of a possible side effect. I know women who will not allow their children to be vaccinated because of possible risks - even when the medical literature has shown that certain reported problems are no greater than in the normal population.We have movie stars on TV reporting problems attributed to the vaccines as if they had medical degrees and had done clinical studies. I worry about these young girls, who have not been immunized, and what will happen when they develop some of these childhood diseases as adults and when they become pregnant. There is a reason they are childhood diseases. Many adults die of these diseases when the develop them later in life.

I am not a physician, I am a nurse. I do not have the inside scoop on this but I do believe my physician and will do as she says. I do not want to anger anyone on this forum but I also think there is a real danger in creating unnecessary panic. ASK YOUR PHYSICIAN!

By susger8 On 2009.09.30 07:52
Lurking, I can't read your link, but I wanted to mention that a package insert is required to list every single thing that happened to anyone in a clinical trial, whether it was related to the drug or not. Every drug has side effects. But as annwood said, what you have to consider is the benefit-to-risk ratio.

By Newcaregiver On 2009.09.30 08:35
I agree with Annwood. We need to realize that everything we read on the internet is not verifiable. Careful study and thought needs to go into any decision. We just need to way the possible side affects of the vaccine against the risk of possible severe illness in getting the swine flu. We may each come to different conclusions!

By Newcaregiver On 2009.09.30 08:35
Obviously, I meant to say weigh not way!

By WitsEnd On 2009.09.30 16:24
FYI I heard on the local news that the schools in Huntsville were closed again today (that's a small town north of Houston, TX--not the one in Alabama) because of 900 kids being sick with flu like symptoms. I don't know about vaccines or anything else...other than I sure hope I don't need to go to an ER and be around any sick people for awhile. That's probably one of the best ways to keep a PWP well.

By karolinakitty On 2009.10.01 09:01
I have to agree with annwood ....Don't let this panic you and get out of control...Ask your doc what's best for you and your "condition"...
As far as the nasal spray versus injection.... I saw a report where the nasal is the best for those under 18 and the injection for adults...but again ...ask the doc.

I can give a brief example of the "statistics"... here in South Carolina there have been recent deaths that they say were caused by Swine Flu... they were both children, one 11 and one 13.... These children both had pre-existing conditions, one with cerebal palsy and the other with a condition that left her with near pneumonia after a simple cold... Now both these children contracted the flu but, and I'm no doc, but both had medical conditions that might not have been able to fight this flu.... So with all the statistics we see about the flu many are from people with conditions that already have a hard time fighting the common cold...
If we get real as caregivers... how many of us are really out there in the world of germs...... we are 24/7 and get out very for necessities and doctors visits..... most of us don't go to sporting events, crowded malls on weekends, or any other mass of people events where this can be highly spread. Most of us are in our little worlds in caregiving and don't have time for much else. If we take the normal precautions as a caregiver with washing hands and keeping things clean we should be good... Have been in food service all my life and keeping things sanitary is the best way.... i worked in several assisted living and nursing facilities and have learned about keeping things sanitary for any condition....

We have never, ever had a flu shot and don't plan to get one any time soon.. If we are careful and follow the guidelines of avoiding it we should do ok... But again like annwood said to your doc... let them decide .....

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