Post Polio Syndrome

[justpassnthru]

Anyone treating PPS with cannabis?

I have this terrible knot in my stomach telling me that many that received the vaccine may get it? What do you think?

Please, lets try to exchange more facts than opinions; I really want to learn more about this! jpt

http://www.ninds.nih.gov/disorders/post_polio/detail_post_polio.htm

 

[unregistered190]

Interesting.......first I have heard of this. Thanks for the link

 

[Weezard]

While it is a fact the the Salk Vaccine contained SV-40.
And it is know that 98 million people were injected with it.
We still have no proof of an SV-40 triggered cancer cluster.
Given those numbers, there should be an obvious connection.

That said, my personal impression is that I see more cancer today that I even heard about 50 years ago.

It is my understanding that PPS has NO connection to the Salk vaccine or to the Simian virus.
PPS only occurs in polio survivors and it's severity is dependent on the severity of the original attack.
Please correct me if I'm missing something here.

Aloha,
Weezard

 

[justpassnthru]

I am fairly certain I know someone that has Post Polio Syndrome disease; And no known treatment or diagnosis of Polio or PPS, for that matter.

Which has me worried about the vaccines?

OR: People having Polio with the mild symptoms and never being diagnosed with Polio, originally?

PPS isn't Suppose to have anything to do with vaccines, but I have my doubts, seriously? jpt

edit: (we have more 'tools' in the shed for diagnosing cancer-but, it sure is prevalent)

 

[Weezard]

I am fairly certain I know someone that has Post Polio Syndrome disease; And no known treatment or diagnosis of Polio or PPS, for that matter.

Has said person actually been diagnosed with PPS?

Which has me worried about the vaccines?

It's a weakened strain and did what it was designed to do.
Trigger the formation specific anti-bodies.
I suppose it's possible that those anti-bodies are at the root of PPS. But I really do not know.

OR: People having Polio with the mild symptoms and never being diagnosed with Polio, originally?

That's a thought. I'd guess that the PPS would be mild as well then, yah?

PPS isn't Suppose to have anything to do with vaccines, but I have my doubts, seriously? jpt

Oh, I hear that.
And billions of dollars of liability tells me that we will never know for sure.

Cynical?
I'm with Lily Tomlin on this one.
"No matter how cynical I get, I just can't keep up!"

Aloha,
Wee

 

[Weezard]

Wow! just read your link!
I researched the Salk vaccine in the '60s but was unaware of this wrinkle.

Of course they recommend a PPS doctor.
Then say there is no cure and almost nothing helps.
But they'll be happy to bill you anyway, right?

I disagree about no effective treatment, this is exactly what RSO is good at, nerve repair.

PR, find me a patient with diagnosed PPS please, I wanna try something.

This is gettin' interesting.

A.
W.

 

[justpassnthru]

Well, this person is going to a major hospital out of the area. So far, they have suspected and ruled out; ALS, Lupus, Lymes, Raynauds and a few others.

However, NONE of those fit the symptoms--which are fairly advanced and rather severe, at times. To the point of fainting and being unconscious for several minutes at a time! With severe cold intolerance, joint pain...well, everything that falls under more serious types of PPS.

No history of Polio, either!!! Just the vaccines. There are still a few more tests that need to be done and they seem to be doing one or two a month, due to travel to the medical center.

Mind you, all the docs are 'stumped.' Since, I am around this 60 yr old frequently, I suspect PPS.

Worse; I personally was very "ill" with an unknown 'something' and kept at home for 3 mos. from school in 5th grade, 6 mos. after my vaccines? Yeh, I am more than just curious about the vaccines, we had.

Too many had those vaccines and I doubt there will be any major evidence brought forward until our generation has expired!

Too much Fibromyalgia with this generation! Don't cha think? jpt

 

[dddaver]

The symptoms you describe all sound like me, including the staying home for a long time sick in grade school. I was in the 4th grade though.

I have seen many different general practitioners, a couple neurologists while in the Air Force and at least 3 private practice dudes since I retired 12 years ago. I have had physical therapy, MRIs, CAT scans, x-rays, sonograms and a full thyroid scan and work up too including taking that radioactive tracer so they could see it metabolize.

Nothing has worked and my balance, coordination, arthritis, and degenerative back disease continue to gradually worsen. It has had all the doctors scratching their heads.

Frankly, I'm tired of being poked and prodded. Even if they find a name and label it I have serious doubts they could do anything anyway so labeling it or giving a name to some ethereal rare disease with hit and miss and ineffectual treatments and the diagnosis, name, and treatment that would most likely change a few times anyway, all seem a bit pointless to me anyway. I'll only see a doctor once a year now to renew my meds and get my blood tested and an overall general check-up. I'm very not impressed by the level of quackery and bs of medicine.

RSO seems to be promising. Since this is a seriously non-med state with severe laws, that has its difficulties. I've made balm but want to grow out a couple zips extra before making any RSO myself. I foresee a huge amount of bs and unethical behavior surrounding that in the near future when the eventual marketing surrounding that shit hits the fan. It'll will ALWAYS be best to make your own.

Not sure all that was even relevant. Thanks for reading my rant.

 

[justpassnthru]

Thank YOU ddDave; That is exactly the information I am looking for!!!

You are correct, other than rso, there is no known treatment. I expect many of our generation having full body pain and the "Fibromyalgia" diagnosis, may actually have more to do with the vaccines.

I've been diagnosed with M.S.; But after reading the ADVANCED stages of Post Polio Syndrome...I am very suspicious.

I personally know the RSO helps me function, tremendously.

And I must admit; the person I am suspicious about was in the same Los Angeles County School system for vaccines, as I was.

The ONE remarkable thing of her symptoms is, she faints while eating (swallowing is an issue with PPS) and is extremely sensitive to cold and not as much to heat. The hands and feet often look blueish (cyanotic).

Somehow, I am thinking Fibromyalgia was 'coined' by the gov't to satisfy our generation. And the sad side of me even wonders IF, there is a cure that is too expensive--not to mention (as Weeze pointed out) Lawsuits.

This really scares me.

The additional tests you should have had, dddDaver, would be a tilt table test, EMG's and a spinal tap! if you are interested. This has been a relatively unstudied disease until this century! I am much more than curious!

Thank You for your input! jpt

oops forgot; muscle tissue biopsy is also a test for this

 

[dddaver]

Please don't misunderstand what I'm about to write jpt. I know you are only trying to help me and find out more about all that too, but I have a strong negative feeling toward myself doing any more futile exasperating searching and going down so many dead end roads only for my condition to continue to just worsen. I have concluded personally that if I only worsen physically anyway, the stress of doing all these tests only to find a label and name a syndrome, and even then have that name most likely being wrong, is futile at best, and my only real relief comes from my personal endeavors and using cannabis.

Although I do think that finding out more about this problem is more likely a path toward finding a cure, I personally am very tired of being a Guinea Pig only to have the rug pulled out from under me. I had one blood test that showed I had Lyme Disease, yet a follow-up test (more specific) came back negative. Then that asshole neurologist instead of further investigating said, “Okay, well, make an appointment with the receptionist and I’ll see you in 6 months." It was a long walk out to my car.

I am deathly afraid of needles. My doctor says I am vaso vascular or something. Whatever. His nurse (new, young) last time first stuck my arm and missed so then decided to do a "butterfly" draw on my hand. I damn near passed out. The black border around my eyesight right before you pass out started forming and a I started getting woozy and said, "I'm gonna pass out." Then in the distance I heard, "We're done." Too bad his old nurse quit to get married and move though. She was very good and I felt absolutely nothing when having blood drawn by her. Some people seem way more adept than others doing that. I think a lot of my fear stems from giving a blood samples in the Air Force. One fine experience was getting stuck in both arms then the technician calling her immediate supervisor saying, “Sergeant, I can’t get any blood” That sergeant bitch sure did after she wiggled the needle around and plunged it in and out a few times. I left with both arms bandaged and severe bruising on both too. There is a reason they have bare tile on the floors, making mopping up the blood easier, and have chairs with the arms that swing across your body to catch people who pass out. I think the whole atmosphere is screwed up from the start.

Another time I was standing in a line to get my annual flu shot. But the line stalled. The dork giving the shots grabbed my arm a second time. I yanked away saying, “I already got one.” Total idiots from him on up the ladder. Way screwed up.

I really don’t need any tilt table test. I know now it would make me barf. I get dizzy like I’m drunk by just rolling over in bed and have too wait a few minutes for the dizziness to subside.

A spinal tap ain’t happening. I have had an EKG, not sure what an EMG is, maybe I should. No way am i getting a muscular tissue biopsy. My thing is, although it didn’t come directly from my pocket, for the thyroid testing I had done, Medicare paid $4,200 bucks for that stupid thing after a radiologist saw “incidental” nodules on my thyroid when looking at my carotid arteries on a sonogram. So I Googled it when I got home. The vast majority of people get those nodules as they age and well over 90+% of those are benign. What a scam. But the esteemed doctor wanted me to go. After taking some hugely expensive radioactive pill a few hours later I was put under a huge scanner, then the technician left me under a huge scanner for 20 mins. and just left without warning me I had to stay there. I kept yelling, “Hello, hello!" Then I got to listen to Fox News for 20 min. When she came back and I asked her to turn that off. She said,"I thought you would like listening to the news.” I said, “I do, but that’s not the news.” I have decided I will not be some pawn in this huge Medicare scam. The whole thing is a mess.

I realize you are only trying to help me and have a kind and warm heart, so I hope I’m not annoying you with this attitude. I hope you read about that other MS patient and his experience with pain killers and finding relief only through cannabis. Inspiring actually I thought. My dead wife had Lupus so I heard a lot about fibromyalgia (sp?) and arthritis. I myself am just not so keen on getting caught up again in this huge medical malpractice scheming going on when it is way more likely to find answers and relief through my own personal endeavors. And enjoy the search while doing that. I only hope the best for you. Thanks.

 

[oscarthegrouch]

not sure what an EMG is, maybe I should.

If your having muscle problems and movement problems it might be a good idea. They stick a needle with a wire coming out of it that's hooked to a computer into your muscle. They have you relax and contract the muscle, the computer logs the activity and they look for abnormalities. It's not as bad as it sounds, Ive had 8 of them over the past year.

 

[dddaver]

If your having muscle problems and movement problems it might be a good idea. They stick a needle with a wire coming out of it that's hooked to a computer into your muscle. They have you relax and contract the muscle, the computer logs the activity and they look for abnormalities. It's not as bad as it sounds, Ive had 8 of them over the past year.

Thanks. I've had similiar tests before, I don't remember what they called it. A muscler conductivity test maybe? It ammounted to an electrode inserted into one end of a muscle and a mild current sent through the muscle to be received through another electrode that had been inserted at the other end of the muscle. That test was as bad as it sounds. Kinda bloody and painful. In fact I yelled at the doctor once for not warning me once when jolting me so I could brace myself. Bitch! Sometimes these people seem to get so wrapped up in the technology and procedures they forget they are dealing with real live humans who feel pain. I had also called the office the day before the test and asked what it was. They wouldn't tell me probably because they knew I wouldn't go. I bet that happened before too and they had to pay the rent after all.

And...that's just ANOTHER of my many, many reasons to say fuck that crazy shit. I've had more than enough of that quackery, thanks. Makes you think most of those idiots don't even have the slightest clue what they are doing, just want those fat doctor pay checks and designated parking, not to mention cool license plates.

 

[justpassnthru]

dddaver; Your medical story is resoundingly much like many of our age group.

Vasal Vagal syncopy is also a part of PPS.

Since, there really is no treatment for it (other than symptom management) and you plan to go on rso anyway, your path is understandable with your history. Hopefully, one day, there will be less invasive testing. jpt

 

[dddaver]

Vaso vagal. Thanks. Don't know why I can't remember that.

I really had no thought at all when growing up in central NY that by the age of 51 I would be disabled, living alone,out in the country, just south of Ala-fuckin-bama, in redneck bible thumping heaven. Now I'm 58. Even stranger. Whatever. Sometimes I just have to sit and think, "What the hell happened." Life sure is strange.

Like you jpt, I also think people of our generation were exposed to many toxins that are only now showing up. Many of the food additives, vaccines, and in my case exposure to radiation and chemicals, that were thought and intended to make our lives better in reality had the opposite effect. Some of us were more harmed than others. I believe I am more sensitive and have physical reactions to things most people don't, even the air I breathe. When the furnace or AC is on I get congested. Always did. Very allergic to pollen too.

 

[justpassnthru]

After Prez GW Bush and the famous 'pretzel' syncopy, it has been affectionately been called vaso-bagel syndrome. However, the same phenomenon is associated with PPS; as PPSers have weakened respiratory muscles and difficulty swallowing, which often causes 'fainting,' 'syncopy,' and 'passing out' while swallowing. Not to mention issues with 'balance.'

and mild to severe hot and cold intolerance. (more cold intolerance than heat
Hypotension and occasional runs of irregular heart rates--pulse.

Something is causing so many of our bodies to start attacking us? I wouldn't shout Fire in a theatre, but I feel there is more to these 'auto-immune' conditions? Besides...'..we just don't know what cause's it.' With speculations from childhood fevers to stress causing the body to start going 'whacky'

I live in a senior community and just about everyone my age has these symptoms. Most of the seniors here have been diagnosed with Fibromyalgia.

I am rather alarmed and somewhat scared. Which I will soon be chasing with rso, myself! jpt


http://www.masscfids.org/resource-l...c-problems-in-cfidsfm-and-post-polio-syndrome

For Mr. Bush this is likely a one-time thing. But for polio survivors and people with CFIDS/FM, low blood pressure, lightheadedness and even fainting can be frequent occurrences. We know that the poliovirus damaged brain stem neurons that control the vagus nerve and possibly damaged the nerve itself. We have been following a growing number of post-polio patients who feel exhausted after eating meal. Food sticking in the esophagus or a full stomach apparently overstimulates the vagus nerve, triggers a drop in blood pressure and causes feelings of severe fatigue, even though these polio survivors don't usually faint.

 

[Weezard]

Dang Vagus nerve gives me problems when I try to drink ice-water too fast.
Have always loved ice-water, but about 5 years back, I had to give it up.

Because I could no longer stand the cold summers, I moved from N.Cal to the tropics.
<60 degrees F. my joints get extremely painful.
It's warm, and all was well until it wasn't.
Then, about 5 years ago I chugged a glass of ice-water and almost fainted.
Had to sit on the ground until the weakness passed.
Hmmm, that's odd.

Thought the water was the problem but it didn't affect the wife.
And warm water was no problem at all.
Hmmm, tried it again.
Whoa! weak, dizzy, disassociated, slightly nauseated.
Not good!
Feels like a sudden drop in blood pressure and I go all pale.

The vagus nerve runs alongside the esophagus and affects your heartbeat.
So it makes sense, but was not an issue until it became an issue.
I wrote it off as age related with all the other symptoms.

Now, I'm wondering about the sudden onset.
Quite sure I never had Polio.
And I did not get the injectable vaccine.
I was one of the millions that got the sugar cube ingestable instead.

Way back when I was sneaking into lectures at the medical college I witnessed the symptoms syndrome first hand.
People seek patterns, so every set of symptoms that was presented had half the class thinking, "Wait, I have those symptoms. I must have the Antarctic bloodworm infestation".

They were convinced that they had every disease they read about.

As for a proper diagnosis.
What you name it only matters if there is a treatment for that condition, yah?
So, for now, I call it oldfartitis.

Aloha and be well
Weezard

 

[dddaver]

Sorry to go a bit off topic here, but do you grow jpt?

I am always thinking I should sell out and move into a senior community, but I got spoiled by so much independence, privacy, and no immediate neighbors. I can do what I want, how I want, when I want. Absolutely no one judges me, and if they do, I couldn't care less. But it would be very disconcerting opening some drapes and seeing someone staring at me from their window 15' away.

Yet for instance, I took a tumble last night. Nothing bad. And I landed on clothes as I was in my walk-in closet tending my drying harvested plant (only 1 small female that I nearly killed as a baby). Could have been bad though. I has scissors in my hand but I know how to fall. Learned as gymnast as a kid, that's mostly just controlled falling anyway. But I digress (or babel ). But that kind of thing makes me think I better move.

That growing is a great hobby. I need not worry about any real stealth here either, like smell or sounds of the fans, no one is near enough. And I keep it small and very quiet anyway too, only in a closet for my personal use with a 150W HPS for flower and LEDs to veg. And I observe rule #1, tell NO ONE. Ever.

That growing is highly addictive too. Been doing it awhile so I pretty much know what I'm doing. Dialed in fairly well. Plan on doing it forever too.

That growing thing seems to be a huge drawback living in senior communities. Most have harsh penalties against it. I definitely could make some concessions on privacy, I grew up in a big family, but that not being able to grow would be a deal breaker for me. I really like doing it, it is good for me, and really like knowing exactly what I ingest and what is in my 100% organic product.

I have not seen any places where I could fit in or keep my activities stealth.

 

[Weezard]

There's a million dollar idea who's time has come!

Cannabis friendly senior communities.
I can see it now!
A community garden, trimming parties, wheel chair toke offs, . . .
Save me a room yah?

 

[xmobotx]

maybe someone can explain the value of RSO vs say canna-butter?

I'm making some canna-butter right now {the method that's like hot pack canning} & fail to see where alcohol or naptha extraction might be superior to that

Been doing a lot of wondering about aroma therapy {w/ like lavender essential oil or other specific oils w/ specific benefits} I bet there's an essential oil which would have a benefit for these types of symptoms & a proper medible from canna might even have curative properties

anyway, I don;t like the idea of using butane, naptha or, ISO to extract {not saying no one should just i don;t like it} i prefer PGA or fatty oil choices

 

[justpassnthru]

maybe someone can explain the value of RSO vs say canna-butter?

For me, the difference is concentration and looking for a very high dose of 'concentrated' cannabis of thc/cbd medicine. My butter I use to get high and feel good longer. The difference would be between symptom management with medibles and disease remission with oil.

Weezard; I had both vaccines; the sugar cubes in 4th grade followed with a change in 'school systems' and my records did not follow--they said it would not hurt me to get the injection, the first week of 5th grade! You are a pretty funny guy and surely aging has its drawbacks. The symptomology of years and years of progressively getting worse and whole body symptoms, not just syncopy, while drinking. Syncopy from climate heat or cold, as well.

Many are more cold intolerant with PPS and some are both; heat and cold intolerant. In fact, often some 'pass out' or get faint if the bathroom is too steamy after a shower (I have that, as well--so I take cool showers and vent the room).

Many of the symptoms of PPS are very similar to M.S. & A.L.S.; frankly, from the literature A.L.S. can be diagnosed instead of PPS. These disease's are pretty tricky. Plus, another is cognitive issues that appear to be 'transient.' Unless you have the cognitive issue thing, I doubt you'd understand it. Like yesterday, for some odd reason I was thinking marinol was a cbd pill and not the thc, that I knew it was. That sort of backward thinking, well I feel somewhat impaired at times and know it, other times--it is mild. It is terrifying when unable to solve problems, you know you are excellent at. If my IQ goes any lower---I might be dangerous.

@dddave: Now for the fun part; There is actually a senior community in California that had a pot garden; I was planning to live there until, they went public and due to the pressure it generated, the HOA made rules to ban the co-op public garden. Watch the video!!!
http://abclocal.go.com/kabc/story?id=7171384

You tube link just won't work--unable to edit to work. Above link doe work...so far.



Medical Marijuana is legal here and we don't have to hide; However for security it remains a very good idea!

However, I kindly note--there is now an operating 'collective/dispensary' there (today). It is a city known as Laguna Woods (formerly leisure world)--all seniors and it seems like a delightful place near the beach to live.

I live in a senior mobile home park; This place smells of grows and everyone 'thinks' it is skunks. I started smelling the harvests about a month ago. The nice pleasant kush skunky smell permeates the air here, at night! For some odd reason, I seem to be the only one that can tell the difference.

People her talk about "medical" marijuana, as just that. I suspect the big 'grower' lives a few doors down, admittedly soaking her Fibromyalgic hands in marijuana leaves.

I had no knowledge of pot when I started using medicinally and thought this "medical" marijuana was something you couldn't get thru an acquaintance. For some odd reason I thought it was some special plant that grew differently than bag weed. Once, I learned...I knew I had grown it years ago in my vege garden (prior to ever taking a toke, I would just grow anything). Oddly, I knew and worked closely with the PD and the police helicopter flew over my home at 11:50PM every night (that is when I learned it is a good idea to wear a bathing suit when in a jacuzzi).

Senior living is different dddave; I did not PLAN, as I should have to be here. The price was right and it was ultimately going to be temporary. But then I started having this health issue. And quickly learned, I am where I need to be. My Little Dog just loves it here and everyone knows her.

She is safe and the 2 times she ran off she quickly came home in a strangers arms! In the past, I've had problems 'buying' my dogs back from neighbor kids that figured they found it, it was theirs!

It is quiet, people mind their own business and there are social activities. The bad part is; people die like flies and the neighborhood 'turns-over' to new people.

This is in the country in a city and next to a larger city. I just love it with the country evening skies and 25 minutes from my medical care.

As far as where I live, I will feel comfortable putting a large enclosed greenhouse in my back yard. The parks--actually they call this place a 'ranch'; attorney told my attorney; "She can do whatever she wants there, she just can't grow marijuana." Of course my lawyer laughed like hell because she knew that is my intent.

The bottom line is, many folks died here in the heat this past summer and the brand new owners have filled the homes with "underage' (but acceptable and close enough to 55 yr old)..The point is, they are breaking the rules and allow a select "few" to break the rules as well.

I have informed them in writing that unless they enforce the rules for ALL, none of the rules apply! So putting in a greenhouse is not such a farfetched idea. Particularly since my yard borders folks yards that I am friends with and do discuss medical marijuana. In fact, one neighbor wants to grow it in her yard, for me. As her property is against a horse field and the RV park. lol

Definitely here in California we can grow inside, regardless, as I own my home. According to the lawyer.

I just love it here, and I moved here from 5 acres and never less than 1 acre for the preceeding 30 years! Moving is not even on my mind.

I'll start a new thread on senior community living. Something I never considered and ultimately, a place I love.
jpt