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Now this is maybe a strange question- but reading about AP and how RA may be caused by a bacteria- do you think you can catch RA?

 

The reason I ask this is my husband for years has had all kinds of aches and pains attributed to tendonitis, achilles, he tore the big ligament to your knee, etc. Also hands hurt, knees kill. etc. He does a lot of heavy labor so he has always thought he hurt do to overuse.

Lately, after I just got over my episode- he has been gimping around feeling worse than I do.

This morning he woke up with pain in both shoulders...

 

Any comments?

Free - I am convinced that my RA has its roots in contracting scarlet fever (strep) when I was 3 years old (51 now).  This theory that these strep "germs" hide in your joints, then pop out when traumatized or stressed works for me too.  In January of 2001 I was working and went down to get the mail.  I was in an inner stairwell and at the bottom was a break-away bar door (with no window, against code).  What I didn't know was there was a man who looked like about 300 lbs. in a wheelchair about an inch away trying to manuever to get into the doctor's office on the other side of the door to the right.  This is an old old old office building that been redone over and over.  I straight-armed it right into him after literally skipping down three flights of stairs as I had been doing for months, so I was moving fast. 

It was instanteous - I herniated (not ruptured) a neck disc, tore the muscle in my upper arm, misaligned a thoracic vertebrae, and damaged my wrist.  In a instant the pain went straight up my hand to my neck then back down to my hand and the arm immediately swoll up and turned blue.  I started crying right then from the pain and I knew I have just been ruined for life.  (I did finally receive a WC compensation, but had no idea what was coming next, which was I then immediately started into my RA symptoms), and I truly believe this physical trauma reactivated the hiding strep germs.  That's my story and I am sticking to it.

Great question.  Cathy  PS Scarlet fever is contagious and my Mom said there was a huge debate over where I contracted it.  It has a five-day incubation period, and we had flown from Alaska to LA, and it was finally decided I caught it in the International Terminal in Seattle, but nobody will ever figure that one out.  I was in LA for five days, then suddenly collapsed unconscious while chasing my brother around a palm tree, which I had never seen before.  I remember this very clearly.  After that, I have a huge memory gap until I started first grade.  (If it turns out I really have lupus, I think it was hitting the sunshine of LA after my first 3 years in the darks of Alaska :) 

justsaynoemore39466.393599537My docs have always told me that I "caught" something in utero when my mom was pregnant with me. Who really knows though---they cannot cure it and they cannot figure out why it happens. They told me my chances of passing this disease onto one of my kids were just the same as someone that doesn't have it. But my youngest was diagnosed with it. All I know is that when I was pregnant with him--I had some weird virus that the docs could never figure out---my whole neck swelled up like having the mumps--but I tested negative for it. They did a ton of tests on me--I was about 5 months along and they could never find anything.
Makes you wonder..........

I found this case study that said something like 'this is the only case on record of a petient getting a mycoplasimic infection in utero' and the damn computer crashed.  I have absolutely no idea where I was when I saw that. 

That being said...yes, I do believe certain strains of this stuff is more contagious than others.  Before I came down with PRA, my hubby got this weird form of LADA and before that my brother got a weird form of some sort of infection in his back.  He was treated with long term antibiotics (a year) and is fine.  After we'd all been out of the country and I was eating raw fish.  So...maybe you're immune to the critters you have near you...but less immune to different ones.  Anyway, whatever it is, it's moving thru my family like wildfire.  My brother with the back's child now has pre-diabetes.  My other brother's wife has RA.  Her daughter has UC. 

Pip


Pip: Went searching for such an article and so far - no luck.  I did find the following article to be informative. Am going to keep searching.

The Pharmaceutical Journal Vol 265 No 7105 p100-102
July 15, 2000 Forum

European League Against Rheumatism

Rheumatoid arthritis - an infection?

This report covers highlights from the annual European congress of the European League Against Rheumatism (EULAR) which was held in Nice, France, on June 21-24

In his lecture, Professor ALAN SILMAN (ARC epidemiology unit, Manchester university) asked "Is rheumatoid arthritis an infectious disease?" If an infectious cause could be identified, then this would raise the possibility of preventing or treating it, he said.
Diseases were often viewed as having an environmental or genetic cause. Professor Silman said that all diseases required both factors. In twin studies, RA concordance occurred in 15 per cent of monozygotic and 4 per cent of dizygotic twins. This suggested that some genetic factor contributed to the disease but that it was not the sole cause. Environmental factors could play a part, even in utero.
In terms of environmental factors, it was interesting to see that there was a similar prevalence of RA across Europe, the US, Australia, Japan and some other countries. A dramatic similarity had been found in many studies whereas for other diseases, such as cancer or heart disease, there were large differences in prevalence. There were exceptions, for example, there were some native American Indians who had very high rates of RA and some rural African populations with very low rates. This could be due to genetic factors.
If RA had an infectious cause, clustering over time might be expected. A population register in Norfolk had shown no evidence of time clustering nor higher rates in overcrowded areas with poor socio-economic conditions. This did not support evidence for an infectious cause. However, on the same register, there were some "hot spots" of disease clustering but this was not apparent for the vast majority of cases.
Population data for many countries, including the UK, had shown a recent decline in the incidence of RA. Could this be explained by birth cohort (ie, the year in which a person was born and not the current year), suggesting exposure to a causative agent early in life, Professor Silman asked. It did appear that older cohorts had a higher incidence of RA for the same age. This was consistent with an infectious cause, he said.
RA certainly appeared to be a very recent disease, being first described exactly 200 years ago. This might suggest a link to vaccines. It was also possible that people were genetically susceptible to the disease and that, as result of an unknown trigger, a person developed RA. A specific example of this was a person who had developed RA on the day after having a yellow fever vaccine.
Other evidence for an infectious cause included a higher incidence of cat ownership prior to RA development, suggesting that an infection was caught from cats.
Another theory was that an antigen in tetanus immunisations precipitated the disease. A study had shown that onset of RA had occurred in 3.2 per cent of people who had received the injection six weeks prior to onset compared with 1.2 per cent of controls.
Blood transfusion was also under suspicion. A history of transfusion was higher in RA cases than controls. Could this be linked to transmission of an infectious agent? Transmission of the Epstein Barr virus could not be ruled out.
It was suggested that RA was inversely related to allergies such as hayfever. RA was a TH-1 mediated disease and allergies were TH-2 mediated. Professor Silman said that it was a reasonable suggestion that the TH-2 response caused a dying down of the TH-1 response.
Asked how the different prevalence of disease in males and females could occur if the cause was infectious, Professor Silman said that this could be explained by a variation in immune response between the sexes.
Professor Silman concluded that there must be an environmental factor to RA; however, there was likely to be a considerable heterogeneity making identification of the cause difficult. Pathologically, infection seemed to be the most likely initiating event, he said.


Well, that was interesting but it's not true that RA only showed up 200 years ago. Here's a link to an article describing the timeline of RA, from our own Arthritis Insight.

In the New Arthritis Breakthorugh it details how RA wasn't present in Europe before a certain time, suggesting it was "brought over" by people from another place (which certainly supports the infection theory). I can't remember the details of that, but I know Pip knows them so maybe she will tell us. I've been kind of busy lately so I can't take the time to look it up at the moment.
I found this interesting:

http://www.cbmh.ca/archive/00000189/01/cbmhbchm_v7n1buchanan .pdfLynn - the link says 'file not found'.  Can you post a little description, so I can goodsearch it?  Thanks!Suzanne, here's a link to Lynne's file

It is interesting but I'd like to know what year this paper was written.

I have read an account of looking at bones after a new archeological technology was invented that detects the existance of RA by looking at skeletal remains,  thereby showing it's history and migration through bonafide archeological proof. I thought it was in The New Arthritis Breakthrough but I just quickly scanned that and didn't find it easily. Unfortunatly I am pressed for time today.
1989

"An

infectious cause is most likely, and the behavior consistent with ecological

succession in the botanical world."

They have been thinking this since 1989.  What is taking so long?

Thanks for the study, Lynn, and the link, Go-go.

It is not infectious, it is genetic. So the environmental can add to it as
damaging the genes. It can place the disease on certain continuents
earlier because it is genetic and people did not travel and breed (mix
genes) until they had the means or a reason.

When I was in Greece, I saw a skeleton that had its spine fused from
inflammatory arthritis. It was BC definitely though I don't remember the
exact century.

Now some people do start with an infection. How it was described to me
was, the messed up genes was sitting there waiting for an event. Be it
having a baby, menopause, flu or terrible stressful event. Something
happens which releases the bad gene to attack itself.

If it was really infectious, antibiotics would cure it in a month or two,
which my doctor says proves it is not a bacteria.

Spouses could have something, men get AS much more commonly that
RA. Or maybe Lymne? or some men (ahhh clearing my throat), need a
lot of attention. Wife gets sick, they need attention bingo. I know my man
is an absolute baby when it comes to being sick. Send him to a doctor, it
is not infectious. Another thing, maybe your genes are attracted to each
other? You found each other because a long time ago your love genes
were close to the messed up RA gene?

The whole gene code is being unlocked, it is an exciting time to have it--
couple more years and they might be able to target our treatments to the
specific gene that is messed up.

So far they have found three genes for RA and three genes for AS.

Birdy


Wow, Annaart, it's amazing that you know what causes RA even though the entire medical research field doesn't. Have you let them know? You could be saving people billions of research dollars.


If it is infectious, we haven't developed the right antibiotics to actually get rid of it. Tetracycline antibiotics only kill the proteins the suspected mycoplasma need to live, and it inhibits their reproduction but doesn't actually kill them. Saying if it were infectious then antibiotics would get rid of it isn't logical. Not ALL antibiotics kill ALL infectious pathogens. Besides, mycoplasma have no cell wall and get into your cells and tissue where the antibiotic (or your immune sytem) can't get to them, so that's another reason why that belief is not logical.

In my case, I believe there is a very strong genetic connection. It may or may not be that way for anyone else...I just don't know. I do know that they have found that DNA is involved in inflammation and immune response.

http://healthday.com/Article.asp?AID=607973

http://healthday.com/Article.asp?AID=608264

http://healthday.com/Article.asp?AID=604063

WatchingWolf - great post.  I thought EULAR was totally traditonal in their approach.

Lynn - 1989 is old info, but it's interesting none the less.  From what I'd seen previously, there were examples in the America's of skeletons with RA, but nothing in the old world until the late 1600's.  Right after we got transcontinental travel up and running.  Basically, the entire front half of this treatise is arguing who saw what when. 

I found it interesting that the great artists of the time may have had it...but didn't paint it.  Which of us are not consumed with this disease?  A painter would have 1) painted it or 2) had to have given up painting.  That, and they can't tell if it's RA or gout. 

The real interest in this study is the 'Decline of Other Diseases".  He points out the declines in Leprosy and in TB.  Then he starts in on syphillis and notes that was a disease that went from severe to mild over time.  Think Henry the 8th.  Then other diseases. This falls in line with my theory that the buggers have some sort of 'hive mind' in that you can't be truly parasitic if you keep killing the host.  A life form with mutogenic capabilities would over time mutate to lenghten the life line of the host; becoming more symbiotic and less parasitic in it's quest to stay alive.  NOTE: check out page 84/85.  I LIKE this guy; he agree's with me!  LOL

However, his contention that heart disease and tooth decay are not caused by infection and the rates have not dropped is totally erroneous.  They've proved myco's live in both. 

The fact that they cannot cross contaminate a babboon means nothing - many diseases cannot jump species.  Nor did he mention that gorrilla's do in fact get RA and, amazingly, can be cured with antibiotics. 

What is so true is the parts in here about how diet influences our disease.  People who want, go back and look at page 83.  Have I not been saying this!   And look at the info on NSAID's possibly causing these diseases.  Is it any wonder we don't get better if we're taking them all the time?  This guy is all over 'leaky gut!'

Anna - check out 83/84.  Even this guy says RA has a 'weak genetic link.  AS has a strong link.  RA does not.  So...if it's not gene's...what is it?

Pip

That's a good question.

The same month i started to get sick, my mother in law got the same type of sickness.  I have a rheumatoid factor so i was diagnosed with RA, she was diagnosed with CDIP I think it is called.  or CIDP, it's a disease that basicly makes you loose muscle and feeling.

We both got sick when hurricane katrina hit.

Makes me wonder.

to the original poster there is absolutely no evidence that RA is contagious.  Even if the trigger is an infection with RA resulting there is nothing to indicate that RA can be infectiously passed from one person to another.

I found it interesting that the great artists of the time may have had it...but didn't paint it.  Which of us are not consumed with this disease?  A painter would have 1) painted it or 2) had to have given up painting. 

Pip that is the most ludicrous statement I have seen in a while.  Disease, disfigurement and disabilty were much more common in the 17th, 18th and 19th centuries.  To assume that someone living in a time where old was 40 ,epidemics were rampent and injuries such as broken bones led to permant problems would react the same way as someone in the late 20th - early 21st century is ridiculous.  Besides even today many of us are not consumed with the disease and overcome pain and joint damage and disfigurement to accomplish something that we love.  I like to take photographs...I don't phtotograph people with RA.  Painters paint what they want to..does having a disease require them to to paint the disease.  As for being unable to to paint..Renoir had the brush strapped to his hands and he changed his technique.  Matisse when he became too ill with cancer to hold a brush took up collage.  And persoannly the fact that several artists may ave had RA says chemical exposure to me

[QUOTE=Bird Girrl]

The whole gene code is being unlocked, it is an exciting time to have it--


[/QUOTE]

Snort.  Anybody feel any excitement over having it? 

Worse, anybody planning any genetic testing to screen for these 'known' genes?  Would you abort? 

Fair enough.

In this treatise they say the only common ingredient in the paint all 3 painter's used was turpentine.  So...environmental?

But it was fuzzy logic on my part.  In LA there are multiple artists doing multi-dicipline media involving some sort of disease they have and/or are exposed to.  I know of one RA photographer that does almost exclusively RA.  As an artist (writer) I'm consumed with writing about this.  It's why I'm here.  You may not do RA now; but I'm betting you'll come up with something.  It's in us...we have to.  Illuminating the human condition.

Mycoplasma can live in the human body and the body deals with it on it's own forever, without developing a disease.  There are many, many people infected with no sign of the disease.  However, add in anything that effects the hyperpermeable lining of the stomach (diet, stress) and BINGO, the disease manifests.

There are not one, but 2 people, on this board alone that are JRA who's MD's have told them they got their exposure when they were in utero when there mother had exposure to a myco.  If it can pass thru the placenta...it can be contagious. 

I'm not talking swine flu here; I'm talking that we all have a natural resistance that somehow gets breached.  Multi-factorial.

APer's talk of how the genes to activate on exposure/overwhelmed immunity are different in the same families.  To us, that's how different AI diseases show up around the same time.  RA.  Lupus.  Etc. 

Even my OB said the weakest gene (link) will show up first.  So, for my hubby it's LADA.  For me it's PRA.  My niece is UC.  But it's the same critter. 

And when we progress to other AI diseases, APer's think it's just the beastie hitting another system.  How many posts do we see where the doc says, Lupus, no RA, no MCTD.  Our symptoms overlap!  They are trying to pidgeon hole something that's effecting us 'snowflakes' differently.

Now, I'm no doctor - but my baby has vitiligo.  I'm pretty darn sure she got it from me.  Do you think for one minute that thought doesn't FREAK me out? 

Why do I continually research this stuff?  Because of my baby.  I can live without the cure.  Her disease is skin and the only other skin myco is Scleroderma.  I'm not going to be putting my head in the sand until she activates (and chances are good she will). 

We need a cure.

Pip

No excitement.

No on abortion.

Pip

[QUOTE=wysone]My docs have always told me that I "caught" something in utero when my mom was pregnant with me. Who really knows though---they cannot cure it and they cannot figure out why it happens. They told me my chances of passing this disease onto one of my kids were just the same as someone that doesn't have it. But my youngest was diagnosed with it. All I know is that when I was pregnant with him--I had some weird virus that the docs could never figure out---my whole neck swelled up like having the mumps--but I tested negative for it. They did a ton of tests on me--I was about 5 months along and they could never find anything.
Makes you wonder..........[/QUOTE]

Now this is interesting, Wysone. Becky's nutritionist suggested that the appendicitis attack and subsequent antibiotics I had when I conceived Becky may have caused her JIA. Plus, when she had the MMR jab, her neck swelled as though she had mumps and I know that I have read on the UK Arthritis Research Council site that kids with this reaction to the MMR have sometimes gone on to develop JIA. HMMMMM.....

Scroll down for the RA heading. A fascinating read.

"We known for some time there is an major genetic component to RA"

http://www.arthritis.org/genetics-common-diseases.php



BirdyIf there is a major genetic component to RA or JRA, why do all docs continue to say that chances of passing this on to your children are the same as a healthy person?
Or is this different for JRA--because there is a real difference---no matter how old I am--its always called JRA. The same will be for my son. Some people do grow out of it---I didn't. I hope my son does.
Although I can say that my JRA is definitely not as active as it was when I was younger. I mostly suffer now with the residual effects from when it was active and I also have fibro and OA in my neck.despite anecdotes and the expertise of nutritinists there still is no evidence of direct human to human transmission, like influenza, of RA.  There may be a gnetic componant that a parent may pass to child but there is no reports of say a spouse getting RA or any other AI disease from someone elseGenetics probably do play a role in RA. The infection theory isn't as
simple as you kiss someone with RA and then you get an auto-immune
disease (although my BF did come down with adult onset asthma the
same time I "got" RA). The idea is that you get some kind of infection
earlier in life, such as c. pneumonia or strep throat, and the bacteria of
those infection leave their little offspring which are the mycoplasma.
These live dormant in your tissue until they reach critical mass and then
something triggers their "coming out". Dr Brown hypothesised that
colonies of these mycoplasma give off waste which is an allergen. People
with RA are allergic to this (possibly a genetic allergy?) That is only one
theory but it shows how infection can play a large role in AI diseases that
may not be so easily observable in cause and effect.

Also, I have read that many people with RA do not have the RA genes, so
while it would be easier to say "RA is genetic" it may not be so accurate or
as straightforward as that.

Buckeye -

Not infulenza.  Nobody is saying airborn.  Think syphilis or HIV.  You can do the do (unprotected) for a sometimes quite a while...and then some how, you've got yourself a nice social disease.  Why were you able to fight off the disease multiple times (tested clean 6 months etc) THEN one day...you're not so lucky. 

And some LLMD's think Lyme is definitely sexually transmitted. 

Birdy -

The link Nikki/Lynned posted mentioned the twins thing again.  Something like 8% regular and 15% for twins.  That is not genetic.  That has a genetic component...but it is not genetic.  If we were talking 'birth defects' here, I might buy the genetic component as being higher...but we're not.  Like GoGo said, how many of us have been tested for the gene, do not have the gene, but still have RA.  Are they more RA than I am?  Puh-lease, there is something more going on here.  (BTW- I didn't have the gene test, it's on my list, that was hyperbole and rhetoric). 

Another thing we are not discussing is the blood transfusion link.  This was ALSO in Nikki/Lynne's post.  This guy went into it a bit...but the thing that swings me waaaay into the infection connection is the fact that some of the Red Cross's are doing 'white blood cell reduction'.  Not all.  LA is.  Looks like the entire Midwest isn't.  NY is.  Other big cities are.  What do they know?  Remember that Red Cross blood shortage I posted about. 

Why do white blood cell reduction if they DON'T think some things can be transmitted.

Pip

do back to the original question...she asked if her husband could "catch" RA from her...was the disease contagious.   That was the question I was attempting to answer. 

There is some evidence that white blood cells in transfusions can cause cytomegalovirus induced pneumonia in newborns.  The main reason for filtering out the WBC is to provide a purer blood product avoiding an overload of WBC in the recepiants body which may cause fevers

Just in today, they have identified the Lupus genes.

http://www.sciencedaily.com/releases/2008/01/080120160654.ht m

Its exciting because all this research might actually lead to a cure. At least it
will be helpful in diagnosing as many times doctors are unsure if it is RA or
Lupus.

Birdy

Anna/Birdy -

So you and I read and understand these articles differently.

I see -"These results suggest biologic pathways that help us understand the condition better and suggest additional genetic and non-genetic triggers,"   Now, what might a non biologic trigger be?  If not infection or environmental. 

And what does "SNP rs10798269, which is not within any known gene" mean?  Are they talking mitrochondrial DNA?  And how does that help us?

I must congratulate you on the only thing other than O'Dell and his paltry 30M "find the cure' research consortium to even mention the word cure...after "new and better treatment possibilities" of course.

Buckeye -

I don't know if you know I respect you and the stuff you post.  But this is not the way the Red Cross is moving. 

This is from that Red Cross article I posted.

Regional blood banks sometimes add tests or procedures not yet required by the FDA. Because of Southern California's large immigrant population, the Red Cross, for example, tests for the parasite that causes Chagas disease, which is widespread in Latin America.

The test adds to per unit. The local Red Cross also performs a process called leukocyte reduction to filter out white blood cells that can cause fever or other host immune reactions.

The article says "other host immune reactions."

Here is a link to the Red Cross - note how many countries are doing this now - as well as how it is theorized that it helps protect against viral AND bacterial transmission.  Again, nobody is saying this...but they're all doing this.  It makes one wonder.

As for the original post, I'm sorry, but my hubby came down with his 'infection' before I did. 

Pip

Duh! http://chapters.redcross.org/ca/socal/pdf/BL00sp.pdf

Pip!39467.9051736111

Here's my story....I was diagnosed with RA at age 25; however, had symptoms about a year and a half before.  My infant daughter had Roseola (not sure about the spelling) which is also known as "baby measles."  I came down with the adult version of measles and was very sick for over a week.  It left me with what my family doctor called "arthritis-like symptoms" in my feet.  I was tested for RA, but nothing showed up.  I wanted to get pregnant and the said my tests were normal and the symptoms would gradually go away.  I was told it was fine to get pregnant at that time.  (All this happened almost 40 years ago.)   I did conceive and after my second daughter was born and reached one month old, the RA systems hit.   It was at that time that I was officially diagnosed with RA by a Rheumatologist.  He said at the  measles didn't cause the RA, but that they "triggered" it.  After reading the previous postings the idea of a "trigger" setting off RA does make sense.

Sharon

I had a stress induced trigger.

I was dealing with the death of my favorite aunt, at a football game. My cell phone rings and my mom is hysterical. She just got a phone call that my sister Debbie died in Katrina. She lives in MS right by the Pearl River where the storm hit hard. I tell my mom, "calm down, I'll be there". I proceed home in my beautiful baby blue ford windstar van and hit a deer. My van was totalled. I called daughter, still at the football game.She came in her car with hubby and son. We went home and we were all upset, crying and my phone rings. It was my sister Debbie. She was alive! She was standing on top her truck and finally got a signal to get through. She was fine and it was a nightmare of getting her back here. The next morning I awoke to my right thumb and finger very swollen, painful and red. I went to urgent care and the dr there said it was infected. She gave me antibiotics and sent me on my way. Only my hand wasn't better, my feet started hurting and I went back to urgent care. Dr. did blood work and xrays which showed up ra in toe, thumb and finger. He referred me to rheumy.
So, I don't believe in the whole contagious theory. I know my ra was brought on by stress. Anybody else think that?

Just throwing it out there. LOL

I've neve said that a trigger for RA wasn't viral or bacterial.  They can be as well s environmental, chemical etc.  I believe there are multiple triggers of a malfunctioing immune system.  It still does not indicate that anyone has ever caught RA from another person or has had it directly transmitted to them through the blood supply.

Pip, by host they mean Host for parasites. So the whole white cell
business in South America is because of parasites not auto immune white
cells. Lucky for US residents we don't have too much problems with being
Hosts and thus no concern for the immune white cells.

Buckeye is right, the trigger can be anything. Viral, Bacterial or stress like
Sharo. Gosh what a day for you. Having all that happen explains it.

It is not contagious. No one is going to catch it from anyone. It is genetic.
As has been stated, everyone in the research arthritis field--the
professionals, you know, real medical people not wanna bees.

Robin

CinDee:  My impression so far has been that RA is stress-induced, very little mention of any other factors.  How do you reduce stress like you just described?  Impossible.  That's why I am open to genetics, hereditary, infectious, God's Will, punishment (j/k).  I am glad that situation turned out the way it did, except for the start of your RA.  I guess we are just walking stress timebombs.  Cathy

PS Robin/Becky, you just made my ignore list. 

justsaynoemore39468.3577662037

Sharo -

This is too cool (weird?).  My baby had Roseola and that's when her vitiligo manifested.  And this is before my hubby and I got our stuff.  So...like I say, it's not one thing you can pin down, but the infection connection is there.  And that hormone link.  I really wish that would get studied more.  How many people post it came on after having a baby?

Cindee -

How about this scenario?  It's like we're in a boxing ring and we have gloves on etc.  We're fighting an unseen opponent.  But like in any good boxing movie, the good guy has to go down a couple of times before the ref steps in and it's a 10 count.  I've posted before that stress was a HUGE factor for me.  At the time I was under a gargantuan amount of stress in my personal life.  Punch one!  And like the movies, my head snaps back from the solid hit, sweat flies (it's always Slo-mo) and the fighter is groggy.  The diet was bad!  I was eating fast food, junk etc. because of my job and it's hours etc.  Solid hit to the bread basket.  Sweat flies!  And finally, for me, that stupid tooth and it's bacterial infection!  Another punch lands.  Add in the 3 Z packs for pneumonia and NO probiotics - and BAM - another hit to the bread basket.  I'm down.  I'm on my knees, the symptoms start and I'm overmedicating with Aleve.  My liver can't do it's job, and I hit the mat.  The ref is counting...but I'm in the ER seeing doc after doc and nobody is listening to the tooth story.  With my disease, if I would have had antibiotics AND probiotics ASAP, I could have beat this off.  But time runs out...and I lose.

It took A LOT for my peasant gene's to be overwhelmed.

Buckeye -

That 1989 link from Nikki/Lynnn mentioned blood transfusions and the higher incidence of an AI disease, particularly RA.  I didn't have a transfusion so didn't mention that part.

I think the Red Cross, caught with their pants down over HIV etc, are a lot more proactive than they would have been two decades ago.  Everything is linking to the white blood cells.  All the current, cutting edge research not dealing with 'therapies' is showing myco infection etc.  Run a search on 'contaminated cell lines'.  It's a BIG problem for researchers and businesses are moving in to fill the void.  Want to know my thoughts on why stem cell therapy can fail 1/3 of the time.  Myco's - pure and simple.  Thank God LuAnn is safe! 

Yes, you are right, there is no case study, as of yet, saying this person got RA from this blood transfusion.  And how they would link something that needs another trigger (stress, diet, environemental) to the transfusion a few years earlier is beyond me.

Nor would anybody be willing to do the linking.  I just read a story in the LA Times about the HIV kids that got it from Ceder's Sinai in LA because Ceder's was not following the new guidelines and here they are - 15 or 20 years later - and still the lawsuits are not over.  The kids are now young adults and dying.  If they all die - Cedar's doesn't have to pay, do they?  Mind you, I truly respect Cedars but the way these kids have been stonewalled is atrocious. 

Instead, the Red Cross, and the blood banks around the world, are quietly moving to leukocyte reduction - and removing yet another possible infection avenue.  I'd be interested in seeing if RA/AI rates take a huge drop over the next 20 - 30 years that somebody somewhere starts to wonder about. 

Finally - why would the Red Cross in my old town refuse my donation because I have RA?  I have rare blood and they always call to get it.  But RA - I'm off the list.  Also Lupus.  Remember that old post where we all went and looked at the local Red Cross's?  There was a goodly portion that said "No" to people with autoimmune diseases.  And a portion said 'Yes'.  Were those just policy differences or did they already have this leukocyte reduction in place?  In LA, I could donate because they do that leukocyte reduction - but I no longer feel comfortable doing this.  If you look closely at the link to the Red Cross I sent you - they aren't sure, but think it will help, for bacterial and viral transmission.  But they don't know.  So...I donate and I give somebody this hell of a disease?  I'm not putting this on my conscience. 

Birdy/Anna/Robin -

Please, look again.  The Chagas (spelling?) was a parasite.  The article says 'other host reactions'.  As for American's being parasite free, I beg to differ.  I'd just seen American research linking RA symptoms to parasites.  Just think, maybe a few parasite cleanses and the symptoms drop. 

But I have a question - what is your personal investment in believing the medical establishment?  How much better are you from when you first became ill?  I might buy you have a mild case - but those of us with severe cases are NOT getting better on their meds.  It works for a while, they add in yet another med, then another, then one med fails, then they switch.  How many times must we see 'I'm getting worse' before a light goes off and we say, OK, change diet, add probiotics, etc and we try things that our MD's didn't mention?  It's a therapy, not a cure, and does not address a probably cause, but only symptoms. 

Even if AP turns out to be wrong...at least I think I'm going for the cause.  How do people justify only going for the symptom?

Pip

[QUOTE=Pip!]

But I have a question - what is your personal investment in believing the medical establishment?  How much better are you from when you first became ill?  I might buy you have a mild case - but those of us with severe cases are NOT getting better on their meds.  It works for a while, they add in yet another med, then another, then one med fails, then they switch. [/QUOTE]

STANDING OVATION!!!!!!

But I have a question - what is your personal investment in believing the medical establishment? How much better are you from when you first became ill? I might buy you have a mild case - but those of us with severe cases are NOT getting better on their meds. It works for a while, they add in yet another med, then another, then one med fails, then they switch. How many times must we see 'I'm getting worse' before a light goes off and we say, OK, change diet, add probiotics, etc and we try things that our MD's didn't mention? It's a therapy, not a cure, and does not address a probably cause, but only symptoms
Am i better off, since i first became "ill"..YES! Thanks to my doctors, and a biologic...And i never thought of it as "ill"...
They haven't added any meds for me, i'm better, and have decreased them, so each case is differant,

What is the standing ovation for?..There definately is a genetic link in my case, my mom had RA..
What is wrong in putting your trust in your doctor?..
I'm in a controlled remission, cutting back on some meds, and have no signs of inflammation, and have skinny, unswollen fingers..
Any medical advice given here, is not by a medical professional..What concoction to drink?...Have your doctor check it out !!
My RD goes by proven scientific treatments, and it has worked for me, and made my life comfortable..

Linda -

My Board certified AP doctor goes by proven scientific treatments. 

Seriously, I am glad you are doing well and I truly hope it continues.  But most docs just want to hand out scrips and we hear horror stories here everyday - people being ignored, people in pain.  Again, I'm not saying genetics are not involved; I'm saying the genetics are minimal. 

What is wrong is putting trust in a doctor without researching and figuring out your options are and/or what might help you heal.  In my personal experience - I should never have been prescribed 3 Z pac's without some MENTION of probiotics.  The research is there.  My doc was apparently not up to speed. 

This thread is not about 'concoctions'.  Nobody is trying to sell anybody some magic little pill to make this all go away.  This is about figuring out what works for YOUR body.  But ask a rheumy if dietary changes work...and most say it's 'not proven'. 

If you were able to reduce your meds with probiotics and dietary changes, would you have still been willing to take a biologic?  I would not have.  Then you'd have had something in reserve.  Which is what I'm trying to do...something in reserve if AP ever fails me.  Do I think it will fail me, NO, but I'm not taking any chances.

Hugs,

Pip

What I don't understand is if you have been given a diagnosis of a disease that is chronic, debilitating, no-cure, disabling, and finally kills you, why you wouldn't want to be as informed as possible and try to find ways of helping yourself through diet, exercise, different medications, alternative treatments.  I guess laziness by only taking medical prescriptions and pessimistic acceptance that you have no choice or control over your own body is the only answer to that question.  That's the nice thing about these boards...Everyone is entitled to their own opinion, no matter how misguided and uninformed they may be. In my opinion, making generalizations and assuming facts that are not supported by evidence, serves no purpose whatsoever.

It would be very helpful to remember that not everyone's experiences with RA are the same, nor are their outcomes.Lynn4939469.2289583333

Thank you Lynn for remeinding me to be more tolerant of Anna.

Pip

Everybody here should be a lot more tolerant of other people's opinions and choices. I do what works for me. Now one here has any idea of what goes into anyone's choices concerning how they chose to treat their RA. I have some very strong genetic issues related not only to RA, but also heart disease. I've made my choices based on the information that I read, what my family thinks(one of my daughters is a biochemist) and what my doctors have suggested.

I think that a wide variety of things may help all sorts of people with RA, whether it be diet, exercise, meditation or pain meds, etc. Again, I come back to the idea that different meds work or different people...I can assure you that I'm not lazy, easily influenced, or pessimistic about my illness.

Lynn




I believe that ignorance is the root of all evil. And that no one knows the truth.

Molly IvinsLynn4939469.2499305556

That's great Lynn, but unfortunately most people are.  And we've seen JAMA studies that show how easily MD's are influenced in there prescription habits.  How much easier is it for the average Joette to just 'trust' that her doc has her best interests at heart?

I may be wrong about this...want to place a bet on where the medical establishment in 2038 will stand on the issue of infection in these diseases?  I'll still be here.

Pip

P.S.  Please take a look at Buckeye link to me.  You might find the one I think it is (not sure until she responds) interesting.

2038...I'll be 80 years old. Not so sure I'll be all that interested in this kind of thing at that point :)


[QUOTE=Lynn49]Everybody here should be a lot more tolerant of other people's opinions and choices. [/QUOTE]

Now, now....I think you missed us!   AF has been so slow, now you and Anna are over here. 

It doesn't seem that the regulars here call it intolerance, but maybe I am mistaken.  Until recently (pretty much unfolding on this thread), this was a great board to learn about everything!

I've been here Suzanne. How much I post just depends on how busy my days are.....I didn't realize my posts stopped anyone one from learning anything. It's pretty amazing that I have that much control...LOL

[QUOTE=Lynn49]I've been here Suzanne. How much I post just depends on how busy my days are.....I didn't realize my posts stopped anyone one from learning anything. It's pretty amazing that I have that much control...LOL

[/QUOTE]

Oh no, you have  misunderstood!!!!  I meant about learning without so-called intolerance. 

What I KNOW is that I cannot post about our personal experience about AP on AF without someone who has never tried it posting that it doesn't work, or something disparaging to that effect.  What I KNOW is that it used to be that way  on this board, until recently.  What I KNOW is that there is still one more arthritis board that I post on that is supportive and tolerant of all therapies, and neither you or Anna/'screenname of the week' post there.  

So, I guess I do believe you influence tolerance vs. intolerance.  Not learning at all.  You post a lot of things I learn from, and I have thanked you many times!  Unfortunately, the intolerant threads get more hits, don't they?

It is awful to feel like you are going into battle, just because you talk about your own personal experiences, or what experiences got you to where you are.  When you posted you were feeling better on Rituxan, nobody slapped up a list of its side effects, did they?  Of course not.  People are happy for you.   Take care.   

Someone posted something about the Red Cross not accepting your blood for donations because of RA--the reason isn't because you have RA--its because of the meds you are on or have been on in the past.

Wysone -

That didn't come up in the thread we had on this in the past.  Do you have any info on the meds they won't take?

Hugs,

Pip

Pip,
I read in it your post--page 4 of this thread. Something about the Red Cross in your town not accepting your blood.
I don't know what the exact list of meds is that they are non-accepting of--but I know its the majority of meds that are prescribed for both RA and Lupus.
They have never accepted my blood also--and that was the reason I was given. I was only allowed to give blood for reserve for myself before my knee replacement surgery--which ended up not working. I still ended up needing more blood after the surgery and mine wasn't sufficient.

Marcy -

See, they didn't tell me it was the meds and in my hometown and I don't think any of the others got that answer either.  Maybe I'll run a search later today and try to figure out what they are.

Hugs,

Pip

Back to the Anna/Nikki thing - I'm feeling ornery.  :-)

I think Kid Rock says it best in American Bad Ass (skipping the questionable stuff for cleanliness.  :-)

No rogaine and the propane flows
The chosen one
I'm the living proof
With the gift of gab
From the city of truth
I jabbed and stabbed
And knocked critics back
And I did not stutter when I said that
I'm going platinum
Sellin rhymes
I went platinum
Seven times
And still they ill
They wanna see us fry
I guess because Only God Knows Why
Why why why why

 

Well Pip, I'm feeling a little ornery too...Must be the cold weather.


Paranoia, paranoia
Everybody's coming to get me
Just say you never met me
I'm running underground with the moles
Digging in holes

Hear the voices in my head, I swear to god it sounds like they're snoring
But if you're bored, then you're boring
The agony and the irony, they're killing me

I'm not sick, but I'm not well
And I'm so hot, cos I'm in hell

I'm not sick, but I'm not well
And it's a sin, to look this well

Green Day

I'd love to play more but I'm off to the grocery store and then some retail therapy :)

Enjoy the day :)

Lynn

So...what AD's are you on?

Pip

Lynne and Anna/Birdy/WhateverNameOfTheWeek, it does seem like you
selectively choose what real bonafide medical data you will accept as such.
AP is a clinically proven medical therapy. If you don't like it that doesn't
chnge that fact (yes, it's a FACT, not an opinion).
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