Update as I approach 16 mo. on AP

[Tiff]

Hello dear RBF group.  I thought I would post an update and get any feedback you all might have on my plan.  It has been a while since I posted much as I have been following age old advice, you know the one, ?if you don?t have anything nice to say, don?t say anything at all.?  😛

 

I have been on AP for 16 months on the first of March.  As some of you might recall, after 4 months of getting worse on daily dosing, I got much better and enjoyed about 4

[Donna RA]

Tiff,

Sorry to hear you're feeling bad.  I've been on AP 22 months, and felt the way you are feeling now.  I recently found out that Candida is a problem in my case.  I always knew that I had yeast, and thought using diflucan weekly would help. I have come to realize I need to concentrate on getting rid of the yeast, before I will have a signficant effect on the RA.  My question is, have you had testing for Candida, or other co infections? 

I believe in AP, it's just for some of us, other issues must be dealt with first.

Hang in there.
Donna RA AP 22 mo
 
:blush:

[Suzanne]

Raw goat milk.  That was the type of thing they asked if my daughter ever had, when she first got sick.

I'm sorry you aren't doing well right now, but do you think it is possible you picked something else up?  They said she could have had something like that six months prior, and the symptoms would just be showing up.

 

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[casey]

Hi,

We have a farm here and milked animals for most of our lives from 40 cows to 200 goats.

I DO KNOW raw milk of any kind contains bacteria of all sorts. It is pastuerized to kill any bugs.Top of the list is e-coli but there are many others. Some say the raw form is better but being in this business, i would never drink raw milk of any kind.

Goats also have diseases such as caprine arthritis encephalitis (CAE) resulting in arthritic symptoms which causes them to usually become paralyzed in the back end of the body from arthritis and ….you can guess the rest. They also are notorious for  caseous lymphadenitis that allows for fluid filled lumps of infection usually showing in swollen lympth glands. Very few , if any herds of goats are free of these diseases and yes we have seen it here.

Having said that, all animals have something and many say that these things can not be passed from animal to human. I dont believe that.

I would look up CAE , caprine arthritis encephalitis on google and you will see what i mean and stay away from raw milk. It may be the answer to this problem.

Casey

 

[casey]

Tiff,

go to http://www.vet.uga.edu/VPP/clerk/logan/index.php

[casey]

Tiff,

Hope i didnt scare you with that website. CAE is a virus not a bacteria. I dont believe this one can be passed animal to human. Just wanted to give you some info about what goats have and this is by no means the only thing. Vets work with this every day and so do all dairy goat farms and they have never come across a case (human) with this virus. We dont have CAE here in our house and milked goats for 7 yrs when they had these symptoms.

Just want to emphasize not to drink raw milk of any kind as all raw milk contains many different forms of bacteria.

Casey

[Tiff]

Okay, okay, let's get one thing perfectly clear.  I never had a single drop of raw dairy anything until 2 years after I got sick.  When I started drinking goat milk last year I got better and gained a much needed 10 lbs.  Recent news has it that a well known dairy got some folks sick with their milk, but NOT their raw milk (which they did sell).  It was their pasturized milk that got people sick.  It is an over rated procedure that promises results it does not always deliver.  It does, however, derange the proteins in the milk and kill off lots of good bacteria and enzymes that make milk a nutrious food.  If you want more information on those ideas look up the Westin Price foundation or look at Dr. M's website (I don't like him in general, but I agree with his ideas on raw milk).  You can also read Jordan Rubin's books on how he cured himself of Crohn's disease.  He is a big advocate of goat milk products.  This issues is far from settled, but one thing I don't worry about is if my symtoms are caused by goat milk.  People get sick more often, indeed a lot more often, from spinach.

But then, this is exactly what frustrates me.  This inconsistent information.  Diet methods of treating arthritis are the most annoying of all.  Everything contracticts everything else.  Eat lemons, don't eat lemons.  We are too acidic, we are too alkaline.  Tomatoes are good.  Tomatoes are bad.  Raw food.  Cooked food.  Calcium from skim milk – no wait, that causes PROSTATE CANCER.  Whole milk doesn't.  Diary products kill people (my 200 lb hubby must be an odd exception).  Grains – forget that – if it tastes good drop it immediately!  I stopped gluten and ended up at 84lbs, and I thought I was eating enough and felt generally full.  But I DREMPT about food every night.  It was torture!  What a bunch of bunk it all is.

I'm sorry I bothered to post.  I might have known that being sick was my fault.

 

 

[Cubby]

Tiff, I'm new here from another board.    I have diffuse systemic scleroderma.  I have been to H— and back!   Don't get discouraged.  Sometimes, people post or give advice because they so desperately want to try to help.   Food is a weird and wonderful thing.   One food may help one person, then hurt another.   I say, do what you feel and know is right for you when it comes to eating.   

[Suzanne]

[user=45]Tiff[/user] wrote:

 I never had a single drop of raw dairy anything until 2 years after I got sick. 

 

 

That is why I asked if it is possible you picked something else up.

I'm sorry I posted, too, because I did not intend to upset you. 

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Tiff]

No, Suzanne, I am sorry about my obviously over-reactive post.  I knew that no one would have much to add that I don't already know.  I've been reading and studying this for about 20 months.  I'm no newbie.  The only question left for me is who to believe.  And I am starting to feel like I just have to accept a very, very slow and painful death.  I just found it completely odd that one tiny thing I mentioned made such an issue.  And I guess I am perplexed that more people on this board are not aware that many people consider raw milk products to be far superior to mass produced, hormone laden, antibiotic fed ultra-pasturized diary products.

Our food supply is in serious trouble.  We are completely clueless as to what we are eating anymore, and the more I read the more scared I get.  And it isn't just in the politically incorrect foods like dairy and meat, produce is just as risky, like I mentioned.  You would never believe the insanity that goes into producing the huge amount of almonds that we eat.   Bees have to be shipped from all over the world to pollinate the flowers.  Then they are shipped home – after having interacted and spread diseases to each other in what amounts to one huge bee o r g y.  Doesn't that sound very scary?  I think it does.   I have just tried to get my food more locally and from smaller businesses that can't look the other way when stuff like this goes on.  And a very small, local goat dairy is one of the few available to me.  If I could, i would buy beef directly from a local farmer, but cattle aren't raised around here., and neither are much produce.  Check this out!  Is it true?  I don't know.

But please forgive my harsh post.  I am having a rough time.

 

Mystery illness connected to pig brains

Dear Friend,

If you've got a weak stomach, you might want to stop reading?especially if it's close to mealtime. This one even made me a little queasy.

Workers in pig slaughterhouses in both Indiana and Minnesota are being afflicted with an illness called progressive inflammatory neuropathy ? symptoms range minor weakness and numbness to full-on paralysis. And as if a mysterious neurological disorder popping up in a food processing plants weren't disturbing enough, what the Centers for Disease Control has identified as the suspected cause of the disease is equally unnerving. Read on if you dare (and don't say I didn't warn you!).

Seems as if all these workers have one thing in common: They all work at the “head table.” No, I wouldn't exactly call it the place of honor?it's the area of the plant where the pigs' heads are processed with a technique that involves shooting compressed air into their heads until their brains spill out (it's called “blowing brains”).

If you're wondering how that could make someone ill (besides the obvious nausea), I'll tell you: The process produces splatter and aerosolized brain material that the workers are exposed to, and their immune system produces antibodies to fight against it. Problem is, that nasty brain matter is similar enough to your own body's tissue that it ends up attacking itself in the process.

Even though nothing concrete has been proven, the link between the compressed air brain removal technique and this illness is so strong that ALL the pork processing facilities in Minnesota, Indiana, and Nebraska have voluntarily discontinued this practice. Right now this story is like a small-time, modern version of Upton Sinclair's The Jungle. What other dangers are these pork processing workers being exposed to for the sake of the efficient dispatch of thousands of pigs a day? For once, the processing plant owners have shown the good sense to put an immediate stop to the practice before things get any worse.

But there's another angle to this story that no one's talking about.

Keep reading?

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Many of the workers who complained of the symptoms have since returned to work, but their current condition is still unknown. The Indiana Department of Health's epidemiologist who has examined these workers has declined to comment on their status because of “patient privacy laws.”

True enough. But I'm sure there's another reason why we won't hear much of an outcry from those afflicted with this strange disorder ? I would guess that every last one of these workers is an illegal alien. If you doubt me on this, just think about it: What American plant worker can you imagine contracting a work-related illness and then not trumpeting their next legal step all over the national news? Nope ? the poor suckers who've been breathing in whatever nastiness is in pig brains are keeping quiet so they won't get deported.

So far, neither state health officials nor the CDC has raised any red flags about the potential danger of this illness spreading beyond the slaughterhouse and affecting consumers. But it does make you wonder. This isn't the first time I've told you about unhealthy practices in food processing plants. All the more reason to know where your food is coming from?and to stay as far away from any and all major killing operations as you possibly can.

Never letting the media hog a good story,

William Campbell Douglass II, M.D. [/align]

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[Maz]

[user=45]Tiff[/user] wrote:

 

The last three weeks have been hard.  My hip kept me bed ridden for two days, then I got a cold  (unusual for me) but was pain-free for a week, then this week my other hip hit even harder.  Without any break my shoulder and left middle finger have followed in quick succession.

 

 

Hi Tiff,

Thanks for sharing your update and I'm just sorry to hear you're in so much pain. I'm having a bit of a setback, too, since I got a pretty bad flu about two weeks ago that turned into a bronchitis. What is weird about this is that I've been cold/flu free since this all started for me, too, so I wonder if my immune system isn't quite as on guard as it was….could greater susceptibility to colds/flu mean improvement? 

The other weird thing was that while I was suffering the worst of this flu, my joint pain diminished significantly, as if my immune system was preoccupied fighting that instead of my joints. Now, as I'm slowly getting better from the flu, all hell has broken loose in my joints. I'm in pain everywhere and feeling rough. Just thought it weird that our pattern of semi-remission with the cold/flu has resulted in a mega flare after the fact.

Your plan to clear the yeast and detox before starting MP sounds great! Definitely worth a go with this as a long range plan.

Just wondering, Tiff, but was Lyme/coinfections ever suspect for you?  I know I sometimes sound like a parrot repeatedly questioning this possibility, but your palindromic symptoms with periods of remission is remarkably reminisicent of chronic lyme.

Hang in there…I'm going through a rough time of it with you. Had to drag myself out to physio today in the middle of snow storm we're having up here in the NE and felt like crap and then go get tons of blood drawn after. Wanted to just curl up in bed and have a poor-me day….dread to think what my bloodwork is going to look like this month.  

Anyway…can't offer much in the way of help, but just wanted to say I totally relate to how you must be feeling, but that your new protocol sounds really, really good. Go for it!

Peace, Maz

 

 

[casey]

Hi Tiff,

 sorry to have upset you with my post. all i was trying to do was to give you some imformation from a farming perspective. you mentioned the raw goat milk and i guess i shouldnt have expanded on that.

And yes , there is that contradictory thing about, acid vs alkaline, lemon vs no lemon, gluten vs…and the list goes on. I have that same problem to trying to figure out which should be which though i have come to the conclusion what works for one may not work for another and vice versa.

I have learnt alot from the others on this board and am very thankful to have them all.

Again, sorry to have offended you.

Casey

[Maz]

Tiff…do you happen to still have the source of this article?

I'm going to send it to my Dad – he's a retired vet who was a pig specialist. We actually lived on a pig technology institute in Taiwan for about 18 months when we were children and my Dad was teaching farmers there. My brother has MS and his neurologist actually suspected something like this. This could be an important link for him…and maybe me, too.

Thanks!

Peace, Maz

[lynnie_sydney]

Dear (((Tiff)))
I am so very sorry to hear of how much pain you are in and how confused you are with all the conflicting info. I wont burden you with any more suggestions especially dietary ones.
I am going to see a new AP doc in early April and, whilst she does work on dietary issues to get the immune system working FOR you again, she also has many other perspectives. She trained many years ago in the US and I believe was instrumental in training Dr F. I will keep you posted (by email) on any information that I believe may be of value to you – because, as you know, I also have palindromic RA and have had it for about 20 years now.
I will try NOT to discourage you or overwhelm you with info and you can just say the word any time you want me to shut up. Hang in there.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Tiff]

Everyone, especially Casey,

Thanks for your thoughtful posts.  I feel like a petulant child who just had a nasty outburst.  Obviously I am at the end of my last nerve.  Please accept my apology as I know you did not mean anything but to be helpful.

 

Maz,

The cold flu thing makes me wonder, too.  It was odd to just be sick like everyone else for once!  😀  They did check me for Lyme, but just with the standard testing.  Since I have been on ABX for so long, I can't imagine much of the testing they do for infections with me will be of any value.  This new doctor is not big on testing for infections as he thinks they are not very reliable.  I don't have any source for the article.  It was forwarded to me, but you might google the doctor's name mentioned at the bottom, or maybe other parts of the article and see what you come up with.  I do recall your story about your unusual childhood.  Casey is right about one thing, raising large numbers of animals means having lots of diseases and bacteria/viruses to contend with.  Farming/ranching should never grow alarmingly large, but it has.   In another odd front, I read an article on FOX about a man with a brain amoeba that is extremely rare but very deadly.  He apparently got it from the soil.  All in all this is why I picked my avatar – the fish with the dynamite in it.  I feel anymore like I am about the explode all the time, but that is true of all of us.  I just actually do quite often!

Lynn,

I don't know how you have delt with this so long!  And you are so upbeat and strong.  It amazes me.  I am eagerly awaiting words of wisdom from your doctor!  Thanks for the reply!

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