Update as I approach 16 mo. on AP

[SusanSD]

Tiff,

    You have persevered a long time and I don't know how you do it, but don't give up. You have a good plan with your doc and hopefully, better days are ahead. I am sorry that you've had such a rough time. We all want to get better and fast – we all deserve to live life happily.

   If I lived near you, I'd take you to a spa or at least unplug the foam and draw you a nice relaxing bath. Your caring for your mother might have taken a toll on you so now you can take care of yourself. Hoping you'll feel better soon!

[John McDonald]

Tiff, This is just plain hard. But you are smart and determined and you will defeat this ill. I'm sorry that this week has been so bad. I hope the weekend will be much better. -john

[lynnie_sydney]

Tiff, we just sometimes need to vent and that's okay. It's also not bad to remind people to be mindful when they rush in with their latest theories – something we all have a tendency to do – which can just overwhelm someone and/or p*** them off! There is so much out there that contradicts something else and so it goes on. ….
BTW I became symptom-free on sulfasalazine for a few years, which is something I didnt want to stay on forever. But it is something you could also consider (see my testimonial for a few details on it and how I took it). It took about 3 months to really kick in though. IMO it is still better than alot of the other meds – and, for me, NSAIDS were useless and even cortisone didnt even touch the sides. So, a fellow PRA sufferer can tell you that, for me, it did work.

I will let you know of anything I glean from my AP doc that I believe will be  relevant/interesting to you and my previous offer still stands. Just tell me to shut up any time you dont want to hear more. Lyn

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)

[Maz]

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

Everyone, especially Casey,

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!

Thanks, Tiff….yea, I was kind of surprised I got this flu, too…I've missed everything else I've been exposed to since getting RA, so it's very weird. MP seems to have interesting theories about this type of thing, so maybe you'll be able to educate us all a bit about this stuff when you get started.

Your insights about “big farming” are probably very close to the truth…I also suspect all the unnatural modern feedstuffs, hormones, steroids and abx they feed these poor battery-farmed critters. Investigations into mad cow disease in GB in the late 80s, early 90s came to the conclusion that it was caused by feed that was actually recycled cattle meat waste…they were feeding these cattle – herbivores – their own kind! It's truly disgusting and an abomination against nature when you think about it.

Let's hope we both feel a bit better soon. I'll keep you in my thoughts.

Peace, Maz

[Bill]

Tiff,

Keep fighting you will make it. Definitely  can understand your frustration.

I hope Im not being the bull in the china shop here, If so, I hope someone will help me pull my foot from my mouth.  But I appreciate all the post's. The emotionally supportive ones, the venting ones and the sharing of information.

 We certainly want to be sensitive and not rush in and overwhelm someone with info.On the other hand if we were ever to quit sharing and debating controversial information we all lose and the board becomes strictly emotional support. Personally I enjoyed and learned from both sides of the “raw goat milk issue” and found Casey's and Suzannes post's quite interesting. Tiff's response was quite thought provoking and  it was good to hear that side of the raw milk issue. The story about the pig brains just blew me away, and reminded me why I will never touch pork again. Yike's!. Then from this we hear of Maz's story about her brother and living on a pig tech.institue. This could be vital info !

My tortured point ? We  are blessed to have some wonderfully supportive and empathetic people on this board.  But let's keep learning and sharing controversial information as well.  It is in considering all these ideas, treatments and info that we will eventually find the most definitive and effective soloutions.

 I thank everyone for their contibutions in my ongoing education here.

Thanks again,

Bill

[lynnie_sydney]

As usual Bill,  you have a wonderfully sane perspective and, on reflection,  I agree with it entirely.

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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)

[casey]

Dear Dear Tiff,

No need to apologize!

I know exactly where you are coming from and i think it is all in part of the confusion of what works for us,what doesnt, what we keep trying , what doesnt work, why it doesnt work, what else is wrong and for me, how our lives will end.

You see , for me, i was diagnosed last yr with MCTD and 2 months later, my 12 yr old son had lupus showing in his blood. On top of that , my mom has lupus and RA. So you can only imagine how this is a stuggle to me. And i have more emotions, confusion, outburst, you name it.

Nobody says its easy stuggling with this and it is especially harder for some of us with a child with it too but to me, this is where i have had so much help and will keep perservering like you are , to get where we need to be.

You talked about MP! So you are continuing on. That says something.

I recently found a doc for my mom who deals with this stuff. My parents are older and cannot travel far. This doc only does MP as he is not familiar with AP…yet. The first thing they are looking at with her next weeek is chelation for heavy metals. They have found them in every single patient they treat. When i went to my first doc who was familiar with autoimmune problems, (not the reg docs of course) he wrote down 3 suspects on a paper for contributing to what i have. They were  occult infection, heavy metal toxicity and food allergies. I had to switch docs as he would only treat occult infection with IV hydrgen peroxide and that was an option i chose not to do.

My new AP doc , for both my child and myself tests and treats all of these things as she believes we are all burdened with more than 1 prob. Problem  is , trying to find each burden there is and there can be many and never the same for one person to the next. So goes on my trial, with my whole family but i will not give up , though there are days i feel like you do and many moments in between.

You will get there and will have frustration , depression, anger and all the other emotions we never heard of. I  can relate to you and i understand!

Casey

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