Encouragement for everyone

[roserdRA]

Some of you may or may not remember my username. It has been a long time since my last post as I am busy with my life.

Long story short. I had a terrible pain in my foot and 3 months later it was everywhere. Fingers, hands, wrists, elbows, shoulders, knees feet….with the usual waxing and waning of RA. I showed high Anti-CCP and RF.

I educated myself as much as I could about that illness I had not even the slightest idea of. After stumbling about AP and that a benign Antibiotic might do the trick I looked for myself into the mechanism of RA and I got convinced that it's not my body that all sudden changed it's mind and started attacking itself, I was convinced that some pathogen was altering something and my body tried to fight it, but somehow could not get the upper hand.

I tried to keep Ibuprofen to a minimum as it inhibits red blood cells and those are also used to fight pathogens. (Red blood cells where found to also fight the Malaria pathogen, which was previously unknown that they even do that). I figured out that Anti-CCP is not unique to RA as it is also found in patients with Leishmaniasis (another terrible disease), which is clearly caused by a known pathogen.

3 months after onset of severe RA symptoms (I even had to sleep with wrist braces as every movement caused severe pain) I convinced my regular Primary Care Doctor to prescribe Minocycline. I started to take 100mg/twice a day of generic Minocycline and except for a few “Hick-ups” (dizziness mostly) I had no major problems with it.

The following year was an up and down with severe pain episodes, the only change was actually only in that the stretches of good times in between got longer. After a while the “severe” got less severe and after some more time it was disappearing in some joints all together. About a year ago I dropped the morning dose and went on just one 100mg Mino in the evening before bed. I am still on that dose and haven't had any pain pill in over a year now. My RF and Anti-CCP (which I had tested about every half year) dropped consistently, RF was a little fluctuating but who cares, the overall tendency was that all was going down.

Bottom line…My last RF was 14 and my last Anti-CCP was 7 and that was almost half a year ago and I haven't had even so much as anything in the past half year. No swelling or pain anywhere. I am still on my ONE pill a day of 100mg in the eveing and I am going to take it until all my bloodwork is zero and maybe even stay another year on it – just to make sure. 🙂

Oh, by the way, from beginning on I had absolute no doubt at all, that I could beat this illness and never had not even wasted one thought on just “managing” it.

My believe is “If one can get sick, one can get well…just a matter of time”. Once this site had helped me to find a Doctor that keeps me on Minocycline I was good to go.

I remember my first visit. I told him I will beat this and he answered:” I can tell that you have an unbelievable drive” and I just laughed and said ” No- it's all about willpower and having no doubt that something works…the rest is patience”

May it take another 1 or 2 years until it's gone, I don't care, as it's really non-exist already. ( I never changed my diet, which is high on fruits and vegetables anyways, I took no supplements except extra Vitamin-C once in a while, but I stuck pretty much every day with yogurt and/or Kefir to replenish my good gut bacteria, raw Sourkraut is good too if one can take it ).

I know this is a very long post, but also know that you all need to know about things like my case. My message to you…NEVER give up, no matter how bad and do not doubt, no matter how long it will take.

I am almost there and have no doubt about being able to reach the end of this illness.

 

 

 

 

 

[lynnie_sydney]

roserdRA – it's been quite a while and what a great post to call in with! That is absolutely wonderful news and thank you so much for taking the time to come back and let us know. Lynnie

P.S. Your post would make a wonderful testimonial for our main site. If you are willing you could forward it to us to put up there. We are always looking for stories such as yours to keep the AP testimonials current.  

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)

[Kim]

Hi roserdRA.  I remember you and am delighted to hear you are doing so well. :blush:

Your depiction of what it takes to get to that point is very helpful for those struggling at the moment.  Your assessment of having to believe in the program is spot-on and a hard one for people to grasp when there is no instant relief or gratification as we've come to expect from medications.

Thanks for posting and enjoy feeling good.

Take care…..kim

[Michele]

Roserd,

Thanks so much for posting. Hearing from people who have found a successful road back means so much to know this disease can be beat back. That encouraging news is really helpful on days of struggle!

Congrats to you and may you continue to enjoy living life free of RA pain!

Michele

[tbird2340]

That's awesome! Great to hear you are doing so well..

May I ask what your RF and Anti-CCP numbers were at their highest?

Thanks, Tom

[Maz]

Hi Rose,

So nice to hear from you again and what terrific news that you are in remission, both in bloodwork and in symptoms! Great job! 😀 For some reason, I always think of you when people mention hive-like reactions, because didn't you have a bit of that on your joints in the beginning? I seem to remember something like that, but presumably that is all now a thing of the past! YAY!

I second Lynnie's comment – would you be so kind as to send us your testimonial for the main site? Just send it to Kim, Lynnie or I and we will be sure to get it posted – these are just so powerful for newcomers and I can't tell you how many times I read through them in the beginning to give me the courage and conviction to try this therapy.

Well done and many thanks!

Peace, Maz 

[roserdRA]

Hello all 🙂 !

I guess a few of you do remember me…. 🙂

Of course my post can be used for the testimonial page, even though I rather write my whole story about a 100% cure of RA. 😀

Some one asked about titers and what was the highest…initially I was in the 100's with Anti-CCP but not too high with RF…60 or so…

Oh, I forgot to mention that in the past 3 years that I experienced this illness I also started to research a lot and started to learn a lot about immune and cell functions and also Microbiology. I do not work and a lot of my time went into researching and comparing to myself and other cases.

Now the following is my own assumption and has to be seen as only my opinion!

I believe RA is caused by a viral/bacterial infection that slowly turned into a metabolic cell disfunction.(Which can allow further pathogens take a foothold as the immune system is not functioning proper anymore). This is why it's so different from patient to patient. 

I have a hunch why women are more effected then man as the luteal phase of our menstrual cycle (angiotensin II) is involved in the process and can exacerbate this metabolic disfunction that is initially influenced by the ion exchange in our cells gone wrong. The more cells and systems become affected – the worse all symptoms involved. Depending on each human beings constituents, a metabolic disfunction can turn into many, many different highways…once on the road. This slowly causes things to turn worse as more and more things and cells and body systems become affected by this malfunction.

I also learned that Minocycline is not only anti-microbial but also influences cell death by upregulating bcl-2 in the powerhouse of our cells (the mitochondria) thus preventing the cascade neccessary to induce programmed cell death (apoptosis). This in turn downregulates inflammation, allowing the cells to heal. In order to stop this vicious cycle one has to try to get the ion exchange in our cells working correctly again. If your cell metabolism is way off – Minocycline alone can't do the trick!This all has to do with the cell membrane gradient and is more about the electrical nature of proteins etc.

( I am European 😀 and it's like trying to plug an electical device from Europe into an Amercian power outlet … it won't work! And if it was a curling iron and I can't curl my hair, then I won't go to that Party and if I don't go to that Party I won't meet the man of my dreams and if that doesn't happen, then my life goes an entire different path. — I believe RA is a little bit like that!:roll-laugh: but if I borrow my girlfriends curling iron and fix the problem I will make it in time to the party! If you get my point!!!)

So back to this ion exchange thingy… bottom line, each and everyone of us has to figure out which metabolic pathways and systems are already affected. Some can fix bits and pieces with what they find out! Like cutting out meat or a glutenfree diet etc. but this is like starting to read from the center of the cake recipe to bake that cake. All of us know that one has to start reading from the top in order for the cake to turn out!

My findings made me believe that I have to start where it all begins…and that is the cell. Anyone interested in this should read about ion exchange on Wikipedia.

Oh I can go on and on… all that helps RA … from Bee stings to vinegar (organic acids – COOH)…etc. etc., it all becomes clear why this is all helping somewhat. But without the right combination for each and everyone it is not going to fix it. As I said before…it's like starting to read that recipe from the center of the page….

I started with what I believe is the core to get the balance back. (There's a Ying to every Yang :D)

 So I stopped extra Calcium (as in supplements) as it throws off Magnesium which in turn is needed to take up Potassium (did you know that very low Potassium is what we RA people have all in common?) which influences a whole myriad of things… No, no not supplements! Well almost none! Food! The right food! Besides my coffee I start the day with a cup of milk or goat milk or yoghurt or Kefir (normal amounts of Calcium – not excessive, like with supplements) blended in the mixer with 1 to 2 Bananas (very high in Potassium!) with about a half to a whole teaspoon of Epsom salts (Magnesium!). Sweeten if you must with natural sweeteners like sugar or honey, I found it to be sweet enough even though the Epsom salts made it a bit bitter. All these ingredients need each other to be properly absorbed in the body. One alone won't work to it's full potential!

In addition to that I never eat too much regular salt (Natrium-Potassium Pump has again to do with this cell electric stuff, and there's a reason why too much salt is bad for you!) and I drink Pomegranate or red Grape juice or eat red grapes/pomegranate(Antioxidants) and almost every day tea (mostly Green tea). I avoid too much fried foods and go mainly for steamed, grilled, etc. with a lot of veggies.

After taking care of my “normal” Calcium intake (so many US-foods are calcium fortified…no need to take extra supplements!) and my Potassium (one can not overdose on that if taken in food) and making sure I get my Magnesium and also Vitamin D as in fortified milk and adequate sunlight, that's when everything else is complementary. Meaning…here and there apple cider vinegar, etc. or Gatorade/Pedialite etc. occationally to boost overall Electrolytes, even an occational Red Bull Energy drink! Yes! For the Taurin – don't ask :D! 

And exercise to produce DHEA – as it is also a part of regaining the balance! 

I really can't explain it all here, it became a way complicated sounding and endless post as is already!:roll-laugh:

 

 

 

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