AP update | Arthritis Information
Well, I've been "doing" the AP for about 10 weeks now, along with
20mg/wk mtx and 400mg/day plaquenil, and I have to say I feel amazing!
I started out with 50mgMWF. After I started I had a few really bad days
that felt worse than before I was on any meds (one morning i couldn't
walk on my right foot). Once that flattened out for a few weeks I
raised my dose to 100mgMWF. Then I got a lot of new problems in my
muscles and other places. That ended after a few weeks, I waited a
while then went to 150mgMWF. Had a couple weeks of not-so-bad herxing,
that evened out, and two days ago I took my first 200mg dose. I felt
terrible yesterday, but today I feel okay.
I just looked at a pain and symptom chart I started keeping when I
began AP, and was pleasantly surprised to note I'm doing WAY better
than I was at the beginning. Most notable is the lifting of the
terrible fatigue and brain fog that has plagued me since my RA became
full blown. It happened so gradually I hadn't really noticed how
dramatic it was.
I can't say for sure it is the AP that is causing this improvement.
Once I finish the herxing cycle for the 200mgMWF I will being to
decrease my mtx by 2.5 mg every six weeks. I expect more herxing for
this process, as each time my immune system will be less inhibited,
allowing the minocin to do it's thing better, hence, pain and sufferin'
while the herx runs it's course. Once I'm completely off the mtx I'll
really know how the AP is doing.
Even if I have to stay on mtx I think I would stay on the AP as well,
because my shift into well-being has been quite remarkable so far.
I will keep you updated from time to time, for those interested.
What is a herx?
Gimpy I am so glad to hear that you are seeing improvement! I too am doing better with the fatigue and don't know which med is helping. "They" say with AP the fatigue is usually the first thing to go, so maybe your AP is finally starting to kick in?
I hope it continues to help
Newbie here...what's AP?Hey, amylynn,
AP stands for "Antibiotic Protocol Therapy" which treats RA with low
doses of tetracycline antibiotics (usually minocycline). It operates on
the theory that RA is caused by an infection that infests the person
with little things called mycoplasmas, which are cell wall deficient
"bacteria" sort of in between a virus and a bacteria. Mycoplasmas are
not made up, they are known to exist and there are hundreds of types of
them. Most people have them but people with RA have them in huge
numbers. The theory is these cwd mycoplasmas hide in the joints and
travel around the body in white blood cells, which explains the
migratory nature of RA. The mycoplasmas themselves do not cause RA,
rather, they emit a sort of waste which is an allergen, and people who
are genetically disposed to RA will eventually develop an allergic
reaction to the waste, causing inflammation and joint damage. Then,
your immune system tries to get at the mycoplasma, but because their in
the tissue it appears your immune system is attacking your own tissue.
Voila! You have RA!
It's all theoretical, but it makes more sense to me than auto-immunity.
Like I said, because mycoplasmas are cell wall deficient, they're super
good at hiding in joint tissue and blood cells. Tetracycline
antibiotics lure the mycoplasmas out to where your immune system can
attack them, and the antibiotics also stop the mycoplasma from
reproducing.
These mycoplasmas are tricky little buggers and it's hard to isolate or get them out.
If you're interested in learning more about the theory and treatment, a
great book is The New Arthritis Breakthrough by Henry Scammell, (you
can probably borrow it from your local library) and a good online
resources is
www.roadback.org.
Like all RA therapies, it doesn't work for everyone. And I don't even
know if it's really working for me yet. There are a few people on this
forum using it with success, and I know it does work for a lot of
people when properly applied.
Aaahhh, very interesting. I'll be curious to see how you do with it. That is really great. I love it when people get better!
I am on AP for almost 2 months. Since last 2-3 days I am feeling little better too. I don't know if it's Minocycline or the "Pranayam"(Indian breathing techniques. Good to build immune system) I am doing thats helping.
But one thing I noticed..Is that my toung has black patches..Is it common? Will it go away after I get used to the medicine? And I always have bitter test in my mouth..
Glad to know your experiences with minocycline..
justgotit...I'm not sure. If you post that question on www.roadback.org
bulliten board you will probably get more informative answers, as everyone
there is on AP so they've seen or heard of almost everything. Glad to hear
you're feeling a bit better.
Hi, I took that antibiotic about 10 years ago, but for some reason that I can't remember, I then went to plaquenil. Can you be on the minocycline for a long time? I'm glad you are feeling better. sarahI think you can. I know there's people who have been on them for over
20 years so far. I figure even if I have to stop taking them at some
point it will have bought me however many years.
GoGo!
You go. girl! But...not trying to be a downer but I've seen a ton of posts of people who have a big herx around 12 weeks. Mine was late (of course) by 10 days. That's when my right hand swelled up and looked like Felix the Cats glove. Scared me half to death - not because I herxed but because it was only my right hand. It took a couple of days for me to figure out I had 'reversed' to single joint attacks/herxes again - which was a good thing. Just be extra careful and take the whole lemon/olive oil drink to help you process stuff, OK?
Just!
The black on your tongue/teeth are die off from bacteria in your mouth. A good dental cleaning will take care of it. This is yet another benefit of AP -> you are also killing the bacteria linked to heart disease. At about 6 months on AP my supposedly incurable periodontal disease is almost perfect. No kidding. Only one '6' from near an absessed tooth which shows bone loss (cannot be repaired). All in all - I LOVE AP!
Hurts/Sarah
There was a lady that just posted on the Roadback who has been on AP for 25 years now. Recent research and ancedotal evidence shows that some people do have problems with AP. Usually it's the people not taking probiotics (replaces the good gut bacteria that you're killing with the antibiotics). That shows up around month 18 to year 3. Some of the mycoplasma are really adept at morphing to stay alive. So - usually around year 7 - some people find AP is not working anymore. Dr. Garth Nicholson has developed a rotation of antibiotic that seem to avoid this problem. Have you thought of getting all your medical charts (notes too -> that will be eye opening :-) and seeing what happened 10 years ago? I'd love to know why they took you off.
Pip
Hi! I just noticed your update - thanks for posting it, it is always good to hear how fellow AP'ers are doing. My only wish is that there had been a little more response and curiosity from others, I know so many are not happy with their current therapies, AP is certainly worth investigating. Happy healing, Pat [QUOTE=justgotit]
I am on AP for almost 2 months. Since last 2-3
days I am feeling little better too. I don't know if it's Minocycline or the
"Pranayam"(Indian breathing techniques. Good to build immune system) I
am doing thats helping.
But one thing I noticed..Is that my toung has black patches..Is it
common? Will it go away after I get used to the medicine? And I always
have bitter test in my mouth..
Glad to know your experiences with minocycline..
[/QUOTE]
Black, hairy tongue: What causes it?
What causes a black, hairy tongue?
- Melvin / Florida
Mayo Clinic dental care specialist Alan Carr, D.M.D., and colleagues
answer select questions from readers.
Answer
CLICK TO ENLARGE
Black, hairy tongue
A black, hairy tongue is a temporary, harmless condition. It typically
results from an overgrowth of bacteria — and sometimes yeast — in the
mouth. These organisms accumulate on the tiny projections of the tongue
— called papillae — and cause discoloration. Certain types of bacteria and
yeast make red blood cell pigments (porphyrins) that can give the tongue
a black appearance. In some cases, the tongue may also appear "hairy"
due to more rapid growth of papillae or an interruption of the normal
shedding of cells by the tongue.
In some cases, the cause of black, coated tongue can't be determined.
However, some potential causes include:
Changes in the normal bacteria or yeast content of the mouth following
antibiotic treatment
Poor oral hygiene
Medications containing bismuth, such as Pepto-Bismol
Regular use of mouthwashes containing oxidizing agents, such as
peroxide, or astringent agents, such as witch hazel or menthol
Tobacco use
Drinking excessive amounts of coffee or tea
Some tips for removing the discoloration include:
Gently brush your tongue with a toothbrush twice a day.
Rinse your mouth with diluted hydrogen peroxide (one part peroxide to
five parts water) or apply it with a toothbrush. Rinse your mouth with
water afterward.
If this doesn't resolve the problem, consult your dentist or doctor. If the
discoloration is due to bacterial overgrowth, antibiotics may be
prescribed.Gimpy and Pip and whoever can answer this. I have a question about AP
therapy. Is there a list of any infections people may have had, in particular
to cause the RA? I had mono in 95, the epstein barr variety. Is that
considered an infection? I have read a bit about AP but I worry I would have
constant yeast infections and I would hate that. Have you had problems
with super infections?
JustGotIt -
Wow, Lori - if that's yeast then JustGotIt needs to see a doc - and be darn sure she's on 3-4 times the recommended daily dose of a probiotic. I just assumed she was dealing with normal die-off. The first month or 2 people complain of their teeth getting black. Mine was horrible probably because of the bacterial periodontal disease but it cleans up really easily by a hygenist.
Here's a link to an article I found near the end of my search that led me to AP - it sums up everything I read in studies and has a nifty chart at the end. http://www.anapsid.org/cnd/diffdx/bacterialink.html For what it's worth, this guy writes for the LA Times and I respect just about everything he's written.
Not trying to scare you, but what meds are you on? If you know you had EB and some of the traditional meds cause an increased chance of lymphoma...I'd think twice about the traditional meds.
I have just recently emotionally dealt with the fact that I may have a bad systemic yeast infection and that may be one of the reasons I became sick. I guess I just wanted to assume I was special. :-) When the anti-inflammatory Gluten Free Diet didn't work for me I just stopped looking at the diet connection. But during this move we've not been able to cook for ourselves and I've had a rude awakening. There is something going on here and I'm not so special after all. :-( If you, like me, are prone to yeast infections - then we know how the bacteria/fungus got out. Thru a leaky gut.
If you read The New Arthritis Breakthrough by Henry Scammell - Dr. Brown says the culprit is mostly something we may have had/been exposed to in childhood. There are 3 biggies. Strep. C. Pneumonia (walking pneumonia) and ___________ ) GoGo - help me out here - what the 3rd one? The one linked to heart disease? I tested positive for strep. I did not test positive for pneumonia even tho I've had it multiple times. My personal belief is that these things are lurking in our white blood cells and some extra ooomph causes them to start replicating like crazy. Like, oh, stress and a recent infection. Like the body was run down, no sleep, etc and the lunatics took over the asylum.
A month or two ago as we were packing for the move I got sick with pneumonia - and I mean bad. Couldn't breathe etc. I was terrified they were going to say I had pneumonitis (drug induced reaction) and try to take me off Mino. I don't believe it's a true allergic reaction so wanted to stay on because I thought it was just a herx - and thank God, it was just a herx and I just rode it out. These buggers can reactivate on AP and often do - they want to stay alive and try to fight back.
I'm on one diflucan a month and it's not cutting it. To me that means whatever I'm dealing with (probably yeast) is more overgrown than the diflucan can handle. And the 4X of probiotics. To me this translates to a major life change. Damn. I'm about to start researching my options. I know some AP physicians work you up to multiple diflucans a week. Slowly, eventually, you're liver tolerates the dosage to help kill the stuff off. There are other options too. Nizoral. And I think Alina. (don't quote me on the last one.) There's a girl posting about Kefir on the RB but she sounds a bit fanatical (yes, I know I sound fanatical too :-) and some of her claims seem to be really overboard. But...if a 1/10 of what she says is true - that might be a more natural way to go along with the western meds as I try to fix this.
And I have to totally redo my diet. Absolutely no sugar. All fresh and as raw as possible. Yuck. But, if it needs to be done for a couple of years to totally heal the gut - then it needs to be done.
Pip
Really good to hear of your improvement. It certainly proves the worth of keeping notes on your condition. Gives you hindsight - which we all know is a wonderful thing, and certainly not easy to come by!!
So - well done, and I hope the improvement continues for you.
I truly believe in the leaky gut problem. I ate horrible for years. Now I
really listen to how my body reacts to food. I have found that milk is my
worst enemy and I have given up on it. I love dairy so it is hard. And it
seems that there is a bit of dairy in everything. I feel that it is more of a
protein intolerance than a lactose inolerance. I get bad headaches
everytime I consume milk/dairy. Pip, do you juice at all? I used to but
gave my juicer to my daughter who seemed like she needed it more than
me, lol. Actually, I loaned it to her and never saw it again, but her little
girls love it so it is all worth it. I have been thinking of going vegetarian
and keeping eggs in my diet. I had rheumatic fever when I was 8 years
old and took penVK for 10 years, everyday. I am on Plaquinil at this time
for the RA, also take nadolol and nexium. Last night, I took my last
sleeping pill. I'm done with those, I am trying alternative treatments for
that. Thank you for the link, I'm gonna check it out.
Hey Lori!
In the article I posted there was something I hadn't noticed before. The part about quinolones being antibiotic in nature. Isn't plaquenil in the same family? Sorry - I get all these drugs mixed up. I know they used to prescribe plaquenil for malaria - which is a microbe/bug/??? but is this the same family? Do you know?
I think I need to sit down with some microbiologist to figure out how this all works. LOL. Is it possible to 'overload' the cells like I keep imagining? Is there some 'point of no return' where our bodies get overwhelmed?
No, I don't juice - but it's on my list. Truly, I'm in the process of trying to figure out what I need to do from here. I'm OK. Just a little achy (very little) and a bit fatigued (but it could be all the stress from moving, re-org-ing a household etc) and most people wouldn't think I'm sick at all to look at me. I can even run again. (LOL). But this diet thing that happened during the move proves to me I'm not as well as I thought - or worse, I could get sick again - if I don't address this issue. I think I'm going to make a list of questions to post on the RB looking for advice on 1) juicing 2) cleanses 3) probiotics 4) IV antibiotics 4) anti-candida diets etc. Does that make sense? It's like I know I need something more even tho I should be darn happy where I am. I just think I can beat this thing what with the nature of my disease etc.
What's the active microbe in Rheumatic Fever? Is that strep?
Pip
Yes, it is strep. I had several bouts with strep prior to the rheumatic
fever. The generic name for Plaq is hydroxychloroquin so yes, it would be
in that family. It is anti malarial. I feel so good on it, I cannot believe I
delayed treatment for so long. Juicing is good....Costco sells that vita
juicer once or twice a year but you can buy it online as well. It is pricey
but I have heard much good about it and it comes with all sorts of recipes
on juicing and actually entire nutritious meals with it. It also cooks soup.
I bought a food dehydrator because I refuse to have candy in the house
for my grand kids. I dry the fruit and they love it. It is great if you don't
have an appetite and need the calories. Dried pineapple is the best. The
other thing that you need to look at is what you are cleaning your house
with. I bought a book last night with recipes for home made cleaning
stuff for the home. Lots of toxins in our cleaning products that can affect
our disease. I figure if I'm gonna clean up my act, I need to clean up my
whole act, not just the nutritional part of it. I am doing it one step at a
time but I'm getting there. I bought a pedometer last week as my
husband is on a walking program through his company since he sits in an
office all day and it is their way of getting the employees moving. So, I
am trying to get in the 10,000 steps a day with him. It is hard but at least
the weather is nice. Anyway, good luck on your progress. I'm glad you
are doing better. Keep me posted.Yes, plaquenil has antimicrobial properties, as does GOLD, and both
drugs are used to treat RA but the doctors who prescribe them "don't
know why they work". Drrrrrrrr........Anyway, Pip! I can't remember the
name of the other infection either, even though I'm rereading The New
Arthritis Breakthrough for the 3rd time right now. Because I don't have a
proper AP doctor who looks for that stuff I just kind of glaze over that
info, I think. If I find the AP treatment I'm on isn't working I will certainly
be motivated to did deeper. However, there is a chart of the Historical
Protocol which is on the roadback site, and this chart lists all possible
mycoplasma infections and the best antibiotics to treat them with.
Minocycline isn't listed on the carht because the cahrt was made prior to
it's invention.
WARNING: AP newbies or curious looking at this page, do not feel
intimidated! yes, it looks complicated but this is the old 1940's protocol.
The modern protocols are much simpler! Anyway, the chart is appendix A
at the bottom of the protocol
[URL=http://www.roadback.org/index.cfm?
fuseaction=studies.display&display_id=184#Anchor-Appendix-36 3]
http://www.roadback.org/index.cfm?
fuseaction=studies.display&display_id=184#Anchor-Appendix-36 3[/
URL]
Pip! I am sorry to hear of your yeastie troubles, although I tend to believe
some of your current backsliding might be largely due to the stress of
moving across the country and being homeless for over a month. Stress
kicks our RA asses! Although of course these healthy diets can never hurt,
only help, and I'm sure I'll be having to eat even more healthy in the near
future. I have to get there by degrees and I LOVE sugar so it's hard. I was
wondering how do you know you have a systemic yeast infection? I do the
simple home candida test about 3 times a week and I always thinking I'm
doing well. there's usually just a little bit of short strings that take a long
time to form. Is the test not very accurate? Should I ask for a test from
one of my docs?
I have been researching KEFIR because of that near-fanatical post on the
roadback BB. I'm checking out DOM'S KEFIR site---it's extensive! I might
add kefir to my probiotics regimen as I see from the kefir grain sharing
site there's a guy 4 blocks away who will give me some. The only problem
is I don't usually drink that much milk. I guess if I go on a dairy free diet I
can do it with rice milk but I wonder if it's any good. Anyway, I intend to
post about KEFIR on that probiotics thread we have going once I know
more about it.
Lorster, yes, yeast can be a problem, and I did get one yeast infection
early on in my AP, which I was able to deal with by no sugar and over the
counter yeast infection treatment. Since then I haven't had a problem.
WHEN ON AP YOU MUST HAVE GOOD PROBIOTICS AND YOU MUST USE
THEM. I've been using Florastor and Acidophilous Pearls and I think I'm
doing okay (but since Pips! post I'm not so sure).
I'm kind of behind on all the stuff I'm having to read at the moment so I'm
sorry I coudn't contribute more information at this time.
Gimpy-a-gogo39229.5461574074ARGH...why do my links sometimes not work when I'm on this laptop? I'm
afraid you will have to cut and paste if you want to see that chart
http://www.roadback.org/index.cfm?
fuseaction=studies.display&display_id=184#Anchor-Appendix-36 3Okay...you will have to cut and paste AND take the extra space between the
36 and 3 at the end.
Or go to www.roadback.org, scroll down "EDUCATION" to "PHYSICIAN
PACKET" then click on "HISTORICAL PROTOCOL"
whew.I just realized something. Minocycline is a popular treatment for acne. Well.
I used to have pretty bad acne until I started taking Plaquinil. The
antimicrobial affect must be helping my acne because I now have a perfect
complexion. Anyone else on Plaq notice this?I went to Brannicks site he advertised on his "King of Arthritis"
thread and found a link to this pubmed study on gut permeability in
people with RA and AS. Brannick has ankylosing spondylitis.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve &db=PubMed&list_uids=4032403&dopt=Abstract
Abnormal bowel permeability in ankylosing spondylitis and rheumatoid arthritis.
Smith MD,
Gibson RA,
Brooks PM.
Intestinal
permeability was measured using a low molecular weight polyethylene
glycol as a permeability marker in patients with osteoarthritis,
ankylosing spondylitis (AS) and rheumatoid arthritis (RA). Patients
with AS showed a significant increase in bowel permeability when
compared to controls. Intestinal permeability was also increased in
patients with active RA but was less than the control group in RA
patients who did not have active joint disease.
Publication Types:
PMID: 4032403 [PubMed - indexed for MEDLINE]
So is there a cure for this gimpy? What do we have to do to correct this?
Damed if I know, lorster...so far I'm just whistlin' in the dark like all of us.
Is there a cure for this? Some people insist no one has ever been cured
of RA but I don't agree with that. I guess if there's a difference
between permanent drug free remission and being cured, then no, haha.
Gabe Mirkin cured his wife Diana with antibiotics. Some people have
been cured with stem cell therapy. One woman was cured by bee stings.
Also, don't forget my story a few months ago where the woman with
fibromyalgia had a pneumonia induced 9 day comma and woke up to her FM
being completely gone! So I think it's just incredibly difficult to
cure, and no one cure works for everyone.
Also, I'll take having to use low doses of gentle drugs for the rest of
my life---I don't need a full on cure to be happy! My boyfriend works
with a woman who's mother had terrible RA. She lives in the northern
woods of Quebec and the First Nations people there taught her to boil
pine needles and drink the tea. She does this every day and her RA has
been totally under control since she began that. The woman I got my ABX
protocol from just takes 50mg Minocin MWF for the last 13 years and
she's fine. We've all heard many stories of people who control their RA
with diet.
I guess some people just feel more comfortable doing what their doctors
say and not questioning anything and other people need to search for something better. And some of
those people find something better. Or they accidentally get stung by
bees. For myself, I'll just keep on truckin' and hope I'm one of the
lucky ones that finds something better.
Gimpy-a-gogo39231.4221180556I guess I didn't ask that right. What I was trying to ask is, are the people that
may have gotten RA from the infection, more likely to be cured with AP
therapy. Are they seeing alot of success stories wit AP?It's hard to say, Lorster, since there's not a lot of hard data. There is not
much funding devoted to AP since there's no profit to be made from the
research. (Recently Dr David Trentham, a leading AP researcher at Beth
Isreal, was denied a supply of Minocin by the manufacturers which he
needed to conduct a study. This is VERY UNUSUAL as pharnmaceutical
companies are usually more than happy to supply their drugs for
government funded studies. The company that makes Minocin also
produces high cost biologics. The whole history of AP is full of stories like
that.) So there are no sure numbers on it's rate of success. From the
studies that have been done, it looks like the rate of success is about that
of any of the DMARDS (one third do great, one third do okay, and one
third do not respond). From anecdotal evidence it seems the success rate
might be greater, especially when applied properly. There bare some
good stories on the testimonial section ow www.roadback.org.
One thing is the quality of success. For those AP works well for they really
have no pain or other RA symptoms and they take very little, less toxic
drugs.
Then the thing about infection is it's not as simple as you get infected
with an RA bug. The theory is at some point in your life you have a focal
infection, say strep throat or an infected root canal. Antibiotics clear up
the infection but what has happened is while the infected bacteria were in
your body they had little offspring called mycoplasma which happily
colonise your tissues and synovial linings and travel around your body in
your white blood cells, which explains the mirgratory nature of RA.
These mycoplasma are able to do that because they have no cell
wall (the same feature which means they will never become resistant to
anitbiotics). Every now and then, for no known reason, these mycoplasma
will sneeze out some waste, and it's the waste that some people, (people
who are gentetically predisposed to RA) have a sort of allergic reaction to.
The waste irritates your body and that mobilises your immune system to
attack the source of that waste. But since the source is hiding right inside
your tissue or synoviims it appears your immune system is attacking
yourself. So that's the theory in layman's terms as I understand it.
Tetracycline antibitoics inhibit the reproduction of these mycoplasmas
and also lure then out of the tissues where your immune system has a
chance to attack and kill them.
I guess some people have been cured by AP, but these little buggers are
hard to get at. Also, most people have some mycoplasma in their body at
any given time (although people with RA have about 4 times more).
However, even if you're cured you still have a high chance of reinfection.
Then you have to AP yourself all over again.
Gimpy-a-gogo39233.4444907407Hi All!
Sorry about that - I managed to blow up a perfectly good, brand new router. Sigh.
Lori - we just got a Costco membership so I'll keep an eye out for the juicer. Thanks. I also just found a book I must have bought years ago on making your own food from scratch. Like mayo and catsup. I'll look and see if it has cleaning products in it too. You have a really good point on everything needing to be addressed.
GoGo -
Can I ask you to send me in email whenever you see a cool study or something? Please. I can save it to my hard drive a lot easier! LOL
The thing is - life is stress. I don't know how we can consider outselves 'well' if a ton of stress like moving and homelessness slows us down. :-) I guess for me knowing that something might still be leaking thru the gut - and seeing how 'off' we can get on a diet of fast food - well - even tho I don't do that normally in life, what if I have to again? See my point?
As to how I know I have a systemic yeast infection? Easy. I'm a girl. We KNOW! :-) And I shouldn't. I'm on one diflucan a month and 4 times the dosage of probiotics. This should not be happening. But it is. I can feel myself getting 'worse' around day 20 of the diflucan. And when I can take another - and do - I start feeling much more perky. Part of the problem is that I 'forgot' my probiotics during my 'homeless period.' I mean, I plumb forgot. Is that crazy or what? And my AP doc asked me specifically multiple times about it and I kept saying 'yes, I'm taking them' - but it wasn't until I was in the car driving home that I realize he meant the "probiotics" not the vitamins. My longwinded point is that 6 weeks off should not be causing this problem - so I'm pretty sure I'm dealing with something systemic.
The funny thing about the spit test is I've never done it. I think for all my tough talk - I think I knew there was something else going on and I just wasn't ready to face it yet. What a big baby, huh? Maybe I thought PRA was enough to deal with at one time. LOL. But from posts on the RB - that's the most accurate test out there. So - when I get a little more set up here - and a little more guts - I'm finally going to do it. I hear the yeast tests docs do are not very accurate so...stick with the spit test.
Let me know what you decide about the Kefir. That fanatical post was intriguing but it also set my little red flag wagging. Lot of PR in there. I almost agreed with Richie - and I NEVER do that. LOL. Ahhh, what probiotic thread. Here? I have to look for it.
About the study - if they differentiate between active and inactive arthritis - could that be influenced by diet? Think about it - under stress, something starts leaking, and voila - another 'attack'?
Lori -
Reactive Arthritis is, in theory anyway, curable. Those are the people that step on a rusty nail or, in the old days, got a sexually transmitted disease. Their RA comes on fast and hard and if they are treated with massive antibiotics right away they have a good chance of being 'cured'. This is the thing that made me and my husband spitting mad because we knew my disease was linked to an infection - but by the time I was 'ill-ill' it was a year later and all the docs refused to classify this as reactive and prescribe ABX or AZT. Instead I was now full blown Palindromic. Thanks, medico's!
I think you really should get the book the New Arthritis Breakthrough by Henry Scammell. Reading that is really eye-opening. Most of the people that come down with RA/Lupus or some of the other AI diseases tend to be dealing with something they had in childhood. This is where I'm getting my 'cell overload' theory. For me, it was strep. Others complain of reoccuring bronchial infections. One of the Big 3 were 'at the scene of the crime' for everybody.
Another question is what do you consider 'success' with AP? I can attest to the lack of pain and the ability to do everything I could before PRA. Most people would be happy with that.
I think maybe 5% are 'cured' with AP. Think about how many people lurk on boards and never post. They take what they learned and go from there. But most people keep going on the ABX forever and rotate ABX so they don't develop a tolerance. Most people find AP only after years of the traditionals. They are not willing to stop something that's working on the 'chance' of a cure. Ancedotal evidence says it's a lot harder to get the myco's under control the 2nd time so most people are not willing to take a chance.
Others, like me, want to 'go for it'. I think there is a way to do it. Systematically strengthing your own immune system and killing off as many of the buggers as possible. Fixing the hyperpermeable gut - which is HARD to do etc. Frankly, I'm even watching some of the newer stem cell therapy being done that harvests your own stem cells, 're-winds' them back to their earliest age, then re-injects them back into your body. 2/3's of those patients had their livers 'repair' itself. Why not the gut?
I think this is enough for now. LOL. At least a friend lent me a computer.
Pip
Pip, I will send you any good studies and keep you updated on the Kefir. I've
been kind of not on the job lately 'cause I'm doing a lot of non-RA stuff right
now, so it's slow going. Although I did go to RA school again yesterday and I
got a lot of urls to check out, so it might be sooner than I think.
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