I know this is probably the wrong board to ask this on, as almost no one is on AP therapy, but as I look into it I can't help but wonder: If RA is caused by being infected with mycoplasmas, and the antibiotics lure them out to where our own immune systems can attack them, then why do people never get off the antibiotics eventually? Is it because you can never fully get rid of them, or is it because maybe the antibiotic is just acting like another DMARD? If any AP people can answer this I would be grateful. I'm still struggling with an AP decision so all info is good info.
A small number of people DO manage to get off the ABX and never have to take them again. I have never seen an estimate of what the percentage is - but let's assume it is small - like 5% or so. These people took ABX, got well, and we pretty much never hear from them again. Look at this and most boards. There are a good number of people that lurk and never post. Looking through the board logs, you can see that there are people checking in daily, but you never know what they are doing etc. They just get info and use it. :-)
I have been told by people I trust that they have MET people that have been 'cured' by ABX. Again, we run into a problem with definitions. I am using the definition of 'cured' to mean absolutely no symptoms, no use of meds, and negative labs for an extended period of time - I use 5 years like cancer survivors do. If I can make it 5 years off the meds - then I will be cured.
According to this board and others like it that I have posted on - people on regular meds go into 'remission' yet they post of still having pain and swelling. What kind of remission is that? On ABX eventually you become pain free. IMHO, if you even have a twinge of pain then you are still infected. Even if all of your labs have returned to 'normal' if you are not 100% and without ANY pains and twinges then you are still infected.
I think part of the problem is people consider themselves 'in remission' when they are not. They feel great, go off the ABX, stop having blood drawn to check their progress, go into some sort of denial and forget they were ever ill. This is crazy for people with AI diseases. Think about it - if this were cancer and you'd gone through surgery and chemo, how often do they have you come in to see if you are still in remission? Yet we just stop checking. The twinges start coming back about 2 years later - the beasties have regrouped and come back stronger than ever. It is a well known fact that when they come back like this - they are much harder to get under control the second time - why? - because they changed a bit to survive.
What most of us do not like to think about is that we have another life form inside of us. This life form is sort of parasitic in nature and wants to stay alive. I liken it to the movie "Tremors" Have you seen it? It's the only horror movie where the monster LEARNS. That's what these things do. They need to be able to live inside our body and keep breeding more of the beasties.
In High School I had some biology class that told us that parasitic diseases evolved over time in order to live off the host and still survive. An example they used was syphillis - apparently it was fatal when it first showed up, but dead bodies became dead hosts - so it evolved to be more neuro-disruptive and both the host and the parasite (a spirochette) survived.
Myco's have the same ability. They are cell wall deficient and they have the gift of molecular mimicry. This translates to - they can fool the body into thinking they are part of the body so 'don't destroy me'. Here's a link that I found fascinating - especially the part about the hunting the CWD bacteria - of course, if the body cannot hit the bad guy with gun, it's gonna start throwing bombs. :-0 Hence our swelling and pain.
http://www.geocities.com/SoHo/Gallery/6412/stealth.htm
I am seeing patterns in some of the cutting edge research out there in that they are all trying to figure out how inflammation plays a role in ALL TH1 or autoimmune diseases. One thing I've read recently talked about people with our diseases have extra DNA that we do not shed. And goofy or not, I asked myself, 'or do these CWDB use it as a shield so the body cannot recogize it as an intruder?'
So, we have smart beasties running around in our bodies trying to stay alive and they have the ability to hide from us. At cpnhelp.org they say that c. pneumonia has 3 forms that all have to be killed in order to be cured of the disease. Like an active 'bug' and 2 in reserve. In other studies I've read, they found that they can kill the strands of DNA that is strep - but when they looked at it under the new darkfield microscopes they saw there were these weird outposts that they couldn't understand what their function was. Turns out that those 'ouposts' can 'reactivate' under the right circumstances. So, you can be tested for myco's and test negative for strep but under the right circumstances the darn thing can reactivate - oh - like maybe ABX. I mean, I'm looking at it like I've got a darn smart adversary and I better be one step ahead of it if I want to beat it.
There is an split on the dosing. People that take the Mino daily say it is working more like a DMARD. Those of us pulsing say we are killing beasties. My question is - even if you don't buy into the infection connection - look at the side effect profile - if it takes away the pain isn't it a heck of a better choice than the traditional meds? Because I strongly belive in the infection connection I do the pulse.
So, let's say you are 100% cured - what is to say you will not get reinfected tomorrow? Many people on AP say they do not want to take a chance on that so they will stay on ABX for the rest of their lives. In theory, these people could be 'cured' but we will never know because they do not want to risk stopping the meds.
Leaky gut - this is probably what got you into this mess in the first place. There is a ton of really interesting research out there hypothisizing a hyperpermeable gut lining is the reason that we get AI diseases. In this case, the gut lining becomes stretched, for want of a better word, and larger molecules break thru the gut lining and gets into the body/bloodstream. Food you eat has bacteria, toxins etc. on it - all things that would have normally been expelled from the body. You can be on ABX until the cows come home but until you deal with repairing the gut lining (with big serious diet restrictions, colostrum, whey protein) you will get ill again. Most people do not want to do all the things necessary to get well. What's a couple of ABX on MWF if that means I can go back to eating McDonalds 10 times a week. Ok, maybe not that bad, but you get my drift. If you feel good - why rock the boat?
Yes, a hyperpermeable gut lining would also apply to children who develop these diseases. I'd bet just about anything that they's test positive for food allergies (inflammation) etc and maybe even Celiac disease.
That's most of what I have found from my research. I hope this answers your question. I babbled on again, didn't I. But no way I'm erasing a couple of hours of typing. :-)
So, I do think I can beat this, and I do think it's going to be a struggle - but I do know I'm going for the 'cure'. I think the more I study and learn, the better armed I will be.
Pip
THANK YOU very much for that well expressed explaination. I know typing it was a lot of work, too. I have copied it and put it into a file for easy access. I've been reading a lot about AP therapy and have so far not run across this kind of explantion so it is extremely helpful!LOL - so of course, I forget the most important aspect. These pathogens co-opt and live in our white blood cells. How is your body easily going to get rid of them? In the war scenario - it's like sending in the calvery and the enemy is masquarading as the calvery. Not a great chance for total success - but there are 'miracle' comebacks.
Pip
Hey Pip, all that you said really makes sense within the parameters of the infection theory (which really does make sense the more I look at it, at least in my layman's mind), but how can that account for other success stories such as LuAnn and her stem cell cure? (I think her name is stemcell4me on this board). If her blood and tissue is infected with mycoplamas, how could "rebooting" her immune system cure her the way it did? I'm not casting skeptisism on the theory, nor do I expect you to know everything, but it is puzzling, isn't it?I had no known pathogens in my blood. Every test was run to check before stem cell. Also early in my RA I did try antibotic therapy and it didn't help me.
From what I understand certain cells had gone haywire and the reasoning for killing existing cells and putting in new was to rebuild a new immune response in therory. The problem lies in the memory cells and 50% of the people regenerate those same memory cells.
They are finding that the T & B cells have a great significance in this process. If the T & B cells are in overdrive, it is my understanding you get immune disease responses and on the opposite end of the spectrum, low T & B lead to HIV & AIDS in individuals. So the researchers are trying to control the responses of the T & B cells.
What makes some successful and others not, who knows. I think a total life style change including getting rid of old negative thought processes of the past.
Just my take on things:)
LuAnn
Not really. I have a theory about this too. LOL Actually, I was hoping to find a reason and ask LuAnn some questions. Maybe she'll read this and respond.
Remember how I said I was so sick, so fast that I was sure I was dying? I'm talking using a walker in 4 months and wheelchair in 5. I seriously looked into the possibility of stem cell therapy. I didn't end up finishing the research because 1) I found AP and 2) hubby said the risk with stem cell therapy was too much and "no". Since at this point he had to do EVERYTHING I didn't see how I had much choice. :-)
Anyway, this is what I found in the beginning of research. Apparently the surgery kills off the entire system, like they do with bone marrow transplants. Some of the patients own adult stem cells are cultured and placed back into the patient in order to rebuild the immune system. IF everything goes right - voila - a new immune system.
Originally this was first done on people with MS. These were people at the end of their ropes. I mean, nothing had worked and they were out of options. Some people died before the transplant could take place. These deaths were counted as transplant 'failures' (which made no sense to me because why are they counting a dead person who couldn't participate in the experiment as a 'loss'?' Anyway, in the beginning, in the studies in Europe, there was about a 70% success rate. So - 30% were failures or died. Those were not good odds.
Also - they were only taking the sickest of the sick for people with RA and MS - so I wondered if they would take me - technically I was newly diagnosed and...
The Americans (go home team!) decided to do some of these experiments and managed to drop the failure rate to about 16% - again counting people who died prior to the experiment starting - what is up with this??? I considered these odds much more acceptable. Mind you, this has only been done for a couple of years - there's not a lot of long term results in yet - but assuming the immune system was now fixed I considered the odds OK.
I do not know if they have better odds now. At the time I was studying this - last April and May - there were questions I had that were unanswered. Among these are:
Then, after a couple of years the results started coming in. It seemed that 1/3 of the success stories started developing the disease again.
So, I started questioning why? My guess is that nobody thought to look and see if the stem cell (rewound or not) was infected with something - either myco or parasitic in nature.
:-)
Pip
Lu Ann!
Great to meet you!
Girl, do you have any studies or cool (boring) stuff for me to read? Anything on the T, B or Memory cells? Anything on the study you were in. This is so fascinating! I probably sound like I'm drooling!
I would truly greatly appreciate it!
Pip
Pip,
Hello to you and I will try to answer your questions.
1. There have been no success stories to date using embryonic stem cell, it is more media hype than anything else. The mission of adult stem cells is to repair. Embryonic prolificate any cell it comes across including tumor cells etc. Best to read all the interesting articles on
2. My stem cells were created by injections whereas the bone marrow shot out 19 million brand new stem cells into my blood stem and were collected and frozen.
3. Adult Stem Cell is a modified Bone Marrow procedure which had been done in the states since 1997. The risk is with infection (caused by PICC lines) having to be in the body so long, the side effects of the chemo killing off everything in your blood. It is for worst case people. If I had mild to moderate RA I doubt I would do such a rough procedure. My stem cells were picked through in the lab and chosen.
4. There is a researcher in AZ that is rebuilding tissue and bone and has put me on his waiting list to fix the damage to my joints in my hands. He is waiting on grant money.
5. Since chemo wiped out ever blood component, the stem cells replaced all WBC,RBC, hemoglobin, platelets etc. T & B Cells , you get the picture. I believe there has been some repair of tissues as my hands seen to have straightened out a bit. Repair can last up to 5 years post stem cell. All blood levels were back to normal by 9 months for me, some take longer.
That is all I can think of.
Hope it helps you,
LuAnn
Regarding AP:
There seems to be some indication in RA research that there may be several reasons for the RA response and/or different types of RA - this would help explain why different meds work for different people.
Main question: If RA is always caused by infected mycoplasmas, why is there such a strong genetic component to RA?
Ohhhh, I so do not have the time to go into what I think is the change/problem for why different meds work for different people. Suffice to say...I think it's in the food! Doesn't that sound like that Twilight Zone episode - but really - later I'll post on that topic if anybody is interested. Have to get on the road today and get some stuff done before I meet my mom at the hospital at 12:30. She's supposed to be having knee replacement surgery on the 24th but there have been some problems.
I am not convinced that there is a strong genetic component to these disease. Yes, I know, heresy, I developed these opinions on a ton of research for what was happening to me.
I started out at the main arthritis websites like the Arthritis Foundation. All said the same thing - it is thought that these diseases are started by bacteria, viral, or environmental stressors. Since I had that tooth thing that started all this for me - I agreed with them. Those 'official' web sites all said it is thought that the body does not know how to turn off its response to an infection - but that assumed that the infection was beaten down. How many people post that they feel achy, fluey, are fatigued etc. That sounds like a low grade infection to me. Then, when I found AP, and found that the beasties are still in the cell - well, everything made sense to me.
OK, back to the genetic component. These websites said that these diseases seem to run in families which meant there was a genetic component but for the most part these diseases were not inheritable - like Downs etc - which is entirely genetic.
Since I thought I was the only person in my family with any of this (RA) I thought - OK this makes sense too.
Until I kept researching and realized that autoimmune diseases are more alike than we thought. Lupus is one persons reaction to the myco. IBS is another. The person that saved my life and talked to me about AP mentioned that if you look at people that lived together there were more examples of connection than genetic ones.
And this is why you will find more of one family member has Lupus and another IBS and another RA etc. The body can't fight everything so it makes a choice - and where ever you are weakest is what manifests.
So I took another look at my family. My mom has had IBS for as long as I can remember. People with IBS (or H Pylori) tend to get heart disease. Almost everybody in my family has heart disease. The only people that don't are my bro's, my sister and me - the only ones not yet into 'heart disease' age range.
Again, this is only my family - I can't speak for others - all I know is what is going on with us.
About a year before I got sick my bro came down with some sort of rare infection in his spine and almost died. About the same time my hubby got some sort of weird form of diabetes - part AI and part regular. He lost 114 lbs and exercises daily and cannot keep his numbers in line. Then I get this rare disease, so rare my rheumy can't spell it right. Palindromic Rheumatoid Arthritis. Big split on whether its an offshoot of RA or a completely different disease. Anyway, we had all been camping together and we had been on one of those Caribean cruises where I ate raw fish in a foreign country.
Since then my nephew has come down with pre-diabetes and my sis-in-law has RA. Hmmmmm. Since the sis-in-law did not go on the cruise - I'm betting whatever we have we picked up camping.
And on the main arthritis web sites there were stories about they have remains of people with RA that date back a 100,000 years. But if you keep researching you find that they didn't have RA in Europe until the late 1600's - after we had intercontinental travel and the pilgrims and such.
Ding. It's something we sent back to them.
The value in the genetic tests are to tell us what we can expect if we do not treat the RA. Lynk, if you're reading this, I think (damn brain damage) you posted about the rheumatoid epitope - I didn't know about that and I want to find out if I have it and if I do what that means to me.
I think the should be looking into gene therapy - slicing and such - for us. We obviously have something that makes us suscepible to these diseases because as much as 60% of the population has myco infection. So...what makes us get sick? That's where they should be looking. This is where I would normally go into the food angle and hyperpermeable gut linings. LOL
LuAnn - I have to run - thanks for the link - I'll write you later if you don't mind.
Am I bugging people - This is just one artists interpretation of what's going on - your milage may vary.
Pip
You're not bugging me. I'm finding these posts VERY interesting. I've had a lot of these thoughts myself. For instance, my significant other developed asthma around the same times my firts RA symptoms started showing up. gimpy , a friend of mine tried the anti biotic therapy with disasterous results and thats why i wont try it. she was ok for several months and then went into a huge flare and ended up with severe joint damage and then back on the drugs she had been on in the first place. anna_uk londonGo-Go,
Here is a link for something I thought unrelated - until I reread it prior to posting it for you. See for yourself. :-)
Basically, I am sure these diseases are much more similar than we think. I kept this article because of hubby's diabetes, but also, the substance that was found to cause these mice to not be diabetic any more was capsaicin - which if my memory serves me (and we know how bad that is) - this is one of the foods that supposedly helps people with RA. The active ingredients are natural ABX and natural antivirals. Again - Hmmmmm.
The above article fascinated me because of 3 things - 1) inflammation which I do not believe I ever saw mentioned in the same sentence with diabetes before 2) the nervous system is involved - like MS and a lot of the neuro disease and 3) the natural ABX and antivirals.
Anna -
The main problem with AP as far as I can see is that you need an experienced doc who is willing to work with the patient and adjust things until the get their disease under control. In the US there are maybe 10 top docs and maybe 100 mid-range docs learning and all the rest of us are trying to 'convert' a good GP into monitoring us. If you look at the side effect profile of Minocin there is probably no safer med for us. Period.
However - I am a medical error magnet. If it can go wrong, it will. No if's ands or butts. Knowing my history - and looking at the worst possible RARE side effects made me decide to not start AP until some doc who knew what they were looking for at least looked at me. But I kept researching so I knew what I'd have to do if something went wrong. Gone are the days when I let these docs just tell me what to do - I wanted a game plan - I wanted nobody beside me steering my health anymore - I was TIRED of being messed up by these guys.
That being said - AP turned out to be an easy ride for me. I hit the AP lotto - in the fact that I had very little herxing and almost no swelling. I make sure I tell people up front it most probably will not be that easy for you. The only thing that might have made a difference is I was newly diagnosed, was never on immune suppressants except a couple of predisone packs, and my RF #'s were sky high - signaling my AP doc that my body was still putting up a heck of a fight.
That being said - most people find AP through word of mouth. Many rheumy's either try to steer people away from the therapy or out and out sabotage them so they quit. If you do not believe that I suggest going to rheumatic.org and reading the patient testimonials in order one night. Too many people talk of their docs over prescribing the meds (400mg a day?!?!?!).
Another odd problem is that many docs want a person to herx so that they start killing bugs - but what I can handle and what you can handle could be a completely different amount of the drug. There is even a sort of 'fraternity mentality' to AP successes - 'hey, I had my whole body swell up, how about you'. That is not only stupid; it's dangerous. Does it matter if it takes 2 years to hit remission instead of 1? What matters is as a person on the RB says ' "kill the microbe, not the patient."
Many people get hit with their first herx and drop back to 50mg a day and work themselves up to 200mg MWF. There is no shame in that - heck - it's the smart thing to do. The hard part of AP is learning how to manage a herx - making sure you are only handling as much as you can - no more than that.
I have NEVER actually met a person that AP didn't work for. There are people that post on the Roadback that said they started AP a long time ago, couldn't handle it, but the other meds failed so they are making it go this time. This time, with support from others.
I am saddened by what happened to your friend and I truly would like to know what happened to her. Did she have no doctor that could help her through this? There are clindy IV's for people that need to get the swelling and inflammation under control. She could have dropped back her dosage to something more manageable. She could have stayed on some of the traditional meds until the AP had a chance to work (not a real good idea if you are trying to kill critters but sometimes it's the only option - me - I'd do the clindy because it's killing stuff too). On different boards I have been told that something bad happened to so-and-so but when I ask for more info I never get a response. Please consider giving your friend my email address or possibly having her post. I could learn from her - and with my history - might need the info in the future.
Pip
Pip- your rheumy could not even spell your diagnosis correctly? Now, THAT'S scary! PatYep - talk about scary! The dude kept saying 'best fit' because I had so many other things that supposedly were not typical of RA like neurpathy etc.
He's also the dude that when we went back and said we want Minocin he just said, "well, it's better than any medicine I could give you." Hubby was furious because, as he said, 'so, why didn't he suggest it first'? That's after I was told they'd try this traditional med for 3 months and then another and then another until I was on them 8 years (GP's words) and THEN they'd try antivirals. This dude knew what I was looking for and didn't even mention the possibility of AP. These guys know about this - and don't say anything.
Technically, he's my doc tho - I don't have a lot of choice where I am. He told me he had other patients on AP but it didn't really work for them. While I haven't seen him since May, I send him emails of my progress. He seems happy that I'd doing so well. But...he is NOT monitoring me in any way. So what is he saying when the next patient asks him about AP???? I'm still betting he hasn't changed.
I think he wrote the scrip thinking that I'd get knocked on my butt and just come back for the traditionals. But I lucked out. I just don't think a rheumy like mine would look out for a person like Anna's friend - if their goal is to get you on the traditionals. She should have never gotten that bad - there are things the patient and the doc can do to bring the inflammation down if you are really infected and toxic die off is really bad. I feel so sorry for her - but unless I hear otherwise - I'd bet the farm the doc was responsible. Sorry, Anna.
Pip - my friend had a doctor in the uk and i think she also had some kind of telephone contact with a doc in the US. she travelled for miles to see the specialist in the uk. it still was disasterous. anna_uk
Anna,
I am not denying it was disasterous - I just want to understand why. If she had contact with one of the top dogs, they are well versed in how to stop or slow down the herx. Heck, there is even research on taking MORE Minocin will stop a herx - which goes more into DMARD use of the drug and not something I was willing to do because I wanted maximum bug killing.
Do you think there is any way she would email me? I am very happy with AP and my progress - but like I said before - I am a medical error magnet. If something goes wrong, it will. I need to understand any 'adverse reaction' possible and have a game plan on what to do if it does. For example - I am convinced that I am going to get Mino induced Pneumonitis. This is drug-induced pneumonia. This is an extremely rare side effect in which the docs all think you have pneumonia and try to take you off the drug. I think I am going to get this even tho I did not test positive for c. pneumonia because 1) they take a vial of blood and you hope the beastie swims in 2) I am a smoker 3) I have had atypical pneumonia and brochitis MULTIPLE times and 4) c. pneumonia is linked to heart disease and there is heart disease all over my family. My lungs are my weakest organ and I find it inconceivable that they are not compromised. Therefore, eventually those buggers are going to reactivate. My game plan is to back off the meds, reducining my dosage, and cough my lungs out in hopes of killing them. I am convinced the drug-induced diagnoses are just herx reactions and why would I want to stop killing them when I finally have them on the run? Why would I want to kill them in my joints but not in my lungs?
As you can see - I had to know what could go wrong so I could make a plan.
Please give her my email.
Thanks,
Pip
Hi Pip, I jisut want to say I'm still working through all the info on this thread, and to tell you I appreciate it!No, not 'no genetic basis', just that the genes themselves are not the trigger. Again, I'm no scientist, this is just a condesation of a whole bunch of stuff I've read for years, even before I got PRA. And I can be real wrong - it's just what I think is going on. I think we have an inherited predisposition to these diseases and something kicks on that gene. In fact, in a lot of cases we may inherit the mycoplasma for certain diseases; for example heart disease. My question is, can/do we pass this on to our children?
My grandmother had heart disease - all her kids had heart disease, and so far, all their kids except 4 (us) because we're not in 'heart attack range' yet. The only other thing I can think of is the food. (I know, back to the food). So think about it, what if heart disease is inherited? They say it runs in families - but there isn't a lot of genes that actually point to heart disease. One thing that influences heart disease is the type of food we eat - in our family that would be fried foods and a lot of bread products (Slavic LOL). Which could tie into food sensitivites or allergies? In this case food would be an environmental trigger, see!
I wonder how many of us with RA have food sensitivities? Years ago a dermatologist told me that I had a lot of food allergies - just by looking at the back of my arms from the shoulder to the elbow. Apparently if you have food allergies you get these little red bumpy things that look like acne but isn't. So that brings us back to a hyperpermeable gut lining. Constant inflammation in the intestines could lead to AI diseases.
What if our bodies are battling multiple onslaughts at the same time? And we're under stress so increase the bile and acids in the stomach. Something gets out into the bloodstream and it's recognised as 'foreign' so it tries to evade the body's defenses? And it tries to attach itself to the first weak spot it can find in the body's defenses? For me that would be PRA but for my hubby it would be diabetes and my baby it would be vitiligo.
If these diseases were more genetic we would see many more examples of your sister and her mother. Instead, what is much more common is different autoimmune diseases in the same immediate family. For example one sister has SD and another has Lupus. Sorry, but if I were a betting girl, I'd not bet on the odds of THAT happening naturally. History would show that 10,000 years ago something like that should die out - it's called evolution.
I think the genetic influence is the mitrochondrial DNA. They used to think that this was just 'junk' DNA but are finding more and more that even tho it has this weird stuff floating around in it - wierd stuff that they don't even know what it does - is much more important than they know. And get this, they don't even have strong enough microscopes to really start studying it!
Anyway - mDNA is inherited directly from the mother - no recombinent 50% of the fathers' DNA here. In cutting edge fertility treatment they are taking the double helix out of the ova and putting in another double helix from a doner - and guess what??? - the resultant 'baby' (animal not human - no where near human trials yet) LOOKS JUST LIKE THE OVA'S MOTHER. I think the mDNA is what tells which (weak) gene to kick on because evolution would seem to dictate that the body would want to 'keep going' and if it had to 'sacrifice' something it would it's weakest link.
This would also explain why we start with one 'minor' disease - ie thyroid or vitiligo or IBS' and move on to the more damaging diseases like RA, Lupus, MS etc. The body, in response to some infection, discards a gene that it thinks is not that important to keeping the body going.
I too noticed the fact that there are a lot of nurses on these boards - not the docs. So, who preps the patient? Not the doc.
Also, one more comment on the risk to ANY treatment. This just came to me from arthrits.org. It's not showing the web address so I copied the link. Hopefully it will work in the post.
|
Do Biologics Cause Multiple Sclerosis? |
Does anybody else think this doc is a patronizing fool? And from this report, this is permanent MS - not something that will go away when you stop the meds like with Mino.
Anyway, hope this is not more of my babbling. I'm just trying to learn this stuff.
Pip
Pip, I applaud you for taking such an active stance in the treatment and understanding of your RA. Clearly you want to partner with your doctor in achieving the best possible results.Hillhoney - thanks for understanding where I'm coming from - mostly :-)
I do want a doctor partner relationship - but so far I have yet to get one. I am a slow learner - but I have finally learned that the only person responsible for my health is me. In my state at the great U the docs are only allowed 6 minutes per patient - 6 minutes - I need to be able to communicate to these docs exactly what I want in their time frame and to rationally explain or counter their hesitancy to do what my research tells me is best for my body. Am I a doc - no - but since I can invest hours in research for my health and can hit them up with studies when need be - I can guarantee I am more up-to-date than most docs - who appear to me to stop learning the second they leave med school. Sad, but looking at the posts on most boards, very decidedly true.
In normal situations the saying "A little knowledge is a dangerous thing" can mean one would be worried about rare possibilites - but unfortunately - my history has shown that if its a rare freak occurance - it's going to happen to me. LOL (Well, LOL now because I'm not at the point of death). When one is unconscious one cannot tell the docs what to do - so I've learned to do the research ahead of time and make sure my husband knows what to do - and he, unfortunately, is well versed in my ability to attract the most idiotic doc or nurse in the world to take over my case. He's gotten into the habit of standing over my bed or sleeping at the hospital when something happened to me because he's caught the screw-ups on 2 separate occasions. Check the side effect profile of Minocin - it's practically safe enough for babies - but not for me with my lightening rod medical error aura. Trust me on this :-)
GoGo - I so agree about gathering and storing the info. I'm actually beyond that phase right now and can go days without feeling that I'm ill (you guys can't tell that because I'm posting about it :-) When the Mino takes the pain away you forget you were ever ill - if you can believe that. Did I post about our yearly pilgrimage to get our Xmas ornament? Every year we get something that symbolizes our year together. We're standing in the store and I'm babbling about this one because the baby lost her first tooth or maybe that one because she started school and I look at the hubby who has this sick twisted look on his face and he says 'you really don't remember, do you?' and I kind of freeze and think, "crap, who died" and realize that nobody died this year and I have no idea what he's talking about. And he says, "PRA, you have PRA" and this shock runs through my body - I forgot all about it. Damn. So we ended up getting an old fashioned milk carrier with 6 bottles of milk as the ornament. From the first time I could open a gallon of milk by myself. LOL
Now all I have to do is tell others about AP. :-)
Pip
Hi - am finding all of this very interesting. I posted on another thread that I obtained a copy of my gt.gt. grandfather's death certificate from 1862 on my mothers side. He died at 79 from rheumatism & paralysis, I have heard of another aunt on my mother's side who had RA, I am in contact with a relative in Scotland who has a sister with RA, I have a cousin with RA & I also have RA. As all of this RA is from my mother's side of the family going back nearly 150 years it seems to me to be likely there is a genetic link. However, quite a few of us have had a lot of stress in our lives which I have read can trigger a dormant gene & there is also a strong history of food allergies in our family.Anyway, Cassandra - I'm sort of revising my previous statement. There are some genes involved, and BTW, you're the second person I've met who can show just RA in a family. Nothing else? No SD, Lupus or any other AI disease? Another person I met has 3 gens of MS. But everybody else, and I mean everybody, has different AI diseases in the same family.
So what if the disease that gets expressed is the gene that we have? IE - we have the gene for RA then we get RA. No, this doesn't explain the cascade effect of multiple diseases in one person. You know, RA, FM, CFS, thyroid etc. What's the odds of having nothing but bad genes?
Also, there is an argument that once a gene is 'on' it is on for life. But that is not true - even if a small amount of people get off ABX for the various disease - they got off the ABX. If the gene was still on then that would be impossible. So, kill enough of the myco's or infection and the gene goes dormant?
Which would mean that if you remove inflammation in the gut then you could 'cure' diabetes, Celiac, food sensitivities, etc, etc, etc.
I'm getting another headache :-)
Wolf!
Please run a search on me (vain thing aren't I - LOL) and see some of my more in depth and loooong posts. I posted some cool links. Got any research you want to trade? LOL
Anybody interested in forming a research club? Maybe our own thread on the boring newspaper articles and studies that we have trouble wading thru? Combined I bet we can tackle it? We could call it gimpsRus in honor of GoGo who started this whole thread.
Pip
In my excitement I posted this on the wrong thread -
GoGo,
That article you posted about the ptpn22 - the supposed rheumatoid epitope. Notice 1) no mention of the infection connection - they don't even think about it as a possibility and 2) notice that it regulates much more than RA. Lupus, Diabetes, everything we've been talking about. Hmmmm.
Pip the embarrassed
Grandmother-Lupus, Grandmother's sister-MS, Me-RA, my sister-RA, my sister's son-Type 1 DB. Time to get some new genes!I dont know if this is relevant here but a lot of people of Northern European descent have coeliac disease - the numbers are quite high and increasing dramatically from what I have read - possibly a diet high in grain contributes to this. Coeliac disease is an auto immune disease and we get back to RA having links to the digestive system & leaky gut syndrome. Anyone have any thoughts on this.Or maybe the infection knows what to hit first in order to disable the body so it can proliferate? That would fit in with what we know about how diseases mutate over centuries in order to not kill the host - i.e. syphillis.
Justoday - you are an example of what I mean when I say it's not just the genes - I couldn't get Lupus because I didn't have the gene for it - so I got PRA. Anyway, please reread the link on page 2 of this thread about the diabetes. Interesting, huh?
What if this is only a defense mechanism? I think AI diseases are the body's long term defense on fighting an intercellular infection. Like Malaria is a response to a parasite.
Cassandra - I find that very interesting. Here's why (granted I have gaps in my knowledge and I'm jumping around here but...you'll get the drift)...
IF RA was something we sent back to Europe in the late 1600's and therefore was some sort of previously unfamiliar microbe...
And if you look at maps on the occurance of MS in the world and you see that a person in the Northern US and Canada has something like a gazillion more chances of developing MS than a person in S California or points south...
If Autism has had a 10,000% increase in a decade even after accounting for greater recoginition of the problem and changing profiles for identifying the disease...
If Celiac has been identified as 1 out of every 200 people (some say 1 out of every 40 people) and our ancestors ate wheat etc. without problems for millenia...and you say it's mostly northern European descent...
I warned everybody at the top of page 2 - IT's IN THE FOOD! Ok, very Twilight Zone, but I'm not kidding. LOL
Think about it - whats changed in the last generation that is different than 3 centuries ago?
The rise of Agri-Business. They are either treating the crops with something that is an irritant to us...or the crops themselves harbour an infection of some kind that does not get destroyed on processing.
Kind of like those kitchen moth larva I was talking about earlier. (Yuck).
So...if we have a hyperpermeable gut and toxins are getting into the body - we have to repair the damage to the gut to get any hope of a long term cure without Antibiotics - and get rid of the beasties setting up house in the body. Do both and you have a shot at a cure in my opinion. Skip the gut and you don't.
So...if you can reduce the inflammation, heal the gut, and kill the beasties then, in theory, the gene for the disease will turn itself off! Why keep going if there is nothing intercellular to react to?
Pip the long winded :-)
I grew up believing it was an Irish disease! (My mother has had it since infancy and I was dx a few years ago) But the belief that celiac is a "Northern European disease" has been disproven. The fastest growing population of celiacs is currantly in North Africa. It is a worldwide disease.
There has been discussion among geneticists that celiac might be a reaction to generational famine. Interesting stuff. Unfortunately, most of it flies right over my head.
In Dr. Green's book, Celiac Disease A Hidden Epidemic he responds to the question, "If celiac disease is so common, why did those genes get encouraged?" : "It is postulated that celiac disease somehow conveyed a survival advantage. A study of refugee populations in northern Africa suggested that the damaged intestine offered less surface area for bacterial infections to bind on to and cause diarrhea. Therefore, fewer children died from chronic diarrhea commonly found in developing countries. Celiac disease was protective in that respect. Patients with active celiac disease tend to have low cholesterol levels because they are not properly absorbing cholesterol in the intestine. Does this infer less cardiovascular disease? And did this somehow convey a survival advantage? Arguing againist this theory is the fact that, until the twentieth century, most people died of infections and/or trauma well before they were old enough to develop cardiovascular disease, today's major killer."
Lynk
Playing Devil's Advocate -
Ireland wasn't a developing nation when they had the potato famines etc.
You said, "The fastest growing population of celiacs is currently in North Africa. It is a worldwide disease." but that is exactly my point. Disease percentages should remain constant to populations and their growth rates. Nothing should be fastest growing. Even if Celiacs worldwide bred like bunnies with other Celiacs there should not be the increase in Celiacs that we are seeing.
Same with Autism - granted - geeks meet, marry and have babies with the advent of the Internet. But a 10,000% increase in a decade. Genetically this should be impossible.
In your excerpt you quoted, Dr. Green is postulizing that there is an inherent survival advantage to Celiac...so what would be the advantage to Lupus, RA, MS, diabetes etc? No offense - but most current research is NOT focusing on the possibility of an infection connection in ANYTHING - let alone Celiacs. It seems that Dr. Green was trying to account for the increase in Africa - which should not be happening if it were just genes. Am I making sense - I wish I could explain what I'm trying to convey - instead I kind of push at it and it's probably coming off wrong. I think I need a translater. :-(
With Diabetes we know that the types of food can trigger insulin resistance etc. In theory, don't eat those foods and you can keep your blood sugar in line (type 2's). But if you look at that article on diabetes research on page 2 of this thread, doctors were amazed to find out that 1) type 1 and 2 diabetes were almost the same and most importantly, 2) take away the inflammation and not only does the patient start producing insulin again - something researchers have been saying is impossible once an AI disease starts - the patients continue to do so for months after the inflammation is removed. Who, anywhere, is looking at doing the same thing with Celiacs? What if the only difference between the type 1's and 2's (and the new LADA diabetics) are the severity of the onslaught? Like mild RA and severe RA? And food sensitivites and Celiacs? Just a thought....
The MS overset map I mentioned - there was a post on the Roadback that mentioned that Canadian Wheat was a type that had the highest concentration of gluten out of all the wheats available.
Going back to the idea that RA was unheard of in Europe for millenia but surfaced after the pilgrims and intercontinental travel began in the late 1600's. The Europeans prior to this time were alone with the Africans and the Mid-Easterners. The maps all showed nothing where N & S America were. The indigenous American population were left alone with their own gene pool for centuries - with the possible exception of the people that walked over the Bering Strait and a few visits by Norwegians, I think. So - what was the use of the RA gene prior to that? People had the gene - but it did not activate. Except in the Americas. Just a thought...
Finally - what is one of the number one US exports year after year?
Wheat.
Where does it go?
It used to go to the Soviets (what rate is Celiac growing in the former Soviet Union?) The rest goes to Africa.
I think the natural survival postulated by Dr. Green is wrong - the reason we have these diseases is the body is trying to fight something off.
Pip
You're a True Believer, Pip. There's no arguing with that.Damn, true believers are always annoying.
Pip
No, no! TB's are fascinating. It's true, singlemindedness is a two edged sword, but the world would be a much smaller, dimmer and less exciting place without them!Alan
Hey All,
Alan,
When I first read "The New Arthriris Breakthrough" by Henry Scammell it was mentioned that Dr. Brown 'cured' gorrilla's at I think it was the National Zoo with ABX. And I thought - so what? - if it works on people it would work on gorilla's. Then they had this section in there about researchers trying to figure out what the mycoplasma's in synovial fluid did. Did it just live in the body, etc. etc. etc. So the researchers took some of the infected fluid out with needles and injected it into the healthy joints of bunnies. Guess what? The bunnies developed RA. No matter how you slice it - that smacks of 'infection' to me.
And as far as I can tell - none of the bunnies fought the disease off - which leads to more questions. What about the 'some people have a gene or something that makes us more of a target to AI diseases" from the respected researchers who are looking to turn these diseases off? If enough of this stuff gets directly into a joint is it too late? In which cases would it not matter? (Hold this thought until the end :-)
There is now a lot of research showing some animal has X and it's taken out of the animal and put into another animal and Voila! the 2nd animal has X. To find it, look under vetranarian research. For some bizarre reason - not a lot of NIH funded research is looking into the connections for humans. Hmmmmm.
Could it be something else in the same sample - heck yes. The problem with the infectious theory is that the entire field was denigrated and mocked for decades so that now there are very few people looking into this. This has starting to change since Dr. Marshall was able to prove that H. Pylori caused stomach ulcers - but the old researchers are still blocking the way for the young Turks coming up. Think about it - Marshall got the Nobel prize but 25 years later only 46% of GI docs routinely prescribe ABX for ulcers today.
Another problem is that until recently the didn't have Darkfield microscopes which are powerful enough to show these outposts in the blood. In Dr. Brown's day it was just a hypothertical. Now they know there are microbes there - and have no idea what a bunch of the microbes are. There are something like 200 varieties of myco's alone and only like 5 tests. That is not accounting for parasites, amoebas, etc. etc. etc. The tests they do have are often faulty because the tests are inaccurate - we're talking tiny little critters here.
Again, I'm back to the question - what is the value of these genes when one does not have RA, MS etc. What is the inherent survival quotient?
I also disagree that individual testimonials do not help - sure they do - it's called ancedotal evidence. Get enough people that say 'an anti-inflammatory diet helped me' and we know that something is going on in the gut. So they start researching and what does one study now say? "70% of all AI diseases start in the gut". I'm not a scientist - but I'm saying the number is higher than that - I think it's 100%. But thats just me - your milage may very.
And how do these beasties know where to home in on? Why does H. Pylori gravitate to the gut? Why does Clamydia Pneumonia go for the nerves? And was also found in heart plaque. So how come the researchers that found H Pylori said they didn't know what happened first - the myco or the plaque - but they didn't ask how the beastie got out of the gut in the first place?
Cassandra -
You just mentioned a lot of the things I've been reading. Which is exactly my point. What if we have food sensitivies that eventually kick on the Celiac AI disease? If they can cut the inflammation totally (like the diabetic research) might they not be able to 'turn off" the Celiac AI response?
Another question - hubby pointed out last night that 'survival of the fittest' would not apply to any disease that popped up after a person reached reproductive age. It would have had to be fatal prior to a person getting old enough to marry/reproduce and pass the gene on. So...much of this stuff would have had to have something from both the mother and the father to possibly activate - like Tay Sachs. Both the mom and day have to have a gene and then out of 4 kids 1 could get the disease (theoretically). You just mentioned that Celiac used to be fatal in those days - so, in order to be continually passed on one would think that like Tay Sachs it needed a gene from both the mother and father to manifest.
Yet we are not seeing this today.
Granted - there is a lot of gluten in pre-packaged food. Which would not normally be there. What if it's not just the crops themselves that have an infection - but an infection/irritant is in modern packaging?
Ok - special cases that I mentioned earlier. One thing that has been bugging me since I was first diagnosed with Palindromic Rheumatoid Arthritis is the 'remission rate' for my disease.
Palindromic RA is greatly debated. Some researchers say it is a subset of RA; other say it is a completely different disease. It is an exceding rare disease. It is different in that it usually hits the big joints first, the 'attacks' are migratory, and the pain is off the scale (like gout pain). Another big difference is that while the pain and inflammation is there - the joints are not being damaged. Then it just goes away - nada - nothing, not a twinge, for a while. Some people report nothing for years. I know of one person that said she had nothing, not a twinge, for 10 years between attacks if you can imagine that.
Anyway, as t