NO RA yet | Arthritis Information

 

Hi All,

If I knew then what I knew now, I would take 200mg Minocin a day as well as large doses of probiotics for 16 months.

Also, fish oil.My personal belief that there is no preventative -- early diagnosis is your best bet. Just because you don't have a positive RF, doesn't mean you don't have RA -- as up to 30% or more who have no RF, do have the disease. The high Anti-CCP would be enough to have a referral to an rheumatologist if pain continues.

No preventative measures that I know of. Pandora - Pip, I said 16 months because that's what Dr. Mirkin says.

Pandora, I strenuously urge you to listen to this short radio broadcast---it should take you about 5 minutes. First he talks about a cross dressing runner, but after that he talks to a man who's mom is in the same position you are. PLEASE listen to this:
http://www.drmirkin.com/mp3s/hour228.mp3

Thank you all very much for the tips!

Pandora, Well, the Mother Bug is gone, but the Baby Bug is till there:


Mycoplasmas - Stealth Pathogens



By Leslie Taylor, ND
January, 2001
Mycoplasmas are a specific and unique species of bacteria - the smallest free-living organism known on the planet. The primary differences between mycoplasmas and other bacteria is that bacteria have a solid cell-wall structure and they can grow in the simplest culture media. Mycoplasmas however, do not have a cell wall, and like a tiny jellyfish with a pliable membrane, can take on many different shapes which make them difficult to identify, even under a high powered electron microscope. Mycoplasmas can also be very hard to culture in the laboratory and are often missed as pathogenic causes of diseases for this reason.

The accepted name was chosen because Mycoplasmas were observed to have a fungi-like structure (Mycology is the study of fungi - hence "Myco") and it also had a flowing plasma-like structure without a cell wall - hence "plasma". The first strains were isolated from cattle with arthritis and pleuro-pneumonia in 1898 at the Pasteur Institute. The first human strain was isolated in 1932 from an abscessed wound. The first connection between mycoplasmas and rheumatoid diseases was made in 1939 by Drs. Swift and Brown. Unfortunately, mycoplasmas didn't become part of the medical school curriculum until the late 1950's when one specific strain was identified and proven to be the cause of atypical pneumonia, and named Mycoplasma pneumonia. The association between immunodeficiency and autoimmune disorders with mycoplasmas was first reported in the mid 1970s in patients with primary hypogammaglobulinemia (an autoimmune disease) and infection with four species of mycoplasma that had localized in joint tissue. Since that time, scientific testing methodologies have made critical technological progress and along with it, more mycoplasma species have been identified and recorded in animals, humans and even plants.

While Mycoplasma pneumonia is certainly not the only species causing disease in humans, it makes for a good example of how this stealth pathogen can move out of it's typical environment and into other parts of the body and begin causing other diseases. While residing in the respiratory tract and lungs, Mycoplasma pneumonia remains an important cause of pneumonia and other airway disorders, such as tracheobronchitis, pharyngitis and asthma. When this stealth pathogen hitches a ride to other parts of the body, it is associated with non-pulmonary manifestations, such as blood, skin, joint, central nervous system, liver, pancreas, and cardiovascular syndromes and disorders. Even as far back as 1983, doctors at Yale noted:

"Over the past 20 years the annual number of reports on extrapulmonary symptoms during Mycoplasma (M.) pneumoniae disease has increased. Clinical and epidemiological data indicate that symptoms from the skin and mucous membranes, from the central nervous system, from the heart, and perhaps from other organs as well are not quite uncommon manifestations of M. pneumoniae disease."(15)

This single stealth pathogen has been discovered in the urogenital tract of patients suffering from inflammatory pelvic disease, urethritis, and other urinary tract diseases (8) It has been discovered in the heart tissues and fluid of patients suffering from cardititis, pericarditis, tachycardia, hemolytic anemia, and other coronary heart diseases.(9, 10, 14) It has been found in the cerebrospinal fluid of patients with meningitis and encephalitis, seizures, ALS, Alzheimer's and other central nervous system infections, diseases and disorders.(11-13) It has even been found regularly in the bone marrow of children with leukemia.(16- 18) It is amazing that one single tiny bacteria can be the cause of so many seemingly unrelated diseases in humans. But as with all mycoplasma species, the disease is directly related to where the mycoplasma resides in the body and which cells in the body it attaches to or invades.

Today, over 100 documented species of mycoplasmas have been recorded to cause various diseases in humans, animals, and plants. Mycoplasma pneumonia as well as at least 7 other mycoplasma species have now been linked as a direct cause or significant co-factor to many chronic diseases including, rheumatoid arthritis, Alzheimer's, multiple sclerosis, fibromyalgia, chronic fatigue, diabetes, Crohn's Disease, ALS, nongonoccal urethritis, asthma, lupus, infertility, AIDS and certain cancers and leukemia, just to name a few.(1-6) In 1997, the National Center for Infectious Diseases, Centers for Disease Control and Prevention's journal, Emerging Infectious Diseases, published the article, Mycoplasmas: Sophisticated, Reemerging, and Burdened by Their Notoriety, by Drs. Baseman and Tully who stated:


"Nonetheless, mycoplasmas by themselves can cause acute and chronic diseases at multiple sites with wide-ranging complications and have been implicated as cofactors in disease. Recently, mycoplasmas have been linked as a cofactor to AIDS pathogenesis and to malignant transformation, chromosomal aberrations, the Gulf War Syndrome, and other unexplained and complex illnesses, including chronic fatigue syndrome, Crohn's disease, and various arthritides."

Mycoplasmas, unlike viruses, can grow in tissue fluids (blood, joint, heart, chest and spinal fluids) and can grow inside any living tissue cell without killing the cells, as most normal bacteria and viruses will do. Mycoplasmas are frequently found in the oral and genito-urinary tracts of normal healthy people and are found to infect females four times more often than males, which just happens to be the same incidence rate in rheumatoid arthritis, fibromyalgia, Chronic Fatigue and other related disorders.(7) Mycoplasmas are parasitic in nature and can attach to specific cells without killing the cells and thus their infection process and progress can go undetected. In some people the attachment of mycoplasmas to the host cell acts like a living thorn; a persistent foreign substance, causing the host's immune defense mechanism to wage war. This allergic type of inflammation often results in heated, swollen, and painful inflamed tissues, like those found in rheumatoid diseases, fibromyalgia and many other autoimmune disorders like lupus and MS, Crohn's and others. In such cases the immune system begins attacking itself and/or seemingly healthy cells. Some species of mycoplasmas also have the unique ability to completely evade the immune system. Once they attach to a host cell in the body, their unique plasma and protein coating can then mimic the cell wall of the host cell and the immune system cannot differentiate the mycoplasma from the body's own host cell.

Mycoplasmas are parasitic in nature because they rely on the nutrients found in host cells including cholesterol, amino acids, fatty acids and even DNA. They especially thrive in cholesterol rich and arginine-rich environments. Mycoplasmas can generally be found in the mucous membrane in the respiratory tract. They need cholesterol for membrane function and growth, and there is an abundance of cholesterol in the bronchial tubes of the respiratory tract. Once attached to a host cell, they then begin competing for nutrients inside the host cells. As nutrients are depleted, then these host cells can begin to malfunction, or even change normal functioning of the cell, causing a chain reaction with other cells (especially within the immune and endocrine systems). Mycoplasmas can even cause RNA and DNA mutation of the host cells and have been linked to certain cancers for this reason. Mycoplasmas can also invade and live inside host cells which evade the immune system, especially white blood cells. Once inside a white blood cell, mycoplasmas can travel throughout the body and even cross the blood/brain barrier, and into the central nervous system and spinal fluid.


FOOTNOTES

Baseman, Joel, et.al., Mycoplasmas: Sophisticated, Reemerging, and Burdened by Their Notoriety, CDC, Journal of Infectious Diseases, Vol 3, No.1, Feb 1997
S-C. Mycoplasmas and AIDS. In: Maniloff J, McElhaney RN, Finch LR, Baseman JB, editors. Mycoplasmas: molecular biology and pathogenesis. Washington (DC): American Society for Microbiology, 1992:525-45.
Nicolson G, Nicolson NL. Diagnosis and treatment of mycoplasmal infections in Gulf War illness-CFIDS patients. Intl J Occup Med Immunol Toxicol 1996;5:69-78.
Wear DJ, et.al. Mycoplasmas and oncogenesis:persistent infection and multistage malignant transformation. Proc Natl Acad Sci USA 1995;92:10197-201.
Ekbom A, Daszak P, Kraaz W, Wakefield AJ. Crohn's disease after in-utero measles virus exposure. Lancet 1996;348:516-7.
Taylor-Robinson D. Mycoplasmas in rheumatoid arthritis and other human arthritides. J Clin Pathol 1996;49:781-2.
Dr.Harold Clark, The Intercessor, June 1993, The Road Back Foundation, Delaware OH.
Goulet M, et.al., Isolation of Mycoplasma pneumoniae from the human urogenital tract. J Clin Microbiol 1995;33:2823-5
Daxbock F, et.al., Severe hemolytic anemia and excessive leukocytosis masking mycoplasma pneumonia. Ann Hematol. 2001 Mar;80(3):180-2.
Higuchi ML, et.al., Detection of Mycoplasma pneumoniae and Chlamydia pneumoniae in ruptured atherosclerotic plaques. Braz J Med Biol Res. 2000 Sep;33(9):1023-6.
Socan M, Neurological symptoms in patients whose cerebrospinal fluid is culture- and/or polymerase chain reaction-positive for Mycoplasma pneumoniae. Clin Infect Dis. 2001 Jan 15;32(2):E31-5.
Bencina D, et.al., Intrathecal synthesis of specific antibodies in patients with invasion of the central nervous system by Mycoplasma pneumoniae. Eur J Clin Microbiol Infect Dis. 2000 Jul;19(7):521-30
Smith R, et.al., Neurologic manifestations of Mycoplasma pneumoniae infections: diverse spectrum of diseases. A report of six cases and review of the literature. Clin Pediatr (Phila). 2000 Apr;39(4):195-201.
Umemoto M, Advanced atrioventricular block associated with atrial tachycardia caused by Mycoplasma pneumoniae infection. Acta Paediatr Jpn. 1995 Aug;37(4):518-20.
Lind K. Manifestations and complications of Mycoplasma pneumoniae disease: a review.Yale J Biol Med. 1983 Sep-Dec;56(5-6):461-8.
Alexander FE. Is Mycoplasma Pneumonia associated with childhood acute lymphoblastic leukemia? Cancer Causes Control. 1997 Sep;8(5):803-11.
Hall JE, Mycoplasma pneumonia in acute childhood leukemia. Pediatr Pulmonol. 1985 Nov-Dec;1(6):333-6.
Murphy WH, Gullis C, Dabich L, Heyn R, Zarafonetis CJD. Isolation of Mycoplasma from leukemic and nonleukemia patients. J Nat Cancer Inst 1970;45:243-51.
More research here



To understand how mycoplasmas can cause widespread disease, we must first look at the species' unique properties and interactions with host cells. Unlike viruses and bacteria, mycoplasmas are the smallest free-living and self-duplicating microorganisms, as they don't require living cells to replicate their DNA and growth.


Read more:

http://www.rain-tree.com/myco.htm

(PS...I'm not really sure if the age of studies is relevant, unless, of course, new contradictory information has been discovered since then. People figure stuff out and then move on to the next thing, they don't reinvent the wheel over and over again)Hi GoGo Pandora, no problem. You asked if there was any way to head RA off at the pass, this is one (and maybe the only) solution offered to you that has worked for some people. It's definitely up to you if you want to take the suggestion or not.

If anyone had a sure thing or knew what causes RA, none of us would be here now. So you could try this, or something else, or just let the RA take it's course. It doesn't really matter to me which one you pick.PS...no one is really making huge profits of sales of off patent tetracycline antibiotics. I doubt "rain-tree" would make a penny if you decided to follw that course.LOL Pandora - of course the Infectious theory people are very one sided - as if the Autoimmune theory people are any less so. Pip, where do you get the statistics from?

That was my question.  Not to be argumentative, but it seems to be a high success rate if true.

Pandora - glad you have an appt.  I'd say it's more of a "window-of-opportunity-for-remission, not preventation"  Whatever treatment you decide on, I wish the best.

Unfortunately, they don't count.  Those are just the people I've helped.  If I could figure out a way to get that turned into a study.... Oh, Pip!, girl, that was so misleading. And that's part of the reason I think we need these docs to start tracking us.  On AF there we're 2 people with strokes and 2 with cancer in the same year period I was hanging out there.  But if you were to suggest to a doc that it might possibly be the meds we're using, they immediately switch over to 'it's the nature of the disease'.  So, now they're looking at how some abx can cause liver failure - but have we seen the same type of study for the biologics?  And I bet we don't.  Nobody is going to shoot a money maker in the foot.  So basically what you're saying Pip is that you have no proof, just anecdotal evidence....... I never give a lot of credence to "My doctor tried it and she/he said....", because I strongly suspect those doctors didn't look to far beyond the studies, which all use 200mg every day. They probably do not fine tune or try long enough---the therapy does usually take a bit longer than a few months.

Imagine if every doctor just prescribed 10mg MTX, didn't know anything about polytherapies that can go with it, tried it for, say, 4 weeks only, and never adjusted the dose?

So I consider those statements also anecdotal evidence. I am only interested in what docs who really know the therapy say about clinical efficacy.Pip, ROFLMAO, this is too much, throwing out statistics from your patients.  probably people you have never met...Lev is right, you should be embarrassed about all this Pipology you throw out there...I guess you are writing a book to follow????

GoGo & Pip

Minocycline in Reumatoid Arthritis:
http://www.annals.org/cgi/content/full/122/2/81

Road Back:
http://www.roadback.org/

The MIRA study is quite old now. It was commissioned a couple weeks after the death of the doctor who devoted his life to researching antibiotics to treat rheumatic diseases.With your superiour research skills and discerning analytical mind, you should have no problem finding quite a few studies on the topic. I'm hoping when you find a good solution to your problem you will let us know for the benefit of others.

Except, Pandora, it's a hell of a longer, harsher, road back to recovery for those who've failed all the traditional meds.  You might lurk on the Roadback - quite of few of them say 'I tried it before, it didn't work, now everything else has failed and I'm going to MAKE this work this time'.  That's the preserverance I was talking about.  With all your research background, you understand the main decision you have to make is, as I've said before, which cult are you buying into?  Infection/Danger Model or Autoimmune?  If you believe in autoimmune - then the choice should be easy - do the traditional road for as long as you can.  Autoimmune sounded like poppycock to me - I chose the Infection Model.  If you run a search on AI there are a bunch more studies you can find links for - or try PubMed - lots of info on 'minocycline' and 'disease of interest'.  Not only RA, Lupus, Scleroderma etc. [QUOTE=Pip!]Except, Pandora, it's a hell of a longer, harsher, road back to recovery for those who've failed all the traditional meds.  You might lurk on the Roadback - quite of few of them say 'I tried it before, it didn't work, now everything else has failed and I'm going to MAKE this work this time'.  That's the preserverance I was talking about.  With all your research background, you understand the main decision you have to make is, as I've said before, which cult are you buying into?  Infection/Danger Model or Autoimmune?  If you believe in autoimmune - then the choice should be easy - do the traditional road for as long as you can.  Autoimmune sounded like poppycock to me - I chose the Infection Model.  If you run a search on AI there are a bunch more studies you can find links for - or try PubMed - lots of info on 'minocycline' and 'disease of interest'.  Not only RA, Lupus, Scleroderma etc. [/QUOTE] [QUOTE=Lynn49] That's exactly the point!  All your puffing about AP is ancedotal and you have no studies to back up any of your assertions.  At least in my case, I have studies that back up my experience. 
[/QUOTE]

"Puffing"---that's so rude. Lynne, I wish you would decease your insulting and bullying behaviour.

Pip also has studies to back up her personal experience of doing well on AP. How come your studies are "evidence" and hers are "anecdotal"?

As for, "a lot of people who claim they are doing so well on AP are also still using traditional DMARDS.", as far as I am aware I am the ONLY person here on both AP and DMARDS who is also claiming to be doing well. Most people here who claim they are doing well on AP are only on AP, (as far as I know). You should stop twisting stuff up and exaggerating to serve your purposes."Puffing about AP" is an understatement.  Sorry Pip, I think you need to step back and look at how preposterous your claims sound.
Backing Lynne up on her choice of words doesn't make it any less rude or bullying, it just makes you complicit.

Pip can write about anything she wants, just as we all can. Persoanlly, I find her posts very useful.Hell, she can write that minocin will solve the current economic crisis for all I care.  You're right, she's free to write about it.  Never said anything different.  Still doesn't change how ridiculous the claims sound. Pip, Jas - Pandora, I'm in the same boat as you, only my pain has intensified and no longer eases in between bouts.  CCP was 234, a month later 300, all this started three months ago.  I have been on pain relief and have my third appointment with rheumy on Friday, where I will be starting treatment, most likely DMARDS.  We'll see what he says. Minocin will not solve the economic crisis - Obama is the script for that. Calling it puffing isn't rude, it's descriptive..... Oh, the biologics!  I get it now~ Hi Bluehour

Hi Pandora,

Maz-aust2008-12-03 17:41:32Well, if you go to Roadback, you will see most people are on DMARDS and AP, have constant side effects they blow off as herxing, have major stomach problems etc. [QUOTE=Pandora] Hi Bluehour











[/QUOTE]

I think people here can't deal with the fact that maybe they could have been helped or avoided joint damge by drugs with less potential known side effects than biologics, hence the extreme animosity towards other people's medical decisions. And then some people are just sort of obnoxious and love drama. You sure don't see people demanding people justify their use of conventional drugs like APers are constantly subjected to. That's just my opinion, of course.

I'm not as concerned with why AP works, more just that it does work.

I'm sure you're intelligent to compare the different options and make the right choice for you. Good luck with whatever you decide.As stated numerous times there is no problem that it works for some, but to make outrageous claims that it will cure everyone is the problem.  To lead people down a path of possible further joint damage is unthinkable.  MORON!!!Great, now even the "newbies" are resorting to being rude and name calling.   I've made the contacts I need in this board and will remain friends with these people.  I'm deleting my membership.  If anyone would like to keep in touch and be productive in sharing you can email me at Kristin    goldie1605@hotmail.com Well everyone is different as we can tell by this thread. I hope not to many people were scared off by this? I personally am allergic to tetracycline so i can not take it. I do believe it lowers the immune system just like other RA meds. As it has simalar properties to other drugs that lower the immune system. Look up the word Macrolide. Also it is an antiinflamatory. I personnaly am taking an anti malaria, anti amebic, anti viral, drug that is being used in cancer studies. It suppresses the immune system and i am so far not allergic to it. Chloriquine Phosphate 500 mg. So yes many different medicines and many different opinions. Keep reading and good luck with what ever you choose. It's scary and none of us ever know if we are making the right decision. Sorry if anyone was that smart we wouldn't have these problems. Most people go threw many medicines in the course of this disease. So to anyone that is doing well on a medicine thats great. But it is a tough thing to go threw. I hope you stick around and chat with us.Oh good grief, minocin is a DMARDS From the American College of Rheumatology, minocin is a DMARDS: justsaynoemore2008-12-03 19:29:22That is what i was trying to say. Minocin is an RA medicine just like other RA medicine. So I do see the problem in people taking it if it works for them.Milly, I heard you.  Closed minds cannot be opened with facts.  I hope you are doing well tonight and good luck with that pain/no pain cycle you are in.  I am now a month into having the stiffness and pain in my fingers suddenly disappear, and then suddenly last week my strength return to my hands and wrists.  AP (minocin) therapy says substantial results are not attained until after a year and I am at 15 months.  I am so happy I found this Board with people like Pip who are committed to letting other victims of RA know there is a different way.  I am so glad you are doing well. My body doesn't allow for much chioce sometimes. I have only been on this new medicine eight days. Ouch!! Had a few weeks in limbo. Trying to get caught up. But i do not feel sick all of the time on this medicine. Mostly just the pain and swelling problem at the moment. No fatigue and that is saying a bunch.Milly, after a week on AP my ice cold hand from a bad neck injury suddenly warmed back up.  Then the fatigue and feeling sick went away.  No fatigue is HUGE.  I totally understand as I was amazed when it happened, and it happened within the first few months on AP.  I am so glad you are getting some relief of one of our hardest symptoms to deal with - I hope and pray it keeps improving for you, as you have had a very rough time of it.  Congrats.  CathyI do wish that it didn't have to be a rivalry.  I think more people should be open to considering AP, but I think AP also need to be open to considering that maybe AP isn't a magic bullet that works every time, or that is appropriate for everyone.  I know that Enbrel may or may not work, and AP may or may not work.  It's not asprin for a headache, it's so much more complicated than that.  And asprin doesn't even work for a headache every time! :) I think the turn off is just the air of "my treatment is better than your treatment" (from either side).  Why is it that people resort to name calling & what seems to be this constant attempt to prove someone else wrong - what happened to listening to all the arguments and then if necessary agreeing to disagree. Maz-aust2008-12-03 20:00:09Hi Milly!  Missed you! Well, the argument is never about who should be using what.  Whatever side of the fence people are on, both say "go ahead and use what you want, I hope it works for you".  The fight is always that the other side is misrepresenting data.  It's about which side has more accurate studies.  And their is always the underlying tone that the other side is corrupt and if you believe what they say you're kind of a dimwit.Pharma is corrupt.  There are JAMA articles that prove it.