Rheumatoid lung disease

[JBJBJB]

Has any one heard about this Rheumatoid lung disease? Do this happen often to RA patients? I know my Rheumy checked my lungs all the time. Perhaps that was why.

http://health.nytimes.com/health/guides/disease/rheumatoid-lung-disease/overview.html

“Causes

Pulmonary abnormalities are common in rheumatoid arthritis, but they often cause no symptoms. The causes of lung disease associated with rheumatoid arthritis are unknown. Sometimes the medicines used to treat rheumatoid arthritis may result in lung disease.”

How scary to think RA med would help with your symptoms,  also could cause your lung disease. Wow, unthinkable.

[Jo]

[Cheryl F]

I talked to a patient who had this, it sounded very simular to the lung issues commonly experienced by scleroderma patients, but they had RA not Sclero.  The one patient that I spoke with was a patient of Dr. F's in Riverside.  I am sure that the experienced Rheumy's have seen this a time or two.  This would definitely be one of the types of situations where I would strongly encourage anyone wanting to do AP to see one of the few AP experienced Rheumatologists. 

Thank goodness it appears to be rare.

Cheryl

[Eva Holloway]

JB

I have interstitial pulmonary fibrosis. My doctor think this started from the time I was taking MTX. I was in the hospital for six days and then the pulmonary doctor injected me with a five year pneumonia shot and I went from bad to worse. Ended up having an open lung biopsy done. My lungs where filled with fluid. Took them four days to drain them.

After four years I am doing better, hardly a cough, but I am also on antibiotics only, with supplements.

I had chemo for one year, my rheumy told me it didn't work. Then they put me on Cellcept and Enbrel with lots of Prednison on a daily basis. I look like a overgrown clown with a round face. :sick: :dude:

All that medication caused severe sinus infections and a fungus. Finally my new pulmonary doctor put me on Biaxin. I then started to check the internet about RA, DM interstitial pulmonary fibrosis and connective tissue problems and antibiotics. That's when I found the Road back Foundation. Found a doctor in Texas that does the antibiotic protocol and started back on taking charge of my health. Now when the doctor tells me I need to take  certain medication I check the pros and cons.

As I said after just one year on the antibiotics I am doing better, not yet where I want to be, but I was sick for almost three years.

Take care,

Eva

Eva Holloway

[Susan LymeRA]

My son-in-law knew someone who had RA which went to his lungs and he died.  So encouraging to hear.  Ha!

I have always suffered respiratory illnesses including annual bouts of strep as a child.  I have had a chronic cough for years but my lungs are clear.  Developing RA made me very nervous regarding my lungs.

Turns out I test highly positive for Mycoplasmas Pneumoniae, Chlamydia Pneumoniae and babesia.  The MP and CP are lung issues.  Babesia is a parasite in the red blood cells but it causes a cough.  So I have lots of reasons to worry about my lungs.

I inhale teatree oil steam whenever I get congested and it really helps.  I should do it nightly as it might help kill some of these microbes.

1 or 2 drops of teetree oil in a cup of steaming water.  Place a towel over my head and breathe.

Susan

[Eva Holloway]

Susan,

I have done well with my lungs since I started the antibiotic protocol. I have a pulmonary function test every three months and the last two show a lot of improvement.:D I also have a ct-scan every six months to keep track of the fibrosis in my lung. It has not become worse either. I am working out now a little at the time and find I am getting my strength back slowly.

I really feel sorry for people that get so sick with pulmonary fibrosis. Many have severe breathing problems. I do my breathing exercise twice a day and if I take a nap in the afternoon, then I do it three times. For me is the best time to do that when I lay flat.:D

I think I need to get myself tested for mycoplasma and all the other stuff.:( Just had bloodwork done so it may be a bit before I can get more done. Oh well.

Take care,

Eva

Eva Holloway

[Susan LymeRA]

Hi Eva,

So glad to hear you are improving.

I have been on the AP for 3 yrs.  Currently I am on Mepron for the babesia which meant I had to stop the doxycycline because they interfere with each other.

I have to say, I am feeling real changes in my body.  My joint pain is gone most of the time and only a mild ache when it shows up at all.  That is partly due to Enbrel which my doctor insisted upon.  You may have followed some of my threads on that.  I am on 1 shot weekly which is half the lowest dose. 

With the Mepron, I can feel things shifting in me.  My nose is chronically stopped up which is a symptom I lived with for many years of my life.  It had disappeared about 3 yrs prior to RA showing up and I am hoping that its reappearance along with the RA disappearance means we are turning back the clock on my illness. 

Holistic medicine believes as the body comes back into balance and begins to eliminate illness from your body, you will briefly experience all your past illnesses.  This is because the body is actually clearing the original infections.

My doctor is a rheumatologist who believes in infectious causes to RA as well as toxins from the bugs, drugs, metals, etc.  She practices both conventional and holistic medicine.

I will be glad when the stuffy nose is gone.  Such a clostrophobic feeling!

I am currently on a very low dose of Mepron but can feel so much improvement internally.  Dr said from the start that babesia was my main problem.  I sure hope we are successful in eliminating it.

The AP has been very effective at lowering the mycoplasma levels in my body.  Antibiotics have also eliminated H. Pylori.  I felt a big jump in improvement when the H.P. left.

I eat a very nutritious diet and supplement as my doctor dictates.  I truly believe our bodies do a large part of the fighting and if the body is not well nourished, it cannot do its part to heal.  In my case, a very worn out body is how the bugs took charge in the first place.  I was going way too hard and not eating properly.

It is an amazing thing how sick my body had become.

Susan

[linda]

The first time I tried AP, 3 yrs ago, I was only on it for 10 mths due to tummy trubbles, but in those 10 mths my respiratory symptoms completely disapppeared. I had severe childhood asthma, had pretty much “outgrown” it as an adult, but the symptoms began to recur about 6 yrs ago. I had pneumonia several times as a child (15 times beofre I was 18 y/o-I really shouldn't even be here). Anyway, I was on Mepron and zith in 2006 when the symptoms resolved, and it happened so gradually that I didn't even notice it for a few weeks. I have not had a return of symptoms since then, even tho I just started back on AP in Sept. 08.

I don't know how this relates to people who develop respiratory issues with their RA. I think Joe M has a daughter who had asthma and she was treated with abx, is now symptom free? My memory may be off here, I'm not sure. Joe? At any rate, I don't see how AP could hurt if someone developed lung problems, and my experience is that it helped a great deal. It would be interesting to know what percentage of people who had pneumonia or asthma as a child develop an AI disease as an adult. 

The wikipedia entry for c. pneumonia states that it is associated with other illnesses such as asthma and arthritis, and that the antibiotic used most often to treat it is zithromax, which is what I was taking when my symptoms resolved. Very interesting.

[Maz]

Linda and Eva, did you catch the Winter e-Bulletin?Thought you might be interested in this study which was included:

New Study Links Chlamydia Pneumoniae Infection with Autoimmunity

A new study conducted by researchers in Osaka, Japan, has uncovered strong evidence to support the infectious etiology of a number of autoimmune diseases including rheumatoid arthritis, systemic lupus erythematosus, dermatomyositis/polymyositis, myeloperoxidase-antineutrophil cytoplasmic autoantibody-associated vasculitis, adult onset of Still's disease and giant cell arteritis/Takayasu arteritis. Chlamydia pneumoniae has long been suspected as one such pathogenic cause in rheumatic diseases and this double-blind study provides further convincing evidence.

http://www.ncbi.nlm.nih.gov/pubmed/19151119?ordinalpos=1&itool=EntrezSystem2

Peace, Maz

[Parisa]

Thanks for the study Maz!  I wonder if the rheumies will stick to the party line that the c. pneumonia initiates the autoimmune response and will continue to ignore treating the cause?

[Maz]

[user=13]Parisa[/user] wrote:

I wonder if the rheumies will stick to the party line that the c. pneumonia initiates the autoimmune response and will continue to ignore treating the cause?

Very good question, Parisa, and one I'd like to know, too! 😉 This study is so hot off the press (Feb 2009) it's still sizzling. Chlamydia pneumoniae has been linked to so many AI and cardio-vascular diseases now (http://cpnhelp.org/  ) and incontrovertible evidence is mounting. One really has to wonder how much longer the conventional party line can hold out.

This, in combination with a recent article on bio-films, is really going a long way to put this whole jigsaw together. Maybe it's just a matter of how long it will take for the back of the donkey is talking to the head now?

http://www.washingtonpost.com/wp-dyn/content/article/2009/03/08/AR2009030801778.html

Peace, Maz

[Eva Holloway]

Maz,

now there is a thought. I had three real bad strep infections and  had since 1970 more sinus problems, bronchitis, ear infections and pneumonia than I can think off. Now wonder my poor immune system went down the drain. Maybe it really got badly confused and can't find it's way out.:roll-laugh:.

Anyway now that I am doing my antibiotic protocol I KNOW I WILL GET WELL:D.

Thanks Maz you always find new ways to learn more and give us links to do more research. You Volunteers need a medal, you are always there for us and guide us, it sure helps.

Thanks,

Eva

Eva Holloway

[Maz]

[user=236]Eva Holloway[/user] wrote:

now there is a thought. I had three real bad strep infections and  had since 1970 more sinus problems, bronchitis, ear infections and pneumonia than I can think off. Now wonder my poor immune system went down the drain. Maybe it really got badly confused and can't find it's way out.:roll-laugh:.

Anyway now that I am doing my antibiotic protocol I KNOW I WILL GET WELL:D.

Eva, I think you will, too!  😀  I read an article when poor ol' Bernie Mac died of his sarcoidosis this past year. His doctors said it was pneumonia and not related to his disease…honestly, it doesn't take a genius to connect the dots here. 😕

My brother has MS and he's told me 'on the quiet' that pneumonia tends to be the final curtain for many MSers. Vanderbilt has done studies on the connection of chlamydia pneumoniae to MS…now, why is that so hard for conventional medicine to see this and how can they possibly justify immune-suppression?

Of course, an about-turn on infectious causes would probably cause quite a stir (not to mention quite a few legal cases), so I guess we have to be patient and let the research speak for itself and quietly find its way into the medical texts. In the meantime, we have our “anecdotal” evidence and our friends here to keep us going and on track. 😉

Peace, Maz 

 

[Susan LymeRA]

[user=27]Maz[/user] wrote:

Of course, an about-turn on infectious causes would probably cause quite a stir (not to mention quite a few legal cases), so I guess we have to be patient and let the research speak for itself and quietly find its way into the medical texts. In the meantime, we have our “anecdotal” evidence and our friends here to keep us going and on track. 😉

That hits it right on the head.  Much the same reason the American Dental Association kept saying mercury amalgams were harmless.  The American Tobacco Companies denied cigarettes were harmful.  The government denied Agent Orange and Gulf War Syndrome.  etc, etc.

 

 

 

[linda]

The medical community has been treating AI diseases with immunosuppression for so long that I think there would be quite an uproar from patients everywhere if they were to come out and say that they now think it worsens the diseases over the long run. It would be akin to saying that insulin makes diabetes worse, can you imagine the response to something like that? But isn't his how we treat most medical problems? If we get a cold, we treat the fever, which is one of our body's responses to the infection to try and kill the bugs. Granted, too high a fever can kill you, and needs to be treated for sure. And too much inflammation can cause joint and organ damage, so it needs to be treated as well. I don't think antiinflammatories are the wrong way to go, I think they should be used  as Dr. Brown suggested, to help the abx get to the infection.

The problem is that medical science stopped too soon. Prednisone worked so well that everyone thought the problem had to be autoimmune, but it's only one piece of the puzzle. If the infectious theory is going to be accepted and the information given to the public, I think they're going to have to make some kind of explanation about why immunosuppressants were used for so long without serious research into other possible causes. They'll have to figure out some way to let the public know without everyone rushing to their lawyers to sue. As long as that remains a threat, the medical community is going to be less than forthcoming about this information.

This isn't like one of those new drugs that a small section of our society took only to find out that it was dangerous; we see commercials for lawyers who will sue drug companies for you if you have taken this or that medication. A huge portion of society has taken anti-inflammatories for a long time – there wouldn't be enough lawyers to handle the number of people lining up to sue. And the problem is that many will still need those drugs, at least initially in their therapy, so we can't risk having them taken off the market altogether. How do we handle this? It sounds like the information is getting closer and closer to being given to the general public.

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