mycoplasma

[Lisabuf]

Lilly,
I haven’t been aware of my disease (RA) for very long and am not nearly as well-versed on the treatments and supplements as many others on this site, but I just wanted to send a word of encouragement. The first thing I thought when reading your post was “scleroderma” and I know how frustrated you feel with medical professionals who don’t have a handle on the obvious. I was told my crooked index finger (that is growing more deformed with time) was from an injury…that I must have ‘jammed’ it. I said “Gee, I think I’d remember something like that.” Turns out it was an obvious early symptom of RA–well, obvious to a doc who knows what to look for! Had I known then that it was RA I might have started antibiotic treatment 2 or 3 years ago. So we definitely have to be proactive in our medical care, and if something seems wrong, we have to search until we find an answer. It’s good your husband has an advocate in you, because the sad thing about chronic illness is that you are often too tired to fight…so thank goodness he has you to help in the fight. BTW – almost everyone with an autoimmune disease can trace the early signs of it to a trauma or stress. For some it can be an unusually stressful time in life (me)and for others if can be physical trauma like a car accident or surgery. I have a friend whose Psoriatic arthritis showed itself a few weeks after foot surgery. The trauma or stress and resulting weakened immune system seems to allow the disease to take hold. I wish you and your hubby well.

[lilly]

Thank you so very much for the kind words. I won’t let this disease take my sole-mate. We have been through so much together and always !together, we face things!

I was getting so depressed with all the information shoved at me from so many doctors and yet they all are experts?

Last night again, we had another crisis with my husband. He hasn’t been breathing well for the last 2 days and there was some sponginess, weird feeling near his rib cage and chest wall His prior lung biopsy wasn’t healing the way it should, even though the “Professional Thoracic surgeon” telling us it was quite common to have masses of fluid spurting out your incisions for about 2 weeks???

This was the smartest move I did getting him to the hospital because “THE DOCTOR” after the hospital called her for instructions and view the x-ray, ordered him to have another chest tube put in because there was air pressure caught between his lungs and chest wall???

He was lucky because it was done immediately and was sent home with it in him bandaged up and is getting it out Tomorrow!!!

I couldn’t believe what happened? After talking to the thoracic surgeon on the phone she called it a wee complication!!!! no it was a sloppy job in the first place and I became very cross with her putting him through this again.

He slept the night with a bit of discomfort from the 12″ of hose in his body but the breathing improved so much.

He is scheduled to see A specialist at St Paul’s Hospital here in Vancouver that specializes in scleroderma, all variety’s.

His hand tightening has improved overnight and I fully believe its the mynocyclin working again.

I will, however try to see if his doctor will test him for Lyme disease!!! I have no idea if that could be possible here, but we did camp and go fishing many times but I don’t recall a bite on him? I am leaving no stone un-turned so will reasearch this too.

lilly

[lilly]

UPDATE:

Still complications with my hubby’s chest tube they put in a month ago because the thoracic surgeon messed with his lungs internally and caused a pneumothorax. I am so mad at the amateurs that call themselves doctors!!! I understand were all human and make mistakes but when the whole procedure wasn’t even needed?…. My poor hubby has been put through the mill.

I am not sure what’s next, since no luck with testing him for lyme disease yet… he is on minocycline that our family doctor allowed him to try and has had wonderful results. His calcium deposits under his skin of his left hand has reduced and the skin is less tight.as well as the reflux is less. When I went to the doctor last week to explain all of this, he was interested in the AP therapy but told me that having scleroderma systemic with the lungs being involved couldn’t be lyme disease?

We are going to see another specialist at the scleroderma clinic at St Paul’s Hospital and having talked to a gentleman that had been treated by this doctor is now year 13, without problems. He is what they refer to as in “remission.”

We are in month 9 with some startling news that his test results for his CT scan back in March 2011, definatley was pointing to Scleroderma diffuse?

I was shocked that all the medical professionals that saw my husband at that time and now 9 months later had this information right in front of their nose. I requested three times for these tests and now that I see them with my own eyes…. Why was this very significant one given to me? I phoned a few of my husbands specialists, only talking with two of them and the excuses I heard would madden you!!!

So this battle of the doctors goes forward….. Could I please ask, besides minocyclin which he takes 100 mgs two times a day, what other antibiotics he should be taking as well as supplements?

I have him also on 500 mgs of NAC daily. Fresh ginger in his water and a healthy diet. Any suggestions would be greatly appreciated…..

Its amazing how just 1 day ago on the local news that a few researchers from the Toronto area are looking into the fact that Colon cancer is caused from a bacteria???? Why is this coming to press now, at this time?

Everything I have read recently is basing serious illnesses on bactera!!! Why then, are doctors not pushing Antibiotic therapies that will save millions of lives? That is criminal! to not allow people to make choices like these that can literally be saving their lives?.

So please do let me know what would be another antibiotic that my sweet husband can take along with minocycline to bring him on the road back to recovery?

I look forward to your replies,

Thanks so much

Lilly

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