Update

Thank you Babs & Lynn,
for keeping us updated on Barbs condition. I'm really concerned about them letting her go home once again with out checking her out better.Barb my dear friend please know that you and your family are always in my thoughts and prayers.

Just talked to Barb,

    They said she has a heart murmur(sp) causing the abnormal EKG. They only listened to her heart and didn't do an Echo to verify this. She will be going home today but see's the plumonary doc at 1:00 and will show her the ekg results to get her opinion.

    Barb said the pain and pressure is a little better but still there. She is just extremely frustrated and tired of all this.

    Barb my friend, I hope the plum doc will look into this further. You are always in my thoughts and prayers.   Love you, Babs

Hi Barb,

I'm sorry you are going through so much pain and frustration. I can't believe they are sending you home again without further investigation re your heart and lungs. You know you are always in my thoughts and prayers, but I will say an extra prayer for you today my friend. I hope you get some answers from the pulm specialist today at 1:00.

Love Julia

(((((Barb))))) I hope that you are more comfortable at home than you were in the hospital. I'm really sorry they couldn't do more for you and I'm glad you talked about your frustration with your rheumy. I'm glad your doc is going to follow up about your heart. I'm glad you are safe at home and in bed. Thanks for taking the time to update us. love, hippi

Hi Barb. It's great that your rheumy supports you and I hope he keeps you on your meds. I go for months at a time with normal lab results and my civilian rheumy keeps me on my meds regardless of the neg labs. Neurontin is my drug of choice when the celebrex and arthritis tylenol aren't enough. I'm so glad you were able to shower. It's a great feeling when you go for days without one. Stay snuggled in your PJs. I'm sending prayers and lots of positive energy. Love, Butterflake

(((((Barb)))))
I'm so sorry this has happened to you but I"m glad you got a chance to scope out where the doc is at. Fibro? Give me a break. I like how because they miss it, the patient is, well, has fibro. Have they checked you for all the infections that can cause lots of grief long term--Epstein Barr, Lyme, TB and the rest? I'm siding with the folks now that are looking at antibiotic resistant infection as a source for autoimmunity. Also, there is the environmental factor too. If you get a chance, you might check out the Road Back and the Marshall Protocol sites. They've actually found certain types of bacteria at the center of sarcoid lesions, and had some success with specialized antibiotic therapy. At the Marshall Protocol site, you can log in and speak with a researcher, who might be able to help. At the Road Back, you can get a list of docs, and I think theres some in your area. http://roadback.org/

Viagara? That reminds me of when they put me on prostate medicine for my urinary tract pain. It was not only not approved by the FDB for women, I got sick from it and it didn't work. If you can stand a consult with one more doctor, you might try a consult with a doctor using antibiotic therapies. While they may not be for you, the doc may be more open to testing and seeking an underlyinmg cause for your autoimmunity since you don't have the antibodies but clearly have autoimmunity. Even my regular old rheumie considers that infections may be an underlying cause in some cases, esp. where the regular old lupus ds-dna is too low to be positive or is negative. This research is like twenty years old and doctors now are just beginning to admit there may be something to this. My ex mother-in-law was a microbiologist and I had to do some writing stuff for her and from what I get from the articles, the science seems pretty sound.

I feel alot better better on isoniazid for TB and feel pretty sure that it has caused a lot of my problems. My basal temperature has risen from 95 up to 98 degrees. I'm in much less pain. I don't know how to explain it. My brain is much clearer and I have alot more energy.

I know you have probably been on enough antibiotics to kill an elephant twenty times over, but the way they do things is different than an episodic treatment.

I really hope they figure out what the heck is going on. Do you have pigment problems like me? Vitiligo and hyperpigment? Just wondering. If worse comes to worse, you can show the docs that and say, "fibro does't cause this, does it?"

Be careful on the neurontin and make sure your liver is okay. I will pray for you.