Severe Bone,Rib&leg Pain/severe Fatigue

[suziequz70]

Hi,all this started 7 years ago.Severe Burning Bone Pain&fatigue-all MRIs,CTs,etc. say  "Moltted Apperarence" &or "Abnormal Diffuse Hetergenous Signal in full Osseos Sketetan,Lung CT #1-groudglass appearence in upper C. Lobe.#2 6inch adhesion connecting Rib to lung,Severe Rgt Rib Pain&organ  under rib sweels,, I have Mast Cells Disease 40(0-5),Ebstein Barr 3.69(.90 detected),low IGGs ,Hi IGG Serums,I have flares that Im way worse&my Gums swell/loose/&lose teeth/jaw pain/chest pain,rash/bumps on face&inside mouth.can go on&on. I lost my Dr 2 years ago,right before Histo Dx&I cant get a Dr in Ohio to help Me.any ideas?

[railroaded]

They thought my son had Ebstein-Barr before he was finally diagnosed with Acute Lymphoblastic Leukemia.  The only thing I was going to mention was about maybe when choosing a hospital, thinking about choosing a TEACHING Hospital. He went to UCSF, (I know you are in another state), but what i found was that the other hospitals didn't seem to include the PATIENT in the discussions, and their input was minor. In the teaching hospitals, you will be told the terrible truth for sure(I am speaking about MY experience, not suggesting you have something horrible to be told!), but I found it much easier to deal with, over the years of treatment, to not only be notified, but I was able, and HE was able, and he was UNDER 10 YEARS, to tell the nurses and doctors what they could and could not do. Also, I had the passcode to the physicians library, so I was able to access the very same material they were looking up, at the same time. (I think some of the residents THOUGHT I was a staff member, but they gave me the secret combination, I didn't care. It was SO different when he was rushed to other hospitals, and they tried, and I tried to never let it happen.  (They almost killed him when his Broviac pulled out and a doctor had to read instructions along with me at an emergency room, and I KNEW it would happen, he was admitted to UCSF within 2 days with sepsis). They really may seem tactless sometimes, but they do ask your opinion. Just a suggestion. I wish the best for you wherever you go, and I sincerely mean it. My sister lives on the border of Kentucky and Ohio, and the one vacation we took, before he died, they had set me up with instructions and directions for all the nearest teaching hospitals, in case he spiked a fever, (of over 99!) Luckily, he didn't, but died a few weeks later, and that is WHY they let us go anyway.(I mean, he (my son) and I were told he had under 6 weeks to live).

[jodiemae]

I am looking for a doctor for my son who has severe pain in his jaw.

[omhome]

i know how this sounds to everyone because those of us who have gone thru it (still going thru) are used to being ignored--not believed---ridiculed--etc. just because the docs were ignorant of or don't belierve that LYME disease does these things and more. Please check it out because if it is so you need anti-biotic treatment right NOW. More permanent damage if that is what you have and delay treatment.  I hope it is not and you find out---keep looking for the answer.   Om   yogadon

[321cateze]

Contact the largest hospitals up in the East, the best physcians in the country.  Tell them the same info and find out who is in your area for treatment.  Hopefully you have all you medical records and  try writing Dr. Oz, or the show "THe Doctors" and see if they can direct you to someone.  There has to be someone or several willing to help you.  Good Luck and God Bless.