Now I'm curious as to whether anyone else here has been told they had a high TNF level.
My daughter had a spinal tap and that was the only abnormality - a high TNF (tumor necrosis factor).
The doctor claimed it meant there was some sort of inflammation in the body, but he didn't know why.
So what did he do? Prescribed steroids. Thankfully it was a dose pack, not too long. Of course, it did nothing for her.
So now I'm wondering if others have had a similar finding.
Julie
Posted by lou (Member # 81) on :
Did you try googling TNF? Here is one description, which as you can see applies to multiple diseases, not just lyme. In other words, it can be a marker for infection, but which one is not indicated by the test your daughter had.
The thing is that cytokines like TNF can be a good thing in fighting infection, but they might also go on to be too much of a good thing. It is apparently a complex situation that they are still researching.
Posted by julier (Member # 9527) on :
Lou - thank you so much for that - that is exactly the type of thing I was looking for. Something that could actually relate to what is really going on with my 13 year old.
I forgot to mention that after the dose pack, another doctor (for some reason we keep getting referred rheumatologists) decided that we should lower the TNF level or block it with Humira. He only gave her one shot with the hope that she would stop having symptoms. That did not work either.
My daughter was diagnosed with Rocky Mountain Spotted Fever after being severely ill for two and a half months. She was then given Doxy for only ten days.
It is now four months later and she still feels sick every single day. At least she can walk now. She was in a wheelchair and felt like passing out for four months.
We are pleading with the ID to give her more Doxy, but he says that he gave her the recommended protocal for RMSF. He thinks that because she can walk now, it is only a matter of time with the rest.
I am going to go to him with the article to tie in a possible Lyme connection - especially in light of the reference to the elevated TNF level in this article. So far, I had nothing to show.
Again, thanks so much. This is truly helpful.
Julie
BTW - she was tested through yet another doctor (how many do we all go through?) through Igenex. I still have not spoken to the doctor about his interpretation of the results.
Igenex called it a negative, but there were some positive bands that an LLMD may consider significant.