I would like to know if there is any info on a high tumor necrosis factor reading and how it relates to babesia. My daughter, who has been through the "lyme-labyrinth" has had erlichia(now gone), and now babesia, as well as the CLD, as well as CFIDS. She has frequent heart palpitations, dizziness, nausea, sweats, etc. These are all symptoms of babesia, but recently she is having pains in her hands making it difficult to grasp on to objects. She was on doxy for awhile, then monocycline which cause extreme dizziness so she was taken off that. She is now on a combo of Mepron and azithromycine but we may be looking at Rocephin IV therapy, and I have questions about that, as well. Feedback seems to be mixed-some say it has worked great and others claim the symptoms return after going off of it. Arrrgghhhhh!!! So many questions and gray areas- it drives sane people crazy! Any help or suggestions would be appreciated. We have been battling this for 3 years now. Posted by julier (Member # 9527) on :
Wow - this is interesting. My daughter (13) was diagnosed with RMSF in March. She was unable to walk, had dizziness, nausea, intractable headaches and pain in her knees, ankles and ribcage.
They did every test imaginable and other than testing highly positive for the RMSF, she tested consistently high on the TNF! Every other test was normal.
The doctor (neurologist) claimed that it meant that there was some sort of inflammation in the body, but he could not explain why.
I am curious as to what explanation was given for your daughter's high TNF. My daughter was also given Doxy, but only for ten days.
We are battling right now with the doctor to give her more abx because she is still ill every single day.
I have tried to get more info on the TNF and cannot find anything relevant.
Julie
[ 07. July 2006, 12:43 PM: Message edited by: julier ]
Posted by lymemom53 (Member # 9543) on :
Thank you, Julie, for responding! Just curious, what is RMSF and abx? I am a newbie at this so still learning the lingo! As for the TNF, I know what you mean as to the lack of info. The only feedback we received on it was that the lyme/babesia was causing this high factor. I am still trying to find something that will lower the levels in her body. In this next month, she will be starting IV therapy of azithromycin. Her sensitivity to drugs had the dr decide not to use Rocephin at present-just hope the azith will help. Keep me posted as well as to your daughter's progress.
Posted by julier (Member # 9527) on :
Abx = antibiotics RMSF - Rocky Mountain Spotted Fever - basically another form of tick disease.
I am a newbie too, but I'm getting a quick education here. How old is your daughter? I feel lucky that my daughter was diagnosed relatively early considering your 3 year struggle. Can you elaborate further on how she was diagnosed etc?
Julie
Posted by char (Member # 8315) on :
Dear moms,
So sorry to hear your girls are sick.
My 15yr old daughter is recovering from lyme and co. and it has been a big challenge.
I am not able to answer to your specific question...
My son had striking muscle pains. Not in his hands, although his hands hurt and he could not really write. But he would get an all of a sudden pain in his arm or leg. I don't know if that is similar to what your daughter is going through.
He no longer has those sort of pains, they diminished after an 11wk course of Rocephin. Their symptoms continue to sort of shed away.
The kiddos do get better on the antibiotics.
Best Wishes, Char
Posted by Lymejul25 (Member # 9564) on :
Hi, my mom is Lymemom53..hehe..I am Julie. :-) I was diagnosed with ehrlichiosis when I was 23..and was in intensive care for two nights, and my blood pressure dropped all the way to 50! I was treated with 2 months of doxycycline, which I thought was adequate..only to have Lyme Disease come back again when I was 24 (I am now 25), and found out I also have babesia..which was diagnosed by the IgeneX laboratory..I highly suggest this..as it is extremely sensitive in its accuracy. So now..I have chronic lyme, babesia and chronic fatigue syndrome. It's not a picnic, but I am trying to be strong each day..wish you all luck with that too..I know it's difficult, believe me.
Posted by bettyg (Member # 6147) on :
Welcome ALL you newbies! If I missed sending any of you a PM, private message, with my list of newbie links to visit including TREEPATROL'S NEWBIE LINKS; please PM me...2 people standing together, and ask me to send me my newbie links including long list of symptoms, etc.
Also, ladies, many of us like me can NOT read long, continuous posts. So please break up your posts into shorter sentences and double spacing between EACH ONE for us neuro lymies to be able to read/comprehend.
So may I ask each of you to edit/PENCIL icon your above posts? Normally in the past, I would use the "" quote to do this, but my LLMD told me Monday to limit my total PC INTERNET EMAIL/LYMENT USAGE TO 2 HOURS PER DAY!
Also, when you use " ", please delete the first 5 characters of 2ND LINE: [/QB] that will delete the awful BOLD for people like me with super sensitive eyesight to this. It causes me headaches/migraines. Most of the time the " " is not needed. As a newbie, I too could NOT find at the top & bottom....POST REPLY OR POST NEW POST in black & white. It was invisible to me.
Thank you all so much. I'll come back & read after you have each edited your posts for this neuro lymie. GLAD you have joined us here; you will learn alot by reading, reading, reading, and using the SEARCH feature at the top of the page.
Also, read FAQ, frequently asked questions; it gives you tips timesaving! Thanks again. Posted by Michelle M (Member # 7200) on :
Hello, Lyme Moms all!
I am pretty clueless about tumor necrosis factor.
I wanted to suggest putting your post on the "Medical" section of the forum, where a WHOLE lot more people will see it who are apt to be much more familiar with it.
I have a 14 year old with Lyme; waiting on babesia results right now (with fingers crossed). I sure feel for you, dealing with it three years! (Mine has only had it for one year.)
Sometimes we're guilty of not checking the General Support page often, so try the Medical, which is usually hoppin!
Wishing you the best,
Michelle
Posted by julier (Member # 9527) on :
Hi Julie - I'm so glad you are getting better! It sounds like you are on the right track. I'm still battling with the doctor about getting my daughter more abx. It sounds like you are going to make it!
Thanks Char - I'm sure there is hope. I would just like things to move faster. Reading everyone's stories is so sad.
Michelle - great idea - I just went over to do that.
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