Now both were said to be negative by Igenex but her doctor said if she is having symptoms she should be treated. She is only 2 and I don't see any noticable symptoms. It is hard to tell she throws tantrums and has some night terrors but also normal for a crazy 2 year old.
Does anyone know if the bands that were found are very signifigant or could they also be found on an uninfected person. I can't talk to the doctors offic until Monday and I am confused.
She also had testing done from MDL Urine negative Lyme PCR negative All coifections were also negative.
I just want to feel like I can stop worrying all the time everytime she has the sniffles or screams about something I think it is Lyme related. I was happy to see her tests come back not looking like mine...UGGGG but do the bands picked up in the western blot mean anything.?? This is what my tests came back with..
I have been very very sick and not improving much. I would never want to see my child go through this....... I couldn't believe my test results as I was just possibly being diagnosed with MS. HOLY LYME!!!!! I guess there is no denying I have it. Sorry for this being so long.
I guess I would like to know if this was your childs results would you put your mind to rest and consider them negative?? Or would you get them put on antibiotics. Thank you for any opinions and My little Madison thanks you too....LOL [IMG][/IMG]
Posted by breathwork (Member # 567) on :
If my doctor thought it was OK, I would give her antibiotics for ten to fourteen days, then test again.
The antibiotics should encourage antigen shedding should she be harboring the bugs, then the blood work might paint a more accurate picture of her situation.
Just my two cents worth.
Posted by breathwork (Member # 567) on :
From one red head to another, that's one good looking little lady you have there! Beautiful smile!
Posted by Lymetoo (Member # 743) on :
Cute, cute, cute!
Well, I think breathwork had a goood idea, but you need to have her OFF abx after the 2-3 wks ON before testing again.
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands."
Based on that, I'd be worried. You may want to read all the information in the link so you understand that in his opinion, the IND [equivocal] is a weak positive.
Sorry to give you bad news, but certainly, keep a watchful eye on her!
PS... Band 66 is also a common borreliosis band.
Posted by trails (Member # 1620) on :
I am not usually one to say wait it out, but the test results to me don't look that indicative.
The only ++ is 41 which is NOT specific for Bb (lyme) and most people test positive for this as we all have spirochetes in our mouths.
hmmmm....the other bands dont look that indicative either. I mean, she doesnt seem to have + of the ones that are specific to Bb. I wonder why Dr. C says what he says about those bands?
Have you had her tested for coinfections too? That would be a second safety net....I mean, if she were to test positive for ANY of them, then I would treat the coinfection AND for lyme. If not, then maybe she doesnt have it?
The terrible twos can be reallllly hard to read for parents and anyone working with children that age. They can really change from minute to minute and tantrums are not a sign of much except being two.
Are you friends with a WIDE variety of people with like aged kids? Coz having a friend or two will sometimes isolate you further...children at toddler ages differ so greatly and the pressure on their parents to make them be great little people is more than most will admit!
ANYHOW---I would think the next step is testing for coinfections.
I am NOT a doctor. Just giving MY opinion, hope it helps, What a cutie! Trails
Posted by char (Member # 8315) on :
I have 12yr old and 14yr being treated after being undiagnosed for 4 yrs.
It is disturbing to subject a child to high dose long term abx therapy. However, in my opinion it must be done.
There is evidence that the risks of undertreatment of chronic lyme far outweigh the risks posed by long term abx use.
There are folks who have been on abx for acne and other problems for many yrs and they are fine.
I put off getting my son tested and treated for a few months because I was so overwhelmed with grief to think he was possibly so sick, even though I knew in my mother's heart that he needed it.
You have an opportunity to address this early. I hope you will consider it. Especially since you are so sick.
I hope I have not said to much. I get riled up when I hear of these little ones suffering.
Best Wishes,
Char
Posted by Mishelly00 (Member # 5897) on :
trails,she was tested for all the coinfections and they were all negative. She also had her urine tested for Lyme and a PCR testing they were also negative. Thanks so much for all your opinions...I am just confused.
Of course I get confused easy!!! I guess I will have to wait for the follow up appt. at Dr. Jones. One of the people called from his office and left a message on the answering machine. My machine is so screwed up it was hard to hear. But I did hear her say that she is not showing any antibodies of a active infection but because she is showing something but not much on her IgG test we could treat her if she is having symptoms.
I just don't want to treat her if it is not needed. She has been a very healthy little girl and has only been on antibiotics one time since she was born. That is less than any 2 year old I know. (Knock On Wood) I will go to the follow up and talk to Dr. Jones myself and decide I then I guess. It's so hard to know what to do.
Of course her dad thinks I am nutts for even thinking about it. Oh well he doesn't walk around in my shoes all day so he doesn't know how it feels being this sick everyday. Thanks again, Michelle
Posted by trails (Member # 1620) on :
woops, sorry, went back and reread that part--yeah, no coinfections either huh?
I would trust Dr. J.
It does look like she isnt dealing with lyme right now---Since she doent have any specific symptoms or any lyme specific positive bands, AND no coinfection positives.
I can understand you worry and know that it is very real even if she remains as healthy as she has been! You have good docs, she has a great and knowledgable mom, I think everyone is gonna do just fine!
Trails
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by trails: I would trust Dr. J.
Me too!!
Posted by HEATHERKISS (Member # 6789) on :
![[Smile]](smile.gif)