concerned for my daughter - advice please

As far as I know, the western blot does not change when you're done with treatment. It's interesting that yours did but that is not usually the case. It was my understanding that there's no way to tell Lyme is gone via a test.

If you think her symptoms indicate she is still infected by Lyme, I would put her back into treatment. The only way you know that you are healed is via symptoms, and you're supposed to treat until symptoms are gone. I'm sure that's not the definitive answer that you're looking for, but as you know there's no definitive testing with Lyme.

thanks. girlie that is exactly right, i dont want it to go untreated for years. I am thinking that the symptoms she has are related to the food sensitivities. when she was initially sick with lyme she had throat pain daily, bladder issues and numbness in her fingers. all of that is gone, so to me she is symptom free. if i try treating her, she really never clearly herxed when she was first sick, so it will be hard to tell! my youngest was the only one who had a clear herx reaction. its different with kids. thanks for the ideas! yes, i trust the pediatric Dr but he is quicker to treat than my own LLMD, which is good in some ways but bad in others.

I'm sorry you are dealing with this.

I've always been of the mind set that mom knows best. You know when your child is not herself.

The only thing I want to mention is-
By age can you rule out hormones? I know that starting at about 10 girls brains change. They go through a period (no pun intended) where they forget things, have senior moments, don't turn in homework when it's in their backpacks when they've never forgotten before. Then the eye rolling starts and doesn't stop for about 12 years. I'm sure you have considered this...yet optimism for you and your daughter made me post this.

J - yes, for sure, that is something else I forgot to mention. she is 12 and just hit puberty. its a tough time in her life - and i guess i may be more worried than usual because i have read that the worst time for lyme to be "active" is during puberty. sigh!

i am worried yes, but I am not totally convinced she is still "infected" - its tough.

sarah - so the WB elisa never changes either? Of course it isnt the same for everyone, but my oldest daughter is the only one who was almost positive with the elisa. the rest of us were negative and just showed bands.

i will be speaking to her Dr tmrw. Who is excellent, so I will need to just follow his suggestions. I will let you all know what we will plan to do! thanks for the concern in the meantime!

Call Igenex. It's my understanding their very helpful.

Hey Chapelle, I just did a little more research and found this quote on Dr. C's site.

"The tests can be problematic. The ELISA and Western blot can only

detect whether a person has been exposed to Bb. The tests cannot determine if there is an active infection which could be causing the persisting symptoms, since antibodies can be produced for months or years after an infection has cleared. "

http://danielcameronmd.com/lyme-diagnosis-tests/

 

Chapelle—

I'm so sorry you're burdened with this heavy situation. It's very complicated and I'm not a parent or a pediatrician LLMD but will throw a few more ideas out there with the other good posts here…

Regarding the puberty… hormones get imbalanced when the body starts puberty, and hormone production, neurotransmitters, digestion… are all interrelated. What goes on in the gut affects the brain. So your daughter is being hit from both sides:

- hormonal changes, which the body takes time to adjust to

- and GI issues that are affecting her digestion, her brain function (there were recent confirmations through a study that PROVED what NDs and nutritionists have known for decades that there are blood vessels IN THE GUT that actually run all the way up into the brain, forever linking gut function to brain function).

Regarding the food sensitivities—this could have been the result of early abx use when she was younger—it could have thrown her gut flora off so much that she's now struggling w/ gut damage and leaky gut, which is often the cause of food sensitivities. And without resolving it successfully, she could continue to have problems absorbing food AND medications/ supplements—or any form of treatment.

And gut problems cause mood imbalances and sleep disturbances, which are also usually neurotransmitter imbalances. It's all linked.

She may also still have some lyme infection that is either mostly dormant or maybe flares every now and then. But from what you describe in your posts, and from the knowledge I've developed on the adult side of lyme, it's critical that you solve gut issues first and foremost.

The other thing I wanted to suggest was that I've read in multiple sources and my own LLMD assured me that the IgG vs IgM in the current IGeneX testing or any other lyme testing, for that matter, is not informative… and that it doesn't indicate old vs new infection and is not a good indicator of lingering infection load. My IGeneX test indicated only band 41++ for an "old" infection and I was "CDC positive" for a new infection, even though I'm pretty sure I've had lyme for over 17 yrs.

I think others mentioned here, which I agree with, that presence/absence of symptoms trump any of the IgG/IgM levels in tests as an indicator of relapse. And in your case, it might be most beneficial if you address the gut issues to a) solve them and to help her overall immune system functions and b) by process of elimination you will be able to identify lyme sx more accurately.

Hope this helps…


-p

Post Edited (Pirouette) : 9/4/2015 6:05:48 PM (GMT-6)

Pirouette - wow, thank you so much. I will take your advice and start with the diet this weekend, it is overwhelming, but I have no choice at this point. i don't believe her gut issues are linked to antibiotics. she was barely sick as a child, didnt take her first ear infection dose of amoxil until she was 2. Maybe she was on antibiotics a total of 6 times since birth (not including lyme treatment). So i really wonder where this stomach and food sensitivity issue came from....wondering if lyme initiated it? In the sense that because of lyme, her body gets inflamed from the foods that she needs to avoid because of lyme - grapefruit, sugarcane, dairy, gluten?

My daughter's lyme dr is away for the weekend, but he told the secretary that he is ready and willing to treat.
number one - if i do treat, it will be herbs only
number two - i am not treating yet until i get the diet going and see how she does. i will be sure to give you guys an update in a few weeks!

happyjo - thank you so much for your kind words and jrpsrf made me lol too!