Cyber-bullying and my daughter

[faerywings]

Oh and one more thing-- if she gets any sort of weird rash-- doesn't have to be a "bulls-eye" but even streaks of red dots, take a picture of them next to something for size reference like a coin. Lyme and bart have strange rashes that come and go. I can't tell you how many times I have seen or heard of a rash showing up one day and gone the next. But a picture helps a dr see the type and size of the rash and that will help with a diagnosis.

 

[clarabear]

On top of all the Lyme stuff...when getting tested have them check for Epstein Barr Virus too...I believe Chris and I have talked that a lot of people can get EBV along with their Lyme. I had it in high school and it's pretty rough. Not a whole lot to do about it but knowing helps.

 

[faerywings]

Yes, Clara made an excellent point. Lyme reactivated my mono. Scott, and now Cait, have elevated HHV6 titers. Any virus that stays in the body can replicate due to immune system deficiencies.

 

[4PeasInMyPod]

Clara and Chris, Epstein Barr Virus was one of the first things Cheyenne was diagnosed with, but later testing ruled it out. We did go for about a month though, just waiting for it to run its course...expecting her to get back to normal soon. I had it as a teen and it put me down for about 6 weeks. I would give anything to have her well again. We got a tip from a recovery room nurse who took care of Cheyenne after a recent procedure. She told us she developed CFS after what she thought to be a common virus, and basically getting off the couch to walk into the next room was all she could manage for 2 years - she now takes Adderall twice a day and is able to work again, as long as she doesn't miss a dose. Of course, that won't do anything for the pain of fibro, but the fatigue itself is a big problem. With all the drugs they have experimented with, I didn't expect getting a trial of this one would be so difficult. Her doctor wants to do full ADD testing first, even though we want her to try it off-label anyway. I was told by her therapist that we just happen to have the most holistic doctor in the area, and may have to switch to someone more open about prescribing something like this off-label. Anyway, the nurse originally was already assigned to another patient, but said she felt drawn inexplicably to the teenage girl, and switched with another nurse. She said as soon as she read our daughter's chart, she knew why. Her story spookily followed the same parallels as my daughter's, except for the pain. She even gave me her contact info in case we have any more questions about the protocol. Keeping my fingers crossed that this helps.....

 

[4PeasInMyPod]

Thanks for the great info. You are VERY informed! Do you know if there is a listing of Lyme-literate doctors online somewhere, so I can find one near us?

Yeah, 2 weeks of doxy is just not enough
4 weeks is ok if it is right after the bite. 6 weeks is better. But if it has been a longer time since the bite, like your DD, different combinations of abx are typically needed.
There are three forms that the bacteria takes on, spirochetal, cell-wall deficient, and cyst. Different abx are needed to treat the different forms.
To add into the treatment difficulties, each person reacts differently to the abx, so one cocktail might work for one person but not the other. Believe me, in my little family of four, we all have been on different protocols (and this being with only two doctors and my LLMD has treated the kids' LLMD!!) to varying degrees of success. It took my LLMD since 2008 to get me on one that is working. Name an abx and I will guarantee one of us has tried it. ound:

I wish I could help more, except to rec. getting an Igenix test done for Lyme, Bartonella, and Babesia. If she tests positive on any of them, the next step would be to find a Lyme literate dr for treatment.

Again, I apologize for making this sound so gloom and doom. But the upside is that the less time that a person is infected *greatly* improves chances of successful treatment. My fam is a "worst case scenario" in that my DH has mostly likely had this since the 70's, and I have had it for 20 years and my kids were born with it. That is along time for the damage to be done. But in "Lyme Years" your DD has amazing chances of beating this, if she does in fact have Lyme.

 

[faerywings]

It is very hard to find LLMDs becasue of the IDSA going after their licenses. No one uses last names at all when talking about them online.
Best bet is if you are on Facebook, see if there is a local Lyme group. Then you can ask for recommendations there. There is also a website where you can look too, but I can't rememebr which one that was. Check out ILADS.org -- they should have info there.

Be warned- most LLMDs do not take insurance b/c of the politics and BS of the IDSA. Toooo crazy to do the whole run down here, but if you have time, watch "Under our Skin" to get the whole background on this.