What to do while WAITING for first appointments

Hello,

I've read lots of the postings (and the new members page) and don't think I've found this topic. I'm the mom of the 29 year old (in eastern Canada), who has been sick for 10+ years, and as a result of bloodwork sent to Igenix it seems he has lyme.

Thanks to the guidance of local lyme representatives and folks on this forum (Traveler!!) we have an appointment for my son with a lyme literate practitioner in the Northern US - but not til mid September.

For years he's been on various supplements, eating well, gluten free since last December, etc. One thing I've learned about on this site is detox baths, which would have been helpful in the past but he certainly will be using going forward. Thanks!

My question is, what would you suggest we be doing before an appointment? I don't want to introduce another non-lyme literate practitioner's protocol into the mix...I'm figuring just continue to work on repairing the likely leaky gut. But, anything very basic we could / should cover?

Thanks

LymeMother

Girlie had good suggestions for your son. I had another though that isn't really what you were asking about but might be useful—

It would also be very beneficial if you documented a few things before the appointment. Many LLMDs require patients to fill out in-depth surveys of symptoms and other health histories to help the diagnostic process. One way you can help this process is to catalogued your son's prior health issues and his symptoms.

If you email me, I'll forward you a checklist that my LLMD had me fill out—very thorough and helpful in breaking down symptoms amongst the common coinfections as well.

-p

Yes, excellent, Pirouette...I'll work on finding a way to summarize his records; I'll get your spreadsheet.

I had done an excel spreadsheet (prior to knowing it was lyme) with my own terminology for the symptoms. I could update to use standardized terminology. And I think I've seen references to duration / frequency / intensity. I guess the trick is simplicity and being able to identify key factors / issues / progress quickly. Good plan!

Hi Girlie,
The very sad thing is that from at least from 2007, he has not had the self-perception and / or ability to figure out what is going on; so, if I hadn't been doing this he would be in a very different place - and I believe this would never have been figured out. And in a largely "transaction-based" health care system the accountability or motivation for persevering until the puzzle of someone's illness is figured out seems to not rest on the providers (the "Dr. House's"), but on persistent patients or their families.

East coast (NS, NB) has been getting a huge amount of lyme press as well this week (including a bit of BC's FOI - well done!) - it may be some time before the system changes though.

The great news is we now have something definitive to work with -- with those Lyme literate practitioners that we can find who "get it!" Thanks!