Sick5 said...
Alimom4 I'm so very sorry you have to go through that. I am deeply saddened after reading your post. It's not right that any Canadian has to go through that.
Thanks Sick5... It's been a nightmare. Not a good experience at all. My (US) LLMD, in his last FAX (responding to mine) called my treatment "futile" and basically (politely) cut me loose. We won't be returning. Had been seeing him since Jan 2015 and basically spent about
5000.00 on trips and oral meds. Still have hundreds of $$ of meds sitting in my cupboard.. unused. Never mind the stress of feeling since April that my confidence in his treatment was ebbing. VERY hard situation.
We had such high hopes... Can I explain a little?
I **think** this "cutting me loose" was b/c I felt I was having an adverse reaction to one of the meds (Plaquenil) and stopped it before telling him-- even though he did not phrase it that way in his response. To explain- went from using a cane outdoors in Jan to being dependent on a walker indoors by March and a w/c for anything out of our home by April. Too weak to walk with cane now. (This is due to just my legs being weak, BTW. They have always been where I had trouble, but THIS was scary and ridiculous. When I told him I found it scary, he spent a WHOLE visit to the US to see him, trying to put me on an antidepressant for "stress relief" -- those were his words! I/we refused.)
The med I d/c'd due to the weakness and my suspicion that it was contributing to this has the possibility of causing the adverse effect of neuromuscular weakness, ataxia, and spasms and ALSO takes a LONG time to clear from the body- "sometimes" it is reversible-- IF that med was the cause. OMG) So you can see why I was trying to see if d/c'ing it would help. What a MESS.
I am NO BETTER yet. I do have an Igenex +ve IgM. That said, none of the ABX treatments helped me AT ALL. I just kept becoming worse in terms of legs being so weak I couldn't even get around the house.
So, now we're finding an herbal protocol (Jernigan looks like a "go") and we'll be doing it from home. Of course there's no help with that.
Made an appt with an LLND (Dec!!) in NS. I know this seems ridiculous-- no coverage at ALL for us here in NS or thru our medical plan. We did this extensively before when our little guy was small and had a new dx of ASD and it was SO costly.
We still use some of what we learned. But-- overall, it would have been better for us all had we NOT done it. Our son is OK, but he does have Autism-- that cannot be denied (nor would it be fair to do that!) We have been able to be sure he has a very good life at home and school, thank goodness. Noah is a happy soul. He's a sweetheart- our youngest.
So-- you can see why we have trepidation re: the costs of an LLND on top of the costs we have incurred for an LLMD (bad situation). We cannot believe that we have to go this route AGAIN. Despite this, hubby had me make an appt. I am very concerned at what this will cost, as we have seen how it snowballs in situations where one REALLY needs help. And this certainly qualifies.
At this point I don't know if an LLND can help me. Here in NS they cannot prescribe ABX, either, BTW. Just loads of $$ adjunctive therapies. Reading his website scares me, to be frank. Not a good attitude to have, but it is going to be "caveat emptor" this time.
At the LLND's office, we have decided that will be clear-- at the outset-- that this CANNOT snowball like it did for us in past with the other ND in 2005/2006-7).
Wishing you all the best--***please do try to get treatment as soon as you can*** -- We feel I was misdiagnosed at the outset, and although treatment has had no good effect (YET), we are STILL trying. It would have made a big difference , had I been tested and found to have Lyme in 2003 when symptoms became obvious.
Good luck, sorry this was so long... just wanted you to know I DO understand from the perspective of where I am coming from...
Take care!~ A