Hi Marlene:

I have no idea if this helps or not, because I am still completely clueless.
We've been on a journey to find out why he has neuropathy for 18 years.

Then finally, a neuro does a spinal tap and finds protein and he gets IVIG, then his balance improves.

Also, if you trace where my husband was 5 years ago, in the pain department and everything else, well he went from using a 125 of the fentanyl patch to not needing anything and becoming a body builder. Does this sound like a person with Lyme disease? I have no idea.

The only reason he can't go to the gym is because of re-curring foot ulcer (which was healed but which he re-injured by staying 8 hours on his foot all day on Monday....not to smart there was he??). But he has a deformity of the bone underneath the ulcer (this was diagnosed by his podiatrist). That's why the ulcer will heal just fine, but if he walks TOO TOO MUCH, it will come back. The only treatment that will prevent this re-curring, is to have an operation on the bone and reposition the bones or remove a bone, or something to that effect, but his podiatrist (at least the first one), woudn't do it because of his neuropathy and because they said "It will affect the big toe and you might lose your balance, and you don't want that, too many complications". So what is a person who is otherwise fit and fine, but who has neuropathy, and because of the neuropathy, had a foot ulcer, and the foot ulcer heals for a bit, but then if he walks too much, the foot ulcer comes back. So he wears a shoe boot thing that allows him to walk just fine.

I asked a podiatrist "why can't he just wear the shoe boot thing for the rest of his life, or even buy one of the shorter shoe boot things that go up to his ankle.??" It takes the pressure off and well, why can't he just wear it when he has to go somewhere???" I asked the podiatrist this and he said "No, it doesn't work like that, you can't wear the cam walker for the rest of your life". I said 'why not, is there a rule or something, I just dont' get it". and I was told "you can't wear this cam walker for the rest of your life, it doesn't work that way".

So what the heck is Alan supposed to do. No one wants to operate on the foot ulcer. (the bone thing). If they can re-position the underlying bone, and it won't affect his big toe, he won't get the ulcer back. That is what we have been told.

We are yet again, in touch with a new (in NYC) podiatrist who is yet again, another state of the art specialist. Alan feels that if they take care of his tailor bunion, his 3 compressed toes will straighten out and the neuropathy will be greatly alleviated.

See, we know what we want done, but they won't do it. Maybe it's an insurane thing, I have no idea.

I have just sent an e-mail to a podiatrist in NYC (this has nothing to do with cryosurgery by the way), it's was just an e-mail stating all our questions and if they take Alan's insurance, well, would they consider doing the tailor bunion.

I don't even want to ask them about the foot ulcer underlying bone thing yet.

Let's just get our foot in the door first.

So this wednesday he goes to Methodist and we'll see how the ulcer is doing.

Maybe this guy will consider operating. But if he doesn't we have to have options here. Alan's ulcer is not getting better. It's 18 months already.

Thank goodness he doesn't need referrals on his insurance.

We won't do anything until we hear from the guy at Methodist "no, I can't operate on his foot ulcer underlying problem". If this is the case, then we will go to the guy in NYC and get yet another opinion.

Opinions, opinions, that's all we seem to be doing lately.