You're doing just fine -- you might want to check out www.lymenet.org and
especially (because of the children) www.lyme.org and e-mail to

We try not to mention doctor's names except for the well-known ones
but there isn't any rule.
Someone has asked that answers be posted at the top on replies.
--barbara

In article , "Cindy" says...

  Thanks so much for listening.  Being a "newbie" I'm

I realize that a small percentage of the population "naturally" would react
to band 41....and
A small percentage of the population will have aches and pains and "other"
problems....but
why does it seem that these two quite often go together.

One would think that only a the smallest of percentages of people would have
both???  Seems to defy statistics.

Dear Cindy,

Thank you for sharing your story.  What a long, crazy path you have been on,
 and yes, unfortunately it is all too familiar.  So glad your path has landed
 you with what sounds like a doctor who knows what she is doing, and will
 follow your case and not deem you "better" until you really are.

I know of many people who have Lyme disease who only presented with the 41 kda
 band, then the 41 and 23 and then, maybe even years later,  more bands finally
 showed up, and so these people finally met the CDC "surveillance and
 reporting" criteria - yet the disease was raging during all these previous
 years.  So you see, the {*filter*} tests are not ideal to say the least.  To my
 knowlege, the 23 band is specific to Borellia burgdorferi.  

It sounds like your doc sent a LUAT to Igenex, and that can be very helpful.
 She sounds right on.  

By all means, follow up on testing your children .  If you can't find a doc who
 will test them (via the Phoenix support groups or info from someone else on
 the ng, or if your other doctor refuses) I know a doc in Sun Lakes who worked
 with me for a few months while I was doing IV for Lyme there (staying w/my
 Dad).  This doc is by no means a Lyme expert - I was his first - but he is
 open to learning I believe.  And yes - people tend to not post doc's names,
 unless perhaps they are already published and actively vocal themselves in the
 Lyme world.  

So it may get worse before better (herxhiemers) but HANG IN THERE.  After a
 year and a half of fighting the disease, and not realizing I was dealing with
 depression, I finally realized I was, and got help via antidepressants.  Not
 for everyone, I know, but, if they work for you, they sure can help take the
 edge off of the "overwhelmingness" of the fight.  I found that after taking
 the anti-d's for a few months I had more mental energy to focus on fighting
 the disease - as opposed to laying in bed and just wallowing without knowing
 why.  I never would have believed I would have ever had anything to do with
 anti-depressants, but it's so damn PHYSICAL, the depression - and
 unfortunately it is often a part of Lyme disease.  So do as much as you can to
 "treat the symptoms" and take care of yourself as you work on treating the
 disease.  I mean, sometimes, in the beginning, I would be so overwhelmed with
 the fact that I had Lyme disease, that I would forget that if I was nauseous I
 could take anti-nausea meds, or drink gingerale or something to try and
 relieve the symptoms.  Well, I'm starting to ramble.  Sounds to me like you
 are on the right course, but the best advice I can give is to follow your gut,
 and make sure you are involved your treatment plan.  And keep doing what you
 are doing - learning all you can.

Keep us posted.

Sincerely,  

Nancy O.

<snipped>

Someday, all these "Typical Tales" of mistreatment & misdiagnosis will come to
 an end, but probably NOT until these doc's are either sued or/and people start
 complaining to the medical boards in the same way you would turn a company
 into the BBB. These doc's are going to have to take some time to get all the
 facts about this disease, instead of just reading damn "cliff notes" from the
 current regime of the medical system.
They are NOT going to do that, until they get turned in enough .... until it
 becomes
easier for them to become educated, then to remain as they are.

I know how it feels to want to give up ...... I was there oh, 'bout a month ago
myself. Luckily, I received the much needed emotional support I needed
at the time from the really special members of this ng, and I'm here to fight
 another day.

Welcome, Newbie and keep posting so we can get to know you and offer you
whatever help we can. You can, and will, get through this.
Marleen