I know how this stuff is... some days one can feel pretty good. Then comes a bad day and it seems like this is NEVER going to get better. Then it does. I detect what is getting to you the most is discouragement, our worst enemy.

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Originally posted by James H:
Now, now... Since when were we supposed to beat ourselves with out CD57 numbers, like they were a bathroom scale? Mine is 17, so you are ahead of me by almost double. Not that ANYONE really knows what that number really means as far as our progress.

I know how this stuff is... some days one can feel pretty good. Then comes a bad day and it seems like this is NEVER going to get better. Then it does. I detect what is getting to you the most is discouragement, our worst enemy.

You need to talk this out with your friends. It WILL get better. Really!

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I am not going to say "it will get better" because you are in a place right now where you feel like throwing in the towen and nothing I say can help you to feel better.

I have been there. I DID throw in the towel after 7 months of treatment. I had every test under the sun to see if maybe it was not Lyme that was causing me to feel so friggin horrible. I did have one ER Doc tell me I had Carcanoid Syndrome, a rare untreatable cancer. Well, THAT really made me feel great! Thankfully, he was so off base.

All I can tell you is that I eventually went back on abx and targeted co-infections, based on symptoms. This was the key to getting me to 50% better than I was. I suggest you discuss co-infections with your MD and try treatments for same. Forget the tests for these, as they are often missed by the standard labs.

Also, see if you might have Systemic Candida and/or Mycoplasma. I was positive for both, which was initially missed. I have gotten better by treating co-infection, treating Mycoplasma, going on a strict ant-yeast diet and staying the course with abx for Lyme. I am only 50% there but, I now have many good days per month.

Just some suggestions.

It is really discouraging and it is frustrating to deal w/your family and friends doubting whether it's really Lyme.
Just hang in there...

Try not to have a timeline in your head concerning when you'll get better. Just take each day as it comes and focus on helping your body fight the bugger off.

I'm sure this doesn't help, but misery loves company.

Jess

Meaning in my mind anyway is that Cd whether its cd57 cd4 etc the number part in it stands for any number of antigen's including the ones in lyme etc .
Did that help ?

CD57 LINK

By the way, I was not belittling your misery, in case the tone of my post did not come across right. I feel your pain.

It's just that a heaping dose of discouragement on top of the misery of the disease itself makes it all the worse. So lean on your friends when you feel like this. It will make you feel better just to talk to people who understand what you are going through.

Did I tell you that my sweety pie wife is also in the club now? Poor thing! My labs came back a definite positive, but her WB was lit up like a christmas tree! At least we are doing this together.

She seems to have a new hobby of bringing home microscope slides... it is surprising how many people around here have at least visible traces of a protezoan infection in their blood. We do not know if it is one of the 2 kinds of Malaria that are native to this area, Babesia, or some other unidentified protezoan stuff. The people with traces of it are not what you call sick, but they tend to complain about tiredness and sometimes headaches. Maybe someday we can interest a REAL scientist in looking into this.

Her new hobby also uncovered a friend with a heavy load of Babesia-looking things, and a couple of visible spirochettes on a blood smear if you can imagine the probability of that! (I think we know why she has been plagued by those horrible migraines now.)

So, there will be another member of our little club here soon, and another added to GS's patient load. I won't ever complain again about how much time it takes looking for unwelcome critters on slides!

Those of us living nearby should try to look after one another when we can. It is good for all of us, and we can take turns depending on who's the most bummed out at the moment. (Email me if you would like our phone number.)

GS has been very helpful and is trying very hard to give us symptomatic help during treatment so we can function and feel better. I am sure she is trying to do the same for you... sorry it is not working better!

The Hydergine and Piracetam has been very helpful. I am still out of whack, but I can function and work through it. It is sort of like having a set of really good fog lights! Did you run out of piracetam? I have plenty if you need some while waiting for a reorder.

I will repeat The Crime's question about co-infections. I'm not sure if the stuff we had was malaria or what... but we took a week of high dose artemisinin while waiting for our first GS appointment and it knocked out. In my case my headaches and alot of pain went away with it. Nothing like it showed up on the extensive labs GS did and it has not come back yet. It would have been interesting to know if the labs would have picked it up had we not already whacked it with the artemisinin... but at least it is gone along with a bunch of symptoms.

We hope something helps you feel better. Talk to us when you need to.