Omg...i Might Be On To Something

[CarlaB]

It seems to me that the C D 57 test corresponds to the symptoms everyone is describing. I also think that many who have terrible symptoms that don't resolve with treatment probably have more going on than Lyme.

Candida can certainly have similar symptoms ... almost identical. Of course, if there's candida, there's probably mercury, too.

With my LLMD being as thorough as he is, I can understand why the C D 57 isn't useful to him. I am curious what mine would be, I would guess it would be rather low, especially back in January when I wasn't functional at all.

Andrea, having Lyme is not a requirement to post on the OMG thread.

[Rachel--24]

If I'm negative, which I expect, I'm not leaving, and you can't either

Yeah you guys are both stuck with us Lymies.

Patti....I'm really happy to hear that you've been inspired to do some testing.

Its better to know then to constantly have to wonder about it.

I dont think I would be all that surprised if you were positive...but I think its mainly cuz you live in New Jersey....I guess I think everyone in NJ has it.

Seriously though...the only results that surprised me a little were Donna's....when it first showed up in her ART session I was surprised....and even a little doubtful.

I wasnt expecting her to get clear results on her Western Blots.

So yeah...at this point I dont think anything will be too shocking to me. I'm thinking anyone who is having chronic and unexplained symptoms should just get tested and rule it in or out.

I remember at the beginning of this thread....back in the pajama party days....I wondered how crazy it would be if all of us ended up having the same problem.

We could relate to each other so well and we've suffered so many of the same symtpoms.....even so...

NEVER did I seriously think it would actually happen this way.

Its pretty crazy.

I do remember Bev's very early posts on the board. For some reason... right away I instinctively knew that she was traveling the same road I'm on. I think back then we had commented on how similar our reactions, sensitivities, etc. were.

So yeah...I've thought Bev had Lyme for a long time now..but people have to come to their own conclusions about stuff like this. I'm super happy that she came back to the thread with a determination to get this figured out.

Theres other posters that I get that same "gut feeling" about and I just hope that eventually they find their way to this thread or somehow get the information so that even if they're not ready to look into other things....it would still be something that was brought to their attention. Later on they might remember it.

[Rachel--24]

And my doctor's rationale of not ordering the C D 57 was very similar to Carla's...I think they treat very similarly. (Not knocking it by any means...at all! Just offering what I know) Her words were "I know you are sick."

I guess right now the CD57 results arent really gonna change anything as far as treatment etc. I'm mostly wanting to know how meaningful it is because of the relapse factor. So many people seem to relapse when they stop treatment...from what I've read if the CD57 count is high enough...there is a much better chance for not having to go through it all over again.

I have to look into it more to see if its actually true that once the # is high enough...people are not relapsing once off of treatment.

But yeah....right now we're all sick and need treatment regardless of what the CD57 results are. I'll probably feel more secure if my count actually goes up to where my Dr. wants to see it.....so that I'll feel like my immune system is doing ok with it.

Its hard to know how useful the test is when theres so many other things that can contribute to the unwellness. It makes it all more confusing.

[dlp252]

Yes carla- my bad- The key word is WHEN- When we are well I think my cake will have to still be gluten-free, but that's fine!!! I would like crumbled Reese's pb cups IN the cake, in the frosting and one on each prong of my TWO five-pronged forks !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

All I want for Christmas is 2 scoops of pb and Nutella

Well, yes, my cake will most likely always have to be gluten free...I forgot about Reese's and someone mentioned peanut butter chocolate ice cream...I must look for some very large bowl plate things.

OMG, I get to say it again. LYME CLAN

The old LYME CLAN's getting a bit a bit busy

I also wanna see Bevs positive bands....I'm assuming she doesnt have that info yet since she got the results over the phone....but I'll be waiting ( and not so patiently).

Ditto!

I burn alot easier since I got sick. I've always tanned easily but with all the imflammation, fluid retention, toxins, etc....my skin is sometimes more pale and I'll burn pretty easily before I get any kind of tan.

Me too...I'll repost my picture from my "reception"..when I do, notice how dark I was. I used to tan VERY easily...I'm hispanic and Italian (and Polish and a few other things) for goodness sakes...I'm supposed to have olive skin, but right now I'm as pale as a ghost! Since I've been sick, I burn pretty quickly.

You're here because you're our friend and we love you! Plus, you have lots of dietary restrictions going on, the same as everyone here.

If I'm negative, which I expect, I'm not leaving, and you can't either

You betcha!!!!

Donna 84 (is that the correct #)

What do you think Donna?

I think it's pretty accurate. While ART found Lyme to be a problem, the problem doesn't seem to be with the immune system. I think the other factors are affecting that. I think Lyme is still a problem for me (as ART found), but it's not immune. Can that be possible and does that make sense, lol? I think it's causing everything else to be much worse and all together they are just getting horrible. Somehow the lyme is affecting my thyroid which would account for some of my symptoms. I can't wait to see what my next session of ART shows. By then I'll have been on some of the supplements for a longer time.

Ok....so from what I know about each of us...as far as symptoms, history, other issues, etc. To me the #'s seem to correlate.

I would consider myself to be pretty affected and definately having some major issues getting in the way of living life the way I'd want to. However, knowing that mercury is what really knocked me down and that I have major candida problems....I did not expect the CD57 to be low...even though my symptoms are definately there.

So it makes me wonder if the CD57 is useful but doesnt match up with everyone because of other issues?? So basically if someone is highly symptomatic yet has a high number....what if its a co-infection....or mercury...or a virus...or something else thats causing the symptoms and the Lyme is actually being handled??

Or if someone has only a few symptoms but a high number....what if they arent extremely symptomatic because they dont have co-infections, problems with metals etc?? What if for whatever reason their immune system is not getting a handle on Lyme yet they arent totally incapacitated either.

Sort of like people who are found to have Celiac...total wiped out villi...yet no symptoms. They arent horribly sick....but having no villi and the immune reaction itself has to be taking a toll on their bodies and their immune system.

So couldnt the CD57 be a true indicator of how well the immune system is coping with Lyme? I dont think its suppossed to match severity of symptoms...but more having to do with the immune systems capability of keeping the infection in check. If we were just going by symptoms alone then I would expect mine to be really low.

I think it could be why alot of people feel like they've recovered but then later....after having stopped treatment...they relapse. They may have been free of symptoms but their immune system isnt ready to take over completely...and so they relapse.

Anyways....its another unproven test but so far I dont think they've found any other diseases which seem to affect the CD57 count...just Lyme. I just look at it as another tool.....it could be useful to some and not others.

I would agree I think! My immune system is fighting the lyme pretty well, but it's getting harder I think because of all the other stuff. That would be why my number isn't great, but isn't horrible either. I think that had I not addressed these issues now, I would have continued to worsen in symptoms. My chemical sensitivies are much worse than they were just a couple of years ago.

I still wanna know what everyone else thinks about their results though. I think me and Donna are the only ones thinking mercury/candida are contributing a great deal to our symptoms. We also have the highest CD57 count.

Donna is obviously better off than I am in every way.....well except for the fact that she cant sleep sometimes...I have no problems with this...I can fall asleep anywhere.

Yep, and mold in my case which is cross-reacting (so the doctor says) with the foods and the environmental stuff and the candida. And, yes, I'm still better off in every way (except sleep) than you.

I just asked her and she said it hurts more when she breathes but if she takes smaller breaths it feels better.

Thanks.

I'm not going anywhere. I've come to love all of you guys.

I wonder if she pulled a muscle or something...has she been coughing?

Glad you won't be going anywhere!!! We love you too!

[Rachel--24]

Some people are continuing to treat Lyme long after all symptoms are resolved.....just staying on treatment until the CD57 count is high enough. So thats the concern I would have about just treating based on symptoms with Lyme being so "stealthy" as Rinne would say.

So if anyones Dr.'s are using it.....I would be totally interested to know what kind of experiences they've had with it and if they continue to treat the patients until they feel the immune system can handle it on its own.

I'm gonna ask my Dr. more questions next time around.

Even if the Lyme isnt causing alot of symptoms for me....I dont want it hanging around getting me all toxic again.

[dlp252]

Seriously though...the only results that surprised me a little were Donna's....when it first showed up in her ART session I was surprised....and even a little doubtful.

I wasnt expecting her to get clear results on her Western Blots.

You and me both! :lol: No one was more surprised than I was. I was plenty doubtful so I'm glad I followed up on it and saw Dr. S.

Oh, by-the-way, I was at HN today for my chiro/PT appointment and I got the PT guy who does the massages there. I asked them if they just do lymphatic massage and he said it's the same thing basically as deep tissue massage, and yes they do that. The technique would be a little different if you had a lymph condition (forget the name, sorry!). The one thing I forgot to ask was in what increments they do them...I know they do 50 minutes, and I think they probably do 30 minutes. If you go for one there, make sure you tell him if the pressure is too hard. I get him frequently and he knows I like heavy pressure but that might be too hard for most people.

I scheduled a 50 minute massage with him on Tuesday...I'm taking the day off and decided to treat myself.

[CarlaB]

I dont think I would be all that surprised if you were positive...but I think its mainly cuz you live in New Jersey....I guess I think everyone in NJ has it.

When we were in NY and drove through NJ, I remembered that my mom went to college for a couple years outside of Princeton. I then wondered if I was born with it ... I had my tonsils out when I was 5 and was quite ill for a long time before that.

It wouldn't surprise me a bit if my mom had it.

[Rachel--24]

I still have alot of pages I havent even read yet....things moved along pretty quickly the past few days and I fell behind. Yeah...story of my life these days.

I gotta surrender the computer for awhile...be back later to catch up.

Also...just wanted to mention once again how grateful I am to have all you guys as my friends.

All of you have made a huge difference in how well I'm handling everything that comes my way.

[CarlaB]

I tan about the same as I always did ... I get a tan, but not a dark one ... I'm pretty fair, but I do get tan. I'm tan now ... everyone wonders where I've been ... except for a couple days in Phoenix, I've just been trying to get out in the sun here every day! Except today ... still have a fever over 100.

Rachel, I'm glad to hear you've just been busy, I thought maybe you weren't feeling well since you haven't posted as much as normal.

[jerseyangel]

Also...just wanted to mention once again how grateful I am to have all you guys as my friends.

All of you have made a huge difference in how well I'm handling everything that comes my way.

I would like to echo this thought

I've never, ever been able to get a tan. I'm Italian, but very fair skinned. Some of my family has the deeper skin that tans nicely--including one of my sons. The other one is fair like me.

I'm also very sensitive to the sun and will feel sick and woosey after only a short time in it--moreso if it's also hot.

[dlp252]

Also...just wanted to mention once again how grateful I am to have all you guys as my friends.

All of you have made a huge difference in how well I'm handling everything that comes my way.

I feel the same way!!!

I've never, ever been able to get a tan. I'm Italian, but very fair skinned. Some of my family has the deeper skin that tans nicely--including one of my sons. The other one is fair like me.

I'm also very sensitive to the sun and will feel sick and woosey after only a short time in it--moreso if it's also hot.

My mom is half Italian (half Polish) and she is very fair, complete with blue eyes and everything...my cousins all have blond hair, lol. I really pulled the hispanic side and that with the Italian really did it.

[Mtndog]

I can't wait to see how Laura's re-test turns out either.

Bev's appointment isnt' until the 6th of June so I assume we'll have to wait that long.

If Patti winds up positive for lyme then I may really have to quesiton why I'm here. I think I'd be the only non-lymie unless I'm forgetting someone.

No way- we NEED YOU!!!!!!!!!!!!!!!!!!!!!!!!

Drive by for the love fest- I told you guys before I told Kurt. Don't think I would have been nearly as calm without ALL of you.

:wub: :wub: :wub:

I am proud to call you all my friends. :wub: :wub:

[happygirl]

:wub: to you all too...

Bev, I'm just happy you have some answers. I am SO relieved for you.

[NoGluGirl]

Dear Rinne,

I have actually thought about pursuing a comedy career. I always thought of stand-up. Maybe I should get myself out there on open mike night? At least that would be something different. Blow me if I haven't made a decision! That never gets old!

Dear Andrea,

I might be able to get pans a little at a time. That would be the smartest answer. I think I should try to get one or two new cooking items every paycheck. That I think would be doable. I just wish I could do more cooking in less time. I have very little energy, and am desperate for something with flavor!

I am sorry to hear poor Talitha is having such a difficult time. The poor kid! I have had similar pain at times. I have no idea what could have caused it, but it goes away and comes back. I get chest pain like that as well. It almost feels like a muscle pull, but it is not.

We are so glad you are staying! It would not be the same if you were not on the OMG Thread with us! There would be a gap. We would miss your insight. We love you too!

Dear Rachel,

That is so weird about the tanning for me. You apparently are not the same as I am. I never was really dark complected, but at least now I am not as pale. I have a tan. It does not look dark compared to other people, but for me, it is a big deal!

We are so glad you are our friend, too! If you had not started this thread, some of us would have never met! Can you imagine? Rachelville is the place to be! It is where we all belong!

Dear Patti, Donna and Carla,

It is interesting how the gluten effects different things in different people. My gallbladder also made me very pale. After I had it out, I began to have more color. However, since going gluten-free, I actually am not as sensitive to sunlight. I am sensitive to heat, though. My Thyroid has something to do with that, I am sure. We are primarily Irish, English, and Scottish. That is pigment screwsville for the most part. However, there was a rumor that there was Cherokee on my mother's side.

Dear Laura,

I am glad you got the tests done. IgeniX seems to be the best lab for the job. Your results will be interesting, I am sure. We all will be anxious to hear. I hope your results are good news.

Sincerely,

Jin

[AndreaB]

I dont think I would be all that surprised if you were positive...but I think its mainly cuz you live in New Jersey....I guess I think everyone in NJ has it.

I remember at the beginning of this thread....back in the pajama party days....I wondered how crazy it would be if all of us ended up having the same problem.

We could relate to each other so well and we've suffered so many of the same symtpoms.....even so...

NEVER did I seriously think it would actually happen this way.

That's the main reason I think Patti may be positive......NJ.

It's intersting how everything has worked out with evreyone here for sure.

I do see a lot of different names reading.

I wonder if she pulled a muscle or something...has she been coughing?

No, no coughing. She was going from the table to the couch getting the yarn for the latch hook. She likes to do that part. She looks at the pattern and figures out what I need.

I see you commented on things I didn't see so I'll have to go back and look for the missed posts.

[Rachel--24]

Rachel, I'm glad to hear you've just been busy, I thought maybe you weren't feeling well since you haven't posted as much as normal.

Carla....I'm not any sicker than normal....whatever "normal" is.

I'm trying to get organized so that I have enough time after work to do everything I wanna do...like go get my food, have some board/research time, make sure I'm taking all my meds/supps appropriately and do things for detox like the castor oil pack...which takes an hour.

I actually went into work early the last couple days....which really means that I almost got there on time.

So that allows me to get off earlier and have more time.

Plus the drama on the other thread distracted me a little. I think I practically wrote a book over there!

So thats why the lack of posts....I'm reading...trying to catch up. I still dont even know what all happened in NY with Chloe!! I'm kind of reading backwards.

[Judyin Philly]

HI GUYS

JUST SPENT 1/2 HR DOING A LONG POST AND IT'S GONE SO.......................WILL TRY AGAIN TOMORROW

THANKS FOR THE KIND WORDS AND THOUGHTS

JUDY

[AndreaB]

The old LYME CLAN's getting a bit a bit busy

Hi Nikki!!!!

The lyme clan is growing by each diagnosis.

[Judyin Philly]

I asked them if they just do lymphatic massage and he said it's the same thing basically as deep tissue massage, and yes they do that. The technique would be a little different if you had a lymph condition (forget the name, sorry!).

THE ONE THING I DON'T WANT TO FORGET IS FOR DONNA

IS IT 'MLD' PT YOUR TALKING ABOUT.

MANUAL LYMPHATIC DRAINAGE..?

IT REALLY REALLY HELPED MY LYMPH EDEMA CAUSED BY CELLULITES BACK IN JUNE.

IT FELLS REALLY GOOD TOO.

THERE ARE DIFFERENT KINDS OF THIS THERAPY..AND MAKE SURE THE PERSON IS CERTIFIED TO DO IT.

GOOD LUCK

[AndreaB]

I scheduled a 50 minute massage with him on Tuesday...I'm taking the day off and decided to treat myself.

Good for you.

It wouldn't surprise me a bit if my mom had it.

Sounds like a possibility.

Also...just wanted to mention once again how grateful I am to have all you guys as my friends.

All of you have made a huge difference in how well I'm handling everything that comes my way.

Back atg you.

I've never, ever been able to get a tan. I'm Italian, but very fair skinned. Some of my family has the deeper skin that tans nicely--including one of my sons. The other one is fair like me.

Ok, so how many of us have Italion blood on this thread. I do, Donna, Rachel, Patti. Anyone else?

I am proud to call you all my friends. :wub: :wub:

Ditto

I actually went into work early the last couple days....which really means that I almost got there on time.

So that allows me to get off earlier and have more time.

Plus the drama on the other thread distracted me a little. I think I practically wrote a book over there!

So thats why the lack of posts....I'm reading...trying to catch up. I still dont even know what all happened in NY with Chloe!! I'm kind of reading backwards.

Yay on getting to work on time!

You did write a book on the other thread. That must have taken quite a bit of time.

HI GUYS

JUST SPENT 1/2 HR DOING A LONG POST AND IT'S GONE SO.......................WILL TRY AGAIN TOMORROW

THANKS FOR THE KIND WORDS AND THOUGHTS

JUDY

Judy, how about typing your responses on a word processor and copying it over?

[Rachel--24]

For all the cd57ers....I was trying to find out what other peoples experiences are....or just anything about the test. Its hard to get any info cuz the test is fairly new and not everyone uses it.

I found a long thread on a different board that had some good info but not anything really new that we havent heard.

I'll post it here for anyone who's interested.

I dont know how often, but to my knowledge your cd57 wont go up during treatment, but will rise when the infection is controlled. So if your not having a succesful treatments odds are it wont go up, but once the lyme is undercontrol by abx and your immune system it will slowly start to rise. If you dont reach a 60 on the CD57 a replapse is said to be most certain.

Personally, I think 60 is not high enough but it seems like some LLMD's are going by 60.

My Dr. said over 100 and Scott recommends over 150 before stopping treatment.

Some LLMD's wanna see the count over 200. It seems to vary with each Dr.

This was a good post...

Ive done alot of reading on the CD57 and to me, it sounds like it should be one of the top tools in diagnosing and treating lyme disease. I believe its only been around since 2000 dont mark my word. CD57 is useful because it in a way counts your natural killers cells called cd57. I read various articles and noted that CD57 cells are ONLY cells known to date to be suppressed by Lyme Disease.

Most of the guidelines are like 20 or lower means highly active lyme disease, 20-60 means active lyme and scores of above that mean less active. Looks like drs have different ideas on where that count needs to be before treatment ends. Some say less then 60 is asking for a complete relapse of symptoms and most likely worst then the first time around. Then some Drs say it needs to be around 200. Thats the route I would leans toward the higher the better you know, it just depends on the dr and most importantly your symptoms, drs will treat atleast 2 months after being symptom free.

On your questions do drs not stop treatment until the cd57 has climbed up is correct, if you said you felt all better and your CD57 was like a 35 he would still want to treat you, but that would be up to you, but I think that would be the smartest idea. Your CD57 will not jump like lhook said, during treatment, it jumps when the infection is under control, so the day you wake up and feel unusually better for a week or so and you continue to feel better, your CD57 should be climbing up.

Not all lyme drs use CD57, but I believe they all should, its a wonderful tool to see how your responding to medicine and how your doing. My dr uses the CD57 count and symptoms do determine when to stop treatment, however I believe he likes to do an final Igenex report.

Think about it the cd57 testing is a fact that it only reacts to lyme, so why dont mainstream drs use it along with the westerblot. Get rid of the elisa cause its not worth anything, we all know there never goign to do igenex testing.

So you have someone that is sick comes into the drs office, complaining of symptoms, the dr runs tests finds nothing. Ah he runs a cheap and inexspensive CD57 test, (heck that could even become normal proticol for blood testing, that test is so cheap), even if hes in the acute stage its still going to be low, say the kids is barely sick, (normal cd57) is 200, hes come back at 100, that right there is a clue that lyme is a certain possibility. he can go ahead and run the westernblot to see what pops up.

Im tellin yall alot of people wouldnt be in the position we are in if somehow, someway we could get medical doctors to use this test. Its essential and its key. I dont know I just get so frusterated about the lack of testing regular doctors do, its not really there fault its just obvious testing isnt accurate and up-to-date, but they arent told that or even know that.They need to be updated they aren worth anything, when was the last update 1975, when the first case of lyme was discovered, aids isnt treated like this, its more serious yes, but people with lyme not all but some suffer just as bad even more then people with aids. Something has to get done with this lyme thing to many people are becoming chronic, when its not neccesary. My moronic md said I checked you for lyme, he did the elisa, he had not one clue of how inaccurate that is NOT ONE IDEA.

oh yea I think my cd57 was a 4 so, I guess that tells you how im doing.

I'll try to link the page but dont know if it'll work or not...

Open Original Shared Link

Its interesting to see how other Dr.'s are using the test. I still think if symptoms are gone and the CD57 is only around 60...or even less then 100 the risk for relapse seems high. I dont know why some LLMD's would go by 60??....heck...I'm at 78 right now. I think I would definately wanna see my count alot higher when I'm feeling good again.

[happygirl]

Judy/Donna:

Thanks for bringing this up. I am working on finding a good PT to do that. My dr. wrote me a prescription to have it done, as my lymph nodes swell during my flares, causing me a huge amount of pain. Judy, I'm happy it provided you with some relief. When you have a chance, can you share what you know about it and what type you had, etc?

xoxo,

Laura

[Rachel--24]

You did write a book on the other thread. That must have taken quite a bit of time.

Yeah...and I dont notice it when I'm typing. Later I was like DANG...that is a REALLY long post!!

Oh well...thats how I am...I have to say everything thats on my mind or I dont feel "settled"...I've been that way all my life. I definately dont hold stuff in.

[Rachel--24]

Oh, by-the-way, I was at HN today for my chiro/PT appointment and I got the PT guy who does the massages there. I asked them if they just do lymphatic massage and he said it's the same thing basically as deep tissue massage, and yes they do that.

Donna,

Thanks for asking.

I'll have to call Nancy and see if I can get an appt. I definately like strong hands for a massage so I'm not too worried about that.

and YAY for taking a day off and treating yourself.

[DingoGirl]

Exciting day here in Rville, another Lymie. Isn't it crazy, we get excited when someone's diagnosed with Lyme? Newcomers reading this would think we're loony...and yet possibly haven't known the length of suffering some of you've endured.

Bev, I am SO happy you have this dx - - and yet I sort of felt it for you all along. HOORAY, an official answer!!!

Judy and Patti - - SO glad you're getting tested.......

Love to all.