CD57 low and how do you function?

[LeedyD]

Dear All,

Hello, I am new here, coming from Europe, and have a burning question for those with a low CD57 (as I have a low CD57 of 15). To what extent are you able to work? and how many days? I have the neurological type of Borreliose/Lyme.

I am a bit lost, have been diagnosed with lyme 2005, had several long treatments and nine months ago an IV treatment 4 gr. Prior the last treatment CD57 was 100, during treatment it went down to 50, and now, after treatment (half a year) it is 15. I must say am bit better than before but not healed. The last year 6 years were very hard; from being social, energetic, enthousiastic, becoming a hermit who tries to work. I was "able" and had to work to support myself (40). I "work" and sleep, cry, "work", sleep and rest. 75% of the weekends as well, the remainder on the couch. As this has become my new life I begin to find it normal, and my memory of the better early days are fading away. The mornings are dreadfull, I dry up the tears and go in my car, drive to work, and cannot wait for the day to end (to rest, sleep,cry). During the day I survive and people at work hardly notice, but I do. Because of the monthly cycles I manage, but during the bad time of the cycles, each time, I think I will crash and stop working, but in the end I do manage. I do not know how long I can manage this. That's why I ask. I think I am overdoing and lost track of what is normal. But on the other side, there is little choice to go on, alternative is losing the job and than I am even worse off.
I know that there are people with a low CD (let's say below 50 even though I know it can be seen as a relative number) who feel relatively good, I am interested to know how you cope and what you can do; work, how many hours? sports? have a life?

Thank you for your time..and best to you all.
LD

[curedmylyme]

I have been rid of Lyme symptoms but have a CD57 of 30. I had Lyme about 10 years ago and got well with some fantastic home remedies. About 8 months ago I decided to get a CD 57 test done I was shocked to see a 30 because I function pretty normal. My daughter however has  a reading of 20 and stays in bed most of the time. The same remedies I did on myself, she could not do so we got a rife and now we are starting Vit C IVs this week to help her. Has anyone done these IVs yet.

[LeedyD]

Dear Jackie,

Thanks for the link!
It remains interesting to learn if there are any persons with a below 20 CD57 who are 'perfectly' ok and can function normally and have a normal life (iso a tiring life with setbacks). There may be persons who always have had a low CD 57 and function normally, and I realise they would not read this blog (being healthy) so have not that much hope I get positive reactions...
Or there may be persons who had a approx 100 CD57 going down and  r e m a i n   healthy with a low CD57 being able to work fulltime. Are there any examples hereof?

During the latest ILADS it was btw noted:
o CD57 suppression may occur in XMRV as well as in Borrelia. (Editor’s Note: There was also talk at this event of Chlamydia pneumoniae causing CD57 depression as well as a discussion of CD57 going down when one is in the midst of a Herxheimer or die-off reaction.

[This is what happened to me. In the midst of herx it went down, and thereafter even more.]

Best wishes back

[JackieCalifornia]

PS about your CD57 tests: I agree with Wonko that I would not fixate on those test results.  They are useful, but not a direct measurement of a Lyme infection.

An explanation of the CD57 test is at this URL:  

heallyme [dot] wordpress [dot] com / 2009 /01 /28 / understanding-the-cd-57-test/  

((replace "[dot]" with "." and take out all the extra spaces))

Because the Lyme antibody tests are so imperfect, however, having the extra data of a CD57 test is potentially useful to an MD in assessing .

[JackieCalifornia]

(It is not possible to change a message here after it is posted.  Don't worry, it happens to all of us.)

I understand how you are feeling.  You are not alone in suffering the social and emotional effects of this illness.  That is a big reason I come here to post, because I feel less alone.

I am glad you have good LLMDs watching out for you -- I would do exactly as you are doing.

Please feel free to visit with us here.  It helps me to know there are others who understand what I am going through.

Best wishes to you --

[LeedyD]

How can I delete the last 'roaming'  sentence??? bye

[LeedyD]

Dear Jacky, Dear Wonka,

Thank you for your commnents and kind words,
Jacky, I did do the co-infections test and have some immune response against Chlamyd. Pneum. and Mycoplasma next to the BB Gariini. Actually I now 'have' 3 Ilads LLMD's, 1 renowned in the US, and 2 in Europe. Next prescription for continuation ABX is available.  Because of having the European BB I am now treated in Europe. I now use nothing but are about to use again and the Doctor thinks I am having a relapse. Because of the work/emotions/low stress level, auto -immune disease I do not know what to do. I would like to believe the last IV treatment (herxing as well) did the job, and thereafter I worked like crazy (having more energy), maybe now the energy is just gone because of work/stress/emotions, on the other side, the fatigue/cycle is not normal. I did another CD test, and would assume that would climb. Am awaiting the results now..

@Wonka; your life sounds also very similar. My experience is also that it is better that they do not know albeit this is difficult because you would oh so like to explain  why  you behave in certain circumstances as not wanting to talk to someone you come accross in the elevator whereas your personality is that you would do this under normal circumstances. Or your at a client and cannot process the info or cannot find the words to discuss. Or why you come in late days after days as if  you like being in your bed for 16 hours in a row. If I would not be working, I would be sitting silently at home, alone, not being tickled to go into action as I lack initiative in my head. When at work, work comes to me ;), and I enjoy being around people.

As to work/life, I do not have any expectations, have to live by the day because I cannot live up to any promises (cancel them), but do continue to fight although its becoming more difficult and sometimes do not know why. The social impact is becoming worse as well. The few friendships are under presssure (because one is no longer a good companion which I can understand), and one lacks the (emotional) strength to challenge  this as well (as this means more emotions/cry etc). Again, I will continue to fight and yess, during work, no lyme talk, so it's a good distraction as well. Luckely my employer and colleagues are very kind and am also very appreciated, so that's positive (to end positive).

Thank you, and good night, and good days to  you as well.

At work I am appreciated. I do keep

[wonko]

My heart goes out to you, your situation sounds very difficult.

I don't think the CD57 test is reliable enough to use as a gauge of how much a person can work, I think it varies a lot on in the individual, how long they have been sick, what (if any) co-infections they have, etc.  How much a person can work with Lyme has so many variables, I don't think there is a good rule of thumb.  We all just need to do what we can.

It has been both my choice and necessity to work as much as possible through my illness, and that does bring with it many challenges, complications, and emotions.

My CD57 number was actually never low, but my professional life was heavily impacted by my Lyme disease.  I never stopped working, but had to reduce to part time for a year, and even then my productivity was terribly low.  My health has improved but I still have my struggles.  Like you, I need to rest as much as possible to be able to work, and I have little to no time for any hobbies or fun activities because of it.  I've also cried on the way to work and suffered through the whole day, desperate to get back home to cry some more and rest.

Working while you are sick is a big challenge.  I'm at a new job this year where no one knows that I was/am sick, and while I like the privacy it is tough to carry that burden in secret.  But there are positives to it.  Having my work gives me a distraction from having Lyme disease.  When I'm in a flare or feeling very sick, I easily become preoccupied with my illness.  Also, while the Lyme interferes with my work, it makes every success that I do manage taste even more sweet.  And working makes me feel like I'm fighting.  

I know that some people simply can't work at all, and others may have the option to not work.  For those of us who do work, adjusting expectations and having a resilient attitude are a must.

I hope you have some better days soon, and for what it is worth, know that you're not alone!

[JackieCalifornia]

Willkommen!  Es tut mir Leid dass Sie Borreliose haben.  Wir verstehen Ihre Isolierung.

But my German is not as good as your English, so I will write auf Englisch!

Many of us have the same narrow life that you describe, and it can be sad and depressing, so we understand.  

Have you been tested for other diseases that often come with Lyme ("co-infections")?  These other diseases often need different treatment from Lyme.  

I would find a new LLMD and have a new evaluation.

Also, you can read at ILADS [dot] org, the website for LLMDs here.

Let us know how you do, okay?  But never quit; never give up.  Gerade aus!  

Best wishes to you --