Please help--need advise--CD57 low?

Hi there. My name is Katie. I am feeling very frustrated and confused  about what my next step should be in my journey to find out what is going on and I am asking for some advice. Back about 15 years ago I began feeling very "spaced out".  I have continued to feel this way ever since then with some days being extremely spaced out--it can be very scary at times and causes a lot of anxiety. Back when this all began I didnt know why I was feeling this way and I literally felt as though I was going crazy. I thought that maybe it had to do with a bad drug experience and I kept waiting to feel better but I never did. I asked my parents for some help and they took me to our primary care doctor. He sent me to a neurologist ran some tests. I was told that  I was fine. I began also having heart palpitations at this time and went to see a cardiologist. They did an echocardiogram and told me that I had mitral valve prolapse. They did not put me on any medication for this and basically told me I was fine and not to worry about it. Then I was told that I had a depression/anxiety disorder and was put on Paxil. Over the course of the past 15 years I have switched to different anti-anxiety medications including Prozac and Pristiq, however I don't feel as though they really help with the anxiety or the "spacey feeling"– just with the depression. 
The "spaced out" feeling has never gone away and recently has gotten much worse since the birth of my daughter – seven months ago. I also have headaches pretty much daily usually behind my eyes. My concentration level is crap right now as well as my short-term memory. I still have heart palpitations/skipping beats, etc. and I had a lot during my pregnancy.  
I just recently had a echocardiogram. I was told that I do not have mitral valve prolapse and either was misdiagnosed before or I have outgrown it. I was told that I have PVCs which are premature ventricle contractions and that the number of them are within the normal range and not to worry about it. I have also been to a psychiatrist, an allergist, multiple primary care doctors, an endocrinologist, etc. I have had many tests run including the Western blot test for Lyme disease, heavy-metal levels, thyroid, and the typical vitamin deficiencies, etc. My vitamin D was very low as well as my magnesium and selenium and my thyroid was a little off so I am taking supplements for all. My Lyme disease results were all negative, however my CD – 57 was quite low. It is 66. 
Also, back when I was a child I was bitten by several ticks. I live in Virginia and often played outside near the woods. I would periodically come home with ticks but my mom would just remove them and we didn't think anything of it. I never had a bull's-eye rash or anything. It wasn't until just recently through some research that I considered the possibility of Lyme disease. I think that the next step in testing would be to go through IGenex, but I'm not even sure exactly which tests I would order. So I think I might instead spend the money on seeing a highly recognized Lyme disease doctor in Washington DC. The problem being that he doesn't except insurance and it is very expensive. But I'm willing to do whatever I need to in order to figure this out.

Any advise about what to do? Do my symptoms sound like it could be Lyme disease or a coinfection? Is my CD – 57 (66) low? Could that also means something else? 

I would really appreciate any feedback. I'm finding myself being very sad because I feel like I'm missing out on so many things. I just don't feel fully present-constantly spaced out. I want to be the best mother and wife that I can be, but I don't feel well. Thank you for taking the time to read my post. Again, any advice is welcomed.
– Katie

Post Edited By Moderator (Traveler) : 11/27/2012 4:55:47 PM (GMT-7)

Summer3,
Thank you very much for your response. Is 66 low for the CD 57?

Most doctors that are LLMD's don't take my insurance (cough...atarts with an A and end with an A, and there is an ETN in the middle), which doesn't actually recognize Lyme as a disease unless you test positive for the inaccurate tests, so trust me I feel your pain. I am from DC but now live in DE. There is an LLMD with decent reviews that I am trying out in January. If he doesn't accept your insurance it is $120 for the first visit (plus diagnostic testing ~$500 depending) and then $105 a visit thereafter. MUCH cheaper than anywhere else I looked. He is in eastern PA, might be worth the drive for you. Email me and I'll send you his name.

Hi Katie,
Welcome to the forum! I'm so glad that you found us!! I'm so sorry for what you've been through, although that is common with chronic Lyme disease. You have enough symptoms that you should really at least be evaluated by a LLMD, if not go into treatment with a Holistic/natural medicine doctor.

If you haven't yet, I would highly encourage you to read through our "New to Lyme? Start Here!" thread, as it's packed full of important info, symptom lists -as Lyme rarely travels alone!!- informative links, some helpful pdf's and even a list of questions to ask any doctor that you are seeking treatment from!

While finding out if you are having issues with mold, it's still a really good idea to seek out more info to determine if you are infected with any of the tick-borne infections. You certainly don't want to leave them untreated!

Testing for these infections is incredibly flawed. First there are over 100 different strains of Lyme in the US alone, 300 world wide, and the current tests only test for 4 or 5 strains at best. So if you have one of the other 95 strains (which happens frequently) then there is no way you can test positive.

Another issue with testing for Lyme, is that the first order of business for the bacteria is to get out of the blood stream and into the tissues, so testing the blood won't show any of the bacteria. Yet another issue is that Lyme disease inhibits the immune system and the tests are looking for that immune response, not the bacteria itself. There is also the fact that the Lyme bacteria can 'cloak' itself by hiding in biofilms, going to the cell wall deficient form or cyst form, thereby effectively preventing the immune system from 'seeing' it.

So there are many flaws with the current testing and good reasons why so many people can't test positive for this bacteria. It's always better to treat these infections than to allow them to do more physical damage to your organs, tissues, and joints.

If you need help in finding a LLMD, then please let us know, as we have some links you can follow to ask for assistance.

The CD57 is not a 'for sure' thing for all people though. There are plenty of people incredibly ill that have a CD57 that is above 80 or so.

The CD57 is one tool that is helpful in determining the progress one makes in treatment - but only one tool of many.

Katie,

What part of VA are you in? There is an LLMD in the Nashville, TN area that accepts insurance. I'm not sure if this would be an option for you, but if you'd be interested I can give you their info. I'm sorry I don't have any advice on the CD-57. I honestly don't even know what that is. I hope you find some answers!

I also became very ill after the birth of my son, he's 18 months old. I'm still waiting for my first appt with the LLMD.

You can see Ginger's slides from the ILADS conference here which gives good info too. Basically she says to not freak out about the CD57 test because there is a great deal of variability in the results. (Same person can get two different levels if tested twice in the same day.) The test is still valid in indicating Lyme but is not a precise tool. In general, if you looked at Burrascano's slides he says that 20-60 is most common result in chronic Lyme patients, higher than 60 Lyme activity minimal. The problem with going by the result you have as an EXACT number is you could have gotten a different result if you had tested on a different day. The streaming of the ILADS conference will repeat next weekend if you really wanted to catch her talk.

http://www.ilads.org/media/boston/slides/savely/savely.html

Does anyone have any advice of whether or not to do the western blot IgeneX test. My doctor ordered what I thought was the Western blot Lyme test through labcorp and it was negative. Would that be a waste of money to do the IgeneX testing?