Please please help--need advise CD -57 low??

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KatieBrowne
New Member


Date Joined Nov 2012
Total Posts : 14
   Posted 11/26/2012 6:15 PM (GMT -7)   
Hi there. My name is Katie. I am feeling very frustrated and confused about what my next step should be I've been feeling and I need some advice. Back about 15 years ago I began feeling very "spaced out". I 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 with marijuana 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

nan777
Regular Member


Date Joined Aug 2012
Total Posts : 343
   Posted 11/29/2012 12:15 AM (GMT -7)   
Hi Katie,

Hang in there! I know what you mean about feeling you are missing out on life. I had CFS symptoms for 17 years, got diagnosed with Lyme three years ago (via an LLND at Fibro and Fatigue Center).

Now am way way better due to some recent treatment at Hansa Center. 80 percent of my fatigue is gone and hardly any brain fog. so grateful!!

CD 57 low can certainly be lyme. Only about 1/3 of the people get a bull's eye rash. I never did.

I am going to give you some advice, based on my experience of 17 years..which includes mayo clinic, very specialized lyme and cfs docs (naturopaths and regular), and years of study. Get to the Hansa Center!.

They have treated thousands of people with lyme and other chronic, hard to treat cases. I am a success story as are many many others. I would spend the money there first, rather than trying bunch of things, even specialist LLMD's and ending up there anyway (this is what I have seen with many patients).

I say this, because I had some top treatment, but Hansa's diagnostics (CRT thermography) found things none of the others found..despite extensive and specialize lab work I had done several times per year for several years. I also had ART (specialized diagnostics from Dr. Klinghardt ( a top lyme doc). Hansa's diagnostics were better! found stuff all the others missed that was crucial for my recovery.

The treatment is also different..nothing anyone else is doing that I have read about or seen. You see the doctor for an hour per day (for two weeks) and he is treating and diagnosing you for that entire hour! You get specialized remedies for your body...each day. The rest of the day you do doctor-recommended treatments like lymphatic drainage, FIR sauna, detox foot baths, massage with FIR biomat, etc.

Even if you do not have lyme, this clinic will treat you...there were people there with cancer, chronic back pain and depression when I was there. Most had been to many many docs before coming, like me.

They treat the body, not the name of the disease..meaning they will find what is causing the fatigue and address it, based on the diagnostics.

My understanding from many of my docs is that infections generally underly cfs, whether lyme or not. Also toxicity from the infections and other things.

Sorry so long, but I wanted to give you an idea of my experiences and why I am recommending them. You can google Hansa Center to get more info. And call with questions.

Good luck! You can get well!

you can email me also if you like,
Nan
CFS symptoms for 17 years, diagnosed with chronic lyme 3 years ago. now going through treatment re-vamp at Hansa Center. Have been doing plant stem cells, artimisinin, various natural supplemnents, cortef and thyroid. FIR sauna, ion footbath, acupuncture, detox baths.

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/7/2013 11:38 PM (GMT -7)   
Hi Katie,

Definately get your bloodwork done with Igenex. It sounds like you may have Lyme Disease. Most labs aren't good enough to test for it. I had 11 negative tests before I finally showed up positive. I repeated the test with Igenex and they gave me another positive answer. Lyme disease, like Nan says, can lower your CD 57. Mine was in the upper 40s. I had problems with every part of my body, heart (mitral and tricuspid valves), thyroid, endocrine system, brain problems - I started heaving seizures, numbness and tingling throughout my body, and that's not even a drop in the bucket. I am in my 3rd year of treatment, and it is by far the hardest thing I have ever gone through.
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/7/2013 11:44 PM (GMT -7)   
Hey Nan,

I keep coming across your posts and I feel I can learn from you. Having chronic lyme, does it mean that they believe you will always have lyme and that it is uncurable? Did you overcome the lyme? Do you have any syptoms that lasted as a result of the lyme? I am SLOWLY getting better, and always encountering setbacks along the way. I am in and out of the hospital constantly. My daughter was born with lyme and she has been treating for lyme for over 2 years, and her Igenex reports are now coming back borderline. Nearly all the symptoms are gone and it seems she will make a full recovery (she is almost 17). But my lyme has not been so successful like hers. Do you have any suggestions? I am open for anything. Thank-you!

Samantha
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!

nan777
Regular Member


Date Joined Aug 2012
Total Posts : 343
   Posted 1/12/2013 8:54 PM (GMT -7)   
Hi Samantha,

I am just now seeing this post!

I would be happy to talk more with you....please email me!

I don't want to hijack this thread..:)

Short answer, though, is that my understanding is that the lyme bacteria is not ever fully out of the system. This, however, is not the bad news it seems! There are people who get infected who never have symptoms.

So..it is indeed possible to get back to a "normal" life without symptoms. Many people have done so.

I think ups and downs are par for the course, especially when one has had it for a long time.

Again, happy to email or chat on the phone...click on my username to email me.

Take care!
Nan
CFS for 17 years, diagnosed with chronic lyme 3 years ago. Hansa Clinic Oct 2012-- Now 80% well. Jernigan Nutraceuticals for lyme and yeast, Etheric delivery glutathione, Vit C with R-Lipoic Acid, L Ornithine aspartate, cortef, thyroid, lumbrokinase, FIR sauna, ion footbath, acupuncture, colonics, chiroopractic, gluten/sugar/refined carb free diet. CCSVI and Oral System Balance

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 1/16/2013 8:23 PM (GMT -7)   
Your symptoms are consistent w/ Lyme Disease. And,as far as I know, LD is the only thing known to lower CD57 number. I would recommend that you go to the Lyme forum on healing well. There is a thread, called "New to Lyme" that has a lot of good info. You need to find a LLMD (Lyme Literate MD) to be properly evaluated, tested, and diagnosed w/ Lyme Disease. Lyme testing is complicated, but in a nutshell, it's highly inaccurate and the sicker you are, the less likely that a Western Blot test will be positive because Lyme Disease supresses the immune system, making it difficult for the body to form antibodies. The best testing is through IGENIX labs, but most Drs. don't tend to order tests through them. However, Lyme is a clinical diagnosis, which is why you need to see a LLMD that specializes in it for proper evaluation.

Lyme Disease is very controversial - with both testing and treatment and most Drs. don't even want to be involved in it.

Also, there are many lyme co-infections such as Babesia and Bartonella. Both of those are a big cause of severe anxiety and insomnia. Babesia is also known to cause night-sweats and air-hunger. Not sure whether or not you have those symptoms.

Also, in the mean time, there are things that you can do to help yourself feel better, like detoxing. This info. is on the new to lyme thread on the forum. There are also herbal protocols (such as one by Stephen Buhner) that you could start yourself while trying to get to see a LLMD. Dr. Buhner has a book that you can read that explains it.

I hope this helps you. I wish you the best and a return to health.
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