posted
Hi, I am new to this board and have a question about the cd 57 test. I have been unwell for the last several years with Hashimotos disease, pooped adrenal glands and early menopause.
I have a great Dr and am getting help with these issues but am not where my dr thinks I should be so he did a cd 57 test last summer and it came back low (can't remember the exact number)
he then did a lyme test through Igenex and that came back with one band positive (again, not sure which one as I really am not familiar with how it works).
He tested my cd 57 again a couple of weeks ago and it came back abnormally low at 0.028. He thinks I have an underlying infection and wants me to do the lyme test again.
This has all been relayed to me via his nurse so I have not had a chance to ask him anything about my concerns. Since getting this result, I have been online to investigate cd 57 and some sites talk about HIV and low cd57.
this of course has me concerned but as I look at some of the lyme symptoms, there are some that I recall having several years ago (ie sore soles in the am, urine urgency,clumsiness, difficulty swallowing) now I seem to have fatigue, brain fog and a general feeling of just not feeling right.
I also have a constant swollen gland on one side of my neck and remember this coming up about ten years ago. I do not recall ever being bitten by a tick or getting the bullseye rash
and have really always considered myself healthy it's just the last five years that things really seem to be going downhill health wise. I apologize for the long post and hope that someone can help answer my questions.
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi there and welcome to Lymenet
I am glad your doctor is still looking for the reason for your ongoing illness.
It is always nice to hear about docs that genuinely want to help their patients get well.
It certainly sounds like there may be a possibility of some tick borne disease playing a part in you not getting well.
That being said, Lyme Disease is a hot potato in Canada and 99% of MDs will not treat. Period.
Even with positive blood tests. They will refer to an ID doc and you will get treated according to IDSA standards, which are outdated and inadequate.
The best thing you can do at this point is contact CanLyme. The Canadian Lyme Disease Foundation.
The sooner you do this, (like tomorrow), the better. Talk to them about your CD57. Ask them for a local support group. Explain your situation. Be as open as possible.
Because of the issues Canadian Lyme patients face, they likely will not give you a LLND name over the phone. You will have to go to a meeting and introduce yourself.
It really is awful for MD's treating in Canada. I do not know of any.
LLND's are able to treat as they have a different college.
Lots of Canadians go over the line to the states to be treated properly.
If you post on here in Seeking, specify that you are looking for an LL close to the area of Ontario you are in, or the nearest state to you.
So back to your question.
Lyme disables the immune system. CD57 is supposed to be a marker that only a very few things will drive low-lyme being one of them.
Because lyme disables the immune system, many of us chronics will have a weak response to Igenex tests and other western blot tests. Our immune system just doesn't muster up anything anymore.
That is why it is very important for you to see a doctor who is ILADS trained and can do a proper diagnosis on you. Lyme is diagnosed CLINICALLY, not with blood tests. That is why an experienced and trained doc who sees hundreds of lyme patients is important to rule in or rule out lyme.
Also, ticks are filthy bugs. Their guts are like garbage dumps. They have many types of bacterias, viruses, and microfilarial worms in them. Yuck!
Most of us have lyme as well as other serious infections that also need to be treated. An experienced ILADS trained doc is essential for this.
Others will chime in soon.
I sure hope CanLyme or someone from this board in Seeking is able to help you find an LL (Lyme Literate) as soon as possible.
Best wishes to you, my Ontario friend,
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
When I wrote the above I assumed your doc wasn't ILADS trained.
Perhaps he is-that would be a bonus.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
28 is low for a cd-57. That is very common among lyme patients. The test is used as a tool to help diagnose Lyme Disease but not a sure thing. They can be unreliable and not truly represent where someone is in treatment.
With that low number and other symptoms I would definitely look into this further.
Lots of people, including myself, have never seen a tick on them or had a bite that they recall.
Greta gave you some really great advise.
Welcome and best wishes.
Posts: 486 | From USA | Registered: Jan 2012
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