posted
Hi: I'm feeling perplexed and frustrated, but hopeful and appreciative for ideas and support.
I'm being treated for Lyme second time around with apparent relapse after six months or so remission. My only current indicator is CD-57 of 17 and I did have a bulls-eye rash two years ago which I thought was hives and the doctor never saw it(I wish I could change this fact).
I've never had a positive IGENIX test for Lyme or Coinfections. My recent "googling" makes me think that maybe I was bitten by a Lone Star tick as the pics seem to match my rash which I unfortunately didn't photograph(I now realize I should've, of course)
Could that be why the CD-57 is so low even with treatment(it was last when checked after six months of treatment). Does anyone know of a Disease or diagnosis other than Lyme that could cause this low immunity score.
My current doctor, an LLMD doesn't buy into the CD 57 as much as level of functioning and is treating me with aggressive ABX, appropriate supplements for Lyme and the"diet" for the past few months and will do more testing soon.
I want to make sure that nothing is missed. I really "wannabewell."
Thanks so much for your help!
Posts: 23 | From limbo | Registered: Jun 2008
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'Kete-tracker
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posted
My CD57 was checked 6 mo.s into therapy by my LLMD, after 3 mo.s hi-level doxy. 38. Not particularily good. He changed me over to an amox protocol & prescribed twice-daily Cat's Claw. It jumped to 87. after 2 mo.s & I improved. As I understand it, the count- over TIME- is only used as an indicator of effectiveness of therapy, not how sick you are. Finally, I don't Believe there's any other infective agent that causes suppression of the CD-57 subset of large white (killer) bloodcells, though it's Possible the STARI spirochete might do it.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
A cd57 is an indicator of many diseases where one has little immune system to fight- in general..
It really can be this low with many chronic illnesses..
I have heard of people having very low CD57s such as yours, go up with treatment and then down again.
Have you been tested for not only a GAME panel (IGG IGM , a and e) but the IGG subclasses? Many don't get tested for these and if these are null or deficient, one may require IVIG to 'make' immune globulin in order to even be able to fight or deal with treatment..
No an immunlogist will do this but not all do.
I don't want to rain on your already cloudy parade, but have you beet tested for HIV/any cancer or autoimmune disease?
Don't worry, but have to ask. Sometimes the CD57 that low is a bugger to treat and it is a LONG HAUL with lyme treatment- but it can be done..
Many will tell you that a number lower than 20 is not treatable at all- BUT I have seen many cases that show otherwise and an rise above 50. It takes a while.
There is a natural supp that is not on the top of my head, that really helps for CD57 issues/low CD57- I posted an article about it but not here , it's on MDJunction and will go see if I can find it..
It's discouraging I know. Don't worry because of the possibilities I brought up. Anyone can have a false neg. on the best of tests, especially with low immunity, any other meds that we may have been on when no one knew what we had, even regular tylenol use can give us false negatives... If you have mono, EBV, CMV (have you been tested for those?) then they too can give false negatives. If your gut tells you you need more bloodwork to be sure- then ask for it unless you have been 'tested from head to toe'..Will get back if I can find the article
Posts: 49 | From Louisiana | Registered: Mar 2009
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posted
Sorry for the delay in getting back online. I'm Herxing big-time this week--UGH!
Thank you so much for your thoughtful and information. Some of it has me hopeful that the numbers will go up as/if the treatments effective over time. And, some has me concerned that I may have much more serious illnesses.
I see my LLMD next week and hope to get more testing done to try to get answers to some of these questions. It's so scary to think of what other illnesses I may have that have yet to be diagnosed. I've just been tested for the obvious co-infections and always show negative, but could be false negative as with the LYME.
'Kete-tracker--Thanks for your support. What is the Amoxy protocol that you speak of--that's one of the three ABX that I'm taking in this pulsing. I took TOA-free Cat's Claw for six months and my cd-57 decreased so I thought it meant lack of improvement, but I know understand that it might have needed more time, as in your case. What do you use for detox?
LostGurl: Thanks for the encouragement and suggestions on testing. Although scary at first, they gave me a start on what testing to ask for. I'd love to know the name of the supplement for CD-57 and immune issues if you have it, please PM me.
If anyone has any other thoughts/ideas, I'd love to learn from those in similar straits.
Thanks again.
Posts: 23 | From limbo | Registered: Jun 2008
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posted
I believe there is a "lyme" CD 57 that is different than another type of CD 57 test (or used in correlation with... I'm not certain).
I'm sure someone else can chime in with more info on this. The lyme CD 57, in the studies I have read, has yet to be identified with anything else other than lyme.
They have even tested HIV positive patients and all proved to have normal levels on this test. Only lyme patients had low levels.
LostGurl, I'm not sure where you read that CD 57 is an indicator of low immune function in general? I would be interested to read this.
Now low overall NK cell levels, yes--that can definitely be linked to weakened immune system or other viruses. I have never read this about CD 57 though, so would like to have further information on this.
That's not to say that you shouldn't be tested for other infections. I was also infected with EBV and HHV6, so you'll want to make sure you know all that you're dealing with.
And CD 57 increase may or may not be linked to progress. In my opinion, it is, but others don't necessarily think so. It's still unproven.
Also, Maitake and Reishi are supposed to help increase immune function and NK cells. But I'm still fighting this stuff, so who knows... I have yet to find my cure.
Will be shouting it from the mountaintops when I do!
Here... here's a good link I just pulled up to give more info on CD 57:
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
quote:Originally posted by lostgurl: A cd57 is an indicator of many diseases where one has little immune system to fight- in general..
I'm not convinced this is true. Most of the info. I've seen suggests it's limited to lyme infection, perhaps post-operative complications and perhaps some cancers.
Like the other poster said, if you have literature to support this I'd love to see it.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hoosiers51
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posted
I once read notes from a lecture given by a Chronic Fatigue Syndrome MD, and he was saying that CD57 could be low from a few infections that would be Th1 mediated....like some viruses, and only a very few select bacteria (intercellular ones I think? can't remember), and cancers.
Who knows if it's true or not. That doesn't count as "literature"....like I said, it was just notes from his presentation that were transcribed onto the internet for people to read.
Posts: 4590 | From Midwest | Registered: Jun 2008
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disturbedme
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posted
Great, let's scare the people here who doubt their lyme diagnosis in the first place and now they'll think they have cancer instead or some other infection. Aughhhhhhhhhhhh.
My CD57 is very low. It started out at 18 and then after starting treatment it fell to 9 and has been at 9 ever since.
I've only heard that lyme can cause a person's CD57 to lower. I've watched a video of it, but now I can't remember by who, etc. Anyway, I know a lot of people have different opinions on this test.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I'm starting to hope there is not cancer i'm missing. Scary. I didn't know it was low with that Dx too.
I have no idea what lab tests (blood) even are specific for cancer. if your CBC is OK, are you fine?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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disturbedme
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posted
Seek - I don't think we'll ever know for sure if the CD57 is just affected by lyme or something else. I don't know if we know FOR SURE that cancer affects the numbers of it or not. And I wouldn't jump to that conclusion just because a few people "think" that. You know? I think all these tests have so many variables and someone always finds another reason for a band or a test result to be a certain number, etc., and it's not necessarily true or they have no way of proving it.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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seekhelp
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posted
Ironically, everything i read says the CD-57 score is HIGH with cancer.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Lymeorsomething
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posted
I think I may have seen a reference to cancer and low CD-57 in a medical textbook...I'll try to find it.
Keep in mind~~you would have probably developed more tangible symptoms with cancer by now as opposed to the irritatingly non-specific variety that go along with lyme. So I think most of us can rule out the cancer possibility.
Seek, there is an array of cancer marker tests you can run but they are not always reliable.
Then if you have tons of extra cash around, there is always the full body scan
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Yikes! Now I don't know what to think, but I do feel very supported by the fact that I'm not alone in this confusion. And, I'm so sorry that we all have to deal with this anxiety provoking "stuff" in addition to the rest of it. We need our energy to heal for goodness sake:)!
I see my doctor this week and want to leave no stone unturned.
This is what I need help with and maybe it'll help others as well. What testing should I request? Like I said, I've had the obvious co-infection testing--plus Mycoplasma.
I've had stool testing and am being treated for imbalances, issues there. And, I have to ask for Systemic Candida retest-ing. And, I do have LOSTGURL'S list of recommendations.
Are there others that might be as important, more important? Does anyone know what the inflammation markers are and what tests to do for overall immune function?
These are the ones that I know of but, there must be others:I Ehrlichiosis, Lupus, ANA, ALS, Rheumatoid Arthritis, now Cancer (Yikes, that did scare me), EBV, HIV(although I'm not in any risk groups, and married, etc), MS, Chronic Fatigue(I think it's Cd-56), That's all I can remember now...
Have a nice weekend everyone!
Posts: 23 | From limbo | Registered: Jun 2008
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posted
Thanks for the information, Stefan. I'll follow up on your virus suggestions including the hepatitis issues--interesting with all the detox going on through the liver and all.
Do you know how I might get a translation of the German document that you cited?
Posts: 23 | From limbo | Registered: Jun 2008
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Lymeorsomething
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posted
The info. is still conflicting as Stricker's original study found that some 83% of AIDS patients (22 total HIV patients in study) had a normal CD57 count. So it looks like there are many variables at work...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
So, with the Western Blots and CD-57's so inconclusive and how we feel not consistent either. How do we chart progress? Know that we're in the right treatment? Know if a symptom is a Herx or a sign that the meds aren't working or yet another infection that the meds and our immune systems cannot fight/
This is scary--I've now added cancer, HIV, and all of the hepatitis testing to my list to ask about. Does anyone know if there are there other illnesses or lyme/immune markers that I should look at?
Thanks!
Posts: 23 | From limbo | Registered: Jun 2008
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Lymeorsomething
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posted
It is hard, Wanna. In a collective sense though, you can start to build strong evidence for lyme if you were to say have a low CD-57, suggestive bands on a western blot (Igenex), and symptoms within the realm of lyme manifestation. All of these things help establish the diagnosis.
Even with all these, I still get somewhat skeptical. It's natural. Sometimes you just have to go all in and treat for a longtime and hope things work out.
Cancer does not typically present with an array of nonspecifc symptoms as far as I know. Maybe someone else could chime in.
You may want to run a viral panel too...that checks for EBV, HHV-6, etc....although many LLMDs won't treat those, and I don't really blame them as they are common viruses that may go dormant again if lyme is controlled.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Thanks, Lyme or something. Your screen name fits my line of questioning! I like your answer as it got me thinking and you're very supportive and caring. Thank you.
I will ask for the viral panel and make sure it's not the other similar illnesses that I haven't been tested for--Lupus, etc. And, then see where I get in treatment. The fact that I get worse with more intense ABX treatment and that my Herxes are showing Lyme, Bart and Babesia symptoms has me thinking that I may be testing false negative all around.
I keep hearing I'd be losing lot's of weight if I had cancer and that's not the case, and I don't fit any risk groups for HIV. But, I might as well get tested for everything that the doctor will order.
Take care. I hope your name changes to healthyandeverything:)!
Posts: 23 | From limbo | Registered: Jun 2008
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posted
"I keep hearing I'd be losing lot's of weight if I had cancer and that's not the case"
Not always the case, really depends on the type of cancer. The husband of a lady I work with had stage 4 throat cancer, and he had weight gain not weight loss. With other cancers such as stomach cancer you will get weight loss but at its final stages. Usually, people don't get diagnosised until the final stages and symptoms present. Hence the name silent killer.
I went to my LLMD with a borderline low cd57 test. He claims the cd57 is a worthless waste of time. He claims its not specific to Lyme. He sees the low scores in people with cancer, tb, hep, malnutrition and gi disorders, and other viral infections. He also told me its not an accurate indicator of how people are feeling. He says many people with low scores are doing and feeling much better than some people with high scores.
Posts: 649 | From United States | Registered: Dec 2003
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posted
Yikes. I'll check all this out and appreciate knowing the facts from your LLMD. Nnow I'm more scared than ever:(!
Posts: 23 | From limbo | Registered: Jun 2008
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pamoisondelune
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Member # 11846
posted
I just tested with IgG and IgM low.
It could be candida?; i've had worse GI candida this month.
Worried that it might have been caused by Plaquenil, which i took for 2 years+ total off and on. Is that permanent, or restorable?
For people treating VIRUSES, by the way, LOMATIUM worked for me and is a lot cheaper than antiviral drugs. It apparently wiped out my Herpes simplex I(One) lip sores permanently.
Posts: 1226 | From USA | Registered: May 2007
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posted
Yes, I was tested positive with systemic candida three years ago and treating it herbally and with Diflucan on and off, now taking 200mg up to twice a day on alternating days with three heavy hitting ABX. I need to be retested..
Have you had stool anaylisis done? This was helpful to me in the past for diagnosis and treatment?
I'll keep in mind LOMATIUM--do you have more info on it?
Hope you feel better!
Posts: 23 | From limbo | Registered: Jun 2008
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pamoisondelune
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LOMATIUM is an antiviral herb in the parsley family growing in the dry Western plains.
It saved the Washoe Indian tribe during the 1918 flu pandemic.
I've bought 3 different brands of extract from the internet, ;i don't remember any brand names, i just googled.
Stephen Buhner says it is a strong herbal, not for long-term use. He uses it for acute infections for about a month.
I took it for about a year, 1/4 tsp or 30 drops once or twice a day for a year. That was before i knew Buhner says not for long-term use.
It did seemingly wipe out completely my Herpes simplex I lip sores. I think that's remarkable because i hadn't heard of anything that completely eradicates this virus.
-from pamois.
Posts: 1226 | From USA | Registered: May 2007
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gemofnj
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posted
Wanna.. sorry to hear you are so frustrated. I am quite confused as well regarding the significance of the CD 57 test.
Early into treatment my CD 57 was a 45. I took abx for about 8 months or so. (my dr. says this was a short treatment)
I have been free from abx for approx. 3+ months and my count is current still a 45!
According to what I have read and was told, my CD57 indicates I still have lyme, however, all of my symptoms have disappeared, so I am not sure what to think.
Perhaps a relapse is in my future or it is a viral infection as discussed on this thread.
I too also share your concerns.
Here is a link that was posted recently by very informed lyme doctor. His notes are very interesting but a little hard to follow.
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Gem, can you pm me the contact info of your LLMD...I'm LLMD shopping again
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
wannabewell--- i can translate the german article for you. If it's very long, maybe only pieces; but i just took a glance at it--- seems to be a power point--- not long?
PS i just looked at page 27 and other parts. There's nothing there that you can't find in English. It's not necessary at all to translate it.
---from pamois. (= pas moi)
[ 03-17-2009, 06:45 AM: Message edited by: pamoisondelune ]
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