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High CD57 levels with Lyme
My son was diagnosed with Lyme about 15 months ago. Missed the initial "tick bite", so he might have been infected 6 upto 24 months prior to the test. He also tested positive on Eppstein Barr. AB for 4 weeks; no real improvement. Another treatment AB for 4 weeks; slight improvement but really bad health as of april 2014. Blood results: Lyme & co-infection Mycoplasma - eliminated.
Last Friday his CD57 results came back: 209 ! First check; so no reference points in the past. The only "medication" that could explain his high count would be Reishi.... I'm trying to find people with Lyme and low CD57 count in Belgium and have already found the first one (42). She will start a "trial" during 3 months in order to find out if the use of Reishi up her CD57 levels.
Anybody with Lyme who has used Reishi as part of their "treatment" ? I'm really interested in those people that had / have Lyme, use(d) Reisi and are aware of their CD57 levels
Last Friday his CD57 results came back: 209 ! First check; so no reference points in the past. The only "medication" that could explain his high count would be Reishi.... I'm trying to find people with Lyme and low CD57 count in Belgium and have already found the first one (42). She will start a "trial" during 3 months in order to find out if the use of Reishi up her CD57 levels.
Anybody with Lyme who has used Reishi as part of their "treatment" ? I'm really interested in those people that had / have Lyme, use(d) Reisi and are aware of their CD57 levels
What do you mean "after almost 3 months of AB, his IGM should be close to zero"? He doesn't have any IgM antibodies? Or??? He shouldn't have no antibodies... That wouldn't be good.
Just know that the testing for Lyme is not fool proof. He can have Lyme despite a negative result... IGenex is the best lab to use for Lyme testing.
There are also other Borrelia strains that can present with the same symptoms as Lyme. If he continues to test negative, may want to look into it. There are quite a few Borrelia strains, maybe even differ in significance depending on where you are located. It looks as if you are in another country. I know nothing about other countries. Then of course, the coinfections can present with similar symptoms as well. It IS possible to have coinfections in the absence of Lyme.
I think I've been infected for 30 years and I also took immunosuppressent medications prior to the knowledge of of Lyme. Therefore it took a lot to get my CD57 as low as it is...
Despite my CD57 being as low as it is, I still had antibodies in all areas (IgG, IgM, IgA) and my CD56 and CD4 were all fine... And I tested CDC positive for Lyme
Just know that the testing for Lyme is not fool proof. He can have Lyme despite a negative result... IGenex is the best lab to use for Lyme testing.
There are also other Borrelia strains that can present with the same symptoms as Lyme. If he continues to test negative, may want to look into it. There are quite a few Borrelia strains, maybe even differ in significance depending on where you are located. It looks as if you are in another country. I know nothing about other countries. Then of course, the coinfections can present with similar symptoms as well. It IS possible to have coinfections in the absence of Lyme.
I think I've been infected for 30 years and I also took immunosuppressent medications prior to the knowledge of of Lyme. Therefore it took a lot to get my CD57 as low as it is...
Despite my CD57 being as low as it is, I still had antibodies in all areas (IgG, IgM, IgA) and my CD56 and CD4 were all fine... And I tested CDC positive for Lyme
I'm a believer in 'whatever works', and my default mode is antibiotics. If our family went through Lyme again, I would go the route we followed before: see an LLMD, get tested for (co)infections, treat with antibiotics. That appears to me the least risky path; given that Lyme is in the same family as syphilis.
Wishing you well -- keep us posted!
Wishing you well -- keep us posted!
CD57 are just an "indicator". High CD57 levels can indicate that his body is fighting Lyme and killing any Borrelia bacteria in his body. Hence giving him that "sick feeling".
Bought him a new bike two weeks ago and after almost 15 months of not doing any sports at all he is reacting quite well: 5 days of slow training in 8 days. One day of over 100km's - slow !
He is recovering well, except his knee (artritis due to Lyme) keeps bothering him. Will take same time to find out if this will ever go away.
End of August he will have 3 exams to finish his year at school. Let's see how his brain will react to the treatment and new approach
Bought him a new bike two weeks ago and after almost 15 months of not doing any sports at all he is reacting quite well: 5 days of slow training in 8 days. One day of over 100km's - slow !
He is recovering well, except his knee (artritis due to Lyme) keeps bothering him. Will take same time to find out if this will ever go away.
End of August he will have 3 exams to finish his year at school. Let's see how his brain will react to the treatment and new approach
Hi Ephedra,
Our son has been struggling with Lyme for certainly more than 18 months now. More likely three years: we don't know when he was infected but our best "guestimate" is between 24 and 36 months ago.
Based on symptoms and his bloodresults. Considering the time of infection and seriousness of symptemsm, his CD57 should have been affected.
Our son has been struggling with Lyme for certainly more than 18 months now. More likely three years: we don't know when he was infected but our best "guestimate" is between 24 and 36 months ago.
Based on symptoms and his bloodresults. Considering the time of infection and seriousness of symptemsm, his CD57 should have been affected.
Hi Jackie,
We stopped the AB about 8 weeks after the CD57 result was taken.
It took 6 weeks for the results to come in.
We know he still has antibodies (IGG's), but after almost 3 months of AB, his IGM should be close to zero.
That's why we decided to stop the AB, but will continue Banderol / Samento / Cumanda !
We stopped the AB about 8 weeks after the CD57 result was taken.
It took 6 weeks for the results to come in.
We know he still has antibodies (IGG's), but after almost 3 months of AB, his IGM should be close to zero.
That's why we decided to stop the AB, but will continue Banderol / Samento / Cumanda !
*pasted.. I meant past... As careful as I am, I still manage to make errors...
I agree with Jackie... The CD57 count is in no way diagnostic of Lyme. Just to add- viruses can lower it too. And often enough Lyme comes with reactivated viruses... HIV actually raises it, as far as I understand. Bartonella possibly raises it, as can cancer... Mold exposure can lower it. See where I'm getting at... I'd imagine that it would be possible to have other infections in the absence of Lyme and still have a low CD57. And you could have normal CD57 counts and have Lyme.
I had my CD57 done prior to treatment, just to support the diagnoses. Lyme was later confirmed with a CDC positive western blot.. Went on to test positive for Mycoplasma pnemonia, Anaplasma, HHV6, EBV, parvo, and we suspect Bartonella and Babesia... I have mold exposure as well... I suspect a few other strains of mycoplasma... I just need to find a lab that test for them. Therefore I have quite a few infections to get mine down as low as it is.
Bottom line is that yes "CD57 is interesting, but I wouldn't hang my hat on it."
I agree with Jackie... The CD57 count is in no way diagnostic of Lyme. Just to add- viruses can lower it too. And often enough Lyme comes with reactivated viruses... HIV actually raises it, as far as I understand. Bartonella possibly raises it, as can cancer... Mold exposure can lower it. See where I'm getting at... I'd imagine that it would be possible to have other infections in the absence of Lyme and still have a low CD57. And you could have normal CD57 counts and have Lyme.
I had my CD57 done prior to treatment, just to support the diagnoses. Lyme was later confirmed with a CDC positive western blot.. Went on to test positive for Mycoplasma pnemonia, Anaplasma, HHV6, EBV, parvo, and we suspect Bartonella and Babesia... I have mold exposure as well... I suspect a few other strains of mycoplasma... I just need to find a lab that test for them. Therefore I have quite a few infections to get mine down as low as it is.
Bottom line is that yes "CD57 is interesting, but I wouldn't hang my hat on it."
gotlyme.wordpress.com/2010/12/10/cd-57/
That's a short article (albeit from 4 years ago) that discusses generally the reliability of CD57, with enough specificity to follow the arguments pro and con, but not so much as to make the head spin. The post is a few years old now, but I don't know that there have been any breakthroughs since then.
Bottom line: CD57 is interesting, but I wouldn't hang my hat on it.
Lyme is still a clinical diagnosis, using history and test results, but not a slamdunk, pregnancy-test-type-of-certainty, however nice it would be if it were.
That's a short article (albeit from 4 years ago) that discusses generally the reliability of CD57, with enough specificity to follow the arguments pro and con, but not so much as to make the head spin. The post is a few years old now, but I don't know that there have been any breakthroughs since then.
Bottom line: CD57 is interesting, but I wouldn't hang my hat on it.
Lyme is still a clinical diagnosis, using history and test results, but not a slamdunk, pregnancy-test-type-of-certainty, however nice it would be if it were.
I hear that a lot of the CD57 count. Even my LLMD says that it doesn't make since. There are roomers that die off can make it drop as well. Maybe it has something to do with genetics and how well your body handles the detoxification. Mine was 5 before treatment and 5 months into treatment, it was an 8... I'm hoping to have it checked again (just out of curiosity), now that I've just pasted into a year of treatment. It's the only thing that I have that confirms that maybe I am sick... Everything else is completely normal.
Just wondering about the restless leg syndrome that you mentioned was due to a mushroom supplement....just had it a while ago...its commonly due to low magnesium levels that r very common in lyme...do u take magnesium supplements?
Just a wild guess, but I'm thinking that CD57 seems erratic because there are several things that may affect it, and given that there are a lot of moving parts to Lyme and the co-infections, that may be why CD57 is not a nice steady indicator. Dunno.
What the heck, my CD57 count went from 31 before treatment, to 15 eight months into treatment. Just proves this crazy disease makes no sense. It's unfortunate your son doesn't feel better with that high #.
I'm under the impression that the coinfection Bartonella can potentially raise CD57 counts. I am not sure about the extract you are referring to. CD57 counts do not raise that easily according to my LLMD...
Bartonella is the only coinfection that can potentially raise CD57 counts.
I should also add that, it takes a while for CD57 counts to decrease after being infected...
Bartonella is the only coinfection that can potentially raise CD57 counts.
I should also add that, it takes a while for CD57 counts to decrease after being infected...
I was very ill with a CD-57 of 8. My point was there are folks who have a very high CD-57 but yet are very sick with Lyme.
You say above:
"My son ... is still fighting the Lyme currently present in is body. ... We have stopped the AB [antibiotics] for the time being."
If you know that your son still has Lyme bacteria present, why stop the antibiotics? It is my understanding that starting and stopping antibiotics kills off the weak bacteria, but allows the remaining bacteria to develop resistance to the antibiotics, thus resulting in drug-resistant infections which can spread through the population.
"My son ... is still fighting the Lyme currently present in is body. ... We have stopped the AB [antibiotics] for the time being."
If you know that your son still has Lyme bacteria present, why stop the antibiotics? It is my understanding that starting and stopping antibiotics kills off the weak bacteria, but allows the remaining bacteria to develop resistance to the antibiotics, thus resulting in drug-resistant infections which can spread through the population.
Hi Mojogal,
I'm not a Phd, but a father determined to get his son healthy again. At least prevent him from ending up in a wheelchair in about 15 years !
I listen to doctors, specialists and other patients but at the end of the day I make my own decisions (in consultation with our "family doctor".
If you have a CD57 of 8 and this is confirmed again: you are seriously I'll ! Lyme is certain to decrease the CD57 level; HIV is another suspect, but less documented in this case.
My son has a CD57 but still doesn't feel good. I find this normal: his body is still fighting the Lyme currently present in is body. The fight against Lyme and getting rid off dead borrelia cells will make you sick anyway. Banderol / Samento / Cumanda help hem "fight" the decease so his body is not on his own and gets some support. We have stopped the AB for the time being. If you have a rather high CD57 level but Lyme is still present and/or you are using Banderol / Samento protocol to fight Lyme, you should use a good "detox" supplement in order to get rid of the killed bacteria without too much trouble !
I partly follow Burascano's protocol, but again I prefer to use a range of products that support eacht other !
Best regards, Jos
I'm not a Phd, but a father determined to get his son healthy again. At least prevent him from ending up in a wheelchair in about 15 years !
I listen to doctors, specialists and other patients but at the end of the day I make my own decisions (in consultation with our "family doctor".
If you have a CD57 of 8 and this is confirmed again: you are seriously I'll ! Lyme is certain to decrease the CD57 level; HIV is another suspect, but less documented in this case.
My son has a CD57 but still doesn't feel good. I find this normal: his body is still fighting the Lyme currently present in is body. The fight against Lyme and getting rid off dead borrelia cells will make you sick anyway. Banderol / Samento / Cumanda help hem "fight" the decease so his body is not on his own and gets some support. We have stopped the AB for the time being. If you have a rather high CD57 level but Lyme is still present and/or you are using Banderol / Samento protocol to fight Lyme, you should use a good "detox" supplement in order to get rid of the killed bacteria without too much trouble !
I partly follow Burascano's protocol, but again I prefer to use a range of products that support eacht other !
Best regards, Jos
My cd-57 was 8 a few months ago. I thought that was about right but on another forum someone very sick had a cd-57 of 157. I read that Burascano doesn't use it anymore as a basis on how Lyme is for that reason.
Try Reishi from Organogold if you still suffer from Lyme ! I live in Europe, so no commercial interest whatsoever to give this advise ! If you like coffee, use the "black" and/or mix it with latte.
I'm convinced that the high CD57 count is thanks to this Reishi extract, which is relatively cheap in the US. After two months I had my son take the folllowing dosis:
- 2x per day warm Reishi coffee
- together with 2 capsules Mycelium; and
- 2 capsules spores
I'm not a Phd but in order to test if Reishi made the difference (in order to have a chance of full recovery) several people with Chronic Lyme and low CD57 levels are now starting to add Reishi (again: from Organo Gold).
First three weeks 2 or 3 regular portions. Then increase it by adding one capsule and then 2 capsules each ! You will notice the use of Spore's immediately, so go easy on the Spores !
In about three months my Belgian "friends" will retest their CD57 levels. If possible all in the same lab.
I'm convinced that the high CD57 count is thanks to this Reishi extract, which is relatively cheap in the US. After two months I had my son take the folllowing dosis:
- 2x per day warm Reishi coffee
- together with 2 capsules Mycelium; and
- 2 capsules spores
I'm not a Phd but in order to test if Reishi made the difference (in order to have a chance of full recovery) several people with Chronic Lyme and low CD57 levels are now starting to add Reishi (again: from Organo Gold).
First three weeks 2 or 3 regular portions. Then increase it by adding one capsule and then 2 capsules each ! You will notice the use of Spore's immediately, so go easy on the Spores !
In about three months my Belgian "friends" will retest their CD57 levels. If possible all in the same lab.
Dear Jackie,
Correct: it is part of an overall analysis. Very often they try to use CD57 levels to establish Lyme if other tests fail.... Some kind of last resort !
Talked to the a person in the lab who analyzed my son's blood and he indicated that a 209 level was extremely high; never seen in their lab in a "sick" person. Based on his symptoms levels between 30 - 60 to be expected.
Interesting part of the conversation: a consortium of Belgian, French and German labs are trying to develop a reliable test ! My contact person is involved in the development of this new test, so highly interesting whereas the detection of Lyme is concerned; not involved in the treatment.
Correct: it is part of an overall analysis. Very often they try to use CD57 levels to establish Lyme if other tests fail.... Some kind of last resort !
Talked to the a person in the lab who analyzed my son's blood and he indicated that a 209 level was extremely high; never seen in their lab in a "sick" person. Based on his symptoms levels between 30 - 60 to be expected.
Interesting part of the conversation: a consortium of Belgian, French and German labs are trying to develop a reliable test ! My contact person is involved in the development of this new test, so highly interesting whereas the detection of Lyme is concerned; not involved in the treatment.
There are others here far more knowledgeable than I about CD57, but my vague recollection from a couple of years ago is that CD57 did not turn out to be as useful as first thought in tracking Lyme status and wellness. fwiw.
Looks like you've done some good research. It could easily take up to a year for your son to be fully recovered. I've heard the good LLMDs say that they treat for 8-12 weeks after all symptoms (aside from known permanent damage) have gone. Otherwise, the rate of relapse is significant.
Samento, banderol, and cumanda are often used for Lyme. I've taken two of them myself. I did try one mushroom extract (I can't remember the name), but it gave me a miserable case of restless leg syndrome. It's funny because I've never liked mushrooms. I wonder if I have some kind of sensitivity to them, and not liking them is my body's way of saying, "Don't eat them."?
I hope your son fully recovers!
Samento, banderol, and cumanda are often used for Lyme. I've taken two of them myself. I did try one mushroom extract (I can't remember the name), but it gave me a miserable case of restless leg syndrome. It's funny because I've never liked mushrooms. I wonder if I have some kind of sensitivity to them, and not liking them is my body's way of saying, "Don't eat them."?
I hope your son fully recovers!
Thank you for your advice Ricobord. Following some serious research all over the world, I've put my son (in close coordination with his PhD of course) on:
- antibiotics (for starters three months; if necessary up to one year
- protocol consisting of Banderol / Samento / Cumanda
- Reishi
I've found some Lyme patients with the "standard" low CD57 levels, who will now try Reishi as well and will check their CD57 levels in about three months.
These were crucial links for me:
http://www.tiredoflyme.com/cd57.html#.U7_JGJSSySo
This link is in Dutch, but actually "claims" that Reishi can raise CD57 levels in Lyme patients. Of course, as part of on overall treatment.
Many people combine AB with Banderol / Samento / Cumanda, but I've not seen the combination that includes (good quality) Reishi.
Best regards,
http://www.medhelp.org/posts/Lyme-Disease/High-CD57-levels-with-Lyme/show/2237997?camp=watch_list#
Jos
- antibiotics (for starters three months; if necessary up to one year
- protocol consisting of Banderol / Samento / Cumanda
- Reishi
I've found some Lyme patients with the "standard" low CD57 levels, who will now try Reishi as well and will check their CD57 levels in about three months.
These were crucial links for me:
http://www.tiredoflyme.com/cd57.html#.U7_JGJSSySo
This link is in Dutch, but actually "claims" that Reishi can raise CD57 levels in Lyme patients. Of course, as part of on overall treatment.
Many people combine AB with Banderol / Samento / Cumanda, but I've not seen the combination that includes (good quality) Reishi.
Best regards,
http://www.medhelp.org/posts/Lyme-Disease/High-CD57-levels-with-Lyme/show/2237997?camp=watch_list#
Jos
The sad thing about Lyme Disease for patients is that the "standard" treatment of up to 4 weeks so often fails for people who've had it for a year or more.
Antibiotics quickly clear out the spirochetes in the blood, but have difficulty getting to all the bugs in the tissues. Often, after taking a course of antibiotics, antibody production drops and subsequent blood antibody tests are "negative."
This in no way means the patient is cured or that Lyme is gone. There is no test that indicates that the infection is eradicated.
While I've heard of certain mushroom supplements helping some Lyme patients, I haven't heard of Reishi and its' potential connection to the CD57 level. Sorry I can't help with that.
I encourage you to find an ILADS associated doctor who is willing to give long term antibiotics to your son until he recovers.
Antibiotics quickly clear out the spirochetes in the blood, but have difficulty getting to all the bugs in the tissues. Often, after taking a course of antibiotics, antibody production drops and subsequent blood antibody tests are "negative."
This in no way means the patient is cured or that Lyme is gone. There is no test that indicates that the infection is eradicated.
While I've heard of certain mushroom supplements helping some Lyme patients, I haven't heard of Reishi and its' potential connection to the CD57 level. Sorry I can't help with that.
I encourage you to find an ILADS associated doctor who is willing to give long term antibiotics to your son until he recovers.
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