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CD57?
All of my labs are normal except for this CD57 test, which clocked in at a 5. Is this diagnostic for chronic Lyme, or are there other potential causes for a low CD57?
All the more reason to find a Lyme specialist -- clueless docs tend to stay clueless, in my experience. Lyme is unlike any other ailment I know in that way, except maybe the early years of AIDS. Unlike those AIDS patients, Lymies can just muddle along for years not getting better and not necessarily getting worse, and the docs just shrug. All the more reason to take matters into your own hands and find an LLMD, the sooner the better. Don't wait.
Thanks Jackie!
It takes medication to assist in my brain function. I'd probably be a lost soul without it. It also takes a lot of time for the thought process. I'd be completely on my own if it wasn't for the net and this community- so very helpful. Yeah I wish I knew a pharmaceutical chemist that could break things down. Unfortunately, I can't rely on DRs. So far, it seems I know more than they do. They have to look things up too. They just don't have the time to go in deep like I do. Then when labs come back normal, what can they say? They don't know how I feel, they just know what I tell them. There are flaws in labs, like Dr B says "clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels." Drs would never think of that! And what about my b12 and folate levels? That's not in active form. But I'm not trying to knock Drs! Way too many people go to Drs for nonsense anymore, so when there's no proof what can they do?
It takes medication to assist in my brain function. I'd probably be a lost soul without it. It also takes a lot of time for the thought process. I'd be completely on my own if it wasn't for the net and this community- so very helpful. Yeah I wish I knew a pharmaceutical chemist that could break things down. Unfortunately, I can't rely on DRs. So far, it seems I know more than they do. They have to look things up too. They just don't have the time to go in deep like I do. Then when labs come back normal, what can they say? They don't know how I feel, they just know what I tell them. There are flaws in labs, like Dr B says "clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels." Drs would never think of that! And what about my b12 and folate levels? That's not in active form. But I'm not trying to knock Drs! Way too many people go to Drs for nonsense anymore, so when there's no proof what can they do?
I just looked up 'Spiro' on the "rxlist" website, and the first thing up was a list of 50 (I counted them) possible side effects of that medication, along with shorter lists of other issues.
Then I googled -- spironolactone pharmacological action -- and got some very interesting stuff. Even drugs [dot] com, which can put me to sleep by being too elementary, has quite a write up on Spiro. It looks like the docs know a few things that Spiro does and are unclear on what else it can do. It may be that the med is so new and has so many effects in ways known and unknown that the docs just don't know what to anticipate, esp in the face of a complex infection like Lyme, which has its own bag of tricks. If you could get the ear of a knowledgeable pharmaceutical chemist, you might get quite a tutorial.
When I did the google search, I started typing in the search box 'spironolactone pharma...' and when I got just that far, about ten possible (and interesting) search terms came up that start with those words/letters. If you know any pharmceutical-type chemists who are familiar with Spiro, I bet you could get quite the tutorial. To mix that with the mess that is Lyme -- well, exciting things may happen.
There's an interesting write up at -- drugs [dot] com / pro / spironolactone [dot] html ---------
My best guess is that the scientific types are still figuring it out. Sorry not to be of more help ... keep us posted!
Oh and about sarcoidosis ... that's one strange muther of an illness, isn't it. I know someone who was diagnosed with it about 25-30 years ago, but I never had the feeling the docs had a handle on that situation ... kind of like Lyme is now. And I'm not so sure they've actually got sarcoid figured out even yet, either, tho I don't follow the literature.
The good news for you is that your brain is still functioning. Sometimes Lyme is not so kind to mental function for a while ... been there. You sound focussed and alert, which is all to the good. Let us know how we can help ... we've been through the ups and downs and sideways maneuvers of Lyme, and if we have any data useful to you, let us know. It's how we inflict revenge on the bacteria.
Oh, and you might think about what type of MD would be best able to unravel what's going on in your body. Some docs are more able to stretch into areas they don't commonly practice in, and that is a good quality in a Lyme doc, because of the diverse and protean symptoms that can arise. It's not for nothing that Lyme is first cousin to syphilis. My own LLMD was an immunologist by training, and that gave the doc a viewpoint very helpful in strategizing about what Lyme is up to in the human body.
Then I googled -- spironolactone pharmacological action -- and got some very interesting stuff. Even drugs [dot] com, which can put me to sleep by being too elementary, has quite a write up on Spiro. It looks like the docs know a few things that Spiro does and are unclear on what else it can do. It may be that the med is so new and has so many effects in ways known and unknown that the docs just don't know what to anticipate, esp in the face of a complex infection like Lyme, which has its own bag of tricks. If you could get the ear of a knowledgeable pharmaceutical chemist, you might get quite a tutorial.
When I did the google search, I started typing in the search box 'spironolactone pharma...' and when I got just that far, about ten possible (and interesting) search terms came up that start with those words/letters. If you know any pharmceutical-type chemists who are familiar with Spiro, I bet you could get quite the tutorial. To mix that with the mess that is Lyme -- well, exciting things may happen.
There's an interesting write up at -- drugs [dot] com / pro / spironolactone [dot] html ---------
My best guess is that the scientific types are still figuring it out. Sorry not to be of more help ... keep us posted!
Oh and about sarcoidosis ... that's one strange muther of an illness, isn't it. I know someone who was diagnosed with it about 25-30 years ago, but I never had the feeling the docs had a handle on that situation ... kind of like Lyme is now. And I'm not so sure they've actually got sarcoid figured out even yet, either, tho I don't follow the literature.
The good news for you is that your brain is still functioning. Sometimes Lyme is not so kind to mental function for a while ... been there. You sound focussed and alert, which is all to the good. Let us know how we can help ... we've been through the ups and downs and sideways maneuvers of Lyme, and if we have any data useful to you, let us know. It's how we inflict revenge on the bacteria.
Oh, and you might think about what type of MD would be best able to unravel what's going on in your body. Some docs are more able to stretch into areas they don't commonly practice in, and that is a good quality in a Lyme doc, because of the diverse and protean symptoms that can arise. It's not for nothing that Lyme is first cousin to syphilis. My own LLMD was an immunologist by training, and that gave the doc a viewpoint very helpful in strategizing about what Lyme is up to in the human body.
Wow, thanks Jackie!! It helps to have another similar point of view! I have to dig deep for some of the information I come up with, so I wouldn't expect a Dr or pharmacist to know. Some things are well known and then there are things that are not, but that doesn't mean a problem doesn't exist. I could ask a pharmacist if Spiro is immunosuppressive, and he'd most likely say no. Maybe I will, just to see. The pharmacists I have came accross don't seem people oriented and I'm not either, so it doesn't make for a decent conversation- especially with my Lyme related issues. So I'll try to ask simple questions.
And no cave Spiro is not a chemotherapy drug, it was Isotretinoin (Accutane). It's actually a retinoid, but it's sometimes used for chemotherapy. I added an extremely low, undocumented dose of Isotretinoin in addition to 100mgs Spiro that I had already been taking for several months. Yes, they were both basically for acne. I'm my own Dr, so when something goes wrong I can only blame myself. I only got a Dr involved because Lyme/co infections are complicated enough.
I actually found a thread of Drs prescribing these two medications together. It wasn't one of those things that was easy to find. And it didn't mention much. I couldn't find any straightforward interactions, although I did find an interaction between Isotretinoin and Corticosteroid medicines. Would you all agree that Spiro doesn't seem to fit that category?
Yes cave, I did see where it noted Spiro as being an immunosuppressant in sarcoidosis. That's what may have got me thinking in the first place. I thought the same thing as you! I've just been trying so hard to find more evidence and I'm not having much luck. I'm not even finding evidence to suggest Isotretinoin is immunosuppressive, I guess I just assumed that it was. I found one study that suggest that Spiro was immunosuppressive in .05% of those in the study. So perhaps it is, but I was okay on Spiro alone. My labs right after both medications didn't indicate any of the abnormalities sometimes found with either of those medications. Liver, sodium, potassium, triglycerides, wbc, rbc, ect... everything was fine.
I haven't talked to the Dr yet about my CD57 count, so I'm not sure what to expect. IDK if these medications together could lower my CD57 that low or not. I can't say I was feeling the best when I began the spiro.
I think I might do that mojogal.
Thank you for all your help everyone!
.
And no cave Spiro is not a chemotherapy drug, it was Isotretinoin (Accutane). It's actually a retinoid, but it's sometimes used for chemotherapy. I added an extremely low, undocumented dose of Isotretinoin in addition to 100mgs Spiro that I had already been taking for several months. Yes, they were both basically for acne. I'm my own Dr, so when something goes wrong I can only blame myself. I only got a Dr involved because Lyme/co infections are complicated enough.
I actually found a thread of Drs prescribing these two medications together. It wasn't one of those things that was easy to find. And it didn't mention much. I couldn't find any straightforward interactions, although I did find an interaction between Isotretinoin and Corticosteroid medicines. Would you all agree that Spiro doesn't seem to fit that category?
Yes cave, I did see where it noted Spiro as being an immunosuppressant in sarcoidosis. That's what may have got me thinking in the first place. I thought the same thing as you! I've just been trying so hard to find more evidence and I'm not having much luck. I'm not even finding evidence to suggest Isotretinoin is immunosuppressive, I guess I just assumed that it was. I found one study that suggest that Spiro was immunosuppressive in .05% of those in the study. So perhaps it is, but I was okay on Spiro alone. My labs right after both medications didn't indicate any of the abnormalities sometimes found with either of those medications. Liver, sodium, potassium, triglycerides, wbc, rbc, ect... everything was fine.
I haven't talked to the Dr yet about my CD57 count, so I'm not sure what to expect. IDK if these medications together could lower my CD57 that low or not. I can't say I was feeling the best when I began the spiro.
I think I might do that mojogal.
Thank you for all your help everyone!
.
You said:
" I was basically on a chemotherapy drug not too long ago for acne (before Lyme was even considered). I thought I could take a small enough dose, and I'd be fine. At the same time, I was on a steroid. So my immune system basically got bombarded with all of this medication."
"The problem here is when I was taking this "synthetic, steroidal antimineralocorticoid" I can't say I felt much worse.... The problem came when I added this chemotherapy drug for acne. "
Could you clarify something for me? Your first sentence seems to indicate that you were on a 'chemotherapy drug' for acne. Was that spironolactone? If not, would you mind sharing the name of that drug with us?
Your second sentence said you were taking spironolactone (synthetic, steroidal antimineralocorticoid) and then you added a 'chemotherapy drug'.
Spironolactone is given for acne in many cases. So were you given two different meds for acne?
I'm just trying to understand what was given and when. Choose to ignore my questions, if you wish.
BTW spironolactone is noted as being an immunosuppressant in sarcoidosis. I haven't followed that thread to find out if it's ONLY disease ----seems that if it's in one, it might be in others. But I'm not a doctor.
" I was basically on a chemotherapy drug not too long ago for acne (before Lyme was even considered). I thought I could take a small enough dose, and I'd be fine. At the same time, I was on a steroid. So my immune system basically got bombarded with all of this medication."
"The problem here is when I was taking this "synthetic, steroidal antimineralocorticoid" I can't say I felt much worse.... The problem came when I added this chemotherapy drug for acne. "
Could you clarify something for me? Your first sentence seems to indicate that you were on a 'chemotherapy drug' for acne. Was that spironolactone? If not, would you mind sharing the name of that drug with us?
Your second sentence said you were taking spironolactone (synthetic, steroidal antimineralocorticoid) and then you added a 'chemotherapy drug'.
Spironolactone is given for acne in many cases. So were you given two different meds for acne?
I'm just trying to understand what was given and when. Choose to ignore my questions, if you wish.
BTW spironolactone is noted as being an immunosuppressant in sarcoidosis. I haven't followed that thread to find out if it's ONLY disease ----seems that if it's in one, it might be in others. But I'm not a doctor.
Yes, genetic genie explains what you can do depending on which mutation you have. 23andme does other mutations as well. I was shocked to see how many I have.
It requires further blood tests to see if you really have what they say you could have from it. I haven't done my blood tests yet but will soon.
If they come back positive, there are medications to take.
Good luck.
It requires further blood tests to see if you really have what they say you could have from it. I haven't done my blood tests yet but will soon.
If they come back positive, there are medications to take.
Good luck.
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