dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I recently tested high on ACE (angiotensin converting enzyme)test. From what I have read, this test is a marker for sarcoidosis (an autoimmune disease that can affect any or all organs as well as the nervous system.)
I did a search on sarcoidosis on Lymenet and found several threads on this indicating a correlation between Lyme and sarcoidosis. Has anyone else here had high ACE testing?
Do you test positive for any other markers as well? I also show ANA results indicative of Lupus. That is another autoimmune disease that has a correlation with Lyme. UGH.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: "ANA results indicative of Lupus"
Many have been misdiagnosed as having lupus when lyme was the underlying cause of the situation. I was one of those who was told I had lupus but there was nothing I could do for it, anyway, at the stage I was at (at that point in time, 1983 - It would not be until 1997 when lyme & coinfections were finally diagnosed).
Many who have lyme and positive ANA tests find that after adequate treatment for lyme, the ANA levels come back to normal.
ANA is not an adequate determination of any "autoimmune" condition, IMO. It can be a sign that something is definitely out of kilter but not for the reasons that rheumatologists or the drug industry would have us think. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Thanks, Keebler. I agree. I think these test results all support that something is out of kilter.
It's just perplexing that they would be high now, for the first time - following some aggressive treatment. Maybe it stirred things up.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Even if, say, lyme and all coinfections are adequately treated and you are into remission (which it does not yet sound like), but even if . . . I think it can take a very long time for the immune system to calm - even after treatment, it's still got a lot of healing to do. A lot of recalibration.
But it also may be indication that treatment is not yet where desired?
I know you may not have access to a good LLMD or LL ND but if you might, they could best sort this out. A LL ND would also know various things to help with immune support such as medicinal mushrooms, etc.
Also assess other things that may be a body burden such as vinyl in your home (a vinyl shower curtain) . . . fluffy textiles . . . scents . . . chemical exposure (even driving too close to vehicles in traffic) . . . noise . . . .
I don't mean to stir up disappointment for you in that, "bleepers, still not well yet?!" but just don't want you automatically believing there is some autoimmune conspiracy against you. There are some times when it goes wrong, I know, but where stealth infections are involved, I'd sure look there first.
I just found this for you, Jordana posted this recently - look at that date, though, it's been hidden:
Borrelia burgdorferi infection may be the cause of sarcoidosis. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- However . . . if you can get a diagnosis of an "autoimmune" condition and IF certain Rx for that might be of some help in the foundation of this -- not just mask symptoms -- there could be some ways such a dx could work for you as you
would still address the overall with your LLMD or LL ND.
Of course, often steroids or "biologics" are often given for "autoimmune" dx and those can be terribly dangerous for someone with lyme / chronic stealth infections.
If you pursue tx with a typical MD or rheumologist, and you will only agree to certain Rx but not others, it could cause you some problems, though.
And, even with insurance, some of the Rx for "autoimmune" dx are just too the moon, absolutely not affordable so there may be no point in pursuing that route. Just things to consider.
Research any Rx for stress on liver, kidneys, and EARS.
Google: Rx name(s), Bauman, ototoxic
and get the 3rd edition of "Ototoxic Drugs" by Neil Bauman. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Keebler, that is a good point about it taking a long time for the immune system to calm. I had seen this study posted by Jordana, also. Thank you for bringing it back to my attention. It was very interesting!
That is why I was puzzled that my ACE result would be high after having just been on 2 months of the same dose of rocephin - just like in that study!
I currently am seeing a very well respected LLMD (with a huge waiting list) and I have seen many other LLMD's, LLNP's and LLND's over the past 4+ years. I am a tough patient!
Everybody has worked so hard to try to help me get better. I have an unusual case that doesn't fit the profile that you often see here.
Because this illness has caused major damage to my 8th cranial nerve, I purchased Neil Bauman's book on Ototoxic Drugs (which I am sure must make you happy!) I know you also have suffered with similar damage. I am sorry.
I tried the herbal route and now feel I must try to treat more aggressively again, because I seem to be worsening and IV ABX seemed to help a bit, but I had to stop due to complications. So now I am re-exploring my options while trying to also figure out what these test results might mean.
Thanks for your suggestions and if I learn anything new about this, I will post here.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
My ACE was once 58; normal is less than 50, I think. And I don't have sarcoidosis.
I'm pretty sure my elevated ACE is related to the Lyme and co.
Posts: 65 | From Montreal | Registered: Nov 2011
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Yes geronimog. One of the docs I see recently told me that she often sees this level high in patients suffering from chronic lyme and co. I was relieved to learn this.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
My ACE level is over 400. The lowest reading was 370 something. It's the highest any doctor has ever seen around here, and they don't know what to make of it. I don't even bother to get it tested anymore. I figure it's another Lyme thing since I've read that Lyme can increase ACE levels.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
LymeNotLymes do you have any inflammation in your lungs that you are aware of? I am pretty sure that is where most cases of sarcoidosis hit people (in addition to many other places).
When I had an x-ray of my lungs last year due to chest pain from shoveling in that horrid winter of 2015, the report showed 'mildly hyperinflated lungs'. But no follow up testing was ever done. Recent x-rays were normal.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic