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I see my rheumy next week. I've been on AP for 1.5 years and am doing well. She will most likely order a blood test for liver and kidney function to make sure I am tolerating the minocycline. I have been seeing her for years, and, since diagnosis, she has never ordered RF, CCP, CRP or other blood tests. Many of you seem to get them routinely and, frankly, I would be very interested in following the numbers. Do you feel the tests are necessary, and if so, how could I make a case to my rheumy?
Sierra
Hi Sierra,
I'm sort of amazed that rheumy never ordered RF, anti-CCP or cardio-CRP tests for you. How did this doc ever make a dx for you…just on symptoms alone?
You're doing really well, so you wouldn't need to be concerned about the results. My first thought is that you could say you'd just like to get a comprehensive baseline reading off all your inflammation markers now that you're feeling so well and for the purpose of future monitoring and comparison.
I'm still working on my journey back, so these tests give my LLMD and me a good picture of where I'm at in progress. RF tends to be the most reflective of how I'm actually feeling in present time, whereas anti-CCP, though it's supposed to be more confirmatory of RA, tends to be less responsive to progress…or slower to react to progress.
I gather a lot of rheumies don't bother to monitor these markers, as they don't change much on the standard meds. I think it was Joe sent in a study that showed that these numbers decreased with the biologics, but generally speaking, I don't think this happens with the “masking” drugs. Your rheumy might have had a nice little shock if they'd done the tests when you were bad and compare them to now!
Great to hear you're doing so well still, Sierra!
Peace, Maz
Hi Sierra,
After the initial testing, my rheumy didn't test again at the 6 mth or the 1 yr follow up. Upon physical exam, he declared me nearly dormant. I requested a bloodtest and he obliged. The bloodwork concurred. I had dropped from a high moderate to a weak positive.
Now, dropping from weak positive to negative seems to be a bit more challenging.
At my first visit, the rheumy explained that the bloodwork alone is not sufficient to identify RA. Physical exam is his preferred source. Perhaps your doctor feels the same way.
Susan
Hi Maz,
I'm sorry if my post was unclear. These tests were done prior to diagnosis but have never been repeated since. I had a positive RF and anti-CCP.
Sierra
[user=128]Sierra[/user] wrote:
I'm sorry if my post was unclear. These tests were done prior to diagnosis but have never been repeated since. I had a positive RF and anti-CCP.
Oh, no worries…was just a bit weirded out that this might be a possibility. LOL Hope your doc aquiesces and does the tests for you. Don't see why not…I get them done every 4 to 8 weeks no problem – Anthem BC/BS hasn't queried anything yet and they're great for monitoring your progress. I guess, as Susan says, some docs just prefer to monitor what they're physically seeing in front of them. Not a bad thing, at all…just found the tests to be good for my morale in the long term, as those numbers kept dropping. My doc uses the numbers to gauge whether it's time to change up my protocol of not, too – like when I'm stalling out – so it may be a pecularity of LLMDs to test frequently…at least it's my doc's peculiarity. 😉
Peace, Maz
I have to request my Anti-CCP and RF to be tested every time I see my Doc too. He thinks it is pretty irrelevant – but not for me. My Anti-CCP dropped from over 100 to 40 after 6 months and down to 11 after another 4 months! My RF is slowly creeping down too and was 20.6 at my last testing!
My next Doc- appointment is on March 11th and I will request my tests again to be made as well. I am really curious how they will turn up,as I am doing really great.
The steady _going down_ in Antibodies may not mean a lot to my Doc but it sure gives me a tremendous boost in confidence to be able to beat it!
……and that is what counts for me!!!
My own feeling is that 'the probable' reason many docs don't repeatedly retest is that they aren't into infectious theory. Circulating antibodies in any other disease are indicative of degree of disease status.
However, if the doc believes that the body is just attacking itself and that we have an incurable, chronic metabolic disorder, this wouldn't bear much relevance, as it is probably just surmised that the drugs we are taking are masking or blocking antibody action.
Roserd, that's fabulous news. Thanks for sharing your great progress! Do hope you'll soon be adding your testimonial to the others on the site!
Peace, Maz
So would that say that ” if the autoantibodies go neg, that disease acctivity is not occuring at the time” ? Is it possible for these antibodies to go neg, but the disease process is still raging inside?
Hi Casey…good question, to which I don't have the answer. Seems that some people who present with RA are seronegative. I don't know much about the other rheumatoid dx's in these cases.
In the case of people dx'd with RA who are seronegative, however – ie. dx'd on symptomology alone – it is believed that seronegativity probably means a greater likelihood of a more transient reactive arthritis, a better prognosis, less likelihood of joint damage and generally a quicker response to abx therapy. Similar to people who have Lyme arthritis, which is a reactive arthritis, and are seronegative for RA, but present with RA symptoms. Perhaps their genes express differently?
All I know is that in the case of seropositive RA, a reduction of circulating auto-antibodies seems to go hand in hand with advancing remission, just as elevations seem to indicate progression.
What have you learned about Lupus? Is it possible to be seronegative and still have Lupus? In those cases, like RA, might it also mean that prognosis is good?
Peace, Maz
Well Maz, thats what i thought.
I know lupus is supposed to be diagnosed with a pos ANA, as well as a pos dsDNA. I know there is supposed to be a pattern (speckled , rim etc) and titre 1:10, 1:20 going up doubling each time , is also used . Apparently , you also need 4 out of 11 sypmtoms on a specific list that . I thought that as long as the titre kept rising , disease is getting worse. That being said ,a very small % of the lupus population may have 4 out of the 11 symptoms and no autoantibodies.
I know many on the rheumatic.org site that had lupus had high titres, patterns and pos autoantibodies. as AP treatment progressed and they got better, those antibodies went down.
Having said that, my mothers disease (not on AP) with lupus mostly, has autoantibodies that keep going up. She is very sick and i have followed some of her paperwork that has showed all pos numbers with a titre going from 1:640 to 1:2560 and on from there.
Now , others with different rheumatic disease and some severe have showed no autoantibodies of any kind. Myself, i sat at a pos ANA, pos RNP (which shows mixed connective tissue disease, in other words i think it may show that when the disease hasnt turned specific yet such as turning to lupus, sclero, dermatomyositis or RA.
In the end , i think these bacteria are so capable of altering things within the body , that all these diseases overlap each other in some way in some form.
When my son went from a low pos lupus (pos ANA and low dsDNA) level to all neg, i was so excited but i am now hesitant with feeling good about that for a few reasons1. people with no autoantibodies have can have disease 2. he is myco positive 3. it runs in the family 4. this vit D thing (it is still high)
maybe he is neg now because the antibodies arent circulating??? I dont know . I thought they would automatically continue circulating once they are there but maybe remission does that. MP says” indeed, ANA is now neg, gluten free diet is palliating but disease progression is occurring due to high 1-25 D”
This is a question i would loved to have asked DR. Brown as he worked with alot of lupus patients.He followed them close so i presume he watched these autoantiboies. My thought would be that they as continued to decline and the patient felt good, then thats steps toward remission. Many lupus patients on the other sites have this ocurring and they are better. Marshall sees the opposite.
Now if you take lyme and it can mimic lupus, well there is a whole new ball game as to how disease can manifest. these bacteria are very good at what they set out to do and they do it affecting everyone differently.
What is the end result to know if your heading for remission?? Does one go by decline in atoantibodies and few or less symptoms? Do they go by what marshall says with his vit D theory?
Having said the above, i have studied “pubmed” and their lupus info and other sites as well. When children are diagnosed with lupus, it is often at the beginning of puberty. Many of children already have kidney damage to some degree and some severe. Lupus is a disease of a 1000 faces and it appears it can work very silently in some. It can and has done much damage to internal organs silently before any symptoms are felt.
as i study these different diseases, they all seem to have many overlapping things in some way so now i wonder, do the autoantibodies mean anything at all???
Dont know Maz, i have never been so confused in what to think . I would have been somewhat relieved that my sons antibodies went neg after 5 months on AP. His autoantibodies were low at the start but Marshall through a loop into that because of the vit D.
So i have no idea what to think about any of it at this point!
casey
This is really old info, from 1985, when I first began to have symptoms, so I don't know how accurate it is now. I was told by my rheumy at that time that some people take years before they test positive for lupus. I had tested neg, but he wanted to me to be retested every few yrs. I have, and have never tested positive; like I said, I was given this info over 20 yrs ago, so take it with a grain of salt.
Linda,
I have heard the same . that the disease is often there before antibodies show. The question is , do they go from pos to neg , meaning is the disease progressing even though the antibodies arent showing. If so that confuses me as to how one would check any protocol working, other than by symptoms alone and maybe other blood work.
linda, what is your diagnosis?
[user=9]casey[/user] wrote:
1….When my son went from a low pos lupus (pos ANA and low dsDNA) level to all neg, i was so excited but i am now hesitant with feeling good about that for a few reasons1. people with no autoantibodies have can have disease 2. he is myco positive 3. it runs in the family 4. this vit D thing (it is still high)…
2….Now if you take lyme and it can mimic lupus, well there is a whole new ball game as to how disease can manifest. these bacteria are very good at what they set out to do and they do it affecting everyone differently….
3….What is the end result to know if your heading for remission?? Does one go by decline in atoantibodies and few or less symptoms? Do they go by what marshall says with his vit D theory? …
4….Dont know Maz, i have never been so confused in what to think . I would have been somewhat relieved that my sons antibodies went neg after 5 months on AP. His autoantibodies were low at the start but Marshall through a loop into that because of the vit D….
Trying to figure out a way to respond, bit-by-bit here, so just numbered your above comments.
1. Casey, you should definitely feel uplifted by your son's bloodwork! This shows he has made excellent progress on AP and that his prognosis is good. Does it mean he is disease-free yet? I don't know, but you've caught it early and this also adds to the probability of a good outcome.
My suspicion is that whether it be Lyme, mycoplasma or any other stealth pathogen, we are dealing with organisms that are pleomorphic and have very evolved capacities for self-preservation. They revert to L-Forms and cyst forms when under threat and this may give the 'illusion' of remission. Can any of us state with certainty that when we reach remission (asymptomatic with normal bloodwork) that we are fully cured? Probably not, because we won't know we are fully cured, having had no further relapses, until our dying day and mycos are probably never fully eradicated, anyway. However, when we reach the point of being asymptomatic and seronegative, this is a very good sign that our diseases have been responsive to treatment and that perhaps, as John McD has done (and you are now doing for your son), that it may be wise to take things a step further and just be proactive about sorting through the more complicated issues. That is, finding balance in the other markers, like Vit D. In more serious situations where there is active, debilitating disease, I personally felt it important to keep it as simple as possible and not to become overwhelmed by all the possibilities. The details are something that can be fiddled with later when one is asymptomatic or feeling strong enough to pursue those details.
2. I see your point with this and it makes good sense. Whether it be Lyme, mycos, or any other stealth pathogen, what is probably most important to recognize is that these organisms will likely never be fully eradicated in the body. And, to the immune-compromised individual with a genetic susceptibility to these infections, it is less about how the disease manifests in an individual, but more about the delivery and mode of treatment…if that makes sense. E.g. We once had a thread on the BB that argued whether Lyme was or was not a rheumatoid disease. Actually, the Lyme spirochete is not a rheumatoid disease, but then neither is mycoplasma. These are pathogens, not diseases in and of themselves. They trigger and are one component of the complex cause of rheumatoid disease in susceptible individuals and very much depends on how they express in an infected individual.
3. Bearing in mind that 'one theory' – in this case MP – will probably never be able to fit all (and it's hard to gauge who has done well on MP and who hasn't because I don't think there are any available stats on this), I think if one is asymptomatic that this is the most important thing. We all want to achieve this and it's why we're here. Once asymptomatic, some people prefer to keep life simple and not stress about future possibilities…some do well and some relapse. The latter have to go back to the drawing board and figure out the cause of the relapse. It's a very individual thing.
If you're asking if TM's theories are worth pursuing, my own personal feeling is that they are fascinating and I may well do so myself when I feel well enough to do the grunt work. For now, I just prefer to keep it simple.
Your case is much different, because as a mother of a child with a rheumatoid dx, there is the added dynamic of doing all one can possibly do to ensure the child's wellness and the ensuing guilt of being sure to cover every possible corner must be very oppressive. Ultimately, though, all you can do is what you feel called to do in your own heart, the best you know how. You also have yourself to consider and your wellness, too, which is so important to your child's wellbeing. If you are stressed, he will be stressed. Finding, balance in all this is not easy, but it can be done. My best advice is to just pace yourself in your researches and to let go and take a break when you get overwhelmed, remembering to reserve some compassion for yourself, because you are coping with managing your own health, too, as you continue to unravel the mystery for the both of you.
4. Really enjoy the the feeling of knowing your beautiful son is seronegative and asymptomatic. This is such a gift and his response has been excellent. This should provide much hope.
One thing is very clear, you are so incredibly bright and proactive, Casey, so I know if anyone can wade through the complexities of MP it will be you. Just pace yourself and try not to let the complexity overwhelm you. When I've had difficulties understanding something like this, I sometimes find later that I needed to find understanding with something else first, before I could find clarity with the original issue. Maybe take a break once in a while from your researches and just focus on the actual protocol. Your son needs you well and it will take time to see results, but I do understand your feelings of “flying blind”. It was the same for me when I started abx therapy. It took unlimited amounts of patience, trust and just learning to remain present in the moment with the limited knowledge I had.
Peace, Maz
To me our “Auto”Antibodies are only there to fix something gone wrong. I do not see them as normal antibodies to go out for the reason to kill. They are there for the reason to fix! The only question now – is to figure out what exactly caused things to not work the way they are supposed to work. I it really would be a defect gene as so many doc's believe – then why exactly am I not ill from the moment I was born? It is something that triggered it- they say. Well, yeah! My opinion is a certain pathogen tolerance in us we maybe should not have! We live with these buggers in symbiosis and learned to tolerate them until they become pathogens (too many maybe?) and make our systems go haywire.
Our body basically has no clue what happened and is just capable of trying to fix the ongoing damage. That's what I believe! As we help getting rid of what plagues us our body is finally able to get on top of things and fixed stays fixed ( showing the drop in antibodies) and it finally can catch up- so we improve! People without the classic antibodies- I am sure they have others not discovered yet! Anti CCP test is not very old either! RF is in other infections as well—Helllllooooooo!
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