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  • #300033
    wendi
    Participant

    I received my results yesterday from my blood and stoole tests. Doc first said the good news is: SED Rate is 1, CRP is 4 and fribrinogen is 175 which is low and ccrp is ,0.2. He ask who and when I was diagnosed with RA, as he does not think I have it. i explained that 2 years ago I was diagnosed with a RF of 469 and then again 2 months ago with a RF of 571 and ccp over 60.
    He said the bad news is my gut is a mess. I have no good bacteria, but no bad or yeast either, and scfa (short chain fatty acids are also very low. Anything to do with digestion is out of whack. Oh and Free T3 is low.
    The plan is to take 30 billion probiotics a day (I was only taking about 4 billion), pancreactin with every meal to help with digestion, l-glutimine for my intestines, and a thyroid med. No antibiotics. He said with my bloodwork and the lack of imflamation he does not want to put me on anything for the RA at this time. He said if anything changes we will go with antibiotics and to call him, otherwise take care of the gut.
    So that's where I am at this time. I will have bloodwork done next month and I guess we will go from there.

    #310844
    John McDonald
    Participant

    30 billion bacteria sounds like a meal.:P

    #310845
    Maz
    Keymaster

    [user=94]wendi[/user] wrote:

     He ask who and when I was diagnosed with RA, as he does not think I have it. i explained that 2 years ago I was diagnosed with a RF of 469 and then again 2 months ago with a RF of 571 and ccp over 60.

     

    Hi Wendi,

    Was this doc able to offer you an explanation for the positive anti-CCP and elevated RF over the past two years, if he doesn't think it's RA?

    Thanks!

    Peace, Maz

     

    #310846
    wendi
    Participant

    No, he did not say what else could be causing it, just that he has seen it happen.

    #310847
    Maz
    Keymaster

    Thanks, Wendi. That's really interesting. I'd heard of RF being elevated in quite a few conditions other than RA, but anti-CCP is said to be pretty specific for it, though one can be symptom-free for some time before any symptoms emerge (if they emerge). I guess they can get some false positives on it, too, as seems to be what's happening in your case. 😀 Fingers crossed for you that your doc is on the money with this…would love to know how often this type of thing happens and what might abrogate the results like this. Or, how many people are simply walking around with a positive anti-CCP and never get RA!  I guess we'll never know that one, as they don't test healthy people for stuff like this.

    Fantastic that you are symptom-free with these numbers! WOW! Mine were pretty similar to yours (anti-CCP above 60 and RF in the mid-500s) and I was unable to move a thing in the beginning. Mind you, my WBC was quite elevated and cardio-CRP was way up at 44….maybe that makes a difference, too, taking into account the whole picture.

    Are you going to go on AP anyway or just work on your gut issues for now?

    Peace, Maz

    #310848
    wendi
    Participant

    Maz,

    We are going to work on the gut issues right now and then the AP.  He said if I get symptoms then we will do AP sooner.  What concerns me is I have gotten ore in the past, but it has never lasted more than a week or two.  As soon as it starts again I am calling and getting a prescription.  Do you think, in your opinion, I should start sooner?  I am sure my DO would write me a prescription if the AP Doc won't.  He didn't want to do anything becausse I didn't show any kind of inflamation.  I am going to get my bloodwork done again in a couple of weeks to see if anything has changed.

     

    wendi

    #310849
    Maz
    Keymaster

    Hi Wendi….well, bearing in mind I'm just a fellow patient and this isn't a medical opinion, in your shoes and knowing what I know now, I would start AP before symptoms kick in. Doc Brown talked about this in the Road Back with a young patient he saw who was exhibiting depression and fatigue. He suspected rheumatoid the early signs of rheumatoid disease and treated her before things got out of hand. After following her progress for a time on AP, her depression and fatigue lifted and she was fine. That's not to say that everyone with fatigue and depression will inevitably develop a rheumatoid disease. Doc Brown knew what signs to look for, as a rheumatologist, and his philosophy was to avert trouble before it could progress. Personally, I like that philosophy a lot and only wish I'd had some advance warning, myself.  

    You say you've had pain for short spurts? Well, as far as I understand it, sometimes RA presents palindromically the early days (migrating, transient pain) before it settles into the joints in a more fixed way. This can go on for years and never develop into full blown RA, remaining palindromic with periods of remission.  It can creep up on you or, in the worst case scenario, explode into existence with absolutely no forewarning, as happened with me.  It really is an unknown quantity how, if or when RA will present, so my personal choice would be to follow Doc Brown's advice and get onto AP when symptoms are few, just to avert what I went through last year.

    Bearing in mind…this is just my personal opinion…maybe if you re-read The Road Back part of The New Arthritis Breakthough, it will help in your decision one way or another? 

    All the very best, Wendi!

    Peace, Maz  

     

    #310850
    Pip
    Participant

    Maz, is this you?  From the IPRS?  You're not from the IPRS, you're Palindrominc too?  I know a couple of Maz's so I'm trying to get everybody straight.

    OK, Wendi – if you suspect you might be Palindromic – RUN to the nearest AP doc and start AP yesterday.  Like Maz says, when it 'explodes' is isn't pretty.  That's what happened to me.  I went from 'normal' to on a walker at night 4 months after diagnosis and in a wheelchair in the 5th month. 

    With Palindromic, some people can stay that way without erosions for years and years.  But for some of us, we can go on to 'regular' RA quite suddenly.  That was also me. 

    The good news is that there is something in our bodies that fights like heck against these diseases.  My AP doc says its the nature of Palindromic.  So, starting sooner means you have a darn good chance at going completely medicine free. 

    Please read up on Palindromic at http://www.palindromic.org and see if this is you.  My RF at diagnosis was 353 and 706 only 5 months later.  My AP doc says that's a 'good' sign that our bodies are fighting.

    Hugs,

    Pip

    #310851
    Pip
    Participant

    Duh –

    I'm still recovering from yet another adverse reaction.  Are you on aspirin AND thyroid meds?  Because they can be contraindicated.  That could be what's causing the low T3.  My salsalate and Armour thyroid was taking me seriously hypothyroid.  My AP doc took me off both and now 2 – 2 1/2 weeks later and I can finally think (a bit) again.

    http://jama.ama-assn.org/cgi/content/abstract/267/9/1242

    http://thyroid.about.com/b/2004/01/15/can-ibuprofen-and-aspirin-affect-your-thyroid.htm

    Hugs,

    Pip

    #310852
    Maz
    Keymaster

    [user=23]Pip[/user] wrote:

    Maz, is this you?  From the IPRS?  You're not from the IPRS, you're Palindrominc too?  I know a couple of Maz's so I'm trying to get everybody straight.

     

    Hi Pip,

    Nope, think it must be a different “Maz”…hey, who stole my handle??? 😉

    The early symptoms of Lyme Disease can mimic palindromic RA in that you get migrating, transient myalgias and arthralgias with a lot of redness and heat in the joints. For me, this occured when I went into second stage Lyme (first stage imay include symptoms like general malaise, flu-like symptoms, headache,  temp, stiff neck, rash, etc). If I'd been treated with abx in the first or even second stage, I might have averted the third stage and all out flare when all the pain became fixed in every joint of my body.

    Can people with PRA have an elevated anti-CCP? Thought that test was pretty specific for RA.

    Wow, Pip…when you make a return, you come back in whirlwind! I'm having fun clicking through all your posts and should be going to bed. It's 1.15am here!

    Peace, Maz

    #310853
    Tiff
    Participant

    Hey all,

    Here is a link to a very detailed description of Palindromic Rheumatism from John's Hopkins.  Yes, PR often does have a positive anti-CCP.  This site gives a pretty clear picture of the similarities but also the differences between these two versions of arthritis.  Is it truly something different than RA?  The jury is still out.  But one can't argue that someone having suffered for years from PR and yet not gotten joint erosions is dealing with something different than RA.  And the day to day life of someone with PR is also different.  The pain is totally horrific and never symmetrical – like my neck the other day, or more recently my left hand.  It felt like someone ran over it with a car.  I am not exaggerating.  Then, poof, it is gone.  Scary, freaky… makes you start to think you are insane.

    For myself, I seem to have a completely CLASSIC version of PR – my situation is exactly  like the lady they describe, except it has become more frequent, weekly rather than monthly.  The only consistently abnormal labs I have are very slight anemia (which I think I have always been prone to), and a strong postive CCP.  My RF has never been higher than 20, and right now, after nearly 3 years of symptoms, it was 15 (where 14 is normal).  Last summer while doing so well on AP, it was 8.

    You'll note that it says PR does respond to RA drugs, but NOT AS WELL.  I wonder if that is why I am not responding well to AP.  On the other hand, I wonder if perhaps AP has kept me from becoming full blown RA because I have been on ABX for many years.

    The CCP test worries me because they seem so certain about it.  For me it keeps me constantly wondering what will happen.  How will it change?  Because, if RA means having this kind of pain only remaining for weeks and months at a time and in a symmetrical pattern (both my hands being run over by a car at once!!?), then that would not be a degenerative disease, that would shortly be fatal, at least for me.

    I think I am the only person on MP with this disease (if it is a disease).  I hope the lumper theory is right and this is just an odd variation on a Th1 disease.

    http://www.hopkins-arthritis.org/physician-corner/cme/rheumatology-rounds/palindromic_rheumround1.html

    #310854
    wendi
    Participant

    I have a high ccp too so it probably isn't pal.  Maybe though, who knows.  i have had this for over 2 yrs now.  SOmetimes I think it might have been longer.  I used to have awful problems with my knees and feet when I wass younger and I was put on tetracycline and then myocycline for acne is don't remember having pain.  All I know is now I have a weird nerve thing going on in my right foot and it is swollen a little.  By nerve thing I mean it kind of tingles and hurts a little in the ball of my foot.  My toe joints have never hurt.

    Pip what is going on with you?  ARe you still in a wheelchair.  No offense, i hope to never have that happen.  that's why I am so concerned now.

    #310855
    Maz
    Keymaster

    Hi Tiff,

    Thanks for sharing this article…really informative. According to the write-up, it sounds like with your low RF, your chances of avoiding full blown RA are pretty good. AP works for RA, so just by being on AP before such a possibility occurring, your chances are probably even more markedly less. 😀 

    I find it so interesting that my Lyme started palindromically, exactly as described….I understand that this is pretty typical for those who are affected in the joints with Lyme Disease. The migrating joint pain is pretty much a hallmark of it in the early stages….and it truly is excruciating and bizarre the way it appears and just as suddenly disappears, so I equate with what you must experience with this. :crying:

    Peace, Maz

    #310856
    wendi
    Participant

    Maz,

    How long does it usually take Lyme to show its ugly face?  In my younger days I  burned many ticks off off me.  Grew up on 10 acres, mostly woods, in Conn.

     

    Thanks

    wendi

    #310857
    Maz
    Keymaster

    Hi Wendi,

    Typically, there are three stages of Lyme.

    The first stage occurring after the initial tick bite (though they are now saying other insect vectors may carry Lyme – fleas, mosquitos, mites, etc), which may or may not be noticed. Within a few days to a couple weeks a rash may appear. It may be a well defined, expanding “bulls-eye” (donut-shaped and red with a white center around the tick bite) or it may be a-typical in appearance. A large proportion of people never get a rash at all. Within this early period, you might also get a stiff neck, feel flu-like symptoms, get headaches, have a mild fever, achey and just generally malaised. If treated at this stage with the standard course of abx (2 to 3 weeks), the infection usually clears and all is well.

    The second stage – anywhere between a couple of weeks to a few months after infection –  ramps everything up and the aches and pains increase and become more defined in the joints and muscles. It's at this point that the migratory pain begins, one joint flaring up for a day or so and then moving on to another location. Or, you might experience things more neurologically with pins and needles, numbness, tingling, twitches, etc. All the other symptoms may worsen, too. At this point, it may take a little longer to clear up with abx.

    The third stage is when things start entering into chonicity. All the symptoms have worsened significantly, pain becomes more fixed and serious complications like Bell's Palsy, meningitis and heart block (though these may occur earlier, too) become a real concern. At this point, IVs are recommended and it may take several months of abx to control the infection (assuming there aren't any other hidden coinfections).

    This, bearing in mind, that this is considered the “typical” disease course and I haven't included all possible symptoms. Some people may not present with any noticeable symptoms at all after being bitten or may have minor symptoms that pass after initial infection and never get treated. However, it is estimated that a good percentage of people, as many as 10% of undiagnosed and diagnosed chronic cases, go on to develop what appears to be an “autoimmune” disease of some kind (Lupus, RA, JRA, FM, CFS, MS, etc). There is now research that indicates that scleroderma, sarcoidosis,  Parkinsons, Alzheimers, ADD, and a plethora of other diseases, are connected to Lyme infection. Borrelia has a preference for collagen-rich tissues (skin, bone, cartilage, muscle, tendon, brain and other vital organs), so any part of the body is a target and genetics, pre-existing pathogen/toxin load and hormones are considered to play a key roles in how the disease manifests in different individuals, as well as the degree of Bb strain virulence, itself…some strains of Bb being more virulent than others.

    What has been quite revealing in very recent mice research (published just a month or so ago – the study summary was posted here at that time) is that even when the mice have been treated for Lyme and blood serum shows negative for Bb, they are still finding spirochetes in other tissue samples. This is because the spirochete is a pleomorphic organism that has the ability to hide intracellularly, much like mycoplasma (which may be a coinfection of Lyme), and balls up when under attack into a cyst-like dormant form that is resistant to abx. The cyst form can hide in the tissues for many years and then suddenly re-emerge when conditions are right (a compromised immune system, stress situations, infection by some other pathogen, immuno-suppressing medications, etc).

    So, in answer to your question as to whether Lyme can re-appear later in life…the general concensus amongst Lyme Literate physicians and researchers is a resounding “yes!” and particularly so in certain individuals who may be predisposed for whatever reasons.

    Dr Brown was particularly interested in following the research of Lyme Disease, including a chapter on it in The Road Back, because he recognized many of the same stealth patterns in mycoplasma, which also waxes and wanes.

    In CT, recent tick studies indicated that as many as 60% of ticks were infected with Lyme and coinfections. This means that for those bitten, there is a greater than 50% chance of being infected. A further misconception worthy of mention here is that it has been said that a tick must be feeding on the host for 24-48 hours before Bb can be transmitted. However, the spirochete is transmitted in the saliva of the tick, so as soon as the tick bites and starts feeding, there is a risk of transmission. In the case of mosquito, mite or flea bites, it takes only seconds for them to transfer their toxins and makes this claim even more non-sensical, especially if Lyme is being transmitted via other insect vectors. In fact, some Lyme authorities are now saying Bb is being passed via body fluids (breast milk, intercourse, saliva, blood, etc.). One published study documented the case of kidney transplant patient being infected with tainted blood and coming down with a serious case of babesiosis, a co-infection of Lyme. One expert, Lida Mattman even went so far as to say that she suspects 50% of the world's population has been infected with Lyme, one way or another.

    This may be way more info than you wanted :shock:, but thought others may find it interesting. Basically, if there has been past tick exposure (lyme has been reported in all states of the contiguous US, as well as in many other countries in the world – Europe, for instance, purportedly having even more strains of Bb), this is something that should be seriously considered when treating for our diseases. 

    Peace, Maz   

     

     

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