Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Sounds like palindromic rheumatism presentation .. but the high antiCCP indicates high likelyhood of RA. 70% of RA patients respond to Anti-tnf drugs ... so you're not alone in not responding to abatacept. If you wish to try Minocycline, then you need to persuade the docs with a literature review. Good luck. On 6/19/06, Adlard <cadlard@...> wrote: > > Hi group, > > I will help subscribe to the group - perhaps some of you could > talk to her and encourage her. > Thanks, Chris. > > Begin forwarded message: > > > From: " Jonok " <jonokgame@... <jonokgame%40hotmail.com>> > > Date: 18 June 2006 7:46:19 AM > > <cadlard@... <cadlard%40chariot.net.au>> > > Subject: Help!?! Please? > > > > I'm not sure if anyone can help me but I am desperate and so > > confused. I got RA a year ago, 8 months after the birth of my son, 3 > > -- Dr Graham Chiu http://www.compkarori.com/forum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi, What do your tests show( sed rate, RF, CRP, ASO)? Your traveling pains sound a lot like mine when I firast came down with RA. Help!?! Please? > > I'm not sure if anyone can help me but I am desperate and so > confused. I got RA a year ago, 8 months after the birth of my son, 3 > days after I stopped breastfeeding - I had a short bout of pain in my > wrists when I was 3 months pregnant. I went to docs and various rds > and no one believed I had RA - the pain was travelling around it was > so painful it lasted in a joint, or joints for 2 days before moving > elsewhere. The only bloods that were weird were a weak postive RF and > low white cell count - I have had neutropenia ever since but no signs > of lupus or anything. I found out about the anti ccp test and i was > high positive but still no one believed me because I don't get > swelling - eventually the hospital believed me and i went on a trial > of abatacept for 6 months to see if it would make the arthritis - > which they are still calling undifferentiated - go away. It didn't > make it go away at all. I don't know what to do - i have cut out all > foods that are bad for me - over a year no gluten, nightshades, dairy > - I'm doing the mercola diet now and eft and just about to start nst - > the doc says the low white count is probably because of the RA but I > don't know anyone else who has this. i had a hair analysis done and > it came back high for a virus pathogen - but I've not been able to > improve my symptoms with natural anti viral supplements. ALL the RD's > I've seen are totally against Minocycline use - I live in the UK by > the way. The other weird thing and I am desperate for an answer to > this is this. I always have pain in my fingers, feet and right elbow > but I get travelling flares about twice or three times a week which > ALWAYS start at the same time of night, build in intesity and then die > down 48 hours later. When the flare dies down and before it moves > somewhere else I get a shivery feeling in my body like something is > moving about in my bloodstream before it settles into another joint. > I can feel it there. Does anyone get any of this? I keep trying to > talk to the RD's about it but they are not interested they just say > MTX or Enbrel but I don't want to take these yet I feel maybe I don't > have normal RA? I went to a private doctor's for a mycoplasma test > but it came back negative - I don't know what to do - no one else > seems to have this shivery feeling as the joint pain moves or the low > white cell count - it's not caused by meds - I had it right at the > start just before the joint pain. I really hope someone can help - > I'm just connected to the net today after a long time and I'm trying > to subscribe to this. > > I hope to be a member of this group and get to know everyone here and > i'd really appreciate any advice from anyone because I feel like > hitting my head off a wall - I have been so strict with diet and > everything - i'd do ANYTHING to get rid of this but I'm not getting > anywhere. > > Thanks so much - oh my name's , by the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Help!?! Please? > > > > > > I'm not sure if anyone can help me but I am desperate and so > > > confused. I got RA a year ago, 8 months after the birth of my son, 3 > > > > > -- > Dr Graham Chiu > http://www.compkarori.com/forum > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 What drugs would be anti TNF drugs? My original dx is SD.(anticentromere antibody)with a positive RF but very low (14) DRs were not convinced re the RA...my rnp has always been negative..so not MCTD...I am going to do a anti ccp test per my DR this week... Cannot try minocin again..did very well on it for 2 years until I ended up in the hospital with severe hypersensitivity pneumonitis...DRs thought, could be the SD? could be our parrot? ( we had to find a good home) or could be the mino, so I was removed promptly and my AP physician says it would be far toooo dangerous for me to ever try the mino again... The past 5 months my hands and ankles have been swollen but my cardio DR says it is not cardiac related...so far no hardening on my hands...DR is wondering re the RA now.. Thanks for any help, Debbie Thank you, Debbie Gibson Help!?! Please? > > > > > > I'm not sure if anyone can help me but I am desperate and so > > > confused. I got RA a year ago, 8 months after the birth of my son, 3 > > > > > -- > Dr Graham Chiu > http://www.compkarori.com/forum > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Hi, in the UK! Sally in Little Rock, Arkansas, here. I had traveling pain and no swelling for 7 years before both my hands, wrists and feet swelled horrifically in Sept '99. '96-'99 I would have swelling and it would wax and wane, and was dx w/gout and had only a mild case in my left thumb but it is pretty crippled now and I wish I'd gotten started on AP (antibiotic therapy) way back when, but all the docs were telling me nothing was wrong and I KNEW something was TERRIBLY wrong!! I've been an athlete all my life and have a high pain threshold and knew if it was just the start of osteoarthritis that I should have been able to walk, etc. My downfall started with a tick bite in '92 and I have been dx with Reiter's syndrome or reactive arthritis, which is simply rheumatoid caused by an infection. So, order the book by our hero, Dr. MacPherson Brown, written by Henry Scammell, called " The New Arthritis Breakthrough " which encompasses the 1st book written by these 2 called " The Road Back " . The book & this group have really saved my life. I'm in partial remission and hands and feet look and feel a 100 x better. Also, you could go to Gabe Mirkin's web site at www.drmirkin.com and see what his antibiotic protocol is (that's what I've been on since Jun '02) and take it to your docs over there so you have SOMETHING IN WRITING FROM ANOTHER DOC to show them. I know about being in intense pain and wondering why nothing works, , as do most of us on this site. Try to get started ASAP so that you don't get severe joint damage. Its a total drag. Altho I look and feel much better, I have severe deterioration in both hands, wrists and feet and even being on line typing for more than 15 mins, 1/2 hr, I start hurting!! Haven't been able to go back to teaching college psych, but I also do not need to work, so I'm very lucky in a lot of ways. Have a super hubby who does 99% of the grocery shopping, and cooks most of the time, too, if my wrists or hands aren't up to it. Good luck, girl, and welcome to the group! Sally in Little Rock Help!?! Please? > > I'm not sure if anyone can help me but I am desperate and so > confused. I got RA a year ago, 8 months after the birth of my son, 3 > days after I stopped breastfeeding - I had a short bout of pain in my > wrists when I was 3 months pregnant. I went to docs and various rds > and no one believed I had RA - the pain was travelling around it was > so painful it lasted in a joint, or joints for 2 days before moving > elsewhere. The only bloods that were weird were a weak postive RF and > low white cell count - I have had neutropenia ever since but no signs > of lupus or anything. I found out about the anti ccp test and i was > high positive but still no one believed me because I don't get > swelling - eventually the hospital believed me and i went on a trial > of abatacept for 6 months to see if it would make the arthritis - > which they are still calling undifferentiated - go away. It didn't > make it go away at all. I don't know what to do - i have cut out all > foods that are bad for me - over a year no gluten, nightshades, dairy > - I'm doing the mercola diet now and eft and just about to start nst - > the doc says the low white count is probably because of the RA but I > don't know anyone else who has this. i had a hair analysis done and > it came back high for a virus pathogen - but I've not been able to > improve my symptoms with natural anti viral supplements. ALL the RD's > I've seen are totally against Minocycline use - I live in the UK by > the way. The other weird thing and I am desperate for an answer to > this is this. I always have pain in my fingers, feet and right elbow > but I get travelling flares about twice or three times a week which > ALWAYS start at the same time of night, build in intesity and then die > down 48 hours later. When the flare dies down and before it moves > somewhere else I get a shivery feeling in my body like something is > moving about in my bloodstream before it settles into another joint. > I can feel it there. Does anyone get any of this? I keep trying to > talk to the RD's about it but they are not interested they just say > MTX or Enbrel but I don't want to take these yet I feel maybe I don't > have normal RA? I went to a private doctor's for a mycoplasma test > but it came back negative - I don't know what to do - no one else > seems to have this shivery feeling as the joint pain moves or the low > white cell count - it's not caused by meds - I had it right at the > start just before the joint pain. I really hope someone can help - > I'm just connected to the net today after a long time and I'm trying > to subscribe to this. > > I hope to be a member of this group and get to know everyone here and > i'd really appreciate any advice from anyone because I feel like > hitting my head off a wall - I have been so strict with diet and > everything - i'd do ANYTHING to get rid of this but I'm not getting > anywhere. > > Thanks so much - oh my name's , by the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Anti-TNF drugs are like Etanercept, Humira etc ... basically antibodies directed against TNF or the receptor. Interestingly Minocycline is said to have some anti TNF activity. On 6/19/06, DEBBIE GIBSON <Debbullwinkle@...> wrote: > > What drugs would be anti TNF drugs? > My original dx is SD.(anticentromere antibody)with a positive RF but very > low (14) DRs were not convinced re the RA...my rnp has always been > negative..so not MCTD...I am going to do a anti ccp test per my DR this > week... > > -- Dr Graham Chiu http://www.compkarori.com/forum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Sally, You say that everything started with a 'tick' bite. Have you ever been tested for Lyme disease? There a few at the www.rheumaticsupport.net site that have discovered upon taking the test for lyme that they have it as well or that lyme is causing their symptoms of RA. Just a thought. Carol_DM Help!?! Please? > > I'm not sure if anyone can help me but I am desperate and so > confused. I got RA a year ago, 8 months after the birth of my son, 3 > days after I stopped breastfeeding - I had a short bout of pain in my > wrists when I was 3 months pregnant. I went to docs and various rds > and no one believed I had RA - the pain was travelling around it was > so painful it lasted in a joint, or joints for 2 days before moving > elsewhere. The only bloods that were weird were a weak postive RF and > low white cell count - I have had neutropenia ever since but no signs > of lupus or anything. I found out about the anti ccp test and i was > high positive but still no one believed me because I don't get > swelling - eventually the hospital believed me and i went on a trial > of abatacept for 6 months to see if it would make the arthritis - > which they are still calling undifferentiated - go away. It didn't > make it go away at all. I don't know what to do - i have cut out all > foods that are bad for me - over a year no gluten, nightshades, dairy > - I'm doing the mercola diet now and eft and just about to start nst - > the doc says the low white count is probably because of the RA but I > don't know anyone else who has this. i had a hair analysis done and > it came back high for a virus pathogen - but I've not been able to > improve my symptoms with natural anti viral supplements. ALL the RD's > I've seen are totally against Minocycline use - I live in the UK by > the way. The other weird thing and I am desperate for an answer to > this is this. I always have pain in my fingers, feet and right elbow > but I get travelling flares about twice or three times a week which > ALWAYS start at the same time of night, build in intesity and then die > down 48 hours later. When the flare dies down and before it moves > somewhere else I get a shivery feeling in my body like something is > moving about in my bloodstream before it settles into another joint. > I can feel it there. Does anyone get any of this? I keep trying to > talk to the RD's about it but they are not interested they just say > MTX or Enbrel but I don't want to take these yet I feel maybe I don't > have normal RA? I went to a private doctor's for a mycoplasma test > but it came back negative - I don't know what to do - no one else > seems to have this shivery feeling as the joint pain moves or the low > white cell count - it's not caused by meds - I had it right at the > start just before the joint pain. I really hope someone can help - > I'm just connected to the net today after a long time and I'm trying > to subscribe to this. > > I hope to be a member of this group and get to know everyone here and > i'd really appreciate any advice from anyone because I feel like > hitting my head off a wall - I have been so strict with diet and > everything - i'd do ANYTHING to get rid of this but I'm not getting > anywhere. > > Thanks so much - oh my name's , by the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 TROTS.......When someone is treated for Lymes disease, the treating physician reports to the CDC, which compiles statistics on the disease, as well as stats on the geographical prevalence of the black-legged or deer tick. 85% of all cases occur in the Northeast; 10% in Minn & Wisc combined; and less than 1% in the South. These numbers have been relatively consistent for the last dozen years. They are directly related to the relative presence of the couple variations of the only species that carries the bacterium responsible for transmission of the disease. In many parts of the country, other tick-borne diseases (there are nearly two dozen) are much more common. Perhaps Lymes is afforded the spotlight so much at least partially because its geographically at media ground zero (New York, which alone has more than 25% of the cases The CDC itself reports that 26% of all initial reports are resolved as incorrect diagnoses. This according to the CDC is likely related to the relatively high number of false positive related to some of the test methods, as well as the inconsistent display of symptons. That's 26% of incorrect diagnoses that are actually reported, so the true number of incorrect diagnoses is likely much higher. They also note that transmission is unlikely within the first 36 hours that tick attaches itself, but I imagine many people rush out and get tested anyway, adding to those false positives. Obviously, and unfortunately, if someone experiences a false positive or an incorrect diagnoses, that will also usually mean that their actual disease or condition is not being treated at all. Jeff ----Original Message Follows---- From: " Bob & Carol Zarn " <bczarn1@...> Reply-rheumatic <rheumatic > Subject: Re: rheumatic Fwd: Help!?! Please? Date: Tue, 20 Jun 2006 08:35:22 -0500 Sally, You say that everything started with a 'tick' bite. Have you ever been tested for Lyme disease? There a few at the www.rheumaticsupport.net site that have discovered upon taking the test for lyme that they have it as well or that lyme is causing their symptoms of RA. Just a thought. Carol_DM Help!?! Please? > > I'm not sure if anyone can help me but I am desperate and so > confused. I got RA a year ago, 8 months after the birth of my son, 3 > days after I stopped breastfeeding - I had a short bout of pain in my > wrists when I was 3 months pregnant. I went to docs and various rds > and no one believed I had RA - the pain was travelling around it was > so painful it lasted in a joint, or joints for 2 days before moving > elsewhere. The only bloods that were weird were a weak postive RF and > low white cell count - I have had neutropenia ever since but no signs > of lupus or anything. I found out about the anti ccp test and i was > high positive but still no one believed me because I don't get > swelling - eventually the hospital believed me and i went on a trial > of abatacept for 6 months to see if it would make the arthritis - > which they are still calling undifferentiated - go away. It didn't > make it go away at all. I don't know what to do - i have cut out all > foods that are bad for me - over a year no gluten, nightshades, dairy > - I'm doing the mercola diet now and eft and just about to start nst - > the doc says the low white count is probably because of the RA but I > don't know anyone else who has this. i had a hair analysis done and > it came back high for a virus pathogen - but I've not been able to > improve my symptoms with natural anti viral supplements. ALL the RD's > I've seen are totally against Minocycline use - I live in the UK by > the way. The other weird thing and I am desperate for an answer to > this is this. I always have pain in my fingers, feet and right elbow > but I get travelling flares about twice or three times a week which > ALWAYS start at the same time of night, build in intesity and then die > down 48 hours later. When the flare dies down and before it moves > somewhere else I get a shivery feeling in my body like something is > moving about in my bloodstream before it settles into another joint. > I can feel it there. Does anyone get any of this? I keep trying to > talk to the RD's about it but they are not interested they just say > MTX or Enbrel but I don't want to take these yet I feel maybe I don't > have normal RA? I went to a private doctor's for a mycoplasma test > but it came back negative - I don't know what to do - no one else > seems to have this shivery feeling as the joint pain moves or the low > white cell count - it's not caused by meds - I had it right at the > start just before the joint pain. I really hope someone can help - > I'm just connected to the net today after a long time and I'm trying > to subscribe to this. > > I hope to be a member of this group and get to know everyone here and > i'd really appreciate any advice from anyone because I feel like > hitting my head off a wall - I have been so strict with diet and > everything - i'd do ANYTHING to get rid of this but I'm not getting > anywhere. > > Thanks so much - oh my name's , by the way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Hi, Carol-Sally in L. Rock here. Yes, I have been tested multiple times but even my rheumy in the DC area said tests not reliable and if I'd had one round of A/B since the '92 tick bite (this was '99) it could mask the Lyme's-I have been Dx'ed twice by 2 very thorough rheumies as having Reiters-which is RA caused by an infection, so they both obviously think that my RA was caused by the tick bite (or whatever that horrendous burrowing thing was on my thigh). May have to go get in the hot tub (poor me, right? as my shoulders and elbows are starting to hurt... Thanks for asking, Carol! Sally in L. Rock Help!?! Please? > > I'm not sure if anyone can help me but I am desperate and so > confused. I got RA a year ago, 8 months after the birth of my son, 3 > days after I stopped breastfeeding - I had a short bout of pain in my > wrists when I was 3 months pregnant. I went to docs and various rds > and no one believed I had RA - the pain was travelling around it was > so painful it lasted in a joint, or joints for 2 days before moving > elsewhere. The only bloods that were weird were a weak postive RF and > low white cell count - I have had neutropenia ever since but no signs > of lupus or anything. I found out about the anti ccp test and i was > high positive but still no one believed me because I don't get > swelling - eventually the hospital believed me and i went on a trial > of abatacept for 6 months to see if it would make the arthritis - > which they are still calling undifferentiated - go away. It didn't > make it go away at all. I don't know what to do - i have cut out all > foods that are bad for me - over a year no gluten, nightshades, dairy > - I'm doing the mercola diet now and eft and just about to start nst - > the doc says the low white count is probably because of the RA but I > don't know anyone else who has this. i had a hair analysis done and > it came back high for a virus pathogen - but I've not been able to > improve my symptoms with natural anti viral supplements. ALL the RD's > I've seen are totally against Minocycline use - I live in the UK by > the way. The other weird thing and I am desperate for an answer to > this is this. I always have pain in my fingers, feet and right elbow > but I get travelling flares about twice or three times a week which > ALWAYS start at the same time of night, build in intesity and then die > down 48 hours later. When the flare dies down and before it moves > somewhere else I get a shivery feeling in my body like something is > moving about in my bloodstream before it settles into another joint. > I can feel it there. Does anyone get any of this? I keep trying to > talk to the RD's about it but they are not interested they just say > MTX or Enbrel but I don't want to take these yet I feel maybe I don't > have normal RA? I went to a private doctor's for a mycoplasma test > but it came back negative - I don't know what to do - no one else > seems to have this shivery feeling as the joint pain moves or the low > white cell count - it's not caused by meds - I had it right at the > start just before the joint pain. I really hope someone can help - > I'm just connected to the net today after a long time and I'm trying > to subscribe to this. > > I hope to be a member of this group and get to know everyone here and > i'd really appreciate any advice from anyone because I feel like > hitting my head off a wall - I have been so strict with diet and > everything - i'd do ANYTHING to get rid of this but I'm not getting > anywhere. > > Thanks so much - oh my name's , by the way. Quote Link to comment Share on other sites More sharing options...
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