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Hi Folks….
Well I've been diagnosed a year now and on AP for almost that much time. When I first got my blood work done… my RF was 104. I just had it done recently and though I haven't been back to the doctor's yet… I go August 1st… her nurse told me that my RF is now 194. Shouldn't it have gone down by now???? Isn't a normal RF about 20? Why am I continuing to have such a hard time? I take 100 mg. minocycline every day. I think my pain has improved (is there such a thing as improved pain??) and generally I don't have the brain fog.. just once in a while when I'm catching everything that goes around.
I am so discouraged even though I try to maintain a “stiff upper lip” about this whole baffling disease. So many of you are doing so well and yet I know that many of you are suffering more than I am. I feel guilty when I complain. However, I still can't walk normally and forget any kind of exercise! You have been so encouraging… I still believe that some day I will be in remission. It's just that right now, I'm having a hard time understanding.
Nan
Nan -so sorry about the test result- but it's possible your RF and other tests will get worse before they get better. This happened to me last January, and I noted it on this Board too! Are you taking an NSAID, or prednisone? I have been on 4mg of pred since Feb., and for whatever reason, I'm getting better. It doesn't have to be pred. it could be advil, aleve, motrin. In the book Dr. Brown suggested an NSAID with the mino or in close proximity to help the mino penetrate. I think Lynnie-Sydney's RF went higher in a recent test but she is overal better due to diet changes and avoiding sulphites. You might want to consider this. Also, for some people a year on mino is not enough…you may need more time. And, you might also want to consider going to M,W,F dosing. Talk to your doctor, maybe more time or stirring the mix will help. All the best.
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Lizz RA 11/07, AP 5/07
Nan – sorry you are still having problems. However, a year is not that long in this treatment. Lizz is right. My RF went up when I first started AP in 2003 – from 592 to 692! However, it plunged by 300 points in about 5 months. The same elevation of RF happened with my new regime that started in April, but only slightly – from 292 to 300 (not very significant). Bloodwork does tend to “herx” along with symptoms.
After a year, however, I am wondering whether it's a herx for you. It may be worth considering that your daily dosing may be acting more immuno-suppressively versus killing pathogens. It could be worth talking to your doc about changing to pulse dosing, which some think is more in line with killing bugs. Whatever, sometimes we need to tweak the protocol to find out what works better for us – and there is not always a clear cut answer to that. You may also need to consider whether your diet is implicated and/or whether you may need an anti-fungal or another antibiotic added into the mix. One last thing – bloodwork is not the be-all and end-all. Clinical signs are the better way to judge how you are doing. And you do appeaer to be doing better. Keep the faith. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Nan,
It's always good to question. Maybe your current treatment isn't enough and you need to add something else in to get things moving along. Consider enzymes to help the antibiotic penetrate better and also to “eat” at the inflammation. Turmeric is good for inflammation. Some people cycle in other antibiotics.
Yes, some people seem to have it easier than others. Looks like your path is going to be a little harder than theirs but you'll get there too just maybe a little differently.
Aside from the blood test, how are you feeling? What is your sense of how the treatment and disease are working?
I've always been suspicious of diagnosis strictly by blood work. My take on it is that I get lab work done when I feel badly, to help figure out what is wrong. I know that some things like blood pressure are silent until they burst a pipe, but I would never get my RF levels checked if I felt healthy (e.g., before RA) nor would I worry about it if I think or know I am getting better. When I finally figured out that this treatment was absolutely working, then I was plenty content to kick that tin can down the alley to pick up later. So likewise now that I think I am 97% or 98% cured, I don't bother checking, ever. I have other important dad and husband stuff to do with that hour. Doc may or may not check my blood once a year for RF and if that makes her happy, then great, but I sure don't care. Imagine some doctor did some blood work and informed otherwise healthy, happy you that based on those results he wants to saw your arm off. So first, ask yourself how you think the treatment is working. This is from a scientist; I appreciate numbers, in their place.
Thank you all for your kind responses. It?s been suggested that I try pulse dosing but I have done that. When I pulsed I was in such pain that I started taking it every day instead. I took 100 mg. MWF and then 100 mg. each day. Do you think I should try pulse, taking 100 mg. twice a day? Also, I take extra strength Tylenol for the pain? Aleve, Advil, Aspirin etc. didn?t work for me. I won?t take anything stronger as I?m extremely sensitive to medications.
John, I know you deal in numbers and you have such a way of clearing out the cobwebs to get to the underlying issue? for me it?s the forest and the trees thing. You asked how I?m feeling.. well, some days it?s tolerable. Others, I just lose patience. The pain, as everyone knows, travels to different parts of our bodies. Some days it?s in the knees, another time in the hands/wrists and EVERY day it?s in my feet! By the way? has anyone else ever gotten a nodule between the toes??? I?m not sure if that?s what it is but it sure does look like one and it?s right next to my big toe. Sigh?..
My sense of how the treatment is going? Well, I think that I much prefer where I?m at now then where I was when I was first diagnosed. The pain was so great that to walk across the room was like crossing the Mojave Desert. By the time I got to where I was headed, I was exhausted and so stiff! Now it?s still a long way but I have my “Desert” boots on. I do walk funny though.
I feel better knowing that you all felt the same way about the blood work. I won?t stress over it like I was doing. You also suggested that I ask my doctor about all of this and the pulse vs. daily? but, I?ve been flying (with the exception of this board) solo. I?ve been trying to find a sympathetic doctor who would be willing to adopt me. They are all so doggone scared of AP? good grief. They also travel in pack mentality mode. “RA??? No? don?t know enough about it. Here? take these pills for the pain, I hear they work, and go see a Rheumatologist”.
Oh and John? I REALLY envy you because you didn?t have to do all that other stuff with probiotics, enzymes, Vitamin D, and all those other things that many of us frantically go after. You have been blessed. My tummy gives me all kinds of problems.
Thank you again for all of your helpful suggestions. I (and I?m sure many, many others) truly appreciate the time and effort you all put into this board. God bless. I keep you all in my prayers.
Nan
Oh and John? I REALLY envy you because you didn?t have to do all that other stuff with probiotics, enzymes, Vitamin D, and all those other things that many of us frantically go after. You have been blessed. My tummy gives me all kinds of problems.
Thanks for being sweet Nan. And as for the above, it seems to relate to time with the disease. Carol S. brought to my attention shortly after I started AP when it was still a tiny group of people. It was a long time before I chose to try it but I decided to hedge my bets and avoid most supplemental D right from the gitgo. Maybe that helped me recover so quickly. Maybe not. I already did the experiment and I can't go back and try it the other way. Also I DID need probiotics when I was on AP including months and months after I reached a degree of remission. Long before my joints caught on fire my gut began to misbehave. At first it was a slowly growing list of food intolerances, one or two new foods a year that I couldn't eat. At one point I discovered that I couldn't eat a lean steak or ribs anymore without gassing my poor family out of the house. I started having trouble with all sorts of foods and either just before or just after I acquired my explosive onset of RA I became habitually constipated. None of that resolved with AP. It wasn't until after about 5 or 6 months of MP that I found my gut to be healing. I can eat pretty much anything but lactose now, and I intentionally avoid the D-prohibited foods from the MP. Sometimes wine or beer will give me grief if I have a big herx going but mostly I can eat anything now that I could eat when I was 21. I just can't eat as much of it because I am too sedentary now. I absolutely DO NOT need probiotics anymore. In fact I worry just a little bit now if eating yogurt or other live culture food may impede my remaining progress by deliberately introducing bacteria. The little buggers swap genes between species and even genera they way we swap posts on this bulletin board. I get some of yours and you try some of mine. I worry about breeding something I wouldn't like. But it is just a worry. I know now is I thought my gut was aging, but I now now it was sick and I know now it can heal.
Both the disease and the damned traditional medicines are mighty tough on the gut. But Nan, there is light out there. Don't give up. Keep working your protocol and you will be good.
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Parisa, thankfully my liver tests came out negative. So far, so good. I find I don't have to take as much…. maybe 4 to 6 a day. Some days I don't have to take but 2. I like those days. That's since I upped my dosage to 100 mg. every day.
I still wonder if I should try pulse dosing but instead of only 100 mg. once every MWF… take 100 mg. twice a day MWF. I just don't know what to do… I hate upsetting my system to try to find out. Ok… I hate the pain that accompanies it! 😉
Hi Nan,
My hubby has SD, and when he started on AP, about somewhere between 6-8 months on AP, when things were noticeably improving, his bloodwork was worse. This is mentioned in I believe Dr. Browns observations, and other info I read from RHeumatic.org site. Vice-versa also – bloodwork can improve, while symptoms seem to worsen. Try not to be too alarmed – I agree with John, go by how you are feeling and sometimes too much testing is of no benefit except to cause concern and alarm – been there, done that!
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