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  • #302471
    Tiff
    Participant

    Hi everyone,

    Long story… lots of details, but I am going to shrink it down or I'll never make a post, and I really need some input! LOL!

    I've been struggling along with the MP for 16 months now – did AP for about 18 months before that.

    I just got the results of an MRI of my hands and wrists from the new rheumy I am seeing.  It was exactly what I predicted.  Good news and bad.  Good news is that there was no permanent damage.  The bad news is that there was every sign of inflammation that will do permanent damage.  MRIs show what x-rays do not.

    The doctor is very knowledgeable, was quite up on MP, had even used it in the past, but has stopped.  He is advising me to go off of it, start taking lots of fish oil, and (wait for it…) start on low dose MTX and Orencia (which apparently has less likelihood of increasing the risk of skin cancer than biologics because I have a history and family history of skin cancer).  He is fine with me continuing the Minocycline, but wants to stop the other MP meds (other ABX and Benicar).

    No surprises here.  This is pretty much what I expected to hear.  He says the treatment has been helpful, but it is no enough to stop the damage and so…

    Naturally what concerns me the most is that my I don't want to replace my mediocre results with more mediocre result that come with more risks.  Plus I am very worried as to what this would do to my chronically infected skin.  I have no idea about that.

    I know that I am risking real damage now.  The inflammation is very persistent and wide spread.  I still have palindromic characteristics in that it is still migratory and lacks symmetry, also it come is short burst, but now it is too frequent with some joints getting hit over and over including my index fingers and my jaw/neck area.  Without enough breaks in it, I can see that damage will happen.  I can't seem to tip this over the other way turning off the inflammation.  I just seem to be able to barely hold it in check.  And the pain and limitations are devastating to my daily life.  Too much so.

    We went on vacation and I broke down and took a round of prednisone for the first time ever so that I could even think of going.  I was virtually pain free and had a wonderful trip.  I walked miles at high altitude and rode horseback.  It was quite a reminder of how bad I have gotten.  When I tapered off of it, the pain came back, but it was slow and even now is a wee bit better than before the trip.  I cheated on many things MP – a lot of sunlight, vitamin D foods, and there was plenty of stress, but I can't say any of it made me feel better or worse, only the prednisone seemed to have a dramatic influence.

    So, I thought I'd share my experience with the group.  Interesting that after 3 years of this issue and being on ABX I do not have permanent damage.  My inflammatory markers SED rate, CRP have always been normal.  My only abnormal labs are a slowly increasing RF and a sky rocketing CCP and anemia.  I attribute the holding in check to the ABX, but I agree with the doctor that I am at risk now.

    I've tried everything the RBF posts about non-responders, including diet and treatments for yeast.  I have no indications of yeast problems or Lyme, but I have not had the advanced Lyme testing.  I'm not sure Lyme tests could ever be useful for me as I have been on ABX so long anyway.

    Any more ideas are welcome, but I am not expecting many new insights at this point.  I think my previous history of ABX use for skin issues has set me up for problems, but I also think it inadvertently kept the disease away for a long time.  It was not, however, the best approach for treating RA, and I think people treating RA with AP will get better results for the most part than I.

    I hope the MRI information is a good indication that the ABX approach to treating RA is safe and can be given a good long chance to work.  You won't suddenly wake one morning with terrible damage.  I still believe this is the best and safest thing for treating RA and should be used first.

    Thanks everyone for all the support!

    #332138
    richie
    Participant

    Hi

    I suspect the size of the dose of minocycline on the MP was rather small –Too small to have use as an anti-inflammatory –what was the dose of minocycline that you took these past 18 mos. while on MP



    richie

    #332139
    Lizz
    Participant

    Tiff, I'm like you, I've done all of the non-responder stuff except hormones ( which I am working on ) but still cannot get the monster inflammation down. I have recently, though, gone from M,W, F dosing to daily dosing. You're right after the MRI results, what do we have to lose? I very rarely see new joint involvement and after starting mino, the incident doesn't seem to last. I really think an Igenex test would settle the Lyme issue for you, once and for all, I did mine after over a year on mino. It changed my AP to one targeted for co-infection of Lyme. Too soon to tell. I know what you mean about pred, it can be addictive (especially if you're going on vacation) but it is not a good thing long term and a big no-no if you have Lyme. I wish you all the best in all you have to think about, you have people here who really under stand the decision process here as you go along. I am one of them.

    #332140
    Maz
    Keymaster

    Tiff, forgive me if I've posted this to you before, but scroll own this link to Dr H's talk – he's a very known LLMD. He says, with complete conviction, that any form of migrating, palindromic arthralgia is Lyme disease and there is no other documented disease that causes this type of arthritis. 

    http://www.ctlymedisease.org/videoclips.htm

    Before making such a big treatment decision, it may at least 'clear your plate' to have the IGeneX testing done. Won't harm anything (okay, maybe your pocket) and may help in your decisions, one way or another. TMJ and neck pain are prime suspects for Lyme, if injury or other infection has already been ruled out.

    Really sorry to hear this, Tiff, as I know you really wanted MP to work for you. This is my best suggestion, as a fellow patient, if you've tried everything else. This is for the reasons Lizz explained above…the darn coinfections of Lyme, which can be just as devastating and hold back progress…and need quite separate treatment. 

    Peace, Maz 

    #332141
    Kim
    Participant

    Sorry you've hit the wall, Tiff.  :crying:

    The others beat me to it…….get the Lyme test.  You can order the test kit yourself, it's #188 and #189 for the basic Western Blot from Igenex for around $200.  You pay upfront, but my insurance reimbursed me (not all do).  Your doctor has to sign the form and agree to accept the results.  Once you have the blood drawn (2 vials), pack it up as instructed and hand deliver to the shipper on M/Tu/Wed.  I had been on abx for about 3 years when I took my Lyme test and had 8 positive bands.  DO NOT let any doctor just tell you whether it was pos or neg…….get copies of the test and look at each band.  I'm sure you know the convoluted CDC formula for testing positive is a joke.  If only one of the very Lyme-specific bands is positive then you've been exposed and a LLMD will most likely treat you.  Neck pain is one of my few remaining symptoms.

    Good luck…..kim

    #332142
    Tiff
    Participant

    Thanks so much for the input.  You guys are the best.

    [user=16]richie[/user] wrote:

    Hi

    I suspect the size of the dose of minocycline on the MP was rather small –Too small to have use as an anti-inflammatory –what was the dose of minocycline that you took these past 18 mos. while on MP



    richie

    I very much agree with this idea, and I appreciate the reminder.  When I first started AP I did take 200mg 2x/day.  It took me a while, but I did go into a 4 month remission complete with normalized RF, no more anemia, and my CCP dropped nearly in half.  I dropped to pulse dosing only because I rather suddenly became severely nauseous.  I didn't want to, but I had no choice.  The pain came back within 10 days!  I had only dropped the Tuesday and Thursday doses, but I was right back to the palindromic pain.  I tried for another 3 months or so to add back the Tuesday and Thursday meds, but the pain did not stop.  The closer it came to stopping the more nausea I felt.  To this day I wonder if the dose needed to truly suppress my immune system is just always going to make me feel that way.  I could try again.  I also wonder if any other immune suppressing drug will eventually give me that symptoms.  The prednisone did not, but I only took it for 2 weeks.  This is definitely something for me to consider before I take the plunge!  I have considered trying to talk the doctor in to a higher dose of minocycline and perhaps staying on the Zith as well, for a few months at least to see.

    Lizz wrote:

    I really think an Igenex test would settle the Lyme issue for you, once and for all…

    More good advice, from you and seconded by Maz and Kim.   I am not sure I can even get one of my current doctors to do this for me, but I can try.  Perhaps the one I have been seeing will not mind since she knows me pretty well and will probably understand my desire to completely shut this door before I move on.  As we have talked about, Maz, a positive RF and CCP really puts the issue to bed for the vast majority of doctors, and that is the problem I am running into now.  It may take years for them to vet out the real situation with the CCP test, because right now it is not that highly used.

    I'll keep you all posted.  Thanks again so much for the ideas and the moral support! :roll-laugh:

    #332143
    Parisa
    Participant

    I was going to mention Lyme too but the others beat me to it.  Lyme disease needs antibiotics but often times at higher doses and more combinations especially if babesia is also involved in which case you also need antimalarials.  I definitely would try that route before you start the immune suppressors. 

    #332144
    lynnie_sydney
    Participant

    Tiff – I have to agree with Parisa. You are often on my mind in terms of our “palindromic” similarities. We've shared quite alot symptom-wise………..except that my symptoms did respond to mino. I kept thinking that your condition must be hiding some kind of missing link…….and I keep coming back to Lyme. So, if it were me, I would rule Lyme in or out before I started on any of the heavy hitters. Maybe you could continue with a smallish amount of pred to keep the inflammation at bay while you're searching for more answers? It may also help you maintain some energy to keep on searching, rather than lying down and crying “uncle” – which must be so tempting after so long waiting for a turnaround. Maybe no great new insights for you, but know that I'm thinking of you and willing that missing link to show up real soon. 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)

    #332145
    Tiff
    Participant

    Thanks, Parisa, but even if I do test positive,  I sure don't know that I could see a Lyme specialist.  My insurance (military) isn't interested in letting me go to anyone outside my “network” or outside of my area and the specialty that they think I should be seeing (rheumatology).  So if I try to see a Lyme doctor, it will be totally out of pocket, and it will be at least 150 miles away… probably a lot more. 

    They have a plan that allows point of contact service or even one that allows you to see anyone, but it really is a scam.  They pay a percentage, but it turns out to be a percentage of their own “allowed” cost, which is not at all what the doctors are charging, and it won't cover any travel costs.

    Lynnie, I have wondered about that, too.  It could be that the exposure to the tetracyclines early on followed by quite a few years of amoxicillin and then Bactrim (all for my skin) created a resistant myco in me that is just not responding to these low doses.  Most people doing AP are not going to run into that problem.  I agree that I should do the Lyme test, but I am not sure what I would do with a positive result if the docs (PCM and the rheumy) won't acknowledge it and refer me through my insurance.  I really think doing an advanced Lyme protocol is going to be a lot harder than doing AP or even MP – on your own – as I have been doing.  Those folks need real guidance to navigate the meds Parisa suggests.  I would not be comfortable doing that the way I have been doing AP or MP.

    But this is not to sound all negative and hopeless.  I definitely want to put to bed any remaining bunny trails no matter how hard it might be to manage.  Lynnie, I have wondered about your idea with the prednisone, too.  I do plan to use it if I need to when traveling to the doctors since those days are very long, and it has been over 100 every day here in W. Texas!  Yikes!  All that is enough to make you want to crawl in a hole!  So it may help me get through some more appointments and testing.  I just want to be careful.  I have a healthy respect for the issues with that drug!  :sick:

    So, to sum up my plan for when I see this rheumy again on the 31st…

    1) Ask about switching from the MP protocol to daily dosing Mino or maybe a combo Mino/Zith for a few months

    2) Seek out the Igenex Lyme testing to clarify that issue

    3) Perhaps use prednisone while I am navigating all these visits and tests

    Qestion:  Is it better to take 5mg prednisone constantly for the next month, or can you use it “as needed”?  I need it all the time, but I am pretty used to being miserable and can do without, too.  I just have to be able to MOVE on days I have a doctor's appointment in San Antonio, IYKWIM?  😉

    #332146
    Trudi
    Participant

    [user=45]Tiff[/user] wrote:

    I agree that I should do the Lyme test, but I am not sure what I would do with a positive result if the docs (PCM and the rheumy) won't acknowledge it and refer me through my insurance.  I really think doing an advanced Lyme protocol is going to be a lot harder than doing AP or even MP – on your own – as I have been doing.  Those folks need real guidance to navigate the meds Parisa suggests.  I would not be comfortable doing that the way I have been doing AP or MP.

    2) Seek out the Igenex Lyme testing to clarify that issue

    Hi Tiff–

    I'm glad you are going to seek the Lyme test through Igenex.  I agree that the Lyme protocol is daunting; however, since at this point antibiotics are contraindicated for me, my Lyme specialist has me on alternatives (colloidal silver and Spiro).  There are also numerous botanicals, listed in Healing Lyme by Steven Buhner which cause grief for Lyme bacteria and coinfections.  I think all of them are over the counter and don't cost an arm and a leg.

    Just giving you some alternatives–

    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #332147
    sierrra
    Participant

    [user=45]Tiff[/user] wrote:

    Hi everyone,

    Long story… lots of details, but I am going to shrink it down or I'll never make a post, and I really need some input! LOL!

    I've been struggling along with the MP for 16 months now – did AP for about 18 months before that.

    I just got the results of an MRI of my hands and wrists from the new rheumy I am seeing.  It was exactly what I predicted.  Good news and bad.  Good news is that there was no permanent damage.  The bad news is that there was every sign of inflammation that will do permanent damage.  MRIs show what x-rays do not.

    The doctor is very knowledgeable, was quite up on MP, had even used it in the past, but has stopped.  He is advising me to go off of it, start taking lots of fish oil, and (wait for it…) start on low dose MTX and Orencia (which apparently has less likelihood of increasing the risk of skin cancer than biologics because I have a history and family history of skin cancer).  He is fine with me continuing the Minocycline, but wants to stop the other MP meds (other ABX and Benicar).

    No surprises here.  This is pretty much what I expected to hear.  He says the treatment has been helpful, but it is no enough to stop the damage and so…

    Naturally what concerns me the most is that my I don't want to replace my mediocre results with more mediocre result that come with more risks.  Plus I am very worried as to what this would do to my chronically infected skin.  I have no idea about that.

    I know that I am risking real damage now.  The inflammation is very persistent and wide spread.  I still have palindromic characteristics in that it is still migratory and lacks symmetry, also it come is short burst, but now it is too frequent with some joints getting hit over and over including my index fingers and my jaw/neck area.  Without enough breaks in it, I can see that damage will happen.  I can't seem to tip this over the other way turning off the inflammation.  I just seem to be able to barely hold it in check.  And the pain and limitations are devastating to my daily life.  Too much so.

    We went on vacation and I broke down and took a round of prednisone for the first time ever so that I could even think of going.  I was virtually pain free and had a wonderful trip.  I walked miles at high altitude and rode horseback.  It was quite a reminder of how bad I have gotten.  When I tapered off of it, the pain came back, but it was slow and even now is a wee bit better than before the trip.  I cheated on many things MP – a lot of sunlight, vitamin D foods, and there was plenty of stress, but I can't say any of it made me feel better or worse, only the prednisone seemed to have a dramatic influence.

    So, I thought I'd share my experience with the group.  Interesting that after 3 years of this issue and being on ABX I do not have permanent damage.  My inflammatory markers SED rate, CRP have always been normal.  My only abnormal labs are a slowly increasing RF and a sky rocketing CCP and anemia.  I attribute the holding in check to the ABX, but I agree with the doctor that I am at risk now.

    I've tried everything the RBF posts about non-responders, including diet and treatments for yeast.  I have no indications of yeast problems or Lyme, but I have not had the advanced Lyme testing.  I'm not sure Lyme tests could ever be useful for me as I have been on ABX so long anyway.

    Any more ideas are welcome, but I am not expecting many new insights at this point.  I think my previous history of ABX use for skin issues has set me up for problems, but I also think it inadvertently kept the disease away for a long time.  It was not, however, the best approach for treating RA, and I think people treating RA with AP will get better results for the most part than I.

    I hope the MRI information is a good indication that the ABX approach to treating RA is safe and can be given a good long chance to work.  You won't suddenly wake one morning with terrible damage.  I still believe this is the best and safest thing for treating RA and should be used first.

    Thanks everyone for all the support!

    Sounds like you have a good doctor; it may be worth trying what he recommends for a period of time.

    Sierra

    #332148
    Marie
    Participant

    Tiff,

    I'm so sorry to hear of your struggles with inflammation.  It is really a bear when it goes crazy in a seemingly uncontrolled way. 

    You have a good plan set up, though! 

    I, too, have a ton of inflammation.  When it was really bad, it was everywhere.  Everywhere.  I would have been stuck in bed if I hadn't figured out a better way to manage it. 

    I don't eat gluten, but I saw in your post that you've already tried diet modifications.  Going off gluten helped me some, but I was still in trouble.  I take fish oil, but an anti-inflammatory curcumin-based supplement has been a lifesaver for me.  The brand I take is hard to get ahold of b/c you have to get it from a dr who sells the line (ProThera), but Zyflamend, which you can get otc, is basically the same. 

    Prednisone works on my inflammation, too, but I've found even better relief with the curcumin. 

    I've been going through a tick borne illness fiasco for some time now, and the curcumin at least keeps me fairly comfortable till I (hopefully) get it all solved. 

    Best wishes to you!  Let us know how your appointment goes.

    Marie

    #332149
    Tiff
    Participant

    Thanks for the curcumin idea.  The doctor recommended fish oil, which I have done in the past but am not doing now.  The best I have ever felt was when I was on lots of probiotics, fish oil, and daily mino.  That approach is worth trying again, and it might not take that long to tell if it is working or not.  I'm kind of on the clock now with this damage thing.  Kind of;  I'm not sure really.  I am negative for Celiac by both blood and biopsy, but I tried the diet anyway without a bit of relief after 8 weeks.  There is really no end to what you could try where diet is concerned, but I just have not seen a connection for me with what I have tried.  I know it has been helpful for others.

    Thanks everyone!

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