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Hello everyone,
I met with an AP doctor today and he is great! He is totally on the program, pro-LDN, pro-desiccated thyroid, pro-supplements, right up my alley. I am so excited and relieved to have found someone for once that is on the same page as me! I walked out with the scrip and will start the treatment tomorrow. I hope to report back some good results. I will update my signature.
Good for you redrock! Doesnt it make you feel better just having that kind of experience with a Doc? Just make sure you dont expect too much too son. This is a slow road to wellness. All the best to you. 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)Well, as a person who has very few symptoms but is told that I am very, very sick, I am hoping for an improvement in my labs, I guess that will be my litmus test 🙂
if you herx – and that may not be the case with SD – your labs may initially worsen which is all part of it, before they come down. So dont get spooked. All the very best as you embark on this. 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)Hi Redrock,
I'm really happy that your appt w/the AP doc went so well and that you're starting AP now. I also have Limited SSc and I've been on mino for just over 4 months with a lot of success, although it's still very early. I know that in most cases it does take awhile to notice improvement, but thankfully we started to notice some improvements in me pretty quickly. Here is a list of some of the top areas where I've already noticed improvement:
Brain Fog – this had been pretty severe for the last few months before starting AP. There were times when I was reading that I'd have to re-read the same paragraph multiple times because I couldn't remember what I had just read. It was reallllly frustrating and frankly, really scary for me! I noticed that this fog started to “lift” probably within the first month or so after starting AP and I only notice it now when I'm extremely tired.
Personality – I think most people would have described me as perky and out-going in the past. However, as the fatigue, brain fog, digestive and other problems progressed so rapidly over the last few months before starting AP, I become very quiet. I knew what was happening to me and yes, I was scared, but mostly I just didn't have the energy to be myself anymore. I wasn't happy about all of this, but I really don't think that I was depressed either. Thankfully, I've never really been subject to depression. I was just sick and really exhausted. Anyway, within the first couple of weeks after starting AP, my husband and kids commented that I had a “sparkle” in my eye again, although I didn't think much of it at the time. In fact, I kind of thought that it was just hopeful thinking on their part because it was so early in treatment, but then my best friend of 40 years said the same thing a month or so later. Now she and my husband both say that before AP they felt like I was just disappearing, but that now I'm back. Now this may be a good or bad thing though depending upon who you ask and when. :roll-laugh: This last Sunday my husband and I were bathing our dog on the deck with the help of our 17 y/o son when I got a wild hare (or is that hair? :?) and sprayed my husband with the hose (warm water) until it erupted into a big water fight. Our poor son was looking back and forth from his Dad to me with this look like “Eee gads, they've lost their minds!” Doncha just love it when the kid is the one behaving like the adult? Anyway, we had a blast and it was so nice to be playful again (even if I did conk out in the recliner afterwards, LOL). So yep, I'm baaaack! 😉 :roll-laugh:
Dizziness & coughing – these issues had worsened from August '09 to April '10. I was last checked for PH in September '09 and was told that everything was ok so far, but that they were suspicious and needed to watch it closely. Granted, I should have been back for a recheck in March of this year, so I'm very overdue. But I didn't have the energy for another out-of-state flight to be checked and I felt that getting started on AP was more important at the time, so I flew there instead. Anyway, I almost never cough now and I usually only feel dizzy now when I'm really tired. So I really think that whatever was happening, is much better. I'm hoping that by the time I get off of my duff and travel for a pulmonology recheck that the AP will have had time to work on anything that might have been starting to be a problem. Besides SD I've had my hands very full with tons of family issues. So delaying the pulm. recheck might not be the best approach, but I've had to pick my battles this year, and starting AP was my highest priority. In any case though, I'm feeling much better in this area, too.
Some GYN issues – that I won't go into, but suffice it to say that despite a bunch of tests, the doctors didn't know what was causing these problems. A very smart lady (who I'm betting will know who she is :D) told me that these might go away after I started AP….and so far, they have! Knock wood!!! 😉 Personally, I'm guessing that the anti-inflammatory properties of mino might be the reason, but who knows?
Slow-to-nearly-stopped digestion – this had become a huge problem for the last six months before starting AP! My digestion was slow to the point that I would become miserably bloated. Then the stomach cramps would wake me out of a sound sleep and double me over on the way to the bathroom and lead to either diarrhea, vomiting or both. Agh! The daily reflux was much, much worse back then, and the nausea was almost constant. It got to the point that I'd stop eating sometimes for a day or so at a time when I felt that I was starting to bloat to try and avoid this miserable pain/vomiting/diarrhea cycle. Sometimes it worked, and sometimes it didn't. I'm sorry if this is TMI, but I don't know how else to tell you how bad it had become. At the doctor's advice, I tried Metamucil, flax seed, truck loads of prunes, etc. Basically tons of fiber & fruit, but nothing seemed to help and some things just made it worse. I was just about to break down and try Reglan, even though I was really afraid of the potential side effects of that med. Now the good news? I noticed improvement in this within the first 1-2 months after mino and I'd say that it's at least 75% better now. A huge blessing!!! I'm back to taking normal digestion pretty much for granted now (although I certainly haven't forgotten!). My AP doc thinks that the probiotics might be what is normalizing my digestion, but I tried skipping my daily probiotic a couple of times (a big no-no, I know!) and I still think that the mino is the main factor in this improvement. Especially since I take mino MWF and by Saturday night/Sunday morning of each week my digestion is slowing back down again, but it improves on Monday or Tuesday after the mino starts again. I do take the probiotic faithfully though now to avoid any possible yeast problems. I almost forgot to mention that I went totally gluten-free in February hoping that it would help this problem, and also because of what I'd read here about GF diets helping AP. I did notice some small improvement after going GF, but the big improvement was after starting AP. I am still GF though. I have 3 kids and a husband that mean the world to me and I intend to be around for the long haul, so I'm going with Kim's “Whatever it takes” approach! :). (Thanks, Kim!) Even if it means that this life-long vegetarian is now GF, too. Drat!
Energy – I still take a daily nap, but now I'm not dragging myself around like the walking dead before my nap. Once in awhile now, I do skip my nap and although I'm tired, I'm not so tired and in so much pain that I almost can't move like I was before. I know this is vague, but I can really feel the difference and I'm so thankful. I remember the first year after my dx and after being told by a professor at a major medical school that there was no cure and “no treatment that we've ever tried has helped”, praying that even if nothing else could improve, I'd be so thankful if I could just get some of my energy back to finish raising my kids. Well, it's better now. I'm no where near normal energy levels yet, but it's already improved and I am so grateful for that. (Although that water fight was getting close…LOL!)
I've never had any real skin changes (highest score was a 0-1 on one finger, as I recall), but I've had lots of internal changes over the last 3 years. Everything from what was listed above, to pain & tightening in the tendons, ligaments and muscles in my arms, legs, ribs (really painful whenever I sneezed, coughed, twisted, etc!), back, neck, hips, pelvis, etc. Most days I feel like the pain has lessened now in all of these “old” areas, although I am still having some new progression in my hands, feet and in one hip, too. I'll be talking to the AP dr about this very soon and I'm hoping that the dr agree to increase my dosage or something, to try and arrest these new developments, too. I'm hoping to get these under control before they do any more damage. For me the areas that have been affected for the longest, have been the most pesky about responding to the AP. So since these are new, I hope that they'll improve quickly with maybe some increased meds. Bottom line is that it is still early days for me and I still have a long way to go, but I've had big improvements in some areas already and I'm really hopeful now that it's going to continue to get better over time. I just wanted to share this in hopes of encouraging you as you start your treatment. You may notice some herxing (I had a little), some headaches, dizziness, nausea, etc. (I did), but they've all improved dramatically over the last few months. As everyone says, AP is not an overnight fix, but instead of sliding downhill steadily like I was, now I'm on my way back up and that's huge. Considering that I was told LSSc was a progressive and incurable illness, even if I just wasn't getting any worse, I'd be happy. But instead, I am getting better and I'm beyond thrilled and so thankful to everyone here who have posted their experiences that I've read and learned so much from; to Cheryl for her hours of help and support by phone; to Kim, Maz, Lynne and the other volunteers who've helped me out with so much info; to my AP doctor and the wonderful people in that medical office, and to my husband and best friend who prayed for a cure (even though I told them that the drs had warned me that there was none), and then pushed, prodded and encouraged me to get off of my duff, “stop researching and just start AP for Pete's sake already” once we'd heard about AP. 😀
I'm sorry that this is so long, but it's long overdue that I should take the time and energy to tell everyone here a huge thank you! Redrock, I hope that I have been able to give you maybe even just a little of the encouragement that so many others have given to me. I'll be hoping for lots of success for you, too. Please keep us posted on how you're doing.
That's great news, Melinda and very encouraging to me. Regarding probiotics, do you take them 7 days a week or just the days you are doing AP?
I started yesterday and watching for the dreaded “Herx” effect although I have to say that if I don't get it I might wonder if it is working, LOL, having read so much about it.
I am praying that this AP treatment results in improvement in my pulmonary pressure. I have mild PH, very few symptoms so to speak yet have seen an improvement since I increased my LDN. I really don't want to go on PH meds due to their expense and possible toxicity. I am so hoping that the minocin knocks out the collagen or whatever it is that is messin' up my lungs!
Hi Redrock,
Yes, I take the probiotic 7 days a week. I take it just before I go to bed at night. Regarding herxing? I understand that for some reason, it's usually much more of an issue for people with other rheumatic conditions than for those of us with SD. But, I do notice what I think may be mild herxing sometimes, although it hasn't been a real problem though for me. I deal with daily pain from the SD anyway (and I seldom take even an NSAID because my stomach is so touchy), so it's been ok. But I sometimes notice more SD stiffness and pain on Mondays and Wednesdays and much more comfort and flexibility on Thursdays through Saturdays. I assume that this is because of the MWF pulsed dose and the two days off over the weekend, but I don't know. I'm sure that someone else here will have more info, but I have a hunch that even if we SD people do herx, that it just isn't as severe as other people experience, but that just my guess. Anyway, don't be surprised if you do herx. Conversely though, don't be discouraged if you don't. If that makes sense? It's a process that takes time and most of us are really anxious to see results. Some good advice that I read here about staying encouraged while we wait to see improvement, was to make a list of your symptoms before you start AP, because we tend to forget how bad it was before we started. That way we can look back clearly at any progress that we've made already. I'll also be hoping and praying that it helps with your PH. I know that I've read here that other's have had improvement in that area, so that's really encouraging! Hang in there, it takes time, but you've started and that wonderful!
Melinda
redrock, Melinda and all, this is an old post of Henry Scammell's (yes that Henry!) that I found from 2005 and posted a while back. It includes some reflections on herxing and the differences (for those who accept the infectious theory) between people who have RA and SD.
Why Dr Brown was a Lumper
Posted by Henry Scammell on Sun – Aug 14 – 5:40pm: 2005
Tom Brown was a lumper, not because of the politics of the time or arbitrarily, but solely because he saw thousands of patients getting better on antibiotic therapy and he figured they were all improving for the same set of reasons. But the recent exchange on this topic contains a couple of misaprehensions. The concept of lumpers/splitters is particular to RA, and does not include the other connective tissue diseases such as lupus, fibromyalgia, scleroderma, etc. – although certainly Brown recognized that they all had a lot in common, especially their responsiveness to antibiotic therapy. Lumpers use the term rheumatoid arthritis generically to include all the inflammatory forms of arthritis (I think there are 106.) The rationale for this is simply that rheumatoid means inflammatory. Because Brown was virtually alone in using antibiotics for any of those forms of arthritis or for the other connective tissue diseases up to the time of his death, in those days whether a rheumatologist was a lumper or splitter had nothing to do with the AP or the infectious theory. In fact, lumpers and splitters alike held Brown, the theory and the treatment in low regard and often in contempt.
Today the question of lumpers vs splitters has become even more politicized because it has obvious implications for the infectious theory and, to a lesser extent, the efficacy of the AP. Some 17 years after Tom's death, the theory remains unproven. More happily, the AP has been accepted for use in RA (splitter's definition) by the USP and the Arthritis Foundation – although it has NOT been approved for most of the other 105 inflammatory forms of arthritis. So today more than ever,the distinction is a critical one. If your doctor is a lumper and he believes the USP or the Arthritis Foundation,chances are good that he'll treat whatever form you have with minocycline (which was available in Tom Brown's time, by the way, and which he used – we refered to it as tetracycline because that's what it is.)
An apparent subsidiary to this issue is the JH reaction – doctors who doubt or reject the infectious theory obviously don't believe their RA patients ever herx on the AP. Conversely, most doctors who do believe in the theory believe they can tell the difference between the JH reaction and a conventional flare. As for scleroderma, it's not inflammatory, so obviously the herx, if there is one, would not present in the same way as in RA. I don't know how a scleroderma patient would know whether he has ever had a JH reaction, or how he could be sure that he has not.
Some years ago, about halfway between the time we wrote The Road Back and today, I updated our effort with The New Arthritis Breakthrough. As anyone who has read that book knows, it owes much to the helpfulness, insights, courage and cooperation of David Trentham . When we sat down to discuss that update, David commented that it was unusual that in the several years since Tom's death, not a single statement in The Road Back had been proven wrong or false. We both knew we had leagues to go before the day when it could all be proven true.
One last thought on the recent exchange: I don't know how many of the RBF board believe in the JH reaction, and although I assume it is most or all of them, I could care less. As a loyalty test for supporters of the infectious theory, it's meaningless.
Okay – yet another last thought:it's wonderful that RBF has so many good people who are willing to share their knowledge and experience and love of their fellow man, especially in the forum of this lively bulletin board. We now get something like 45 MILLION page hits a year on this site,and I'm certain most of those visitors look in on this running dialogue. Many, many thanks for all you do – whether you agree with each other or not. Keep on sharing. And keep on loving.Also, on our main site, there is this statement:
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html
“(Scleroderma patients who do not exhibit inflammatory components to their disease generally do not report a Herxheimer of clinical significance.)”
In other words, those who do herx may have an overlap of of other rheumatic disease. 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)Redrock,
SO happy to hear that you found a doctor who embraces AP, and that you have started on your journey to wellness. I wish you all the best, and know that we're here for you every step of the way:D
Maria
Lynnie, I'm really surprised it says that sclero is not inflammatory as I always thought it was. The precursor to my diagnosis was a horrible bout of iritis (inflammation of the iris) and at the time my sed rate was pretty high. Anyway, I am waiting to see if I will herx or not and will let you all know!
:crying:Hi my name is Maryanne(Mac) I am new here and could use some friends.Ever since I was a child my body had hidden things, appendicitis,dead gallbladder,dead colon, etc. My tests show perfectly normal which has brought me to deaths door many times. I found a good doctor many yrs. ago who diagnosed my with systemic lupus-stage 3. Unfortunately I no longer have him because of loss of insurance. I'm sorry I don't mean to radlle on. It wasn't until I met my fiance that I learned little about ap therapy. You see he has been diagnosed with Lupus and scleroderma. We have got him started but with me it is harder. Infections are flaring up, pain is almost unbearable. My only help is my nurse practitioner.Any advise? I am usually the inspirational on but it is tough right now.Battling for two.
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