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| HI FROM PIP IN
USA ! My PRA started 3 weeks after I had an abscessed tooth extracted in 11/04. I even went back to the dentist and said "What the heck did you do to me?" He said it wasn't him so he sent me to the hospital to have a CAT scan to see if I had a fish bone or something else esoteric stuck in my salivary gland. The CAT scan doctor said it wasn't a fish bone but if I had any other autoimmune reactions, come back and see him. My husband and I thought he was a nut. Little did I know the connections between autoimmune diseases and dental work. The pain in my salivary glands went away and I was OK for 6 months. Then I had an ‘attack’ in my shoulder. Six months after that I had another ‘attack’ in my knee. Six months later it was my big toe and the doc's said 'gout'. Then it switched to every month and was somehow connected to my monthly cycle. Nobody could figure out what was going on. When they finally said ‘early onset severe’ PRA, in March of ’06, I was like, "No way do I have this incredibly rare disease". I kept going back to the tooth extraction and they kept saying it was a coincidence. My husband and I could not believe that this just came on. We kept arguing with the docs and asking for more tests. I wanted to be tested for Lyme because it can mimic arthritis. My husband got diabetes, my brother got a rare spinal infection and I got PRA around the same time after vacationing together on a cruise. How likely was that? I also went to an infectious disease doc who said this could be viral in origin. And a neurologist. Yet nobody would consider the tooth as the ‘inciting incident’. I have a friend that I trust, an OB/GYN, and told her I wanted antivirals to deal with this because of a scientific report I read about curing severe early onset RA in Belgium with AZT. She told me if it wasn't viral, if it were bacterial, antivirals wouldn't work. I immediately decided to do both. Can you tell how freaked I was? I was out of my mind with pain and worry and my daughter was a 5 year old little girl who needed me. I was desperate! Beyond desperate! In normal RA the RF factors are 0-15 and severe cases are 16 to 30. My RF was 706 in August of ‘06. I had to do something! It would take me two hours to get up the nerve to go upstairs and shower. Then I would take a 20 minute rest on the bed before making the trip downstairs. I was so bad I had a walker in the bedroom so I could use the potty in the middle of the night. My husband and I were both terrified. What the hell was going on?!?!?!?!?!?! And the docs! It looks like RA but...this is unusual, and that is unusual until they finally figured out it was Palindromic. That's how I ended up finding the info - endless net surfing. I had nothing better to do. Nothing better I COULD do - so I'd go between my 'smoking section' in the garage and my computer in the nook. (Please don't berate me on smoking - I'll be quitting soon). And mind you, when I went down with this, it was only 4 months after diagnosis that I couldn’t walk at night. And only a month later I had to use a wheelchair for the flight out of state to see my soon to be new AP doc in August. So I started researching RA and antibiotics and/or infection. I kept hitting the same thing. All the main sites, the reputable sites, The Arthritis Trust, the Arthritis Foundation, the National Institute of Health, said the same thing; autoimmune diseases were thought to be started by viral, bacterial or environmental stressors. Then I started searching my ever rising RF with ‘over 400’ and then ‘over 500’. Eventually I found a group of people that believed like I do, that these diseases are started by an infection that the body doesn’t seem to be able to ‘throw off’. They treat their PRA/RA/Lupus/Scleroderma with low doses of antibiotics to get a remission. At first I thought I’d found an RA cult and even told my husband to come look at what these guys think! And when you first get there, it does seem like they’re all speaking Greek or something. IgG, IgE, Celiac, strange comments on minerals and vitamins and Lord knows what else. So, I lurked and lurked and eventually learned. One day, after a few months, everything just sort of clicked and all made sense. I joined the Cult. I joined the Roadback. Best move of my life. Dr, Thomas McPherson Brown developed the infection theory of autoimmune diseases. His work is detailed in the book, The New Arthritis Breakthrough by Henry Scammell. If you’re interested, it’s available on Amazon. I tried to find a doc that did the Antibiotic Protocol in my state, but couldn't. I approached 5 doc’s who all said ‘it doesn’t work’ in one way or another. So, not being able to find anybody local to monitor me on the Antibiotic Protocol, we decided to go to the USA and see the top AP doc in the field. He told me PRA is usually started by an infection and he could help me. He ran a bunch of tests. I was like, "Take as much blood as you need!" I tested positive for the strep mycoplasma and as I had strep throat infections every winter as a child, I didn’t have a problem believing the test results. LOL According to my research, all of this is related. My personal theory is that the body gets overwhelmed by something, maybe some stress or recent infection or something, and cannot handle the 'fight back' it once could. Antibiotic therapy states that if could be something you had repeatedly in the past and now it is lying dormant in your body waiting for a chance to reactivate. Like my strep. The problem with these mycoplasma is that nobody much believed in it until Dr. Marshall in Australia was able to grow some of those that caused ulcers (h. pylori) in a Petri dish (then drank the concoction down and gave himself a serious case of gastritis). Within the last decade researchers developed these new Darkfield microscopes that are strong enough to see these things. Little critters that take up residence in the white blood cells like just like TB and leprosy. So, long story short is - these L form bacteria, or cell wall deficient bacteria, or mycoplasma, have been linked to just about everything. From Alzheimer’s to ulcers, from MS and ALS to heart disease. I can go on and on for hours about this stuff - and most people can care less about it - so sayeth my hubby. If the 'little critter' theory is right, then I didn’t want to suppress my immune system any more with the traditional immunosuppressent drugs. And even tho my RF factors were sky high, my doc said it was proof that my body was still fighting back. This doc ran all the x-rays my usual GP and rheumy refused and as of now I have no permanent damage to my hands and feet. August of ’08 will be my 2 year anniversary on AP. I have my life back. I boogie boarded last summer. I’ve ice skated. I can mall crawl with the best of them again – which is good because my 7 year old daughter likes to shop! I still haven’t hit remission yet – my RF is stubborn and needs more tweaking (AP doc added in Zithromax on October) but I feel ‘normal’. I don’t feel the PRA moving around my body anymore. I don’t even get ‘the nigglers’ or any of the ‘lurkers’ anymore. Now, my plan is to work on the healing the gut so that when I do hit remission, I can trade that in for the ‘cure’. My friend Pat is willing to teach me all she learned about natural healing so that I can eventually go 'medicine free'. And that means - we're cured! Hugs, and welcome to PRARIS.
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| HI FROM MAZ IN AUSTRALIA ! My name is Maz and my troubles started with a broken ankle and subsequent infection, here is my story. I broke my ankle 29 Nov 2006, Tibia & Fibia. I was operated on 30th Nov, plates & screws in; released from hospital 3rd Dec; 8th Jan 2007 had the cast off, no problems, no infection, nice and clean. 10th or 111th Jan 2007 went for a swim, one swim (about 100 yards) in the Murray River. 2 days later my first PR flare (although I didn't know it) swelling on the back of my right hand near the index finger, really sore and it lasted 2 days and went away. 14th Jan 2007 on the way home from Xmas holidays I noticed my ankle was inflamed and sore, my husband took me back to the hospital that night – the immediate diagnosis was a severe infection, they started me on a course of intravenous broad-spectrum antibiotics and swabs were taken, the diagnosis was inconclusive and the swabs were taken again and sent to the infectious diseases hospital. Their conclusion was I had a ‘severe staph infection of unknown origin’, definitely not golden staph! The only thing they could do was to continue with the intravenous antibiotics 24/7, delivered through pic line, until Easter (trying to give my bones time to heal). Between Jan & Mar had another 2 PR flares, just my hands again. Then when I went into hospital to have the plates & screws removed unexpectedly both hands flared (and on a scale of 1-10 on the pain threshold my ankle was a 6-7 and my hands were a definite 9!). I had every test known to mankind because they thought the infection was spreading (although I didn't spike a temperature at any time). Anyway to cut a long story short I had the plates & screws out 2 days before Easter 07, came off the antibiotics in Jul 07, so my ankle was great, but my PR had started to take off. Between Easter 07 & Nov 07 I was getting flares every 5 wks, lasting for 3 days of excruciating agony. The flare site could move quickly as well eg: I could wake up with a flare on the back of my right hand and within 2 hrs my hand was OK and it moved to my right bicep, by dinner time my arm was OK and it had moved to my left thigh... strange thing this PR. Even my GP couldn't believe what was happening, although he did see it for himself over a period of 4 hrs where it went from my hand to thigh to arm & back to other hand.. He said 'if I hadn't seen it for myself I wouldn't have believed it'..... How true! In Nov 07 he sent me to a rheumatologist who said 'You have Palindromic Arthritis. How do you feel about taking medication that may make you go blind in a few years', and that was before he said hello! The 2nd rheumatologist I saw said 'I have no idea what to do, you have Palindromic Rheumatism, but the bad news is we don't know how you get it, so we don't know how to fix it'. The 3rd rheumy said 'you have Palindromic Syndrome and it is a rare arthritis. She explained in great detail what she thought it was and what I should take to try to alleviate the symptoms, ie plaquenil, methatrexate etc and also said that the normal inflammatories & pain medications don't help that much if at all. When I asked why I should take the medication she said there seemed to be a train of thought that it would probably delay the onset of RA (even though my blood-work showed negative for everything at that time). Me being me, I refused to take anything and went on the net to find out for myself what Palindromic Syndrome or Palindromic Arthritis or Palindromic Reheumatism was. I searched and searched, finding people along the way who were pointing me to seek alternatives to the norm....including Pat who told me about diet and Pip who mentioned AP and finally when I was really into researching 'Antibiotic Therapy' through the RoadBack website someone contacted me by email and told me about a doctor who's surgery just happened to be about 10 min from where I lived. I went to see Dr D and the 1st appt took an hour - the 2nd appt took another hour, lots of blood-work done more medical history, and she was very interested in the fact that I reported I hadn't had any of the normal childhood illnesses, ie measles, chickenpox etc - the 3rd was when I gave her a full history of everywhere I had been in the world, all the animals & had been in close contact with, what illnesses I ever had, what operations I had undergone etc. The tests were back and she concurred that I hadn't had any of the normal childhood illnesses, which she felt was unusual. She told me about a gluten free diet as well as trying to cut out a lot of other things like 'pork, nuts etc etc' and like suggested I drink at least 3 litres of boiled water a day to detox. She said, given my history, it was entirely possible that I had picked something up in my teens or 20's. She believed it was dormant lying in wait for the right conditions to present itself (her guess was the infection I got in 2007). She told me to make an appointment with a naturopath she consults with and come back after I had seen her. On Mon 26/05/08 had my appt with the naturopath and she after a long consultation found and identified a couple of types of bacteria lurking in the background that we needed to get under control one of which was Ricksettsia (caused by a tick that attached itself to me for 2 wks before I found it when I was 8mths pregnant with my 2nd child). Since I started watching what I was eating & drinking I have only had two minor flares that lasted just under 24 hrs - 2 flares in the past 5 mths, that is a record for me. So I continue to watch my diet, detox regularly and have recently started AP therapy in an attempt to get my PR into remission..... Even though I only started searching for all the information I could find on Palindromic anything since Feb 2008 I have learned so much over the past 5 months ---- I have only just finished reading The New Arthritis Breakthrough, Henry Scammel; and I can tell you I couldn't put it down, it is definitely worth the read. Whatever path of treatment you choose, always try to make an informed decision. Remember medicine is not an exact science. Medication and treatment can always be tweaked to suit the patient. Give it time and don't expect a miracle, but remember it doesn't have to be as bad as you think. There are always good people around who are willing to listen to you. Good luck,
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| HI FROM PAT IN NZ ! My Name is Patricia (Pat) and I live in New Zealand. I am a very young 59 years and have been married for 40 years- we have 3 children and 9 Grandchildren. They all live close by. My Husband Paul has been an amazing support for the last two and half years- he has certainly stood by the vow "In sickness and in health!" I have had Palindromic Rheumatism since January 2006. The travelling unpredictable pain and other side effects associated with PR affected my lifestyle and consumed my thinking and my whole being. I soon became someone who I did not want to be! My local GP did not know what was wrong so prescribed me Anti-inflammatory medication that made me worse. I was (after three months of pain and confusion) referred to a Rheumy who diagnosed PR and outlined some of the medications I could use. He suggested that Diet changes may help. I then visited a Naturopath and decided to choose the "Holistic" approach to heal myself. (Prior to January I was reasonably healthy- The Naturopath told me the PR was caused by a virus or bacteria!) I started feeling so much better in November , 2006 and would like to share my journey with others. (I still continued to have some minor flare ups but felt so much healthier within myself which was very exciting.) I now have had very little side effects such as the brain fog, depression, dry eyes, and have energy, and can think clearly. Now my story up to July 2008- Since getting PR in January 2006 I have..... Detoxed, de-wormed (and parasites) de-virused and de-stressed (Tried to)!!)(Cannot put the cart before the horse- so complete detox is important) It all took time. I spent a the first year resting as much as possible and during this time and reduced my hours to part time- this was a complete change of life for me!! I used to be a busy person who got busier when I had free time! I had body balances (Reiki or Bowen) and healing and or massage about once a month. First off I eliminated Citrus Fruit, Alcohol, Sugar, Dairy, Tomatoes, Potato, Peppers, White Flour from my diet. I also drank at least 1.5 litres a day of mineral water. In October 2006 I altered my diet (working on healing and supporting the GUT) and this has helped Heaps! I am now Dairy, Wheat, Gluten and yeast free and always aware of eating as many Alkaline forming foods each day. I eat mainly vegetarian foods (tofu, sprouts, beans, chick peas, lots of vegetables and salads) fish, nuts, seeds and only drink herbal teas (always did) - ginger root sliced is good- and so is parsley. I make this in a thermos and drink it throughout the day. I still eat some bread and biscuits (gluten and yeast free) have crackers (rice ones) and use Manuka honey as a sweetener. I have an occasional glass of red wine with a meal. I avoid any sweet drinks. I am not a coffee or chocolate drinker so this has not been missed. I drink fresh vegetable juices at least three times a week. It takes a bit longer to shop for food (reading the contents labels) but it has been all worthwhile. I am taking - Glucosamine with MSM. Omega oils, Colostrum, Concentrated mineral drops-a mixture of all essential minerals. Digestive Enzymes Herbs (Celery Seed, Devils claw, Cats Claw, Echinacea, Boswella, Rehmannia) For pain management I take Panadol (Panadine) The Herbs are Practicioner strength herbs prescribed especially for me by a Doctor who has an interest in Medical Herbs- and these will be taken long-term or until I am completely better. My Rheumatologist fully supports my chosen treatment and is showing an interest in what I have done to my road back to improving my health. I do not need to see him any more but he says I can contact him if I need to! (I totally avoid any prescription Anti-Inflammes as they effect my gut and this will only delay the healing process) It all takes time, patience, self discipline and willpower.- contributes I haven't always had but I have learnt in one hell of a hurry since PR hit Me! It is worth the discipline to be pain-free! Pip's support on her own road back to healing with AP and her informative postings about Auto-Immune diseases starting in the "Gut" have given me the determination and drive to take the road I am now on. Finding a local Doctor/Herbalist who all supports this has been a bonus! We had a very long cold wet winter last year and I had a few minor set backs from August to November 2007. This was frustrating and I started thinking that I was not going to improve! Now it is July 2008 and my health continues to improve and I have been almost totally Pain-Free for seven months. I am happy to share other details about my "Journey towards healing" with anyone who would like more information. Happy Healing,
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| HI FROM ALICINDA IN
THE USA ! I'm 54 and was just diagnosed last November (2007) with PR. I am sero-positive, but my doc feels my symptoms are "still PR, not RA". I'm really not sure exactly when my PR started, but I know it was at least 2 yrs ago. For many years I've had osteoarthritis and of course any aches or pains are attributed to the osteo getting worse. I think the initial symptoms started in my feet and knees. There were times that my feet would hurt so much it was hard to walk. My feet/ankles would hurt for a few hours or days and then all would be good for a few weeks. Other times it would be my shoulders, or my wrists, or fingers. Initially I had little swelling and no redness, no matter what joint or how severe the pain was. Since I didn't have a primary care doctor (PCP), I didn't do anything about the pains for several months....until my shoulders really flared up. Both shoulders, over a matter of a few hours, became very painful and any movement made it worse. I could lie on my shoulders (I always sleep on my side), but the least movement sent sharp pain down my arm. I went to see an orthopedic specialist about my shoulders and was diagnosed with bursitis. The day I saw the doc my pain was only about a 2 or 3 (not the 7-8 it could get to!) and I could freely move both arms. I had an ultrasound done and, since there was nothing abnormal seen, the doc declared that he was right, it was bursitis! (HUH?) The only treatment offered to me was cortisone injections, which I refused. After a few months the shoulders suddenly were back to normal. If this was bursitis, it was certainly atypical! A few weeks after my shoulders improved my ankles started to hurt. Most of the time it was just a bit painful to walk or move my feet, but every once in a while they would ache enough for me to take an over the counter (OTC) pain med (Acetaminophen, ibuprofen, etc), but got little relief. Again, I ignored the ankles.....I was still overweight (obese, bordering on morbidly) and figured with my age and weight it wasn't surprising that my ankles hurt....but wondered why there was no relationship between the amount of pain and the amount of walking I did. One day last March (2007), my right ankle started to hurt and within a matter of hours it was so painful I could barely walk. Since I still didn't have a PCP, I went to urgent care and was told first it was gout, then it was "just an injury", even though I was positive I hadn't injured it! I was given a prescription NSAID (non-steroidal anti-inflammatory drug like ibuprofen) and the pain, swelling and redness was gone the next morning...completely! Either that was one heck of a medication or something else was going on. This was the first time I noticed redness and swelling of a joint that was hurting....but it wasn't the last. Most of the time, if I get redness and swelling it's one of my fingers or my wrist. My shoulders and knees will be hot to the touch, but no redness and little swelling. About 3 months after the ankle incident I finally had my appointment with my new primary care doc (PCP). This is a doc I've seen in the past, but had to go elsewhere because of insurance. I liked him, and after going to 3 different docs and not being happy with any of them, I decided to try this guy again. Initially he wasn't accepting new patients, but after a few months I found out he was and was able to make an appointment. Of course the day of my appointment nothing was inflamed, so my doc told me to call for an immediate appointment the next time i had something flare up. About 2 weeks later my right wrist and index finger flared up and I was able to get an appointment. My doc looked carefully at my hand and wrist, declared I needed to see a Rheumatologist and ordered some blood work (Rheumatoid factor, sed rate, etc). When I went to the rheumy I again had no symptoms, but he listened to me and diagnosed me within a few minutes. My rheumatoid factor (RF) was positive as was my Anit-CCP. Inflammation markers (CRP, Sed rate, etc) were normal or very close to normal. I don't have any nodules. My pain varies...one day it may just be a twinge or stiffness in a joint or two....other times it feels like I've been beaten. Sometimes the pain lasts for just a few hours, other times it lasts for days or weeks. Most of the time I have no redness or swelling in the joint that's bothering me. On the recommendation of my rheumy (after I told him I didn't like the idea of the newer RA meds), I've been taking Doxycycline, an antibiotic, I started the Doxy in January, and I think I'm getting good results, but I'm told it's too soon to tell if it's the Doxy or I'm just in a natural remission. I think it's the Doxy as the amount of joints involved and the amount of pain is MUCH less that what I'd had prior to starting it. I am also trying to stick with a natural unprocessed diet that is low in carbohydrate, but lately that hasn't been going too well. I've had a lot of stress over the past 8 - 10 months and I'm a stress eater....and of course it's always the food that are the least healthy I reach for. I take probiotics and am going to look into digestive enzymes to see if they will help. Unlike others, I have no real idea of what might have set my PR off. I've had plenty of infections, including urinary tract, intestinal (diverticulitis), and respiratory, but cannot link any of them to the onset of my symptoms. But, I firmly believe the theory that this is a latent infection, so will continue to use antibiotics to treat it. If one doesn't work I'll try another....and only go for the "heavy duty" RA drugs if all else fails. Maybe I'd feel differently if I had joint destruction, but at this point I am taking medication to relieve pain and inflammation. Welcome to Praris! |