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  • #460333
    Jamie
    Participant

    Thank-you for allowing me to be a part of this forum. I posted this a day or 2 ago, but recently learned that the Road Back site was down, so hopefully I’m not repeating this post. I am in the beginning stages of all of this, seeking out a doctor who might help. I felt the easiest way for me to share my journey was to copy & paste the letter I sent to Dr. R. S. (recommended doctor from Road Back) and cc’d my family doctor in the letter. I’m sorry this is lengthy, but I must wonder how much of this can be connected like a dot to dot puzzle. Again, thank you for allowing me to share!

    Dear Dr. S,

    My name is Jamie Hamilton. I am a 52 year old wife and mother of 5. I am a certified personal trainer and a owner/coach of a USA swim team in the city of St. Louis. I am a very active lady, but I am in need of help. I was given your name and contact information per the Road Back Foundation. If you would please be willing to take the time, here is my story:

    Approximately around 2005, I began having problems with pain above a upper left molar. I made an appointment with a dentist friend of mine. He took x-rays and examined the tooth and found nothing abnormal about it. He referred me to a otolaryngologist at SLU to see if maybe something was happening in my left sinus cavity. Upon more x-rays and a sinus scope, the doctor had reason to believe that there was a cyst or tumor in my sinus. I agreed to surgery in which the doctor, thankfully, found nothing. The strange toothache type pain persisted after the surgery and I returned back to the dentist. After a couple rounds of antibiotics and temporary pain relief, the dentist presented the option of a root canal. Desperate, I agreed. The root canal was performed and sadly, the aching pain returned. Every Time I would see the hygienist/dentist and mention the discomfort, I was told that having pain was impossible because the nerves had been removed. Honestly, I felt like I was going crazy – like maybe this was all in my head, but I just knew it wasn’t. After a while, I just learned to deal with the pain.

    In 2007, I began a weight loss journey. I started the journey out at 260 lbs. I was miserable and knew I needed to make changes in my life. The truth is, I hadn’t always been overweight. I had always been a very athletic person and an avid competitive swimmer. I had huge dreams of swimming in the Olympic games. But like most of us, life has a tendency to sweep you away and bad habits became the norm. Before I knew it, I had put on tons and tons of weight. My weight loss journey took 4 years. In that 4 year time period, I lost 115 lbs! I began a habit of exercising daily, lifting weights and eating more sensible, healthy meals – nothing radical, just more of a life toward healthier living. I took my lifestyle change and became a personal trainer. I was also contacted by a local YMCA to start and build a swim team program. I was so honored. In addition, I began to swim competitively myself with the US Masters Swimming program. I traveled and competed, winning many awards. I also took up running which I never liked to do. I ran in the the Forest Park Frostbite series races and took 3rd place in my age group! I never felt healthier and more alive. My husband saw the changes in me and he began his own journey losing weight and eventually pursuing long distance cycling. We both loved life. Our children were now all grown and we were enjoying being new grandparents to a grandson.

    Jumping ahead, in March of 2013, I began to notice that I was putting weight back on. It made absolutely no sense. Absolutely unexplainable. I was as active as ever and my eating habits were clean. I knew that menopause had set in, but the way I was feeling just didn’t add up to menopause alone. Besides continuing to experience the pain in and around the root canaled molar, I was experiencing some memory issues/foggy thinking as well as abnormal hair loss. While speaking with my mother about all of this, she suggested to me that maybe I needed to get my thyroid checked out. In recent years she had been diagnosed with hypothyroidism and maybe I was following suit. I followed her advice and made an appointment with my “then” PCP at SLU, my Ob-Gyn, and a endocrinologist. The appointment with my PCP was frustrating. When I tearfully shared with her my concerns, she questioned my healthy regiment, and hinted that I had fallen off the healthy living wagon. As you can imagine, I was quite upset after that appointment. This was NOT the case at all. She did test my TSH and reported back to me that my thyroid was fine. My Ob-Gyn was concerned and sympathetic, and she gave me the name of a endocrinologist to see. I waited almost 6 months to see this specific doctor, only for him to tell me that “eating 1000 calories or less would help eliminate the weight gain and my symptoms had nothing to do with hypothyroidism”. He never followed up with any blood tests and suggested that I get a sleep study done. Once again, I left upset and depressed. I knew I didn’t feel good and I sensed that something was truly wrong.

    As the months past, my weight continued to slowly climb – like I had no metabolism. Something had shut down. No matter what I did . . . exercised more, exercised less, changed my diet, more calories, less calories . . . nothing seemed to change. My hair continued to thin out, I was abnormally sensitive to coldness, and had no sexual drive. Sometimes my words would not come out of my mouth like I was thinking they should. None of it made any sense. In August of 2015, I woke up one morning and within an hour of being awake I was exhausted. Our typical morning routine . . . my husband and I would venture to the Y for some exercise. But, I just couldn’t function. I thought that maybe I was getting sick, so I headed back to bed. All day long I was tired and run down. This pattern repeated itself for 2 weeks. Finally, my husband, being very concerned, reached out to a sports medicine doctor that I had seen for a previous injury to my ankle. He was very concerned about my condition and saw me in his office right away. Dr. M. examined me and then felt that a battery of blood work was in order. When it was all said and done, the ONLY test that came back slightly abnormal was Rheumatoid Factor. My test came back as a 20 with a standard range of < 14. I was having a hard time believing this was accurate as I had never experienced any joint pain to substantiate this. Still, Dr. M. referred me to see a rheumatologist. The soonest I could get an appointment was in 6 weeks. While waiting for the appointment, the Dr. M. gave me a Medrol dose pack. All I can say is “WOW!” I felt so good and wonderful. But soon, the effects wore off and I was back on the couch, tired and depressed. A week before the appointment, I had my first joint issue. I woke up one morning to my fingers looking like sausages – they were hot, stiff, and swollen. Fortunately, there wasn’t a lot of pain.

    On September 28, 2015, I had my first appointment with Dr. H. B. My fingers had pretty much gone back to normal and he told me that he wasn’t convinced that I had rheumatoid arthritis, but he would rather call it inflammatory arthritis. He told me that it didn’t really matter as it was treated in the same manner. He started me on Plaquenil and ordered a bunch of blood work. All the blood work consistently came back normal – even the inflammatory markers. A short time after taking the Plaquenil, I had another flare up of my hands. This flare up lasted for a long time. He stopped the Plaquenil and moved me to Methotrexate. I did well on this for approximately 4-5 months and then I began to once again have consistent, unrelenting swelling and stiffness. It was at this time that I began reading a lot of books about RA. A number of books and medical studies that I read about was in regards to long term dental problems/infections and a rheumatoid connection. It wasn’t much past this that my husband and I were sitting at our dining room table playing a board game one evening when suddenly, the troubled root canaled tooth that had caused me issues for so long exploded within my mouth. I instantly had pieces of fragmented tooth and blood floating around in my mouth. I was so frightened. After the weekend was over, my husband contacted our dentist friend about removing the remains of the tooth. In a surprising twist, he refused to remove it. He told my husband that dentists do not like removing teeth because it caused problems in the future. He said that he would rather try to rebuild it. I refused because I truly felt that there was an issue “infection wise” with the tooth. After our conversation with our dentist friend, I was unsure what to do. We did not have any dental insurance and could not afford to have the tooth removed right away. As far as the rheumatology side of things, I was taken off of Methotrexate and put on Enbrel. Same story – early success with the drug, but my body quickly adjusted to it. He told me that he was concerned that my body seemed to adapt very quickly to the medications. All the while, I continued to discuss with him my gradual weight gain, hair loss, coldness, etc. He told me that he was sorry to hear about these things, but they had nothing to do with him and his specialty. After the Enbrel failed to keep things under control, he prescribed a drug called Xeljanz. After taking the medication for approximately 2 weeks, I felt horribly ill. I contacted his office and he asked me to get some blood drawn. I knew something was wrong when he contacted me just a few hours after the blood draw. He told me to quit taking the medication because my white blood cell count had dropped to an abnormally low level. So, I immediately quit taking the med and we moved on to yet, another medication – Orencia. After 3-4 weeks of injections, I was feeling much better, but like all of these drugs, I woke up one morning to the beginning of the stiffness, swelling, heat, and now pain. I called Dr. B. and he told me to continue taking the med and we would discuss the next course of action at my next appointment.

    As stated in the previous paragraph, issues with my weight/hair loss, etc . . . were really concerning me and yet, Dr. B. stated he couldn’t help me. I began doing some of my own investigating. I suppose if I have learned anything over the past number of years – it’s this: No one is going to care more about me than me and I am worth the effort! With that thought, in April of 2016, I began paying out of pocket for my own blood tests. I began reading information from an organization called Stop the Thyroid Madness. This is when I learned about how normal thyroid blood work may not always show a true picture of what was going on inside. I educated myself about Reverse T3. As I said earlier, I decided to order a total thyroid panel of blood tests. I found out that my Reverse T3/T3 ratio was very low and that normal would be over 20. I realized that this may account for why I was gaining weight – T3 not making it into my cells. After a lot of thought and desperation, I found a way to obtain Cytomel without a doctor’s prescription. I am embarrassed to admit this, but I just wanted someone to help me and nobody wanted to. After beginning the Cytomel, I began feeling a little better, but I began to be concerned that taking the medicine without a doctor’s oversight could lead to problems. My husband had started seeing Dr. K. K. and was very impressed with him. He encouraged me to make an appointment and confide in him about this. I was resistant at first, but I decided to give him a try. I was greatly relieved. He was never judgemental. He was compassionate and willing to look into how the Reverse T3/T3 ratio might effect my weight. After some time, he agreed that prescribing Cytomel would be appropriate. I have routinely had my blood tested and the values are rising. Unfortunately, I have not experienced any weight loss and I am still experiencing a fair amount of hair loss. I mention all of this because I just read today on the Road Back forum that the weight gain, Reverse T3 issues, and the like can be directly related to inflammation and infection.

    In March of this year, I learned about and made a visit with the Affinia dental clinic in downtown St. Louis. They cleaned my teeth and the dentist told me that the tooth in question needed to be removed. Although dentists did not like removing permanent teeth, this particular tooth was beyond repair. I told the dentist about the pain and problems I had had with it for many years. I also told her that I was concerned because I had been diagnosed with RA about 2 years ago. After sitting on a waiting list for 4 months, the clinic finally called me on Wednesday, July 5, 2017 and informed me that they had a cancellation for that afternoon if I wanted to come in and have the extraction performed. I agreed. The extraction came out in three pieces and an abcess above the socket accompanied the extraction. The whole procedure took about 45 minutes. I was surprised that I was not given any antibiotics, but I figured that the dentist did not feel I needed them. I came home and rested comfortably. As strange as it is, I woke up the next morning unable to walk. Every time I would try to stand up, a horrible paralyzing pain ran from my left buttocks down my left leg stopping at my ankle. It was the worst pain I have ever had – hands down! After a while, I was able to move around a little bit, but I mostly spent my time icing my rear end and sitting. On Friday, I woke up and the pain was even worse. I immediately contacted Dr. K. Dr. K. is wonderful! He told me that he could see me anytime Friday if I could make it in. Slowly but surely, I made it to his office in Kirkwood, MO. I shared with him the story of the extraction and he felt that I was dealing with sciatica. He gave me some meds and recommended some physical therapy. Because Friday nights were usually my RA injection nights, I decided to skip the injection so that the extraction would heal without complications. On Saturday, I noticed that I was having considerable discomfort with not only my back and left leg, but with the extraction site as well. On Sunday morning, I woke up early morning with a swollen gum line, shooting pains through my upper jaw towards my ear and up through my left temple area. I also had a strange taste in my mouth. My husband took me to urgent care to have my mouth looked at. Indeed, it was not normal and the doctor gave me a 10 day course of Augmentin. During the next 10 days, I did not take my Orencia injections, but I strangely began to feel better EVERYWHERE. No swelling, stiff, or painful joints. I thought I was dreaming this up. I began seeing a physical therapist who has helped me alot with the sciatic pain, but the antibiotic treatment was down right amazing. I began to do some more research, specifically about this phenomena. I was shocked to find similar stories about this. One thing lead to another and I ordered 2 books. One was called the Rheumatoid Arthritis: The Infection Connection and the other was called The New Arthritis Breakthrough. Honestly, I’m not much into gimmicks. The Infection Connection was a very interesting book with lots of medical stuff that peaked my attention, but the other book sounded kind of gimmicky to me . . . until I started reading it. I could hardly put the book down. So much of it seemed to be about me. About 5 days into the 10 day Augmentin treatment, I began to feel relief like I had never felt before. Sadly, about 4 days after I finished the Augmentin, the RA symptoms began again. On July 26, I had my follow-up appointment with my rheumatologist. He asked me how I was feeling and I told him about everything that was happening. I told him that I held off on the Orencia because of the abscess above the extraction. He told me that I had done the right thing. I reluctantly told him about my experience with the antibiotic and he told me that sometimes that happened. I then shared with him about my findings regarding antibiotic therapy with RA and how impressed I was with Dr. Thomas McPherson Brown’s theory and treatment plan. He looked at me and told me that antibiotics were a bad idea because it will just cause resistant strains of bacteria and that using antibiotics for RA was anecdotal. I encouraged him to check out the website http://www.roadback.com as I was very interested in this approach to my RA. I told him that I felt like I had nothing to lose. He mentioned to me that if he would agree to the antibiotic treatment, he would use doxycycline instead of Minocin because the side effects were much less. He told me he would consider it, but he really wanted me to start Rituxin infusions once the dental issue had cleared up. I felt a little hopeful about the antibiotic therapy, but he seemed to really be pushing the infusion with me. The next day, I had a follow-up appointment with the dentist. After examination, I was told that there was some concern that the extraction site was not healing as fast as they had expected. I still had a large hole in my gum and they felt it was going to take some time for it to close up and heal. I was told that taking the Orencia would certainly slow down the progress of healing, so it would be their recommendation to not resume the Orencia yet. In addition, I told them that I was concerned because I was still having intermittent pain above and down the jaw line – like in the bone. They took x-rays and told me that they didn’t see any evidence of infection. I came home and contemplated what to do. I decided to sit on things over the weekend. On Monday of this week, I sent an email message to Dr. B, my rheumatologist. On Tuesday, I received the following response from him:

    Hi Ms Hamilton, thanks for the detailed email and describing issues with dental healing.
    I understand that you are holding Orencia and just taking celebrex for now. Your arthritis is likely to worsen if you are not on RA specific medicine. Antibiotics do have an anecdotal role in treating inflammation, however I do not see that as a solution and there is no published data to support their use. In fact, antibiotic resistance is already a widespread problem. At this point, I recommend that you give your body a bit of a break but do ask your dentist if he would give you prophylactic antibiotic for dental problem. I am unable to justify antibiotic use unless I know what bacteria I am treating. Oral bacteria/ infection are more of dentist’ s domain.
    I will remain available to go over some other RA options including Rituxan (a 6 month infusion).
    Please dont hesitate to contact my office if you need more information.

    Upon receiving this response, I contacted the Road Back website for doctors in my area that might work with me and possibly implement this antibiotic treatment. This is how I received your name and address. In addition, I contacted Dr. K. regarding all of this. I am unsure of whether this is a treatment option that he is familiar with, but I told him that I would be writing you for help and sending a carbon copy of this letter to him. Dr. K. is a wonderful doctor, and seems to be open to new things. I know that he would be open to any information.

    Dr. S., I’m asking if you would be willing to see me regarding all of this? My insurance plan does cover your services and I really need help. I am no longer taking the Orencia and I feel horrible – joint pain/swelling/stiffness, feverish feeling, terrible brain fog, fatigue, and a general sense of sickness. I am in full flare mode. I have wondered if a Lyme test would be in order as my husband and I are avid campers. No one ever mentioned this to me, but I have recently learned that this may cause these symptoms as well. I am happy to provide anything you may need from me. I also know that Dr. K.is also happy to help in any way. His contact information is as follows:

    Dr. K. K.
    xxxxxxx

    Thank you so much for taking the time to read my story. My apologies for its length, but I really felt I needed to share my entire journey. I didn’t want to leave anything out that might be of importance and a clue to my hope of feeling better. If you feel you can help me, I would be happy to see you at your earliest convenience. Thank-you in advance. God Bless.

    #460348
    whaleharbor
    Keymaster

    Jamie, I am so sorry for what you have been through. The most frustrating part is trying to find a doctor who will listen and help. I went through something similar myself. I was treated “conventionally” for RA for almost 20 years (prednisone and anti-inflammatories – I refused methotrexate and biologics were just coming on the market toward that end of the 20 year time period and I refused those as well). My rheumatologist at first pretty much refused AP. I went to another doctor who told me I’d be dead and crippled in a year. His words struck a nerve and I laughed at the ridiculousness of it all dead AND crippled. I guess I wouldn’t care how crippled I was if I was dead I told him. Then I found this website, contacted one of the most experienced doctors in the country, flew to see him and he convinced and consulted with my local rheumy until that experienced docs retirement. Since them my local doc has put at least one other patient on AP.

    I can’t tell you what to do and I’m just a fellow patient. But I remember the early days…those days were horrible and AP is a journey…you have to get tough mentally. But I’m glad that for me, I sought the best doctor out there and went to see him.

    Please let us know what you hear from this doctor that you reached out to. I hope you get some answers soon.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #460349
    richie
    Participant

    You left out one significant and potentially important answer –have you mentioned to any doctors prolonged exposure to chlorine fumes ??? Can be very bad for some folks !!!!

    #460382
    Jamie
    Participant

    Good News . . . not exactly how I thought things would go, but I’m grateful. The doctor that I wrote the above letter to contacted me and told me that his appointments for new patients were backed up for a year. As you can imagine, I was devastated. There is no way I can wait around for a year to implement something. I contacted me PCP/Family Med. Doc and he told me to give him a little time while he investigated everything. On Tuesday, he contacted me and told me that he believed that the antibiotic protocol might be beneficial to me. He told me that he would be willing to prescribe the minocycline and oversee & monitor this protocol. We are both learning together. My hubby and I are going camping next week, and upon returning I will begin the antibiotic. I’m certainly nervous, especially about the herxing effect, but I’m praying it won’t last too long. I would consider my RA as mild-moderate, but as I stated above, I’ve had no long term success with any of the drugs.

    #460384
    lynnie_sydney
    Participant

    Hi Jamie
    That’s great that your Family Doc is willing to prescribe for you. That is the way I went for the first 4 years of AP when I couldn’t find someone to assist. What my Family Doc said to me is: ‘Minocycline is a relatively benign drug and I can see you have done your homework on it. I am happy to prescribe it for you and you can case manage’. So that is what we did. I had already researched and I continued to keep educating myself…and still do to this day.

    I would strongly urge you to do the same, so that you will both know what to expect and so that you can partner with your PCP in this treatment approach. Read the Scammell book and keeping searching this website for all the various invaluable nuggets of information on it. It will serve you well and IMO will also help to keep you feeling empowered. And, of course, the forum community is always at hand for support and the wisdom of their experience. 🙂

    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)

    #460386
    whaleharbor
    Keymaster

    Fantastic news, Jamie!

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #460623
    Jamie
    Participant

    Update – I took my first dose of minocycline on August 21st, 100mg. Like Lynnie, my PCP is allowing me to case manage. He seemed more impressed with the Harvard protocol rather than the pulsed method, but I told him that much of the books, articles, etc . . . that I had read and reviewed pointed toward moving “low and slow”. He suggested using the minocycline 100mg twice a day, but he was supportive either way. Up until this week, I had been dosing 100mg, 1 time daily on Mon/Wed/Fri. The first week, I really didn’t feel much different, but the second week was a different story. Honestly, I felt yucky – feverish flu like. The joints in my hands and wrists really started hurting, stiffening, and painful. The fatigue was worse than ever. I even developed this vague sore throat with slightly swollen lymph nodes. This lasted about a week and then began subsiding. Things seem to get better for a few days and then I have a few bad days – alternating back and forth. I decided to start dosing 100mg twice a day on Mon/Wed/Fri. I started this 2 days ago. The pattern seems to continue. Yep, today is a yucky day. I don’t feel particularly good. I am not always a patient person, but I will be regarding this. My only frustration is that I am self employed and it is hard to get motivated to go to work when you feel so yucky. Thanks for listening. God Bless!

    #460624
    Maz
    Keymaster

    Hi Jaime,

    This type of response is pretty much as described for RA once AP is initiated. Experienced AP docs like to see a herxheimer as it means the treatment is working and hitting its target. It’s the body’s “allergic” response to bacterial endotoxins that are released as the bugs become disabled by the minocycline. To help the immune system clean up these toxins, it’s worth learning about detoxing. Detoxing helps to neutralize and dispose of toxins that cause free radical damage and increased inflammation in the body. Simple things to detox are to drink plenty of fresh, clean water, to take buffered ascorbic acid, anything that promotes glutathione in the body, which is the body’s master detoxifying agent (e.g., n-acetylcysteine, non-denatured whey protein, curcumin, etc.). These are easy things to do to support the treatment right out of the gate and to help ease the horrid herx symptoms.

    Well done, getting started! You’re right on – patience is a key word around here! Very slow therapy with no overnight sensations, and can be a bit of a three step fwd and two step back dance all the way to remission. I must have read the book 5 times in the first year, nearly memorizing parts of it, and it really helped to keep me going.

    #460636
    MarlaCL
    Participant

    Hi
    My name is Marla. I have scleroderma for 12 years and am currently on a low dose since July of minocycline
    Next week I begin 100 mg once a day 4x a week.
    I’m hoping to see any kind of improvement. I’m hoping this antibiotic will bring me to some sort of remission over time !!
    I will chime in next Month and hope to post some good news!! I’m so grateful to have found Roadback and a few very special new friends !!

    #460640
    Maz
    Keymaster

    Marla, it’s great to see you here! It’s a bit confusing at the start to know how to post on this forum, but once you figure it out, it’s pretty easy.

    If you reply to an already existing thread, like this one that Jaime started, your post will appear at the bottom of that discussion. If you want to start a new discussion topic, however, just go to the General discussion page where you see all the discussion topics listed, then scroll to the bottom of that page to find a similar post form. Just add a topic header, write your new topic post, and then click submit. That will create your own topic and will attract more replies if you title it something that others can relate to and that will catch attention.

    Working up to the daily dose for SD can be tricky in some instances, but you’ll get there, and maybe you’ll be able to go faster than you think.

    #460646
    Jamie
    Participant

    I did want to ask a question in regards to a passage that I read in Henry Scammell’s book “The New Arthritis Breakthrough”. Honestly, this was the very first piece of information I read about the antibiotic protocol which then launched me into a series of other information including Road Back.

    “Another preliminary symptom of rheumatoid arthritis can be unexplained weight change and this takes two forms. In some cases, people who are slight of build will lose weight; when accompanied by severe fatigue this is often a precursor of the painful phase of the disease. In other cases, the patient is already overweight, and as the disease progresses the patient’s weight increases, despite efforts to control it. We have observed this same phenomenon of weight abnormality in patients with other connective-tissue diseases, including scleroderma and lupus. But as any of these diseases go into remission, both extremes begin to move nearer to the mean; patients who are too thin start to gain, and those who are obese find that their efforts to reduce are becoming more productive.”

    Among numerous things said in this book, this statement made me literally want to fall off my chair. You see, I have always believed that the beginning signs of something going wrong started with unexplained weight gain. In 2007, I weighed 260+ lbs. I had not always been obese, but I had become lazy, ate all the wrong things, and spent more time caring about others than caring about myself. Well, in January of 2007, that all changed. I took control of my life. I started exercising regularly and began eating more healthy. I made a huge lifestyle change and 4 years later it resulted in a 115 lb weight loss. I never felt better. I became a personal trainer, coach, and US Master’s competitor in swimming. I took up running as well ( not hugely passionate about it ), but landed a 3rd place trophy in my age group participating in a series of runs in St. Louis. I also enjoyed weight lifting. For approximately 3 years, I felt great and kept the weight off with no struggle. In early 2014, I started noticing that my clothing was not fitting the same. It made NO sense because I was very active, still doing the same routine, and maintaining the same healthy eating habits. I decided to switch up what I was doing exercise wise and move my macronutrients around – yet nothing mattered. I went from doctor to doctor begging them to figure out what was wrong with me. I was met with, “I think that you are not being truthful with yourself, you’ve fallen off the wagon” to “Only eat 1000 calories a day and THEN you’ll keep the weight off.” Depression was setting in big time because I couldn’t figure out what was wrong. All the blood tests – thyroid (TSH, T3, T4, autoimmune thyroid tests) all were normal. I felt like I was going insane. I gained about 35 lbs. I kept my routine up, but cried often. In August of 2015, I was hit with a fatigue. It was awful. After being out of bed for less than an hour, I was so so tired. I would just lay my head down on our couch and go back to sleep. After 2 weeks of this fatigue, my husband called our doctor concerned. He immediately wanted to see me because he knew this was not me at all. After running a battery of blood work, the ONLY ONLY thing that came back abnormal was my rheumatoid factor. Even so, it was barely abnormal. I had no other symptoms of RA which made me initially think that this was just a false positive. Still, he referred me to a rheumatologist. Within 6 weeks of the blood tests, I woke up one morning to find my fingers swollen, stiff, and pained. It was at that point I believed the diagnosis. Whenever I would ask the rheumatologist about the weight gain, he told me that people with RA usually lose weight, not gain. Dr. Scammell’s book was the first time I ever read or heard that weight gain is possible. I still coach a swim team (my full time job) and I still swim workouts myself, but I could not continue weight lifting as it was just too hard on my joints. My weight is still rising, yet slower than at the beginning of all this. Does anyone have any additional knowledge about the weight changes associated with RA and other connective tissue diseases?? Some people may think I’m vain, I suppose, but I am not. After losing so much weight and making healthy choices in my life – dealing with RA and weight gain had been so so sad for me. Does anyone have any experience with this?

    Jamie

    #460647
    Spiffy1
    Moderator

    With me, I lost 16 pounds while eating tons trying to keep my weight up. It wasn’t until I gave up gluten, wheat, egg, and dairy that I slowly was able to gain my weight back. Before the loss I had begun to gain weight but only about 5 pounds over what I was used to but I did wonder. Both increase or decrease in weight is a sign of inflammation. With weight loss it is malabsorption. Your body is not absorbing any nutrients. The weight gain can be an inflammatory response to foods as well. I do not know your specific diet. I do hope you are gluten and dairy free. But, yes, both extremes are normal with rheumatic problems.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #460649
    MarlaCL
    Participant

    Hi
    Interesting posts. I’m currently on AP only 2.5 months. Gluten dairy and sugar free. Very difficult to hold my current 120 5″5
    Frame. I would love to gain weight. Nut butters avocados
    Ecco meat still no changes
    Any suggestions ?
    TIA

    #460658
    Maz
    Keymaster

    Hi
    Interesting posts. I’m currently on AP only 2.5 months. Gluten dairy and sugar free. Very difficult to hold my current 120 5″5
    Frame. I would love to gain weight. Nut butters avocados
    Ecco meat still no changes
    Any suggestions ?
    TIA

    Hi Marla,

    Some chronic illness patients have trouble keeping weight on and Dr. Budwig created a protocol to help cancer patients to put on weight that involved eating cottage cheese and flaxseed oil. I’m not a big fan of cottage cheese, personally, and I’m working on losing some pounds, but there have been some folks here who have tried this combination and have managed to regain some weight. The following website was the first to come up on a search for this, but you may be able to find more informative websites on the topic by running a few searches on Dr. Budwig. Hope this helps.

    Cottage Cheese and Flaxseed Oil – Budwig Diet

    #460659
    MarlaCL
    Participant

    Hi Maz
    I will def check out the Budwig diet!!! Thank you:)
    Marla

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