Just diagnosed with seronegative Arthritis

Just diagnosed with seronegative Arthritis

just diagnosed with seronegative arthritis, and I am determined to attack this thing back with diet. It has been an interesting 2 month journey, I am very blessed that I was diagnosed quickly, but the last 2 months have been excruciatingly painful and frightening as I suddenly found myself in hospital for 10 and now at home recuperating, being told by docs that my life is now 'over' as I know it and I need to be on Celebrex and Methotrexate to get relief, well do I? We will see about that, just started the Paddison diet and it is going to be very hard, guess what my husband and I do for a living; we are cattle ranchers;hahahahaha. Well I may be the first vegan cattle rancher known to mankind, oh I can't wait to hear what family and neighbours will say. Well I am 48 years old, an RN by trade, very familiar with the world of nutrition etc, very active, brand new grandson who's life I want to be very involved in and not as the crippled up Grandmother. Healing the leaky gut and eating to prevent inflammation here we come!! Don't know why my photo loads sideways, oh well.

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  • I hope it goes well for you darling.xxxx

  • I did it, so with a lot more, so I know you can :). As Clint Paddison always say, it takes a bulldog determination to conquer this disease with diet. The first few months were very limiting for me, but now I can eat out and have a vegan meal with no or very little pain. It's been a year and a half for me now - back on the treadmill again :) It's been a tough yet exciting journey. Oh and yeah, in my atttemot to eliminate oil, I had lots of avocadoes but it set back my healing. I'm not saying avoid them, but know the foods that triggers the disease. *sending some bulldog encouragements*

  • thank you for mentioning the avocados because I love them and there are 4 in my fridge which I will not eat! I will gladly try them later and see but for now I will avoid.

  • Wow I admire your enthusiasm, good luck with the Paddison diet. I too follow it but I take MTX too. Hoping one day I will be able to say goodbye to MTX.

    Would love to get updates about your progress.

  • Good luck Nursenets, I'm also sernegative and am currently controlling my RA with AIP diet, LDN and supplements. It is really working and I am lucky not needing RA meds, yet anyway. Diagnosed Dec.2015. Take care.

  • Thank you for mentioning the LDN I had not heard of Naltrexone, sounds like it might be a safe alternative to Celebrex and Percocet for me.

  • Deffinately safe. Best info: ldnresearchtrust.org😊

  • When you say seronegative, does it mean your RF and anti-CCP are negative?

  • When a patient tests negative for rheumatoid factor and anti-CCP antibodies, yet they still display strong symptoms indicative of rheumatoid arthritis, they can achieve a diagnosis of seronegative rheumatoid arthritis.

    The seronegative part means they don’t possess the antibodies that seropositive patients do. Otherwise, seronegative patients may also simply possess extremely low levels of the antibodies – not enough to warrant a seropositive diagnosis.

    Many seronegative rheumatoid arthritis patients go on to develop antibodies years after their initial diagnosis. This sometimes causes the diagnosis to change to a seropositive rheumatoid factor or anti-CPP diagnosis.

  • Go for it. You have got my support. I have done 2 podcasts with Clint. Just recently my RA Droctor has said that I am a Miracle and he doesnt need to see me anymore.

  • Hello, I pray you find relief. I would like to follow your journey of healing your gut. I too have serum negative Rheumatoid Arthritis and have tried modifying my diet. I have a 4 year old grandson and I want to be an active part of his life. Keep smiling!

  • in case I don't post here regularly please feel free to send me a friend request on FB, Lynette Finstad and we can message

  • Good luck 🌹

  • Good luck with that. However, whilst certain types of diet cause inflammation in the body they do not actually cause RA. Red meat will exacerbate all inflammatory or painful conditions.

    I went on a vegetarian diet (in order to remove purines from my diet) and the RA flared up very badly. I normally eat quite a lot of fish so I am guessing that fish does help. I don't eat anything that will exacerbate inflammation, yet the RA does not clear up on its own.

  • True the food you eat does not cause RA but it may cause gut permeability that in turn gives passageway to food particles to your blood that become allergens. Every time you eat them you get an inflammatory reaction from your immune system. This is why fixing the leaky gut as a first measure of decreasing inflammation is so important and also elimminating the foods that usually are the culprits. The Mediterranian diet unfortunately contain a lot of these typical allergenic foods. Paddison diet works for many but then again AIP works for many, where good fats and proteins are an integral part. A ketogenic diet has in new studies proven to be anti-inflammatory.

  • Yes, I am well aware that diet can exacerbate, or help alleviate, inflammatory conditions. I was just saying that you will not eliminate RA by diet alone. I went on one and it flared up worse than ever - so some foods clearly do help. I think diet is probably the main explanation as to why some people suffer far more pain than others.

    As regards leaky gut, the same happens with candida. It is a natural inhabitant of the bowel but it does overgrow if not checked by natural bacteria. It is capable of changing form and penetrating the gut wall and entering the blood stream. It is only recently that conventional medicine has acknowledged that it can enter the blood stream - but a number of immuno-suppressed people had to die first. I get dreadful urticaria (hives) if I get a bad dose of candida. Practitioners of Western are unbelievably stubborn when it comes to evidence adduced by alternative medicine or other systems of medicine. The typical Western diet, including vegetarian diet, is too high in sugar and carbs and this will both cause and exacerbate Candida.

  • flare ups are normal and expected in the first stages of these diets, worth a read on Paddison anyway.

  • I did it for a month. I could not continue because I was effectively disabled - unable to use my hands/arms/elbows or shoulder but on top had problems with knees, feet. I could not get dressed, turn a key to open the door, handle money, pour a drink, hold a small teapot, fill a kettle, cook, write one word, kept smashing crockery and could not do the housework. I would have needed a full time carer to continue and I don't believe the diet was suitable.

  • Dear Delicatlnput,

    I was in your position too. However, I was lucky to have my daughter back to look after me for 10 months before she started to work.

    After that, though I still could not balance myself properly when I work but I could take care of myself because the inflammation was gone and the pain was very much reduce and tolerable.

    I am now in remission without following any diet plan but I did eliminate dairy totally for 2 years and now on and off I do have a glass of milk. I am in remission after 1 1/2 years treatment. My rheumy started to reduce my mtx from 20 mg to 15 mg in May 2016 and 12.5 mg in Nov 2016 a week. In between, my liver marker was a bit high, my ESR and CRP were both very low, therefore he said that it would be a good time to reduce mtx to keep my liver in the healthy range again. My liver marker was always healthy hence I was not sure why it went up during those blood tests hence the decision made to reduce mtx. It did go back to normal after mtx was reduced from 20 mg to 15 mg. But again it went up slightly again in the blood work in Oct 2016 therefore my rheumy reduced the mtx further for me. I will be going back for another blood work tomorrow to see if the liver marker is back to normal again.

    I do believe that diet will help in the process of recovery, but I do not believe it will reverse RA or it will cure RA without the DMARDS. Therefore we must be very careful about this.

  • exactly it is really all about the gut. I think the Paddison diet works well for people because it basically is an elimination diet, therefore once one knows what one's triggers are and aren't for inflammation you can add things and your body may be quite happy on a ketogenic or AIP or paleo, but if you don't eliminate first and then add back in I fear many people would only get partial results and not realize what they are missing in terms of full health and energy. Just my 2 cents.

  • AIP is an elimination diet and a strict one!

  • nursenets hope u dont mind me asking what is the leaky gut xxx

  • I would encourage you to do your own research there is a lot of great and credible stuff out there. doctorklaper.com/answers/an...

  • ty x

  • Mary. Have a look back on Kai's post a couple of days ago, he has posted a link to the 'betrayal series' if you want to have a look at information re a leaky gut. X

  • ty i did have a look at it and found it really interesting and made sense i have been a veggie for about 30yrs hope i get to see all the betrayal series i had never heard of a leaky gut x

  • Thanks for these videos, Shaun. Very inspirational!

  • Hi Nursenets - I think most of us on the board have been there or someplace close to where you are as well. If I might, a few thoughts:

    - I have seen on Dr. Mercola's website that he is treating patients with RA with nothing but diet. He follows more of a Paleo diet though than vegetarian. I am now following a keto diet (75% fat and the rest in protein and very little carb - like no more than 20-30 % a day). So far it is working very well and I feel a lot better.

    - I was vegetarian for almost 30 years and still got RA - Of that 30 years I was Vegan for about 12. The reason it didn't work for me is that I didn't do it right. I ate too much processed food and starches. If you are going to try that for remission, try around 80 - 85% plant materials. There is a video series out right now (Episode 3: The Microbiome and How To Restore The Good Bacteria, Plus Colitis & Gut Disease Success Stories ) that is about this same thing. If you sign up (it is free) they may go back and let you take 1 and 2 - they are only keeping each one up a certain length of time. In Episode 2 they talked about following a vegetarian diet for RA and other autoimmune diseases.

    - I am also taking Minocycline for the RA and it is working wonderfully well. My lab results have dropped in some tests quite a ways below the top of the range and the only one left is my CR-P, which my periodontist told me the other day is affected by one of the drugs I am on - I just don't remember which one. You can find more information on the protocol at the Road Back Foundation - Rheumatic Disease Treatments - I don't want to put another link in here or the autobot might think I am a spammer. But if you search for that site it will give you information on the therapy using antibiotics.

    - Finally, just one caution. I am with you, but you must do this right or your joints can become permanently damaged faster than you can imagine. There is no cure for autoimmune diseases, but you may be able to get to remission. Just make sure you are paying close, close attention to what your body is doing and if what YOU are doing isn't working, find another way. Sometimes, there is not as much choice as we would like. I did the MTX thing for a year before I moved to the minocycline.

    I would wish you the best of luck and gentle hugs however you decide to tackle it.

  • What worries me about the Mino is what it does to the microbiome? Antibiotics kill bacteria in the gut both good and bad and what I understood from a presentation in the Betrayal series, this often results in the bad getting more strength which in turn causes problems with health and gut health. The microbiome cannot be but effected by the longterm use of Mino. Do you have any thoughts on this?

  • I don't take Mino, but I have the same concerns about Sulphasalazine which I was told contains an antibiotic.

    The problem with an elimination diet is that unless you get a fairly immediate response to foods as you reintroduce them, you still don't really know whether they are bad for you. With wheat, it was obvious to me within minutes of consuming it that my body was reacting to it. But with other things, there was no obvious reaction so I assumed they were OK. But some things may well still be triggering the auto-immune response. That may be why for some people elimination diets make absolutely no difference whatsoever.

    I think there needs to be a lot more study of the microbiome.

  • So true, this has been my problem. Reintroducing is hard! It's pobably better the way Dr. Tom O'Bryan advices you: First you just eliminate gluten, sugar and dairy for a month, following the normal Paleo diet. For many of his patients this has been enough. If not you eliminate nightshades for a month if it doesn't help you take away legumes, then eggs then nuts and seeds. So going this way you will have an easier time finding out what triggers your inflammation.

    Yes sadly enough not only antibiotics but also many RA meds in fact cause permeability of the gut. At present I am trying to keep away from the antiinflammatories just taking Paracytamol and herbs that are anti-inflammatory to give my gut a chance to mend.

  • Is there a vegetarian version of the Paleo diet?

    Unfortunately, I cannot take NSAIDs as they make me wheeze. A couple of days ago I took one of my sister's Diclofenac because I had period pains. On top of my usual achiness, period pains were the last straw. Paracetamol is usually enough to stop them, but I decided that if I was going to take a pain killer, I wanted to be rid of the aches as well. But even today, I'm aware of the wheeze deep in my right lung. I shouldn't really have taken it as I already knew I had a problem with Naproxen and Ibuprofen, and it didn't even affect the achiness anyway.

    Boswellia is next on my list!

  • I'm also taking black currant seed drops and a couple of homeopathic drugs against pain.Have started eating more apples since evidently very anti inflammatory.

  • Hi Simba - Of course you are right - There is a risk of killing off bacteria, but with the minocycline, it is slower than with other antibiotics. So, what I had to do was make a review of the side effects of the Methotrexate which include among other things (manufacturers website):

    "More common

    • Black, tarry stools

    • blood in the urine or stools

    • bloody vomit

    • diarrhea

    • joint pain

    • reddening of the skin

    • sores in the mouth or lips

    • stomach pain

    • swelling of the feet or lower legs

    Less common

    • Back pain

    • bleeding, blistering, burning, coldness, discoloration of the skin, feeling of pressure, hives, infection, inflammation, itching, lumps, numbness, pain, rash, redness, scarring, soreness, stinging, swelling, tenderness, tingling, or warmth at the injection site

    • blurred vision

    • confusion

    • convulsions (seizures)

    • cough or hoarseness

    • dark urine

    • dizziness

    • drowsiness

    • fever or chills

    • headache

    • lower back or side pain

    • painful or difficult urination

    • pinpoint red spots on the skin

    • shortness of breath

    • unusual bleeding or bruising

    • unusual tiredness or weakness

    • yellow eyes or skin"

    Then they wanted to add Humira which offers the following (manufacturers website):

    More common

    • Black, tarry stools

    • blood in the urine or stools

    • bloody vomit

    • diarrhea

    • joint pain

    • reddening of the skin

    • sores in the mouth or lips

    • stomach pain

    • swelling of the feet or lower legs

    Less common

    • Back pain

    • bleeding, blistering, burning, coldness, discoloration of the skin, feeling of pressure, hives, infection, inflammation, itching, lumps, numbness, pain, rash, redness, scarring, soreness, stinging, swelling, tenderness, tingling, or warmth at the injection site

    • blurred vision

    • confusion

    • convulsions (seizures)

    • cough or hoarseness

    • dark urine

    • dizziness

    • drowsiness

    • fever or chills

    • headache

    • lower back or side pain

    • painful or difficult urination

    • pinpoint red spots on the skin

    • shortness of breath

    • unusual bleeding or bruising

    • unusual tiredness or weakness

    • yellow eyes or skin"

    Then they wanted to ADD Humira, which offers the following:

    " Common side effects of Humira include

    •injection site reactions (redness, itching, pain, bruising, swelling, or bleeding),

    •headache,

    •suffy nose,

    •sinus pain, or

    •stomach pain.

    Stop using adalimumab and call your doctor at once if you have any of these other serious side effects:

    signs of infection (fever, chills, sore throat, vomiting, diarrhea, flu symptoms);

    shortness of breath with swelling of your ankles or feet;

    confusion, neck stiffness, seizure (convulsions);

    pain or burning when you urinate;

    sudden numbness or weakness, sudden severe headache, problems with vision or balance;

    chest pain, sudden or ongoing cough, wheezing, rapid breathing, coughing up mucus or blood;

    tingly feeling, weakness or prickly feeling in your fingers or toes;

    problems with balance or eye movement, trouble speaking or swallowing;

    severe lower back pain, loss of bladder or bowel control;

    pain, swelling, warmth, or redness in one or both legs;

    red, purple, or scaly skin rash, hair loss, muscle pain, mouth sores;

    joint pain or swelling, swollen glands, muscle aches, unusual thoughts or behavior; or

    patchy skin color, red spots, or a butterfly-shaped skin rash over your cheeks and nose (worsens in sunlight).

    Other common side effects may include:

    headache;

    stuffy nose, sinus pain;

    mild stomach pain; or

    pain, redness, itching, swelling, or bleeding where you injected the medication.

    "

    Looking at that list led me to believe that my microbiome would not actually be okay with those meds. Then I looked at Minocycline (drugs.com)and it says:

    "Commonly reported side effects of minocycline include: headache.

    Other side effects include: vulvovaginal candidiasis, diarrhea, dizziness, dysphagia, epigastric distress, melanoglossia, nausea.

    Major Side Effects: Incidence not known: •Black, tarry stools

    •blistering, peeling, or loosening of the skin

    •blood in the urine or stools

    •blurred or double vision

    •bulging soft spot on the head of an infant

    •chest pain, possibly moving to the left arm, neck, or shoulder

    •confusion

    •diarrhea

    •dizziness or lightheadedness

    •eye pain

    •fast heartbeat

    •general feeling of discomfort or illness

    •general tiredness and weakness

    •hives, itching, or skin rash

    •joint or muscle pain

    •large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs

    •loss of appetite

    •nausea or vomiting

    •red skin lesions, often with a purple center

    •severe headache

    •severe stomach pain

    •sores, ulcers, or white spots on the lips or in the mouth

    •troubled breathing

    •unusual bleeding or bruising

    •upper right abdominal or stomach pain

    •yellow eyes and skin

    Once I looked over the three, I just felt like the risks were less with the Minocycline (purely a subjective opinion of course)..

    The Road Back website says the following:

    "Rather than suppressing the immune system, tetracycline antibiotics have helpful immune-modulating properties as well as bacteriostatic actions that disable cell-wall-deficient microbes (bacteria without a cell wall). As the pathogen load is slowly reduced, the immune system gradually re-learns how to respond in a less reactive way to bacterial endotoxins.

    Although AP is described as a “slow” therapy, the rheumatic patient can expect to improve with time as the root cause is addressed and symptoms begin to regress.

    Although some rheumatologists are unaware of AP treatment or consider it to be ineffective, minocycline (the tetracycline drug most commonly used in AP) is approved by the ACR (American College of Rheumatology) as a DMARD for rheumatoid arthritis and other rheumatic diseases due to its known immune-modulating effects. This approval should entitle rheumatic patients who reside in the United States to have the option of choosing to pursue AP, and minocycline's ACR listing should also carry weight in many other western countries."

    There is much, much more there, but what I decided to do was: Eat raw yogurt with live probiotic cultures every day, take a high level probiotic (I use Global Health Trax) a couple of times a day, eat almost no sugar to keep down candidiasis, try to keep my level of greens and other low carb veggies high, use psyllium as needed, and monitor how I feel.

    Sorry this is so long. This is not a decision I made lightly, and I feel like the risks are similar between the three DMARDs in terms of microbiome risks. Even through this is low and slow, I have not had to increase my 200 mg a day of the minocycline (actually to my knowledge, you never would). After starting MTX at 15 mg, then moving to 20 mg 4 months later, then being told I needed to add in Humira, I didn't feel like there was an end in site with that route. I have been on the Minocycline for almost a year and the difference is major to me. I am really hopeful that I can get into remission in another year or two. I know that it may not be permanent and I may have to take up the Minocycline again, but hope is strong - ha ha.

    Sorry, I did not intend to be so wordy. Just trying to answer the question fairly. Best luck with whichever protocol each of us choose.

  • Yes Caeryl I think you are right choosing the Mino. I went through the same process of comparing these meds and came to the same conclusion initially. I got my Mino from UK from a AP doctor who had been working with Dr. Brown. Then I learned about LDN and its immunomodulatory effect and wanted to see if its working alongside AIP paleo diet. So far so good but if this stops working my next step will be trying Mino, even though I will be sad having to give up the sun.

  • Hi Simba - I loved your last comment. You know, I have been out in the sun for the last 7 months and no ill effects. Of course, I never have been able to sunbathe really - skin is pasty white (ha ha) - I envy people so much that can get a tan. Some of my best friends are dark skinned and they look really nice in broad daylight... Anyway - if you did, you would for sure need to wear sunglasses, and just put a high number SPF on or some long sleeves... Although, to be honest, I can stay out a couple of hours in short sleeves with no problem and no burns, even without a sun block. Hope you are having a great Saturday (or is it Sunday there now? I lose track of the time difference...)

  • Hey Simba - I just realized something - We are basically following similar paths - Diet and an alternative therapy. Best luck to all of us, yes?

  • 😊😊😊👍🏻

  • Good luck on your new direction, Nursenets. I'm on a similar journey myself, diagnosed early this year as seropositive, no pain but lots of fear, and on Hydroxychloroquine and Sulphasalazine ... oh, and LDN. Natural healing is my main hope, but fear of deformity and disability has me on drugs too.

    I like to watch Clint's videos, but the thought of celery juice makes me feel queasy, so I have never ventured into his protocol.

    I'm sure your positive attitude will help you through this!

  • Let me clarify to for those that are following me, I am on on the Celebrex, and Methotrexate and am hoping to be weaning off of it as my bloodwork indicates my ESR and CRP come down.

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