Reactive Arthritis: What I’ve tried
Posted , 7 users are following.
Hi all, I was diagnosed with Reactive Arthritis about 2 weeks after contracting Strep throat. I'm currently about 5 weeks in.
The M.D. sent me home with advice to rest and take Ibuprofen, and that's it. I had already begun a course of antibiotics from a walk-in clinic Dr. I'd seen previously.
Being a Naturopathic Dr. myself, I couldn't allow myself to wallow in misery and do nothing to help myself. I hauled out my old textbooks to see what course of action might be advised.
I knew that certain foods increased inflammation and immune reactivity. I decided to start off with an old-school water fast to help calm down the inflammatory cytokine activity.
I'm used to intermittent fasting for about 19 hours per day, which helps increase one's tolerance. It also helps to eat ketogenically for a couple of days beforehand to get your body accustomed to burning your fat instead of glucose.
First attempt, I managed 52 hours. 12 hours after eating, the pain came roaring back. I next managed a 5 1/2 day fast with some electrolytes ( potassium, magnesium, and sea salt) in water. My body hit a wall at that point, so I broke the fast for 2 days. the pain increased again, so I did one final fast. The idea is to fast until 1-2 days after resolution of symptoms. I made it another 5 1/2 days. That seems to be the maximum my body can tolerate, and I was feeling very weak. The electrolytes were no longer helping. Time to stop. My pain was considerably better and stayed so this time as I carefully reintroduced foods.
I researched the Autoimmune Paleo diet (AIP) to come up with a plan. I wanted to avoid any foods which were known to increase inflammation.
I also saw a traditional Chinese (TCM) doc, who checked me over and declared that my case was no longer very severe, but that I needed to build up my strength ( Kidney Qi in TCM language). Not really a surprise, considering all the fasting. I had lost about 20 lbs in 2 weeks. It really helped the inflammation, but it comes at a cost.
I began eating the following foods: homemade bone broth with some organic bouillon mixed in for flavor. Well-cooked broccoli, kale, cauliflower, asparagus, steamed sweet potatoes, cinnamon, turmeric, coconut oil. Canned health food store wild salmon. Fresh juices from beets, ginger, lemon, grapefruit together, or cucumber lemon kale ginger sometimes.
Aroy-D coconut milk in tetrapaks mixed with chia seeds and frozen wild blueberries.
Symptoms really improved and stabilized. I also added some chicken liver paté to help rebuild Qi, and raw walnuts.
I also got 3 home visits from an RMT who does myofascial work. Helped a lot. On the last visit he used a Dolphin Neurostim on my back and neck acupuncture points. Amazing!
I now only take ibuprofen at bedtime. I can walk around my neighborhood and do errands. If I eat inflammatory foods, I feel it.
I still feel more fatigue than usual. I try to take it easy. But I'm functional again. I feel pretty confident that I'll have this resolved in a couple of months rather than years.
If you're out there and suffering, perhaps this will give you some ideas.
0 likes, 17 replies
james_47376 amy76521
Posted
Hi amy
I read your post with great interest and applaud
You are dealing with illness as should everyone and to check what doctors give for symptoms which are usually akways masks
I love this theory - cause and effect and I try to follow this and everything i take or do has an effect and to try to find the cause
The cause in my case is tricky - I’m in the world of Lyme - co infections - mould - metal and basically a poisoning that my body can’t evacuate .
Iv got basically no immunity at cd57 44 Ul ( normal range 100-300 )
I have reactive artheritus plus severe cramping amoungst many other issues
I’m also avoiding inflammatory foods and I’m taking turmeric allot in home made tea
amy76521 james_47376
Posted
Hi James, I'm sorry to hear you have so many contributing problems to deal with! I hope you can move from your moldy home and find a practitioner to help you with the Lyme and the heavy metal issue. I hope you have been able to identify and eliminate the source of the heavy metals. Coriander leaf springs to mind as a natural chelating agent that may be helpful.
I'd definitely suggest looking at the AIP diet to help manage pain.
Through the intermittent fasting community I have also heard of excellent health benefits from red light therapy such as the Joovv device. Might be worth looking into to help with your toxic burden. Or perhaps even far-infrared saunas, used regularly. Getting the elimination pathways open and functioning optimally is really key.
Hope you get feeling better soon!
james_47376 amy76521
Posted
cheers amy
yep iv rented an ired sauna - and just starting bio protocall for lyme and three co infections
il get my metal and mould results within a few weeks
its posdible i have multiple issues as iv supressed immunity so im a toxic invitation
iv learned so much this year about lyme etc and nutrician and how to heal and iv learned what many standard doctors are so lyme iliteret
amy76521 james_47376
Posted
Good for you, James! Nobody in this world is going to care about your health as much as you do. You've got to keep working and searching. I hope you start getting results soon. Onward and upward!
andrei92 amy76521
Posted
Hey Amy, i was recently diagnosed with Rective Arthitis also. But i had this disease for 4 years and nobody knew what i have because all my blood test are perfect and i don't have any inflamation on my joints, but they hurt, they hurt the most when i get a cold or when i use them, when i wake up or i don't do much activity my pains are better.
My question is how did they diagnosed you with that? because my pains also started from a cold but i went to 20 reumatologists and neither knew what i have, the last one which is in Vienna Austria said is a sero-negative reactive arthitis. He said this type of arthitis should fade out after max 1 year but for me it;s been 4 years and everytime i get a cold it seems it comes back harder.
also the doctor said to try ibuprofen for 1 month , if it doesn't work i should take Sulfasalazine for 1-3 years.
james_47376 andrei92
Posted
if i were you andrei id be investagating that further and find out what the ra is against
ib profine is just a cover up but not finding the cause
there is always a cause right ...
amy76521 andrei92
Posted
HI Andrei,
It was much easier to diagnose in my case. The ReA started within 1 week of Strep throat onset. I had done some googling before going to see my family Dr and had myself very scared that it was Rheumatic Fever-- I never got any search results for ReA because Strep is a fairly uncommon cause of it. You have to specifically search for "post strep reactive arthritis" to find anything.
My MD checked my heart, including EKG, and fortunately the heart is not involved. My MD is a recent graduate so her training is very fresh and up to date. She also said she'd had a similar case in the previous month.
I know many people are skeptics these days, but if I were you, suffering so long without a medically identifiable cause, I'd go for alternative medicine. I have seen miraculous results in many seemingly hopeless cases with homeopathy, when performed by an experienced, classically-Hahnemannian-trained practitioner.
I am also currently seeing an experienced chiropractor to help resolve my lingering joint pain and pins-and-needles sensation on the bottom of my foot. I think that is also an excellent idea. Restoring proper nerve function can markedly improve immune function, potentially resolving symptoms.
andrei92 amy76521
Posted
Sorry if i keep asking, but it's really hard to find people that are in my situation.
So your doctor gave you only anti inflammatory medicine?
Did you do any blood test to confirm you have reactive arthritis and if yes they were positive?
Do you have visible inflammation?
And do you have pains at night or in the morning?
Sorry if there are to many questions but i am trying to figure out if what you have is what i have...because doctors seem to not know.
amy76521 andrei92
Posted
Hi Andrei,
I was sent for an ekg to rule out rheumatic fever, and blood was taken. I know one of the things she wanted to check was my TSH, as Hashimoto's Thyroiditis runs in my family.
I didn't look too closely at the requisition to see what else had been ordered. CRP? ESR? HLA-B27? No idea. I haven't been contacted, so I assume everything was within normal limits.
I had mild visible swelling in the knee. Calf was 30% larger on affected side at the height of symptoms. No redness was present.
Pain was in neck, upper back, SI joints, R thumb, knee, and calf. A unilateral presentation like this is one of the diagnostic criteria for ReA, as compared to a bilateral presentation in Rheumatoid Arthritis.
Pain was all day and night requiring advil, but of course worse getting out of bed and walking. Every case is a bit different though.
BecsKoAhau amy76521
Posted
This is all great advice. Given the treatment plan I am wondering what your symptoms were at diagnosis and the pain level. With my initial flare following a C-DIFF infection I was hospitalised for ten days and the pain was worse than childbirth. I could not roll over at night without agony and would wake drenched in sweat and need my bedding changed. I could not stand without support for 4-5 months. I was on long and slow release oxycodone, corticosteroids and methotrexate upon discharge. My inflammation markers and WBC counts were through the roof. I do have HLA B27 so that can drag the autoimmune dysfunction process out. I am still taking methotrexate almost a year later and just getting well now.
I have been following Dr Amy Myers program, but in the initial stages of the disease diet alone would have been ineffective, ibuprofen wouldn't have scratched the surface. I will try the fasting to speed this last healing stage up. Thank you
amy76521 BecsKoAhau
Posted
Hi Becs,
I think my case must surely have been much milder than yours, as I was never hospitalized nor given those very serious drugs. Because only one knee was affected , I could sort of Quasimodo my way around the house, taking 400 mg ibuprofen 3 times per day. If the meds wore off, though, there was a lot of hysterical weeping.
I am so sorry to hear about what you've endured. I have despaired deeply at my pain and inability to care for my two young children. I can only begin to imagine your suffering.
I hope you get it resolved soon.
hannah36737 BecsKoAhau
Posted
hey hun
I'm 3.5 months in. spent 2 weeks in hospital, have had an operation on one knee, steroid injections in both knees, have severe Inflammation in 9 joints all over my Body, have been on oral steroids for 8 weeks and methotrexate for 7. The Doctors think I have Seronegative inflammatory arthritis but don't know what the cause is but I had an sti called TV which they only found a 7 weeks ago (now gone apparently) so I'm convinced that was the trigger.
I'm otherwise healthy and usually exercise lots, other than I have Binge Eating Disorder and Bulimia...
I've found that salt and sugar really cause me pain.
I am fearing for my job and my life as this has severely effed up my life.
Pain in the mornings are horrendous. I use crutches to get everywhere. I can't figure out if movement helps or makes it worse!
I may try I-F but I'm so worried as it's made my eating disorder worse in the past.
any help would be great.
weirdly my bones showed no issues on xrays but just huge swelling or entetheses in tendons in ultrasounds. i'm worried it's lasting so long it will do long term damage.
did anyone have methotrexate? how long did it take to work?
the steroids don't work...I take prednisone 20mg but it onky temporarily numbs everything.
the steroid injections worked for 2 weeks and then swelling returned in knees...which is weird right???
thanks
hannah xxx
amy76521
Posted
Updates:
I am now 90% resolved. My stiffness and pain are now just in the first hour of waking, and are pretty much confined to my spine in the upper to mid-back. I am back to walking everywhere, carrying heavy loads, and yoga 3x/week.
I am currently back to my intermittent fasting , of 19-20 hours/day of consuming only water, black coffee or decaf or black or green tea, no flavours or sweeteners. One addition that really has helped, is that my daughter was put on a special diet that is as close to zero processed foods as possible ( low free glutamate diet for autism), and I eat what she eats. We are both doing great on it. I cook a good quality piece of meat or fish, serve it with a big salad with homemade lemon garlic olive oil dressing and beans cooked from scratch. fruit or a bit of coconut milk fruit smoothie for dessert. Lots of green veg and nettle tea for calcium.
I tried having a piece of my son's homemade gluten free oat flour banana bread, and had a huge relapse the next day. It seems oats set me off, as I've eaten all the other ingredients with no problems. I also came across a discussion online a while ago where Rheumatoid Arthritis sufferers were discussing which starches caused a flare in symptoms for them. Different starches caused problems for people, even something as seemingly innocuous as sweet potato or rice. Just some more food for thought for any of you experimenting to try to improve your health.
amy76521
Posted
My pleasure. It's basically paleo, but you take out processed stuff like fish sauce, coconut aminos, vinegar as much as possible. Minimal sweeteners like honey or maple syrup. I use a lot of kitchen machines like a food processor, instant pot, vitamix, and immersion blender to speed up food prep as much as possible.
kc119 amy76521
Posted
This is amazingly resourceful, thank you so much. I've yet to be diagnosed with ReA but it's the current theory insight at this time. If you have any more details on this diet, please share with me.