Notes on Foods and RA reactions

Several decades ago, when I was a young, newly single gal in my 30's, dieting to keep looking sexy as I looked for Mr. Right, I discovered that Strawberries are the perfect diet food. They have virtually no calories and no carbs. And living in California, the state that produces 80% of the strawberry crop for the United States, we get lots of luscious strawberries during the Spring and Summer months.

I have never had a food allergy. Ate all foods and never had a rash or anything. Peanuts, no problem. Shellfish, love it. The only allergies I had ever had were to pollen, dust, and animal dander. And penicillin. But I grew out of those environmental allergies by the time I reached 30.

Anyhow, I was eating strawberries morning noon and nite.  After about a MONTH of that, I started to get a rash on my inner arms. So I stopped eating strawberries, and the rash went away. A week later, I ate a dish of strawberries, and several hours later there was that rash again. Hmmmm. Seems I had developed an allergy, maybe by overloading on strawberries.

I had to resist strawberries for several years. After 4 or 5 years I was again able to eat strawberries with no reaction. But I have always been careful not to "overdo" it.

Fast Forward.  Now I have RA. And SOME foods definitely will trigger flares, moreso than other foods. Before I started my antibiotics regimen, which has kept me mostly in remission for six years, I started logging in every morsel I ate and separating all different foods by at least 3 hours so I could see if there was any reaction. (this takes a couple weeks, to get thru most of the foods you eat, but once you have eaten something that creates no reaction, you can add that in later, knowing it is not causative.) I was able to narrow the trigger foods down to a relatively short list: all niteshade products (tomatoes, bell peppers, etc.), pork, popcorn (but not cooked corn), peanuts, sunflower seeds, eggs.  Avoiding those foods lessened the intensity and frequency of the flare-ups. (If you go back to the beginning, you will see that my RA is directly linked to a "leaky gut", which was caused by a year long infestation with Giardia. Which makes it easy to see why certain foods may have a stronger effect on the RA).

ANYHOW, once in remission, I was able to eat ALL the "trigger" foods in MODERATION and with no problems. (I love munching on sunflower seeds, and occasionally find myself overdoing that, so have to back off...).

Fast forward to the past month. I love Thanksgiving and TURKEY. Our local supermarket offers a terrific price for a large turkey during the holiday season, and I always buy one just for myself. I cook it, and then put it into many ziplock bags in the freezer for later consumption.  But I wind up eating turkey for dinner nearly every day, sometimes for weeks on end. I did that again this year. After two weeks of having turkey roughly 10 times, I noticed a flare up of my left hand an hour or so after eating dinner. I realized immediately that I had overdone the eating turkey thing.  So I did not eat any more turkey for 5 days, then I ate some more (had that large ziploc bag filled with turkey in my refrigerator, defrosted). No problem. Waited two more days, had another turkey dinner. No problem. Waited two more days, then finished off the turkey before it went bad. PROBLEM. Within an hour my left arm started to ache. All the muscles and tendons in the entire left arm. I knew it was not a heart attack, I knew it was the turkey. Went to bed, the arm hurting so badly that I could barely hold it up. Took two aspirin.  All nite long, the pain in my arm kept me from sleeping comfortably or well. When I woke up yesterday morning, the ache had diminished. I took more aspirin, then got ready to go out and call on customers, hoping the arm would go back to normal. It did, by noon the pain was totally gone.

Anyhow, lesson learned AGAIN. If you love a food, eat it in MODERATION. Repeatedly and frequently eating the same food can create an allergic reaction. If you have RA, that will come in the form of flare ups. 

I hope this alert helps you to lessen those flare ups.

Have a peaceful and hopefully flare- free holiday.

Good news, knee issue

I have to say that I have the most fantastic GP doctor ever! He has been my doctor for about 5 years now, and I just adore him! I had called to get an appointment for my vaccinations (flu, pneumonia, etc) and because I had not seen him in over a year, they had me schedule a full physical review with him. Great idea, really. Anyhow, I was concerned about that inflammation (sort of a big cushy soft spot) right below my knees. It sort of started about 4 to 5 months ago, and at the time I thought it was a part of the battle I was having with the RA which had resurfaced after my urologist had prescribed Bactrim (sulfa drugs are not recommended if you have RA...I did not know, he did not know, the drug nearly killed me and my RA flares started up) and then a few weeks later with Potassium Citrate megadoses (that does not play well with tetracycline drugs...so again, two steps forward, three steps back!).  Anyhow, it was a tough time returning to normalcy. At some point during that time I noticed that the area below my knees, especially my right knee, was sorta puffy, swollen, mushy, but not painful like RA. When I saw my Rheumatologist last month I asked him if he thought that was an RA symptom, or maybe Osteoarthritis?  He said he could not tell, but suggested I wait until my next visit in 4 months, and if still problematic, we would do X-rays.  The only time the knees bothered me was at nite, when they burned a bit.  Anyhow, my regular GP poked and prodded and told me that the TENDON that runs down from the kneecap to the bone below had been stretched or damaged, and this swelling was a result. (I asked him because I was planning to join a gym and start working out to try to lose some weight).  He said this was more common in young kids, not someone my age, and the only thing I could do was to NOT exercise (including the weekend 3.5 mile walk that I try to do with friends at least 3 weekends per month) for a month, to let it heal.  After leaving, I remembered that I had tripped and fallen in August, and it was my RIGHT leg that had gone over the edge of the sidewalk and twisted, but I had fallen on my LEFT knee.....but quite likely I twisted my right knee in the event. So that probably is what caused this issue.  Relief that it is not RA. Being OLD means that it takes longer to heal, but at least I know that it WILL heal, eventually. Love my doctor...he is just so good at really diagnosing things. (Wish he had been around when I was battling Giardia. Unfortunately, it was not until I had found out what the issue was that he became my new doctor, when my previous GP decided to focus on surgery).  So, no issues with the knees and RA. Also had him check my ears. Whatever is causing the buzzing/plugged up feeling is down in the tubes. He recommended Mucinex to see if that would dislodge it. The issue is NOT caused by the antibiotics.
I am on the last week of Vibramycin, then will do the Minocin (will start with the Ranbaxy Minocycline and hope that it works) for December. Will let you know the results, as always.

Hope everyone had a wonderful Thanksgiving. Keep up the positive attitude...that is part of the way to get to remission!

In remission, knock on wood

The heavy doses of Minocin that I was taking created a slight allergic response (buzzing in the ears) so I switched to VIBRAMYCIN 100 mg capsules in Mid October. Have used those just 100 mg on M W F, and am no longer experiencing buzzing in the ears, and have stayed in remission. All vestiges of the RA flares have disappeared, there are no pains anywhere.  I still have that swelling below my knees, which still occasionally sort of burns a bit, but does not cause the aches normally associated with a flare-up from RA.  Because the Ranbaxy minocycline capsules seemed to work as well as the brand Minocin, I will continue testing those.  I am going to be alternating between Minocin and Vibramycin on a monthly basis as long as I remain in remission. Same dosage for each, 100 mg capsule on M W F.  The Vibramycin has proven to be a good "maintenance" drug. However, in the past I noticed that prolonged (many months) use of Vibramycin sort of caused me to feel depressed and lethargic. Hence, definitely best to alternate the drugs.  Good news seems boring...but I have to tell you, it was a huge relief to finally get back into remission where I felt completely "normal" and pain free, at all times. I am back to eating whatever I want (tho I stay away from Citrus fruit, which seems to rapidly exacerbate flare-ups). Hoping this will continue for many more years. It has now been over six years since I was diagnosed with RA, and I just feel so very fortunate that we have the internet for research, and that SERENDIPITY struck just as I was looking up this horrid disease that had been diagnosed. I wish I knew who those people were whose input on the Yahoo groups for Rheumatoid Arthritis changed my LIFE!!! First, pointing me to The Roadback Foundation website, and Henry Scammel's book (I LOVE THAT MAN!!), then the person who talked about the link between LEAKY GUT syndrome and RA...which was the exact cause of my RA!! His discussions of natural cures for possible gut infestation WORKED and I got rid of the Giardia that had been ravaging my intestines for a full year (and yes, I had seen at least three doctors about it, and had lab tests, all negative, but they never tested for GIARDIA). Anyhow, water under the bridge, permanent intestinal wall damage, (somewhat helped by probiotics, but very badly scarred permanently). So the fight against RA is a lifetime fight for me. I only hope and pray that the damage this disease has done to my INSIDES....heart and lungs, etc. ....is comparable to what it has done to my joints. Slight damage, but stopped by the antibiotic protocol from progressing. No way to know, really. Blood tests all are excellent, but they would not show lesions on the heart or lungs.  For now, I am looking forward to living many more decades and living a full and pain-free life.

Took a couple months, but back in remission

It took a couple of months, but as of early Sept. I was back into "full remission"...that being, no swollen or painful joints, no shooting pains after eating a "forbidden food", no morning stiffness, all systems seem to be back to normal.

The most difficult thing to get back to normal were my wrists. Especially the left wrist. For some reason, there is a very small area of inflammation on the upper area of the wrist below the thumb. It is just a teeny tiny bit painful in the morning. Goes down and pain gone by noon each day.  I also have some slight inflammation below each knee. Just saw my Rheumatologist, and asked him if that was OSTEOARTHRITIS or a result of my RA. There is no pain associated with the soft swelling, there was a small bit of sort of a burning sensation at night a couple weeks ago, gone now. He said he could not tell, and to just keep an eye on it and if it became problematic we would do an xray of the joints to see if there is Osteoarthritis starting up there. (Two of my brothers (younger) and my mom have Osteoarthritic knees, so it seems to run in the family).

I will be getting more of the Ranbaxy pills to continue to test them versus the brand Minocin capsules.  I am also going to get some Vibramycin capsules and again alternate months between the two types of drugs, just so as to prevent greying skin or other side effects from constant use of Minocin (have not seen any yet...fingers crossed).

Please pass this information on to anyone you know that is suffering from Rheumatoid Arthritis. The drugs most frequently prescribed are just poison to the system (Methotrexate...awful stuff. Look it up.) I take NO over the counter or prescribed anti inflammatory drugs, NO steroid shots, NOTHING but the antibiotic...right now, taking only 100 mg Minocin every Monday, Wed. and Friday. "Maintenance dosage."  After six months or so, if there are no setbacks, I may even try reducing the dose further, to 50 mg each time, instead of 100. I want to absolutely minimize the drugs in my system.

Have a good day, please contact me or post a note on the blog if you would like to discuss this treatment.  Don't forget to go to www.roadback.org and read hundreds of stories like mine from people who are successfully treating RA with these antibiotics.

Meds modifed again, doing well

The alternating between Minocin MR and regular Minocin just did not work that well, as I would have occasional slight breakthrough flares and joint pains. This became especially apparent as an MR problem when I tried increasing the use of the MR tablets (which expire shortly anyhow). So back to just the plain ordinary Minocin brand capsule 5 days per week, and now have gone a couple weeks with no flares. Still not ready to go back to 3 per week just yet. Because I have kidney stones, my urologist prescribed Potassium Citrate in megadoses to prevent the formation of the stones. He wanted me to take two per day. I tried that, but then my joints (several of which are still somewhat swollen from the disaster of having taken Bactrim back in March) would sort of ITCH or feel weird. So I dropped back to one per day. I was using some samples he had given me, as the pharmacy had to order the drug. When I picked up the regular prescription, there is a warning about interaction if you take Tetracyclines!! GRRRRRRR. Thanks, doc. I had noticed that the last few times I had taken Minocin (which I take first thing in the am) after having taken the Potassium Citrate in the evening (it is an extended release tablet, so is still releasing the next morning) my ears would start feeling like I had water in them (plugged, buzzy). That would last for several hours, starting about an hour after taking the Minocin. Now I see this warning in the info on the new drug, and it is an AH HA! moment. OK, so now what do I do? First thing REDUCE THE INTAKE OF POTASSIUM CITRATE. Monitor that ear buzzy thing, and push comes to shove, no more of that supplement! Will just have to deal with kidney stones, maybe try the much lower dose of Potassium Citrate (1/10th the potency) that is available at health food stores. (The urologist wanted me to drink lemon juice every day, but I have this thing about wanting to keep my TEETH, for God's sake!!) (Besides which, citrus and RA are not good together...cannot even eat oranges or tangerines...). I am being super cautious about the dose. Do not want to allow the flares back. Will remain on the 5 per week for at least two more weeks. Then may start substituting the generic Ranbaxy minocycline a couple days per week, see how that works, then 3 days per week, then only Ranbaxy. If it works. Ever the guinea pig.

One other thing I have noticed that is new. When I had the setback and flares due to taking Bactrim (again, only took 2 doses one day, and one dose the third day, and the result was horrific in every way), my left ankle and right knee both really swelled up and were painful, as well as to some extent my right wrist (upper inside area). That pain has gone away, but the swelling really takes a long time to also disappear. Finally I can see most of my left ankle outer bone. Still a bit of swelling below it. And below my right knee is a big soft spot, gradually getting smaller, but still almost as large as my knee. The puffiness above my left wrist is also receding.  Those have cause no pain at all for many weeks, but whatever caused the inflammation, left the inflammation behind without the pain. Guess whatever is causing that swelling has to be re-absorbed by the body. Slow process.

So, onward we go. Hope this information reaches someone, anyone, who can use it beneficially. Hey, any medical researchers out there reading this? Please help us!!

Improving, slowly but surely

Here's where I am now:
Down to taking Minocin 100 mg once a day, Monday thru Friday only.
For the last couple of weeks I have alternated between the REGULAR Minocin capsules and the Minocin MR, taking the MR on Tuesdays and Thursdays. Since I have a bunch to use up before they expire, I now am taking them this week on Mon Wed Fri, with regular Minocin on Tuesday and Thursday. So far, so good. No flares in a long time. Starting to eat more normally again, including the foods that cause flares when I am sensitive.

I met with my Rheumatologist a couple weeks ago, and told him what had happened. He stated" Sulfa drugs will exacerbate Rheumatoid Arthritis or Lupus or the like". Great, wish I had known that BEFORE I was prescribed a sulfa drug (Bactrim). And I wish that my urologist had been aware of that! So those of you with RA, be SURE to list SULFA DRUGS as one of the drugs which you MUST NOT TAKE due to SEVERE REACTIONS.  It was as though I had invited the Chinese Army of Rheumatoid Factor bad guys into my body...suddenly BIG FLARES one after another. This also exposed the weaker drugs...the new Vibramycin Dissolvable tablets and the Minocin Modified Release capsules.  Only the standard Minocin capsules were able to fight this back down to nothing.

A week before meeting with my Rheumie, I had a complete set of blood tests taken, including the RA factor plus another test (ANTI CCP) which is supposed to be a better indicator of whether or not you have RA. In 2006, when first diagnosed, my Anti CCP level was 23.  In 2009 my Anti CCP level was 38 (normal is 1 to 6). Two weeks ago it was 102!!! My Rheumatoid Factor in 2009 was 15.8 (high end of normal, and indicates very little inflammation). This time my RF was again 15.8.  ALL OTHER tests (liver, kidney, heart function and all that) were in the completely normal range.  I do not know if the high Anti CCP is higher because of the recent incidence with the sulfa drug, it will be interesting to see what it is next year.

In another couple of weeks, if all continues as it has been, I will drop back to 1 capsule of Minocin on Mon, Wed, Friday. At this time, I am not taking any Vibramycin as the brand product is ridiculously expensive (for a drug that has been around for FIFTY YEARS!!) ($12 per capsule minimum price I could find in the US...not available at all from overseas). However, I may try again in  a few months to do the alternating between the two drugs, one month at a time. I just feel that it is easier on my kidneys and liver to not be subjected constantly to the same exact drug, if possible. Just my theory.

Getting back to full remission, slowly

Starting last Thursday evening, May 4, I was on my new BRAND Minocin regular capsules (not the Extended Release stuff). Within two days the difference was noticeable. While the "flares" that I was experiencing with the Minocin MR (extended release) were very slight, and not debilitating, they were definitely noticeable, and frightening, as each day brought a new joint under attack. I feel as this is a war against terrorists. The terrorists were popping up in different locations, launching a few rockets, then running back into hiding. The Minocin MR army was able to keep them at bay, but not knock them back severely enough to stop the machine guns and rocket launches. Then came the regular Minocin. TA DAH!! Take that, you terrorists! Wiping them out, destroying their weapons, leaving them scrambling without any way to attack. They are lurking now, in every joint. But the minute one pokes his head out of a window, the Minocin army rapidly fires their machine guns in his direction. It's a war, it will last forever, as long as I am alive. I know that. At least, for the time being, we are winning.

I have even been able to already reduce the dosage to once a day, and skipped Sunday entirely with no ill effects (was taking 2 doses per day of the MR). In a week or two, will go back to just one on Mon, Wed & Friday. So little antibiotic to do such a wonderful job!

And winning, too, because MY ARMY, the Minocin guys, is very good about not causing a lot of friendly fire. So far, my kidneys, liver, heart, all are in good shape. Blood levels are healthy. No, it is not safe to walk around without my army, but my minocin soldiers are doing a fine job!!

I am one of the luckiest RA patients there is. So many are suffering so badly, not only because of this horrid terrorist disease that lurks within us, but because the "friendly fire" from the treatment they are receiving is causing so much damage that they are losing the war, not from the enemy, but from their own army!

Again, I wish I could win the BIG lottery. I would definitely spend some money trying to make more patients aware of this antibiotic protocol. Maybe it will not work for everyone. I believe that NEW patients would probably be best served by this treatment. Maybe it works for me because of what causes my RA...the leaky gut thing. Maybe if they (the researchers, the doctors) could get a better grip on what else can cause RA, then there would be a better path to treatment. Maybe maybe maybe.

Let there be hope. I wish you all the very best, my heart aches for those of you in pain. I have been there (see earlier postings regarding the problem with generics). I have experienced your pain, and even if it was only for a few months, just that much was enough to send me into a horrid downward spiral, emotionally. Again, I was lucky. I figured out the problem, and my Dr. was willing to just let me keep trying this protocol. Tho he ticks me off because he does not want to try this with any other patients. SHAME!!