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!!

Bumps slowly smoothing out

Ok, another week, definite improvement. Taking the Minocin MR twice a day now, and flares are minimal. Still there, but really SMALL flares, rather than debilitating ones. Waiting for the new order of Minocin brand capsules (not the Modified Release) to come in...probably another two weeks. Meanwhile at least I can pretty much ignore these little flares (last nite the knuckles on my right hand swelled up a bit...again, not enough to cause any complete incapacitation of the hand, just enough to FEEL it, as tho it is a REMINDER that the RA is STILL THERE). Just heard back from someone who switched from Methotrexate (was causing severe liver damage) to minocin (using the Triax brand, covered by insurance, lucky gal!). It has been about 8 months now, and she feels better than she has in years. Is doing gardening (able to use her hands and DIG in the garden). Her Rheumatologist had told her it would not work. She sees him again in a couple of months. I am SO EXCITED that someone else was able to stop taking a toxic drug and start on the antibiotic protocol and GET BETTER!! Wish I had a ton of money...I would run ADS ON TV to promote this treatment!!(Seems the only way to get the word out).  Maybe I will win the lottery, and I would definitely do that!

Fighting Rheumatoid Arthritis with Antibiotics, and WINNING!!

Bump in the Road - April 24, 2012

Apr 24 2012

I am not sure what caused this (hopefully) small setback. First, I had a kidney stone that got stuck, and after a month, the only choice was to have surgery to remove it. So far, no RA problems, all going along just swell. Had the surgery 5 weeks ago. Had to stop my RA meds (only taking 100 mg of either Vibramycin or Minocin on MWF...that month I was on the Minocin) a week before the surgery. After the surgery, was given Bactrim to ward off infection. Bad result. Made me horribly ill, bedridden for 3 days, finally OK after 5 days. Then started back on my RA drugs. MEANWHILE, in the past couple of months, renewed prescriptions for my RA drugs came back with slightly different brand drugs. The Vibra-tabs from Pfizer were replaced with a Vibramycin D (Dissolving tablet) by Pfizer. The Minocin from Wyeth was replaced by Minocin MR (extended release) from MEDA. I thought I might have noticed a bit of a breakthrough flare with the Minocin MR, but told myself (don't we always do this) "maybe I just strained that shoulder when....." I had just finished up the Vibratabs before the surgery. After the surgery, and the bout with the Bactrim, I went onto the Minocin MR. Flares started gradually breaking through. After a week, switched to the new Vibramycin D. Started taking two 100 mg tabs every other day, then every day. Continued to have more and more flares, lasting about 18 hours each, not incapacitating but uncomfortable. Hmmmm. I had some generic Watson brand Minocycline in my medicine cabinet (I had found that when they changed the supplier to Watson, the new stuff did not work as well as the old brand. I also tried the TEVA brand, and that did not work for me at all...which is why I had gone to the brand product). Anyhow, started with 2 caps per day for a week, then 2 caps every other day. Gradually the flares subsided. I also cut out all nuts and flour from my diet. They both seemed to be precursors to flare-ups, and the combination of the Watson brand generic minocycline and food avoidance seems to be working. So far, been five days without a flare of any note. (altho today I have a tiny bit of pain in my left thumb and inner right wrist, teeny tiny bit of an ache.) I went online and found a source for Minocin (regular) capsules, and ordered those. Will take a few weeks. The Vibra Tabs no longer are available thru the Canadian pharmacy that I was using, but are available thru local pharmacies (at 5 times the cost). Since I use so little, I hope to be able to just buy a small amount, once I get things under control with the minocycline. I have always found that minocycline or Minocin seems to pack a more powerful punch. Vibramycin is good for maintenance. So, on we go....hopefully I can keep this under control, basically in remission, for the rest of my life.

Still Feeling really really lucky....Dec 26 2011

I just got some great news this week. Someone who had read my postings about the antibiotic protocol I was on contacted me a couple of months ago, and was interested in finding out everything about it. I explained everything that I had gone thru, as well as what I used, what worked, what failed, etc. She was able to get her Doctor to allow her to try Minocin, because (a) her Methotrexate treatments were causing liver damage, and the blood work was coming back with some alarms, and (b) the treatment was not stopping the progress of the RA symptoms and pain, only possibly slowing that progress. After much back and forth, she started on Minocin in November, 2011. After one month, and not hearing back from her, I emailed her and asked how she was doing. I was hoping and praying that she would be able to stick to the protocol for the recommended 3 to 6 months that the clinical trials indicate it will sometimes take for the improvement to take hold. I was thrilled when she wrote and told me that she was feeling better than she had on all the other meds, and that her blood work was much better. Her liver enzymes had gone down from 168 to 32 - which is a good thing. I am so happy that possibly I have been able to help at least ONE PERSON hopefully get their life back, while battling this disease with a much less toxic treatment. Just minocin, that is all. I have switch from using generics (I had previously switched to Vibramycin instead of doxycycline for the months on that product) to using the brand products only. For the past 5 years, I had no problems with the generic minocycline I was taking. But the pharmacy changed brands. The new brand (teva) did not work as well as my old brand (global). So I tried a different pharmacy for the next prescription, and got yet another brand (watson.) That works pretty well (still not as well as global). So rather than mess around with generics and their constantly changing formulations as well as the pharmacy switching the brands around, I decided to go with the Minocin instead. I only take one 100 mg tablet on Mon, Wed and Friday. So even tho the cost of the meds can be high, the low dosage keeps my out of pocket expense relatively low. I still alternate, doing Minocin one month, then the same dosage of Vibramycin the next month. Interesting side note: I had a UTI a few weeks back, and went off the Minocin in order to take Cephalexin for a week. During that week, my joints felt great...there was no sign of any joint pain whatsoever. Significant, because when I had started on the new brand of Minocycline, I noticed by the end of the first week that I was starting to get some joint pains, just minor, but here and there, and I knew that it was because the drug had failed to reach its targets. I have heard other reports of people with RA who were treated for another illness with some heavy antibiotics and found their RA symptoms greatly reduced while and shortly after taking the other antibiotics. Since most antibiotics cannot be taken for long term because they will cause a resistant bacterial growth, those antibiotics cannot be used as a long term treatment. But as a lay person with just good old common sense, not a doctor, it seems to me that maybe hitting the RA with a strong antibiotic to start with, for a week or so, then going to the Minocin, might be a way to get a jump start on the antibiotic protocol. Just throwing that out there. FYI...Minocin and Vibramycin do not cause super bacteria, resistant to drugs. The tetracycline family works differently in the way they attack bacteria. Most antibiotics attack the cell walls, and break those down, killing the bacteria. Those with thicker walls remain, then multiply, causing the super bacteria growth, resistant to antibiotics. The tetracycline family does not tear down cell walls, it somehow penetrates and goes for the nucleus. The theory is that mycoplasmic bacteria are involved with RA. They have no cell walls, therefore Minocin, which has the greatest ability to penetrate whatever, can get in and kill the nucleus. Something like that...sorry, not a doctor or pharmacist, just trying to relay what I have read to the best of my limited understanding. Apparently there could be OTHER bacteria involved as well...hence the good results reported with the Keflex or Cipro or other antibiotics. I know for a fact that my RA was caused by "leaky gut"...(I had undiagnosed giardia for a full year, then got RA. Too much of a coincidence. The giardia caused permanent damage to the intestinal walls, which I try to mitigate as much as possible with probiotic supplements. But some foods will cause immediate flares still - peanuts, for example. That is why I know that my RA can be held in check, but NEVER CURED, because of that leaky gut!) At least, (saying a silent prayer), I have it in remission...hiding and lurking and wanting to attack, but unable due to the constant bombardment by that fantastic, simple line of antibiotics.

Another year, still doing great - Oct 20 2011

Oct 20 2011

Now have completed five years of having RA. For the past year I have been alternating months between Vibramycin and a generic Minocycline. I only take one 100 mg capsule each Mon-Wed-Fri. This summer, when I went to get a new prescription of Minocycline, the pharmacy had changed brands. (Had used global, now was Teva). So I said OK and got the Teva brand. After about 2 weeks into using it, I felt my shoulder get achey. Hmmm...did I strain that shoulder? Maybe... The next day, the pain had gone. OK. The following morning, my wrist ached. Uh-oh. Decided to up the dose to one per day. The next day, all ok. The following day, one knee just about buckled under me when I got out of bed. The pain was excruciating. OKAY....I knew that the meds were simply non functional. So immediately switched to the Vibramycin (Brand, not generic). Took one a day for the next month, it took about 4 days to stop flares. Then the following month, gradually dropped back to weekdays only. Then back to 3 per week. But for some reason, I find that when taking the Vibramycin for an extended period of time like that, I was getting very very tired. Almost clinically depressed, in fact. So I went to a different pharmacy with a new prescription and got a different brand of Minocycline. Watson. A little leery, because it was the generic Watson Doxycycline that had changed its formula and caused a major setback a few years ago. However, the Watson seems to work just fine. So again, I am doing the minocycline and alternating with the Vibramycin. Since I have a few more months worth of Vibramycin to use up, I will just take that for two weeks, then do six weeks of the Minocycline. Overall, feeling great. All fingers are fully functioning, and can curl up tight. I can unscrew the toughest screw top from a bottle with my bare hands, no problem. Funny how it is those little things that you really appreciate after being so crippled that your hands are like lobster claws. I hope that others can use my information to find an easier route to staying in remission than using the horrible chemo drugs and horrid biologic drugs that are out there. I hope and pray that this continues to work for me. Five years and counting.

Time flies, especially when RA is in remission Dec 5 2010

Dec 05 2010

It has now been 7 months since I started alternating months of treatment with VIBRAMYCIN and generic MINOCYCLINE. (the generic doxycycline was inconsistent and finally failed to work for me, altho the brand Vibramycin from Pfizer works fine). I have no drug coverage with my health insurance, so alternating the $35 generic with the $200 brand helps keep my expenses down. The only reason I do not take just the minocycline is that it will cause your teeth to turn grey after long term use. I know a woman who was on minocycline for 18 years for her RA, and finally quit because her teeth were getting really ugly. She uses cherry juice and NSAIDS and apparently the RA is kept manageable. So far, all is great. My rheumatologist is careful and has me take pretty complete blood tests at least once a year, to make sure all systems are functioning properly. Everything comes back wonderful...no issues wtih kidney or liver problems. I had a heart scan done...ultrasound...and all is working just fine, no negative issues. So, four years on these antibiotics with zero side effects. And no visible signs of RA for the past 9 months. (Prior to that, it had resurfaced due to changes in the formulation of generic doxycycline that I was using).(see previous diary entries). My rheumatologist FINALLY said after our last meeting that maybe he will start trying this treatment with other patients. He was quite skeptical from the onset when I requested this treatment...he fully expected it to fail. It did not. Now he is seeing that this treatment has some merit! took four years.....I sure hope he starts to try it on more patients...I hate to think of someone enduring methotrexate and such when this simple treatment might work for them!

Best of luck to you all!

Another month, its all good using antibiotics to treat Rheumatoid Arthritis Mar 19 2010

Mar 19 2010

A day does not go by that I don't do simple tests of every joint, and give a silent prayer for the successful treatment of Rheumatoid Arthritis with antibiotics. I use minocycline, the generic, alternated with Vibramycin , the Pfizer brand of doxycycline. Each seems to work well. (Generic doxycycline did not work for me once the only brand that WAS working underwent a change of ingredients...see earlier postings). My rheumatologist recommended that if I want to alter them, do one month at a time, so that is what I am doing. I am on my third week of Vibramycin and that nagging small amount of residual stiffness in one finger, and morning ever-so-slight inflammation of the finger joints, has just about totally disappeared. My right hand is totally "normal" now, the index finger on my left is a tiny bit stiffer when I curl it up...but both sets of fingers can curl up like a baby's. Knees and ankles are all good. Walking the three mile hike with friends just about every week, no pain afterwards. Life is good, life is NORMAL, as long as I take my daily dose of 100mg of what is probably two of the least toxic drugs you can take. Less toxic than aspirin or acetominiphen or any NSAID. By the way, I take nothing else at all. No over the counter pain relievers or anti-inflammatory drugs. No special vitamins, herbs, or minerals (tho occasionally I will take a multivitamin and some glucosamine/chondroitin mix, but I have not been able to get into a regular habit with either, so I just make sure I eat lots of healthy foods, and stay away from empty calories.) Being too heavy is still an issue, I have lost a few pounds, but need to get more active (keep saying that). Please please please, especially if you have only recently started with this disease, read the book (by Henry Scammell), and give this a try. I just feel so blessed that I took this route for treatment, instead of allowing my Dr. to make the decision on how to treat it, when I was diagnosed. I dread to think of having to take Methotrexate and/0r some of those horrid toxic drugs which seem to cause horrific permanent and deadly damage to your body while only slightly masking your symptoms. My symptoms are not being masked...the cause of the problem is under siege. I would compare this to being someone with HIV who is taking a cocktail of drugs and has really great T cell counts. If they stopped the cocktails, it would all spiral downward (equivalent to the resurgence of my RA symptoms when I changed brands of generic doxycycline). But I have the comfort of knowing that damage to my organs is minimized...especially if I can continue to lower the dosage...after a few months I plan to start skipping weekends, and use only Mon-Fri, giving the liver and kidneys time to renew every week. That dosage worked before, and I think I can get to that again. But I have to take it slowly. Good luck out there...I know what it is like to be suffering from this, and it is awful. I hope you can find a treatment that works for you.

Still walking....still walking....Minocycline and Vibramycin working...YAY Feb 8 2010

Feb 08 2010

Because my rheumatologist has reservations regarding the long term use of minocycline (occasionally will turn skin an ashen grey color, and turns teeth grey) and because even as a SENIOR CITIZEN (when did that happen?) I don't look forward to having grey teeth, I decided to see if I could alternate between the minocycline (generic, inexpensive) and the Vibramycin (brand doxycycline, expensive), and have a treatment that both works and does not turn me into a grey lady. So I tried taking the Vibramycin for a week, then a week of minocycline, then Vibramycin. I had gradually dropped my dosage down to one 100mg capsule per day (for about three weeks, I did two caps on Mon, Wed, Fri and one on the other days, then finally reduced to just one a day). All continuing to go well. Saw my Dr. last week, and asked him about the idea of doing alternate meds like that. He recommended a month on one, then the other. So I will do that. My joints are at about 98% of normal. Due to the repeated flares during the last two years (when I had changes in the medication being taken....BEWARE OF GENERICS - THEY ARE NOT ALL ALIKE!!! AND THEY ARE NOT EQUIVALENT TO THE BRAND PRODUCT IN ALL REGARDS) the strength in my wrists is less than it used to be, altho there is almost zero inflammation or pain. But I would never be able to do a push-up again....my wrists cannot tolerate that much weight. (Makes it tough to get up off the floor, not being able to use your hands to push yourself up.) I am walking the three miles every Saturday with my friends, and now trying to walk roughly 1/2 mile every day (self employed, find it hard to take a break!). I need the additional exercise for my heart if nothing else. By the way, blood tests taken October 2009 showed that my cholesterol is just 156, with a nice very high HDL of 65, and low LDL. I am, nonetheless, concerned about heart disease, which seems to be provoked by RA-caused inflammation of the heart. I asked the Dr. if there was anything I could do to prevent heart disease. He indicated that I was doing it with my diet, hence the low cholesterol levels, and that not being a smoker (ever) and not being a heavy drinker (rarely drink, just wine now and then, two or three glasses at a dinner party). He recommended I lose weight. So, I am walking, walking, walking. (had a battery of thryoid tests and all came out healthy. So no excuse there). My caloric intake has not been all that high but I would admit to being almost totally inactive during the week...parked at a computer all day long, then the tv in the evenings. Gotta try to get this butt in gear on a regular basis!

Will let you know of my progress.....

Still going strongDec 22 2009

Dec 22 2009

Well, it has been two months since I switched to the minocycline generic capsules by Global. They seem to be working as well as the brand Vibramycin was working. I have gradually dropped the dosage from 100 mg 2x per day, to 2x per day on Mon-Wed-Fri and 1x per day the other days, and now 1x per day 7 days a week. After another month or so, I will drop to 1x per day Mon-Fri.

I have noticed that I still have to avoid the "forbidden" foods that I found from the beginning of my diagnosis were more likely to make my joints flare up. I keep trying to eat them, but altho I can tolerate them BETTER these days, I can only handle a small amount, and only once in a while. If I try eating them daily, then I pay for it with sudden pains, reminding me that I have this disease......

The foods I find I have to avoid eating much of are:

all pork products, tomatoes, peppers, popcorn (but regular corn is OK), peanut butter, peanuts, cashews.

As mentioned, I cannot eat MUCH of those. I can eat a few tomatoes in a green salad, and have cooked green peppers in my vegetables, or even occasionally eat a whole big serving of yummie barbequed peppers and onions. I ate a bag of popcorn 3 nites ago with no problem. Then again 2 nites ago. Then last nite....uh-oh. Three nites in a row was too much popcorn...and my hand started aching. No great swelling, but enough aches to let me know that I should ease up on the popcorn....so must limit that to once a week.

Overall, there is very little visible swelling in any joints...just a bit around my ankles. I have regained total use of my fingers and hands - can make a fist easily with both hands. My wrists are a tiny bit achy yet....that is taking a long while to resolve. I think it is a combination of the swelling in the joints and possibly some damage that may have been done. I just have to watch it and not overstrain my wrists when carrying stuff....use my forearms if possible (like with large grocery totes).

I am again able to walk the 3 miles with my friends every weekend, so I am working on increasing my activity level. Been pretty much a couch potato for way too long, babying the sore joints.

I would love to hear from any others that have tried the antibiotics, and how they have done with treating their RA this way.

Happy holidays to all

Minocycline (Global brand) seems to be working well Nov 24 2009

Nov 24 2009

It has been a month on the Minocycline generic (Global) brand pills. I take one the first day, two the next, then one, then two...etc. In another few weeks I may drop down to just one per day. So far, very good. Doing just as well as with the pricier Vibramycin (brand name of Doxycycline). Or better. Anyhow, the small vestiges of RA joint problems...wrists and ankles....seem to be diminishing. Once I am back to totally symptom free, I will revert to the Vibramycin (my dr. prefers it because of the fewer side effects...turning teeth grey with long term use, and getting ashen colored skin, apparently.) But I should be able to use the Vibramycin on a one a day, Mon-Friday schedule by then....just as I did the first year of this antibiotic treatment. I like the idea of giving my system a "rest period" by going off meds over the weekend. But I have to have the RA into complete submission to do that. Almost there. Another month or two and I will be there....I think. Funny how another month or two seems like a short period of time these days...you just have to have patience. I really really wish there were more of you trying this treatment. My Rheumatologist says that he is astounded at how well I am doing. He keeps telling me how lucky I am. And, having had those brief intervals of flare-ups due to the change in the antibiotic formulations, I certainly agree with him. Psychologically I am in an entirely different place...finding joy in each day. RA has a way of throwing a dark blanket over all your thoughts...it is awful!! Anyhow, now I can concentrate on other things, like losing the excess weight I put on the past few years. No really good excuses, tho the RA kept me from exercising for quite a while...but it is hard to diet when you are on medication....and have limits to the types of exercise you can do (still have to watch out for overworking those wrists..). My best to all....have a good Thanksgiving...there is HOPE out there!

Doing pretty well so far...experimenting..... Nov 2 2009

Nov 02 2009

Well, that Mutual brand generic Doxycycline did not work. (Took it for about 2-1/2 weeks, then suddenly the joints started aching again...so I went back to the brand name Vibramycin, purchased onlinet hru a Canadian Pharmacy. It costs roughly $150 for 50 capsules ($3 each) from Canada...whereas the best price I can get from a US pharmacy is roughly double that cost. And the Canadian stuff seems to be the real deal, because it works. I had an appt with my rheumie in late October, and had a battery of lab tests done before our appt. All blood tests came out just fine. The RAF test came back within normal limits (at the upper end) but he also ordered another test, the ANTI-CCP, IgG test, which is more sensitive for RA. The standard range is 0 to 5 U/ml. I had 38. So I definitely have RA, no question. Though this is considered still in the "weak" category. I firmly believe that the antibiotics actually curb the disease, rather than simply treat the symptoms. Anyhow, I have the Vibramycin, and right now I am trying some generic Minocycline capsules. Minocycline is the antibiotic (a kissing cousin to Doxycyline) which has all the clinical trials showing a significant impact against RA. I initially started on Minocycline, and switched after 6 mos. My rheumie prefers the Doxycycline because it has fewer side effects. Minocycline can turn your teeth grey after long term use, and also turn your skin an ashen color. But, being a generic (read: cheap) and readily available at any drugstore, I thought I would give it a shot. I am taking one, then two, then one....alternating days. So 45 pills a month. Since the last time I took this stuff I wound up with zero symptoms after a few months, I would like to give it a chance to bring the symptoms back down to zero again. Then, after a few months of being solid and stable and totally pain free, I would gradually shift back over to Doxycycline as a maintenance drug...using the brand Vibramycin stuff, but in a lower dose (1 a day, possibly just 5 days a week....my goal....). My rheumie just cannot believe how well I am doing. He keeps telling me how lucky I am. I have to believe that, after hearing all the other stories out there. I wish, REALLY WISH, that more of you would give this treatment a try. I highly recommend starting off with only the BRAND name drugs, (MINOCIN, then later, VIBRAMYCIN) because my experience has proven that the generics are really hit and miss. It is because this disease will lurk deep within the joints, and the "carrier" agents in the tablets or capsules have to be able to penetrate the synovial wall to reach the area of infection. Watson tabs USED to have a great carrier product. Oh yeah...almost forgot...they did get back to me, and told me that their product meets all the FDA regulations. Period. WELL DUH. They totally ignored the info about the pills having changed in color and appearance. So, that tells me the whole story. They found a cheaper supplier or ingredient to use as an inactive agent. And they are now using it. So the stuff no longer works as well as it did before.

For those who are having all sorts of pains and problems with the traditional treatments for RA - Please please read the book by Henry Scammell...The New Arthritis Cure....and check in with the Road Back Foundation. Please try this treatment. It could take a few months....but that could mean wonderful things for the rest of your life, if it works for you. I can't possibly be the only person in the world that this stuff will work for!! (and it DID bring me back from having to use a walker, and having horrible pains in every joint....just USE THE BRAND NAME STUFF)

Slight bobble.....hopefully fixed Sept 1 2009

Sep 01 2009

My last entry, July 1st, I mentioned that my wrists were a little sore. I saw my Dr on July 7, he said I don't even look as tho I have arthritis at all, with no swollen joints. I mentioned that I must have over-used my wrist when I started feeling better, because it was a little sore. The next day, the other wrist started hurting. The next night, my left shoulder was painful when I tried to sleep on my left side. Then, Friday evening, I felt a tingling in my ankle. I looked at the left ankle, it looked fine. 10 minutes later it was swollen!!! OMIGOSH.....it (the RA) was coming back!

First thing I did was to examine the doxy pills from my most recent prescription. Yes, from Watson. Then I pulled out the remnants of my Watson prescription (8 tabs) that I had in my travel bag...with the prescription that I received in March. (The dosage is 2x per day, I occasionally forget one, so wind up with extras). I noticed a slight difference between the pills. The newer pills were a slightly brighter pink, and the imprint was more pronounced. I pulled out the remainder (had 40 caps left) of the BRAND Vibramycin out and started using those the next day. The next Monday, I called Watson. Described what was happening.

I asked if they had changed equipment or manufacturing sites for the product, they said no. I asked if they had made any changes to the formula - again, no. Long story short, right away they sent a new 30 day supply to the pharmacy for me at no charge, in case the stuff was counterfeit. They also sent mailing bags so I could send in what I had for them to do tests on to figure out what was going on. The new stuff they sent looked exactly like the most recent prescription....deeper impression, darker color. I showed the pharmacist the "before" and "after" tabs, and he also could see the difference. I sent them a couple of the "before" tabs as well as the newer tabs . They said it would take about 8 weeks to do the full tests to figure out what was going on with the tabs. (It could be that one of the dozen ingredients in the tablet had been changed by the supplier....same ingredient, different source, or whatever).

Within a week the Vibramycin was clearing up the problems. It took nearly 3 weeks for the wrists to get strong again, the ankle went back down within a day or two.

I also considered possible other contributing factors to the issue. I think any of these things may also have caused the breakthrough, or been strong contributors (perfect storm sort of thing):

1 - I had started taking a multiple vitamin/mineral tablet once a day about two weeks before the symptoms began. It was a slow-release pill, but I took it several hours after the first pill of the day, and several hours before the second pill of the day. But possibly the calcium and iron in the pill interfered with complete absorption of the doxycycline.

2 - I had been eating foods that I know were on the VERBOTEN list from back when the RA started...foods that I had determined to exacerbate my flare-ups. (Once the RA had gone into complete remission, two years ago, I had been able to eat these foods with no problems). But maybe since the relatively recent resurgence (a year earlier, lasting 4 months) of the disease, my system was more sensitive and these foods were like throwing gas onto a smoldering fire......foods like peanuts, sunflower seeds, peanut butter, tomatoes, & oranges.

While waiting for the info to come back from Watson (which will probably be a gee-whiz-we -have-no-idea-why-this-inert-ingredient-would-cause-a-problem) I continued on my Vibramycin. But the COST of that drug is $545 per month if I buy monthly, and $375 per month if I buy 3 months at a time. My insurance does not cover brand names, and only covers up to $500 per year anyhow.

So I took a chance and ordered a month's suply from a Canadian pharmacy. I took that for two weeks, and things seemed to remain stable.

Now I am trying another generic brand....Mutual (the one my pharmacy had switched to from Watson). So far, it has been just two weeks but no recurrence of joint issues. Keeping my fingers crossed.

Of course, no more vitamin pills, and no more of the forbidden foods.

I recently read that RA can cause serious eye problems, and it is best to see an opthamologist to have your eyes checked out. I have noticed that my eyes are a bit drier (have been since this all started). I also discovered that if I take probiotics and eat yogurt on a daily basis the eyes are not as dry (I can tell when I try to remove my hard contact lenses at night...if they come right out, eyes are moist. If they resist removal, I have to put in eye lubricant because they are dry. As long as I have taken my probiotics and eaten my yogurt they come out fine).

So, anyhow, I am going to make an appt with an eye dr. just to get that checked out and make sure nothing else nefarious is going on with the eyes...

BUT THEN MY RA RETURNED!!! July 7 2009

Jul 07 2009

All of 2007 was wonderful. Taking the doxycyline M-W-F worked great. I was getting the prescription at my local pharmacy. It was costing me $15 per month. However, my health insurance is a real pain in the butt with prescriptions. For monthly prescriptions, you must pick them up within a 4 day window of the previous month, or tough luck, it is no longer covered. And that means that missing the deadline one month means they would never cover you again for that prescription (meaning I would have to get a new prescription from the Doctor to start all over.) So I decided to use their online drugstore, which offers 3 months for the price of one. However, they did not carry the tablets of Doxycycline, which I was taking. Only the capsules. I asked my Dr. if it would make any difference, he said no, so I asked that the next prescription be for a three month supply of the capsules. I started taking those in April 2008. In June 2008 I experienced a flare for the first time in 18 months. Then another. Then another. I saw my Dr. in August, and mentioned that I was having some problems. I thought maybe it was because occasionally I had forgotten to take a pill, but when the flareups started, I had resumed the one a day regiment. And I was getting worse each week. He said to just monitor it, and see him again the first of December. By November I had ordered a walker, because when first getting out of bed, I could barely walk. My fingers had become quite stiff, my wrists very sore. I had problems driving because after about 20 minutes, my collarbone would scream in pain. My ankles were swollen, and walking was difficult. I had trouble turning the ignition in the car. I could not hold a coffee cup or twist off a new bottle cap. Sleep was a joke, as I was in constant pain in every joint. I was depressed beyond belief. It took about 2 to 3 hours every morning to get back to being fully functional. When I visited my Dr. he was shocked and dismayed at my condition. He had me go get xrays of my hands (I could not make fists). I asked him for a prescription for Vibramycin, the non generic doxycycline, to see if that might help. He gave me that. I also asked for a prescription for the Doxycycline TABLETS. I had just figured out a week earlier that my demise had coincided with the change of the doxy format, and had concluded that there was something dreadfully missing in those capsules I was taking. For the next few weeks, I took the Vibramycin. My pharmacy no longer carried the same brand of tablets that I had previously used, so I had them order that brand (WATSON) just for me. I offered to pay the full amount, I did not care, whatever it took. By the end of December I was getting better. I saw my Dr again in February, and by then had shown definite improvement. The x-rays had come back showing no damage to my hand or wrist joints. I continued with the generic tablets. By the end of March I was back to about 90% normal. That walker was folded up and put under the bed. I started my weekend walks around the reservoir with my friends again (I had been unable to walk for any extended period for the previous 6 months). I would go partway, and meet them at the end. Every week, I increased the distance. It is now mid July. Saw the Dr. this morning. He is thrilled...my RA is in complete remission right now. I know it lurks in the joints, subdued but not gone. Ready to re-emerge if I slip up. I am still taking 200 mg of doxy per day. I can start my car, lift a gallon jug of juice or water, unscrew a new bottle of beverage, and walk for an hour around the reservoir every weekend. I have a tiny amount of residual stiffness in two fingers, but that seems to gradually improve every week, and I venture to say that it will be gone in a few more months. My wrists sometimes get a bit sore...I overuse them, forgetting that they are compromised, and I need to be more careful lifting heavy objects. My Dr. is thrilled. So am I. New lab tests will be done early October, before my next appt. on Oct 23. Hopefully by then, I will be at 100%!

First year of treatment with antibiotics July 7 2009

Jul 07 2009

In early Dec. 2006 I had my third visit with my Rheumatologist. So far, his only treatment prescription had been Motrin in mega doses. Totally ineffective. I had compiled a list of foods that seemed to precipitate flare-ups, and avoiding those things helped immensely. But my diet was really being restricted (no eggs, pork or any pork products, tomatoes or any tomato products, bell peppers, peanuts, sunflower seeds, and a bunch of other stuff I no longer remember). I had ready Henry Scammell's book about Dr. Brown and the studies that were done using Minocin. I asked my Dr. to start me on that treatment. He was aware of the treatment, but told me that it did not seem to work well, he had only tried it a couple of times and the patients had quit that treatment and gone back to the more powerful standard drugs. I talked about the mycoplasmas, but he was not convinced that that was why it worked. He felt that Minocin seemed to have an anti - inflammatory effect. Whatever, he was willing to let me try it. I got a prescription for generic minocycline, 100 mg per day. I started taking it that first week of December. By the time Christmas came around, my flare ups were very few and far between. By the first week of January, I was no longer experiencing any flare-ups. When I went back to see the Doctor in March, he was amazed at how well this was working. I continued on the minocycline for another 6 months, but then I started getting a stiff finger. I went online, and found that sometimes minocycline will create joint problems. It was a small problem, and not related to any flare up. The next visit, in June 2007, my Dr. thought I should switch to Doxycycline. He said that since the RA flares had stopped, the doxycycline was a little easier on the system. (the two drugs are related. apparently minocin has smaller molecules and is better at penetrating the synovium to get at the mycoplasmas, but both drugs operate in the same general way. The book goes into detail on why these drugs work). Stayed on the doxycycline, doing 100 mg per day, for the next 3 months. Then I started skipping taking anything on the weekends, to allow my system to sort of flush things out and refresh itself. Then, after a few months with no problems, I dropped down to taking the 100 mg only on Mon-Wed-Fri. All was wonderful, I was feeling like a 100% normal human being. I had to be careful when I was out in the sun...especially in the summer....I seemed more susceptible to heat stroke, feeling ill, if out in the sun a long while. So I use SPF 70 when outside for any length of time, and do what I can to stay in the shade.

How it started

Jul 07 2009

In the spring of 2005, I was hit with a chronic bout of diarrhea/loose stools. Regardless of what I tried, it persisted. After three weeks, I visited my Dr. She was out that day, so a substitute saw me. He prescribed...get this...drinking at least two gallons of fruit juice per day for the next three days, and not eating any solid foods. I was perplexed. I am no spring chicken, (at that time I was 58) but other than APPLE JUICE, (which I had tried, with no success) I had never heard of treating diarrhea with fruit juice. Sure enough, after the first day the result was such violent diarrhea that I had to stop. Needless to say, I did not go back to see that quack, preferring to try more things on my own. Eating yogurt helped a little, but basically, it persisted. Then I went to England, and the yogurt there has not just a couple of active ingredients, but DOZENS!!! Like a complete probiotic capsule. That stuff made an instant difference! When I returned, I started taking some probiotic capsules, and went to see another doctor, who ordered lab tests. The test came back negative. Now, I have to tell you, it was negative and I was told my stool was normal. But if you could have seen that sample, any idiot would have known something was wrong!! So I was told by my doctor to just stay away from dairy products, including yogurt. Even tho yogurt was the ONLY dairy product that I was eating at all! Politely shoved out the door, as if this was all a stress and dairy related issue. Six months later my hand swelled up. That went away in a few days, then the other hand. Then it went away in a couple days, then my knee felt achy. Flares continued like that from May thru August, and at the end of August I had my first appt. with my Rheumatologist. From the description, he diagnosed what I had as Palindromic Rheumatoid Arthritis....which, as I found out, is the first stages of full blown RA. He sent me home with instructions to eat Motrin like candy (something like 8 to 12 tablets per day, some outrageous amount) and had lab tests ordered, and had me come back a week later. When I came back, the tests confirmed that I had Rheumatoid Arthritis. He told me to continue with the Motrin and come back in 3 months (early December 2006). I went home and hit the internet. Got VERY LUCKY. I do believe in serendipity. On a Yahoo forum, someone was talking about LEAKY GUT and its causes (often parasites, etc.), with a link to a natural based method of ridding the body of parasites. And the link of a leaky gut to RA. (BINGO!!!) And someone else was talking about Henry Scammell's book about Dr. Brown's work and all the studies on treating RA with antibiotics. I ordered the book on Amazon, ordered some anti-parasite herbs (walnut and wormwood), and started on a regimen of eating 3 cloves of fresh garlic per day (mixed with oil and vinegar). After the 2nd day, I had a herximer response...the first time that had ever happened to me that I knew of, but I recognized it when it happened. On the third day, I suddenly was feeling stronger and better than I had in months. At least, I figured, I was ridding myself of whatever had been eating at my gut for the past year and a half. I took a lot of Motrin, also took some supplements, started monitoring the foods that seemed to cause problems, and avoiding those. Of the three, the food issue had the greatest response as far as minimizing flare-ups. Then I started studying the antibiotic treatment information, read the book, and was ready for my next meeting with my doctor.