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.