We are fortunate in the sense that we get so much support from people who have already waged the most difficult part of the battle. Sheila will go on antibiotic therapy as soon as her dermatologist gives her the prescription. We are also fortunate in that Sheila has a Master's degree in biology (I'm just an electrical engineer) and she actually understands microbes and antibodies and things; plus one of our daughters has a PhD in Toxicology and is in medical research. When she found out about the rheumatologist's prescription she called her mom immediately and told her what the medicine acutally does to the recipient. Another friend was aghast since it is the same medicine she was given for chemotherapy for cancer she had. And this lady said it made her joints ache like she had arthritis. Confusing, huh? Reminds me of the days when burns were treated by heat to drive the heat out!
Anyway, Sheila is really anxious to start her antibiotics. Hopefully, she will be able to report good news in a few months.
Here is a progress report at the end of week 2 on Sheila's antibiotic therapy (100 mg minocycline, Monday, Wednesday and Friday).
The good news is that Sheila had a bad (good?) flare this week (to her it means the medicine is working) as all have predicted. She was miserable for 2 days and always seems to be worse on the same day she takes her 100 mg of Minocin. The problem shifted from her hands and wrists to her feet and knees. They swelled up like balloons. She also gets a headache and her neck, shoulders, and knees all hurt her pretty bad, especially at night.
Then there's the good news. Her flare has now subsided significantly; her hands look nearly normal and she has much better use of them. She even started her car without her special tool and reported it didn't even hurt, indicating her lateral movement ability has dramatically increased. Her feet improved to where she can get around without hobbling and her knees are much better. She even went to her aerobic exercise class this AM. Her badly swollen hands and feet aren't so swollen, the bluish color has returned to flesh color and she can exercise in the morning. Is it too early to hope? We choose not to think so.
Even better news. She went to her rheumatologist and he couldn't find any joint damage from his xray exam. He is really aggravated that she won't take the usual bad drugs. He is further aggravated when she can discuss things on his level -- a Master's degree in biology puts her in pretty good position. He also prescribed Minocin for her, but insisted on 200 mg pills. Sheila really went to get all her expensive medical records (xrays, blood test results, etc.). She may not go back until she gets well enough to gloat.
One thing for sure, if attitude helps one get well, she is headed for an early recovery. She is really tough and really attacks this thing. The encouragement from the group has really been helpful.
Sheila's trouble started in her hands and fingers. She started on the antibiotic therapy two weeks ago. We think she has had some improvement already, but it is a real struggle. The pain in her wrists and hands has subsided, but her feet and ankles give her a lot of trouble. But she is a fighter and has not given in to it. Exercise, keep moving, etc. She is now implementing new diet rules; minimum sugar, cutting back on things to try make her body more alkaline.
What a miserable three days Sheila had this week. She suddenly got so bad that she could not sleep in the waterbed and had to go to the guest bedroom where the bed is farther from the floor (she could roll out of it). After she went to bed, I covered her with some blankets because she was cold. In the middle of the night, the weight from them was very painful but she was in so much pain that her wrists, knees, feet, shoulders, etc. wouldn't function. She started moving anything that would move, and finally got mobile enough to remove the blanket with her teeth. She didn't want to awaken me through this ordeal! Is she a tough one or not? On the one to ten scale, she scored two days as zeros. According to my graphing rules, this means you have to get better to die!
But, the good news. She really was expecting something like this because of "warnings" from the group. But this bad? Well, she says you can't know how bad this is unless you go through it (and here is one who has had three kids and cancer surgery). If this is a Herxheimer reaction, it's no wonder they gave it its own name! But for the last 2 days, she has recovered nearly to the point that she was before this attack. Her main problems are feet and knees. They have improved but she still must hobble around. Her "get well" attitude and sense of humor have remained intact. She has developed an egg sized lump on the back of one of her knees. The "great" rheumatologist says, "looks like a cyst is forming" and dropped the issue. Anyone heard of or have anything like this?
Also, she went to our family Dr. He was so sympathetic and encouraged her to continue the treatment although he knows nothing about it. He said he was certainly not opposed to alternate approaches to these kinds of things. He is interested, so Sheila is getting him a "package" together. The rheumatologist wrote him a long letter. I don't think he appreciated Sheila's knowledge and opinions on the subject of RA.
Sheila is beginning her 4th week on 100 mg Minocin per day. She had two immobilizing Herxheimer reactions 1 day apart. In each case the attack lasted about 12 hours. She has felt pretty good for the last 6 days with most pain in her wrists, ankles, and knees. Mornings are the worst, but by bedtime she feels about 5 on a scale of 10 (which is a real improvement over her original state when she started). Her wrists continue to get better and she now has lateral movement. She can put on her clothes, button things, and turn the ignition key without her gadget. Looking at the daily curve indicates that her AM pain level has improved from pre Herx to post Herx. The PM pain goes back to her previous high of about 5. She has found that 1000 mg of Relafen per day (rather than 1500) suits her fine. It's hard to distinguish between the two doses, but dropping to 500 causes more pain than she wants to endure, especially in the morning. Some of you have mentioned that there is a minimum amount that will work effectively. Perhaps she has found it. All in all, Sheila is in good spirits with a very positive attitude. She believes she is getting better every week. She is prepared for the long haul. She dreads the Herxheimers, but knows she must endure them to get better.
Just let me say thanks to all of you for your concern and support. It would be difficult to make it without help. I have no doubt that she would have terminated treatment after those Herxes had not others not told her they were coming.
Sheila just completed week 5 of 100 mg Minocin on MWF. She has had no Herxheimers for the last two weeks. As I view her "wellness" chart, it looks like has reached a plateau of sorts. On the days she takes the Minocin, her joints swell and she has difficulty getting around. But on the next day she rebounds to her previous best day. I think this means that the antibiotic is still doing its job but that the largest mass of bad guys was at least given a severe blow. When I ask her how she feels on a good day, she says GREAT. Then I ask her to scale it and she says to give her a 5 out of 10. This tells me she is coping superbly but really has a way to go to be her old self. The chart plainly shows a slow improvement with the mornings, which are her worst times, beginning to converge on her evening wellness, which is her best time. She is encouraged that it is working, but of course would like to be 100%.
To all those just beginning this therapy, listen to the others in the group and also plot your daily feeling of wellness. It will give you encouragement on the bad days because you can graphically see your long term progress. It is easy to get lost in daily sick feelings and overlook the long term success.
Sheila is beginning her 7th week on 100 mg MWF Minocin and 1500 mg/day Relafen. This last week was not good since the arthritis has settled in her knees and feet causing limited mobility. Her wrists and hands have improved to where she can use them much better. Her overall "wellness" in the morning is about a 5 out of 10 (perfect health). She is usually significantly better after noon, however, we have noticed that her mornings are getting better, approaching about a 4, whereas her afternoons are vascillating between about 4 and 5. She will really have improved as soon as those little critters (Mycoplasma?) in her knees get zapped to the same extent they have in her wrists. Her attitude is still great, even though she longs for a return of her mobility.
She has come up with a very astute observation in my opinion. She has noticed that overall, she feel about the same wellness as last week, BUT, the pain is changing from what she calls "active pain" to "passive pain". At first, the pain was always there and wouldn't subside no matter if she was still or moving. Sharp pain radiated from her joints all the time. However, now she says that the pain doesn't do this nearly as much. It mostly occurs as a result of moving and is much more localized to the affected joints. This tells this engineer that the antibiotic is winning the battle but just doesn't have complete control. The pain is cyclic as predicted but is at a lower level that initially. The morning pain level is decreasing and approaching the evening pain level (which is less). Exercise helps tremendously. Sheila is faithful to mount her "Fitness Flyer" several times a day to limber up the joints. She dreads getting on the thing, but is always glad she did afterwards.
All in all, the curve says she is improving. The flare cycles are getting farther apart and do not hurt as badly. Her "wellness" stays constant because the pain is switching joints, like from hands to feet and knees. As soon as they reach the same condition as her hands and wrists, then she will be up there at the 6 out of 10 range.
For a couple of days her feet had very little swelling. She was so excited when she could see the veins and tendons in her feet. This was a great improvement.
Minocin and Relafen seem to be doing their things.
Sheila has had a pretty rough week this 7th week of 100 mg Minocin MWF and 1500 mg daily of Relafen. The RA has gone to her knees and ankles, thus she is having a hard time getting around. Her wrists have improved some, but even they have become less agile. As I review her chart, I have expected her to go into a Herxheimer reaction but she hasn't as of yet. The initial signs are there, but it always turns around before she hits the bottom of the chart. She didn't have but 1 five (out of 10) day. The others were around 4. She didn't feel good enough to accompany me to my Dad's funeral which meant she felt a lot worse than she lets on. But that is Sheila. She is tough and has an excellent attitude with no hint of depression yet. She has decided to see Dr. Franco at Riverside and has an appointment. I'm really glad she decided to do this since it will give her a baseline and learn for sure that she doesn't have other complicating factors. Besides, she can visit our daughter and the three grandsons (twins + 1 born less than a year before the twins). This daughter is the Phd toxicologist. They can have a good pow wow.
All in all, the chart says she is improving. The pain swings are not nearly as dramatic as the first two weeks and she hasn't had one of those incapacitating Herxheimer things.
While at my Dad's funeral (100 years old when he died) I was amazed at the number of women who had or have had a friend with Lupus or RA. I've sent them a lot of info from the web sites. No one in Central Texas seems to have a computer though. You would have thought I was an MD or something. When asked about Sheila and I told them her situation, they just surrounded me for information. There should be a run on "The Arthritis Breakthrough". I read it on the trip. What a great book! One must read it cover to cover to get the required info.
Here is a summary, especially for those just beginning the therapy.
Sheila has been on 100 mg Minocin; 1500 mg Relafen MWF (really every other day I have just learned - she says it is better for her?) for 8 weeks (beginning week 9). Her RA came on very suddenly. From a noticeable swelling in her wrists with no pain to painful, incapacitating, full swelling within a month and pain in all her joints. The first thing that happened within two weeks on Minocin were two Herxheimer reactions that lasted about 12 hours each . She could hardly move during these reactions and I had to assist her to stand. She has had no more of these severe reactions, and her wrists have steadily improved. She has good mobility, very little pain, and very reduced swelling in them (but not much strength). They are worse in the AM than the PM. The days she takes the antibiotics are usually worse than the other days.
Her knees and ankles are now undergoing the same reaction that her wrists did previously. Some days she can hardly get around with bad shooting pain radiating from her knee and ankle joints. Then some days she gets around very well and the pain is more of a nuisance than incapacitating. The swelling in her feet causes her to hobble around. The worst part has been when the knees feel as though they will not support her weight. She is anxious for this phase to be history.
I plot her "wellness" twice daily on a scale of 0 (must improve to die) to 10 (completely pain free with unlimited mobility). I plot a point when she arises in the AM and when she retires in the PM. This curve and my observations clearly indicate a continual improvement although Sheila wonders sometimes if she is. The nature of her pain is changing from pain no matter what she is doing or position she is in, to pain/stiffness when she moves or gets into a strained position. To me, this is a good sign. Her hands/wrists continue to improve. Her knees and ankles seem to improve, then revert back. However, I have noticed that her better walking days are becoming more frequent than her bad walking days and she doesn't feel like her knees will collapse as often. We have received many wonderful suggestions, but none any more beneficial than keeping this chart. It provides encouragement during the bad days, because this history indicates the bad days turn in to good days. This is especially helpful when the pain is so bad that Sheila even considers taking some of the BAD drugs prescribed by her rheumatologist or thinks that perhaps the antibiotics are not working. The 3 steps forward and 2 back is a real phenomenon.
Sheila is one tough woman. She will not allow herself to wallow in self pity and does as much (housework, shopping, visiting with friends, teaching the kids at Church every Sunday, etc., etc.) as her body will allow. The messages from you that have IT worse helps much in this area. We really feel for the many others whose situations make her condition seem mild. And, she exercises every day, several times a day on her aerobic "Fitness Flyer". She says this is wonderful therapy. It always helps her mobility and keeps her in physical shape.
Sheila has survived a total of 9 weeks of Rheumatoid Arthritis under antibiotic treatment (100 mg Minocin every other day and 1500 mg Relafen daily). Not only has she survived but managed to begin recovery from a step backwards. Last week ended with her feeling better than ever. It lasted one whole day. Then she began slipping backward in wellness due to her knees and ankles being stiff, swollen, and painful making it difficult to mobilate (her hands and wrists continue to gain strength and be less painlful). But about mid-week her knees and ankles began to recover - they would support her weight without feeling like they were going to collapse. Sheila says that RA is not a disease for the impatient. It is difficult to keep a positive perspective when you hurt every time you move (and much of the time when you don't even move) and every joint is stiff and swollen. As her friend with terrible, long term RA says, "it's like having a sprained ankle all over your body that never getting better - just worse" (she is not convinced antibiotic treatment is best for her, yet ... even though the gold and methotrexate, and every other RA drug she has taken since she was 30 years old is becoming ineffective. It is heart wrenching to see how her joints are deformed from many surgeries, and her eyesight is now being affected, etc.)
But, Sheila and I have another way to look at this problem and it's through a little chart that I keep (and so should you!!!!). I ask Sheila how she feels every morning when she gets up and every night when she goes to bed. A 0 means she has to get better to die (a little sadistic humor here - but a real experience during her Herxheimer reactions). A 10 means she feels as good as she can remember how being well felt. What I have found is that it is very difficult for Sheila to know if she is improving or not. When you hurt all the time, it's difficult to remember how you felt 3 or 4 days ago. Thus, I ask her how she felt with respect to yesterday. She can recall that pretty well. If I ask her a few questions, I can even get a better answer. Questions like, "Do your ankles hurt as bad as yesterday morning?" or "did your energy play out today like it did yesterday?", or "does that left knee have those stabbing pains today?". I also observe her movements, energy, whether she visits her friends, hobbles to the mall, and if her eyes have lost some of their sparkle, etc. When I ask for an overall "wellness", most of the time she will say she feels about the same overall unless she really has an improvement or the opposite. But when I ask those little questions during the day, and just observe, I can tell if she has improved or has degraded. So, I use her answer as a base, then, I'll step the score up or down a half step based upon my observations.
I write all this to say this. To you antibiotic treatment fans who are struggling with this from day to day, you may not feel an overall improvement because progress is slow and is masked by your pain and discomfort .... and just plain tiredness of it all (perhaps depression?). BUT, I would encourage you to have faith in the process and generate hope in your mind that in time you will be able to SEE the improvement that, according to the testimony in this group, is there to some extent already.
The chart has marvelous information. As I look at it, improvement cycles up and down. But a straight line sloping upward toward "well" can be easily fit through the points. The line begins to be defined at week 6 (after the herxs plus a couple of weeks of no noticeable progress) and has increased 2 points (this is a 20% improvement in 3 weeks --- not bad for a treatment that takes years!). Sheila knows she is improving as she thinks back. Her pain has changed its nature from active hurting with no movement) to more passive (hurting during movement). Her wrists are definitely better; and she now believes her knees and ankles are getting better. At first she experienced a wide difference in how she felt in the AM and PM. The AM wellness is improving the fastest and is now within a point of the PM score. And she is getting more spunky; going out with her friends more, etc. I know she is improving. She told me last night, "I think my past energy level is coming back". Great, huh?
Sheila is taking 100 mg Minocin every other day and 1200 mg Relafin daily. She has been diagnosed with RA since about the first of the year. This report period, Sheila had a string of 4 days feeling the best she can remember, attaining a "wellness" rating of 6.5 out of a "fully well" score of 10. Most all pain was gone from her knees and ankles/feet even though they were somewhat stiff causing her to still hobble around. Her wrists continue to be weak but essentially free from pain; she can now work them out a little with a light weight.
Then WHAM! The two steps back on Saturday AM. Her knees swelled and became essentially immovable. Her feet swelled and were like "clubs". From her knees down she was as stiff as a board. Being the medical nonexpert that I am, I figure it was a "mini-herxheimer" if such a thing exists. She wasn't in so much terrible pain as just stiff and could hardly mobilate. (It's hard to know how much she really hurts because when asked she always says, "fine"). I surmise that she had a large antigen dump as the antibiotic did its thing. Her ankles did have significant pain when she walked but very bearable while inactive. She dropped two whole points on the morning wellness curve.
Well, The rebound has been good. By Saturday evening she had loosened up considerably. By Sunday she had recovered by a whole point. By the end of the report period she was feeling pretty good; about a 5 1/2.
But, as an overall summary, She has steadily improved but with the expected ups and downs. Whereas she used to always have a bad day after taking the Minocin, now she doesn't react as severely, and sometimes there is no difference than the non taking days. Her wrists continue to improve and her knees no longer have the continuous radiating "flare" pain even though stiff and uncomfortable. Her feet are the main problem now. They are always swelled very large which makes it difficult wear even 3 oversize shoes and to walk. When she does walk there is considerable discomfort - and pain.
Looking at the chart and reactions that have occured in her wrists, hands, and knees, I predict that her feet will get better soon. The swelling will go down just like her wrists/hands and knees. Yep! it's obviously working, but we expect it to take a while before she gets into the 8 range on the chart. Then what? Will it start all over with the hands to a lesser degree? Only time can answer these questions. Sheila's attitude continues to be marvelous. This thing has not whipped her. She is convinced that she is going to win this battle (although she weakened some during the mini-herx). In fact, today she went to Albuquerque (a 250 mile trip - one way) with daughter #1 to assist her in some minor surgery. She is then scheduled to go to Riverside to see Dr. Franco May 6th. And, daughter #3's wedding is coming up the end of May.
We shudder to think the shape she would be in had it not been for the antibiotic treatment and this support group.
Wow! Sheila has experienced a large step forward. Her knees and feet have improved significantly for the last 7 days. She doesn't hobble much and says the pain has subsided very much. Pain has begun in her neck and shoulders, but is very bearable at this point. It seems that once the mini-herx occured, it sorta flushed out her system. She is about to wear out the "fitness flyer" aerobic exercise machine, is sewing again, and shopping, and just having a good time.
She is going to visit Dr. Franco next Tuesday and is looking forward to it very much. He established two appointments; one on Tuesday and one on Wednesday after he has reviewed the test results. She finally talked the local rheumatologists out of the records we paid for. Boy did his staff give her the runaround. But Sheila is persistent and won the battle.
I'll let you know how the appointment goes. She will stay in California for a week. Our #2 daughter, son in law, and 3 grandboys live in San Diego so she will stay around for a visit and help them celebrate their birthdays (twins plus one 11 months apart). The "boys" are really excited that she is coming. Of course Sheila is not all that anxious. NOT!!!!!!
And, this group can take a lot of the credit for Sheila's good attitude. It is easier when you what to expect in this battle. Thanks again for the support.
Sheila has returned from her appointment with Dr. Franco in Riverside, Califonia. Her report was very good. He predicts that if she continues to follow the protocol, that she will be in remission within a year, meaning that she will still be on antibiotics, but will be essentially free from arthritis symptoms (she may always have problems with damaged joints, however). Give it another year and she should be able to significantly reduce or stop treatment. He stated that one problem with this disease is that there is no way to tell if it is "cured" since the bacteria has a way of "hiding" and then can be triggered to start up again and multiply like crazy. We have read some cases of this from posts within this group. But she should be off the Relafen which has always concerned her. He was especially pleased that she had began the antibiotic treatment as soon as the RA was discovered, and was taking dietary supplements. He is really strong on taking particular dietary supplements and says they are as important as the Minocin for complete recovery. In fact, he dispenses (sells at cost) these vitamins and things from his office, stating that they are the best he knows of. Like all supplements, they are expensive. However, in my opinion, not as expensive in the long run as the surgeries or missed work one would have to undergo for those bad days, joint replacements, joint repairs, etc. that would occur if RA were allowed to run its course unabated. He stated that drinking chlorinated water was not good at all. Sheila was already off tap water. He indicated that about 20% of his patients were not helped by his treatment protocol. He suspects that some RA is viral, thus, not affected by antibiotics. That leaves 80% who range from being significantly helped to advancing to the point where no RA symptoms exist. A fantastic statistic when you consider the alternate treatment which, in efffect, has no RA abatement claims - one just feels better as the disease continues to ravage the body in its own time frame. Or in other words, 99.99% failure.
He did find some joint damage in her knees and toes. As Sheila looks back in time, she now thinks that RA was lurking in her body for years. She has had intermittent knee, neck, and foot problems for a long time, and just sorta learned to live with the pain when it came. She has been in good health and always exercised which probably held the RA in bay.
Dr. Franco prescribed a bunch of dietary supplements that are designed to "naturally" help repair soft tissues and connective tissues. She had no shoulder or hip damage that he could find. He also said he would work with our family doctor to administer a series of IVs designed to accelerate her recovery. He increased her Minocin intake a little bit also.
All in all, Sheila was really glad she went. Dr. Franco spent a lot of time explaining things to her. She now has medical records that will serve as a baseline to determine actual bone and blood improvements if they occur. He would like for her to return for a second look in six months.
Other than overdoing it during her trip (my observation), she feels better than she has since being diagnosed (her observation). She got up this morning after a good night's sleep (it is about 700 miles to Riverside from here, and she and a friend drove) feeling what she says is GOOOOOOOOOD. She got on her "fitness flyer" and smoked it [worked it so hard it began to smoke ;) ].
Of course Sheila still has RA and it is still bad. We know and she is prepared for backward steps (even though Dr. F. believes that serious ones will be rare if ever). However, she has improved to the point where every day is not a major struggle in survival and it has occured without harming her body. She is running about 65% wellness, thus she has a way to go. She still has a lot of stiffness and can't walk her mile at her old 90 mph pace ;) like she used too and kind of hobbles about in spite of her efforts not to. She still doesn't have the strength in her hands and wrists she would like, nor the overall stamina of a year ago. Joint pain comes and goes (usually within hours) But, wow! Her improvement since January 1997 is indescribable. And we expect the remaining 35% to be much slower (but more bearable).
We are excited and pleased over Dr. Franco's assessment. Sheila wanted to improve so badly that I was a bit concerned about the placebo effect. Dr. Franco's assessment verified our observations and hopes. NICE, HUH?
And to the group. All your thoughts and prayers have been a tremendous support. Please don't stop them. How can one even begin to thank all those who have been such a source of information and encouragement? I don't know, but I will say again, THANKS, THANKS, THANKS. All of you are the definition of friends. Without the information you have provided our outlook would be bleak indeed!
Week 13 of 100 mg Minocin every other day and 1500 mg Relafen daily has been "plateau" week; feeling about the same every day. This is the longest time she has gone without some kind of obvious wellness change either backward or forward. But who's complaining? Not Sheila! She feels and gets around so much better than in the past that "recovering" is becoming a cautious part of her vocabulary. She is sorta expecting some backward progress since Dr. Franco increased her Minocin dosage which might increase the bacteria kill-off rate, but it hasn't happened yet; hope it doesn't. Sheila is also considering reducing her Relafen by 500 mg per day to see if she can do it without upsetting her wellness too much. The insiduous nature of the side effects of the NSAID drugs is always on her mind; she would like to be off it totally.
One of the interesting parts of this antibiotic treatment is that everyone's body seems to respond to the protocol and the support drugs somewhat differently. This allows room for those who are "self-treating" to "listen" to their body's reactions and do some minor adjusting of the "support" drugs like Relafen. Kinda scary, but it works.
All in all, Sheila felt good all week; about a 7 on a scale of 0 - 10 with 10 indicating total wellness. She has progressed to this point from a 0 score back in February. She still experiences stiffness in her knees, feet and wrists, especially in the morning and after overdoing her activities (which she is prone to do when she feel good), but most of the terrible shooting as well as residual pains are gone for now. She still has low intensity pains here and there, but they do not compare with past dehabilitating pain and stiffness to the point of immobility. Her wrists are still weak but she is now lifting 3 pound weights to build up her strength. Much of her energy has returned but her stamina is still well below normal. She even tried to pick up our 2+ year old grand daughter and nearly made it. She has only now gotten to the point that she would even consider this. She walks nearly normally - without the hobble.
She will get some stamina tests this weekend as we travel 500 miles to visit my 95 year old mom whose health is failing very rapidly. Then a week from now, we will be traveling to Albuquerque (200 miles) to our youngest daughter's wedding. I'm betting she will do great.
To you out there on or contemplating this therapy. If you look at the options, and we did, this one wins hands down. The risk to health and chance for recovery don't even compare with the alternate therapies. Some authorities say there is about an 80% chance of recovery if you stay with it for the years it often takes. Sheila seems to be one of the 80% since she intends to stay with it and the Doctor's prognosis was good. But it is a patient person's therapy. You can get in a hurry and get impatient to get well, but the antibiotics will work in its own time frame; fast, slowly, or somewhere in between .. it's choice. Those little bacteria often seem hard for the antibiotic to track down and destroy. Sheila says she gets really, really tired of the pain, stiffness and lack of mobility, but gains much hope and confidence as she slowly feels better and better.
One thing for sure. Don't expect the medical community to endorse the treatment. If you find a doctor that will enthusiastically prescribe the protocol, you are fortunate indeed. But not finding a doctor is no excuse for not taking the matter in your own hands and allowing this group to assist you in attacking this terrible malidy. After all, it is your body and life that is at risk here, not any doctor's or the medical community's.
This has been an interesting two weeks for Sheila (She was been on 100 mg Minocin and 1500 mg Relafen since late January 1997) After the visit to Dr. Franco he increased her Minocin to 200 mg MWF (She now takes it on MWF). We expected something to happen, but did not really know what. She was also subjected to a couple of stress points; making a whirlwind 1000 mile trip to visit my mom one weekend and then being involved in the marriage of our youngest daughter the next. We decided it would be easier to fly as far into Midland, Texas and then drive a rental car on to my home town. Bad Decision! Our landing spot was fogged in, thus went to Austin, then to Houston, then back to Midland and the rental car (which was a hunk of junk) We got to our destination about the same time as if we had driven the whole distance. :( But the wedding was really great. :) We now have a new son in law and we really like him. Nice, huh?
Anyway, Sheila's progress had leveled to a 7.5 out of 10 ( a 10 represents complete recovery) for week 14. She felt good. No real incapacitating pain, but a lot of stiffness in the mornings and low strength in her wrists. She could walk pretty good, and without the noticeable hobble.
Now week 15 was different. Her progress was backwards. She regressed a whole point. It started in her wrists (her first indication of RA was in her wrists), then progressed to her feet/ankles (the second place it attacked during round 1) causing her to have to wear those oversized shoes and to hobble. Thus, we call this Round 2. The pain was not as intense nor was the swelling as bad, as the first round, but she was very uncomfortable and hurt a lot. Then today -- miracle again. Most of the pain was gone in her feet and ankles and she just barely has to hobble. She nearly recovered to the 7.5 level overnight. My guess is that the stress and/or the extra antibiotic caused the flares. If it was the extra antibiotics, then the chart history and extrapolation indicates she should improve to a bit higher level. If it was stress, then I expect her to improve back to the 7.5 level and continue a very slow improvement that may not even be detectable on a weekly basis.
But, at the 7.5 level, she feels better than she has since about Christmas. Isn't that great? She is continually gaining energy, but remains stiff, especially in the mornings. She says "good feelings" kick in about noon. Her mornings and evening wellnesses are getting closer together all the time. But she is tired of having RA. All you know this feeling I'm sure. Sheila has not had it nearly as long as most. We really can emphathize with those who have had it longer with not as quick results.
That's about it. We really are convinced that she is on the recovery road. Thanks to all who have helped.
I reported for week 15, that Sheila had taken a step back and postulated that it could either be stress related (a trip to Dr. Franco, a wild airplane flight over Texas, and a daughter's wedding all within 4 weeks) or the fact that Dr. Franco increased her minocin dose 100 mg to 200 mg MWF. Well, she has recovered the backward step this past week AND reduced her Relafen dosage from 1500 mg/day to 1000 mg/day. WHAT ABOUT THAT?
Not only has Sheila recovered the wellness step she lost last period, but most of her body is even better than before the minocin increase. The chart I keep predicted this, thus I think the increased dose caused round 2 to occur - once it killed the critters and the resulting antigens were removed, then she was free to increase wellness.
The remarkedly strange thing was that flares occured in the exact same sequence as originally occurred --- hands/wrists, then feet/ankles, then knees, but was not nearly as painful and didn't last nearly as long as the very bad first round. The only pain problem she has now is that new pain has started in her shoulders and neck. She had a couple of pretty bad days, but not bad enough to keep her from doing most of what she wanted to do - except sew. She is tough and refuses to even let RA win a small battle without a real fight. The more intense pain could also have been due to the decreased Relafen plus and/or the increased dosage could have caused greater penetration into the neck and shoulder joints (how's that for engineer thinking?). During this time she had returned to her tubular water bed. We have found that the water bed is great when the old body's skeletal system is in order, but get a bad back, or sprained anything, and WOW, it aggravates the hurt terribly. She thinks this might be aggravating her sensitive neck and shoulders. She went back to the standard mattress last night and felt much better today. So much for water beds, huh?
Bottom line for the week. Sheila is as busy as a bee and essentially pain free everywhere but in her shoulders and neck. If she progresses as usual, she can expect these new pains to continue for about a week before things improve (chart extrapolation again).
She can walk without hobbling (no knee or ankle pain and the swelling is almost gone) - but not as fast and as far as before RA, she can lift our 2 year old granddaughter (wouldn't even think about doing this a month ago), can even drive my pickup (stick shift with very difficult emergency brake), and has returned to sewing - her favorite pasttime (oops, better say next to shopping - and having "lunch" with her buddies). She can now work her wrists easily with 3 pound weights and does pretty well with 5 pound weights. She has gained a lot of strength in her wrists .. she can now open some jars, start her car without the special tool, slap me around pretty good :), and do most of what she used to do with her hands and wrists, but not as long and movement range is still restricted. Her stamina has not fully returned but the "fitness flyer" needs more rest ;) than ever - she really gets that thing to squeaking as she "walks" to a Fats Domino tape - that dates her, huh?. All in all, she is about 80% recovered at this point.
Now, is her recovery due to the placebo effect, normal remission, or due to the fact that she quickly got on the protocol and has followed it faithfully? Plus she eats a lot of vegetables, doesn't do sugar and some other stuff, and takes dietary supplements suggested by Dr. Franco.
Skeptics can say anything they want! Sheila and I have absolutely no doubt that the antibiotic therapy has saved her from a lifetime of worsening misery. If she never got any better, she would already have won 80% of the battle. But we have every reason to believe that she will be 100% within a couple of years, just like Dr. Franco predicted.
WEEKS 17 AND 18 - FINAL REPORT:
Sheila is enthusiastically following Dr. Brown's protocol. She takes dietary supplements, exercises every day, has modified her diet to exclude sugar and some other things, eats lots of fresh vegetables, and drinks lots of unchlorinated water.
She has progressed from a very sick, painridden, swollen, immobile, and essentially incapacitated lady who had lost the sparkle in her eyes, to one who has recovered about 90% and is just radiant. She was introduced to pain through childbirth (3 kids) and two major surgeries (including one for cancer). But RA really was the epitome of pain for her, mainly because of the persistent, never ending, throbbing, radiating, and incapacitating nature of it.
Today, 18 weeks later, she still has some shoulder pain, has less stamina, and has an occasional mild herx. But, her feet have returned to normal size, so she has set aside the extra large shoes she had to wear and her hands have lost the bluish tinge they had. She has regained much of her wrist strength and mobility. Two months ago, lifting her two-year old granddaughter wasn't even considered, now she carts her around freely and painlessly. Her fingers are still swollen a little bit, and she has some of those nodules here and there, but there is not much, if any pain unless she overstresses. Her knees no longer hurt but she still cannot bend them as deeply as before. But everything continues to work and feel better every week.
During the past two weeks, she has noticed that she gets up in the morning with much less stiffness where initially it took until noon to really begin mobilizing. This means she feels good all day now. Also, she visited Dr. Franco, a protocol specialist about a month ago, and he increased her dosage from 100 mg to 200 mg three days a week. After the first dose, she began experiencing a series of flares that followed the identical route that her first dose followed. First her wrists, then ankles, then knees. Then she had a mild Herxheimer. All this lasted about 3 days. The intensity was not incapacitating, but it was a definite step backward. But once the Herx was over, she went to the highest state of wellness she had experienced since being diagnosed. She has also decreased her Relafen dosage from 1500 mg/day to 1000 mg/day and experienced no noticeable increase in pain.
Every week she gains a little strength, a little mobility, loses a little swelling, and a nodule disappears. There are painless areas of swelling on her hands and feet but they seem to be slowly reducing.
She says she feels good and from my position she looks great. She has a sparkle in her eyes, a bounce in her walk, and can do most anything she used to do.
Guess what her biggest problem at this time is? She tends to overlook taking her medicine. This is a far cry from when she could hardly wait until time to take it so that she could get some relief.
To you out there on the fence concerning the antibiotic protocol. If it works so well for Sheila, why wouldn't it work for you? The health risk is much, much less than conventional treatment. The hope for recovery is infinitely greater since conventional treatment has no curative properties. It seems to me the bottom line is whether you want to feel better temporarily while conventional drugs permanently damage your body parts, or go through the temporary suffering associated with the "steps back" which are indicators of recovery with the protocol. This was an easy and correct decision for Sheila. Hopefully it will be for you too.
And to the support group. There is no way that I know of to even approach a vocabulary selection that expresses our real feelings of gratitude. To each and every one who has responded to not only our questions, but questions from all who needed answers ... we read them too .... THANK YOU.
UPDATE Jan 2001
Sheila began the antibiotic therapy in February 1997 soon after being diagnosed with rheumatoid arthritis. She had a very difficult time at first and we wondered if it was the correct approach. After all, her then rheumatologist stated that she was very unwise to go on the antibiotic therapy and encouraged her to immediately began the conventional therapy of Prednisone and Methotrexate. However, she, having a Master's degree in Biology and an intense interest in medicine, knew the long term effects of both those drugs would be devastating to her body organs. Further, we have a close aquaintance that has been on all the conventional drugs for many years and she is in terrible physical shape.
Looking into the antibiotic therapy, it was apparent that the treatment was safe, so it seemed reasonable to give it a try especially since the conventional treatment does not cure the disease, just makes one feel better as it continues to progress. So, she sought out a doctor that would prescribe the recommended antibiotic, Minocin. Her rheumatologist was not interested in prescribing but her dermatologist saw no problem with it. He mentioned that he gave more Minocin for acne than she was going to take.
Sheila had a very rough time the first 6 months or so. The Herxheimer reactions were terrible, the pain excruciating .... but she is a tough and determined woman so she stuck to the antibiotic treatment. I can still vividly remember those times when she was debilitated to the point that she could not dress herself or wash her hair, lift her grandchildren, or walk the mall. My good mechanical engineer friend designed her a special tool so that she could turn the ignition switch on her car. But she hung tough and clung to the hope of recovery.
And I can report now on the eve of her fourth annivesity with RA ..... recover she has. I estimate that she had recovered to about the 90% level after 3 years on antibiotics. What I mean by recovery is that she can walk the mall as fast as she used to, she can go on trips by herself, and lives very close to a normal life. Best of all, she is in very little pain. However, she has lost strength in her wrists, sometimes has pain in her joints, and does not have the stamina of old. But, the pain is easily bearable and her swollen joints are all now normal. She could not wear her rings for over two years ... she now wears them with no problem, her shoe size is now normal .... at our youngest's daughter's wedding her shoes were 4 sizes larger than normal.
So, that last 10% has not occurred. There seemed to have been very little improvement in the last year. But, I hasten to say that even though she was still on 200 mg Minocin 3 days a week, her NSAID dosage was reduced from about 1500 mg./day to around 500. In fact, she became concerned about the effects of the Relafen on her stomach and switched to Celebrex. as will be described later. This was a big mistake in one way. She later deduced that it was doing nothing for her, but she stuck with it. Thus, she seemed to get progressively worse as the RA pain slowly returned to a very aggravating but never debilitating level. This indicated that she certainly still had RA, but it also indicated to me that she could operate essentially without an NSAID. After several months on Celebrex she switched to Lodine. Her pain level subsided substantially in the next few months.
During the 3 year period since beginning the antibiotic therapy, she was given checkups for her colon cancer that occurred even before her RA was diagnosed and for other non-RA related illnesses. Her surgeon, who is a member of a nationally recognized clinic, told her that he couldn't believe that she had done so well in her battle against RA. He did not know of the antibiotic therapy, but encouraged her to keep on doing whatever she was doing and praised her for not taking Methotrexate which he described as a real organ killer that he had observed the effects of many time in his surgeries. Her local doctor has become very supportive of her treatment. He is also amazed and states that she is doing better than any of his other patients who have RA. A medical doctor in the family is also amazed and very supportive. He always wants to examine her hands whenever we see him. I might note that the only visible indication of RA that she has is her hands. Some of her knuckles are enlarged but her skin is normal colored and she has no nodules on her knees and elbows .... they all went away.
Then, rather suddenly at the beginning of the summer of 2000, her system began to rebel. The Y2K Bug that was supposed to get my computer didn't, but it really began to work on her. Her pain came back and she even experienced several Herx reactions. Her joints began to ache to the point that it was very uncomfortable and she just didn't feel good. Was the treatment now losing its effectiveness? Had it helped at all? She then switched from Celebrex to Lodine and things got some better but not to the level of wellness she had previously experienced.
She then got an email from a friend describing a new experimental treatment that had high potential for curing autoimmune type diseases. So Sheila got on the phone and set up an appointment with the doctor. He is located reasonably near our home town, so it was easy to visit his clinic. At the same time, I became so concerned that I contacted the wonderful lady, Ethel Snooks, who had been so helpful during the bad early days. Ethel said she thought the problem was that the long term use of antibiotics had caused her gut to get out of balance and she needed to get that taken care of so the antibiotic effectiveness would return.
During Sheila's first discussion with the doctor on the new treatment, he said that he was willing to take her on as a patient and the first thing he was going to do was neutralize her gut and then rebalance everything. This was the first order of treatment for any of his patients and had nothing to do with her having been on antibiotics. So, Sheila said she had nothing to lose by trying the new treatment since it would do what Ethel suggested needed to be done. The doctor said it would take several months of treatment to see if it would be effective against her RA. And that is where we are today.
Once her system was straightened out, Sheila felt great again. This was even before the new treatment could begin to work. But, she has decided to stay with the new treatment just to see if it can cure the last 10% of her RA. Time will tell if this was a wise decision, but I don't see that she has anything to lose. Sheila is no longer taking the Minocin, but she is taking an NSAID. I have noticed that the enlarged knuckles have reduced in size. However, this may not even be due to the new treatment.
The new treatment is called Enzyme Potentiated Desensitization (EPD). It is "a method of immunotherapy developed by a Dr. Leonard M. McEwen in England in the mid 60's. The method involves desensitization with combinations of a wide variety of extremenly low dose allergens, mixed with the enzyme beta glucuronidase." (W.A. Shrader, Jr. MD, Princible Investigator, IRB). During trials, it was reported that this treatment was beneficial to several RA sufferers even though it is primarily being developed for allergy treatments (which, I understand, are often "autoimmune" problems. We do not know whether the treatment will work or not. It is realtively expensive and is really torturous for about a week before the first treatment (very strict diet and gut cleansing procedure). It will take 2 to 6 months for us to know how effective it is with Sheila's RA. One interesting thing happened after her last treatment. She had a Herx reaction for about 4 hours that was nearly as intense as those in the early days. She recovered from most of it in a couple of days but it really zapped her. We don't know whether this is good or bad. She will discuss it with the doctor next month when she has her next treatment. It was good that she know what it was or we would have thought she was approaching death. She is not taking antibiotics at the present time.
What do we think of the antibiotic therapy after 4 years? Well, we recommend it highly. It is the only therapy going at the present time that has a chance of making one well. It is just too early to say anything about the EDP therapy. Dr. Shrader is presently attempting to get USDAA approval of this treatment, so we may hear something definitive in the future. Another reason to have hope.
The outstanding lessons learned in going the antibiotic therapy route are these.
(Written by David Pippen. Sheila doesn't do computers, but she is beginning to learn and enjoy them a bit more).
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