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My wife has been suffering terribly with RA, and the disease seems to be progressing so rapidly. It really set in once our son was born about six years ago. Initially, there were flares – periods of pain and periods of reprieve. But now it is pretty much non-stop pain. She is debilitated and cannot even tend to her own care most of the time.
About five months ago her doctor put her on Doxycycline – two a day, every day. We had been to specialists and had never heard of antibiotics for the treatment of RA. In researching the treatment, I was led to roadback and then to Dr. Brown’s book. Reading all the testimonials here and elsewhere gave us hope again.
Now, after being on Doxy for about five months, we have seen no change whatsoever. No herxing, nothing. The only difference is that now my wife has difficulty breathing, and I have read that antibiotics can contribute to asthma. I know that five months isn’t enough to get the full benefit of AP treatment, but we have seen no improvement or any signs, and many of the stories I read suggest that we should see something by about three months.
My concern is that maybe we should be seeing a doctor who is more experienced in AP. My wife’s doctor is great, is not resistant to treatment and lets us participate fully in my wife’s treatment, but I don’t think he is very experienced in AP. I don’t want to jump the gun, though, because we feel very comfortable with him. Should we wait it out? Look into an experienced AP doctor?
If some of you kind folks could give me an idea of what we should expect from the AP treatment time-wise it would be great. Like I said, I keep reading about patients having at least SOME progress by the third month. We are just discouraged and my wife is in so much pain it breaks my heart.
@aristontyler wrote:
My wife has been suffering terribly with RA, and the disease seems to be progressing so rapidly. It really set in once our son was born about six years ago. Initially, there were flares – periods of pain and periods of reprieve. But now it is pretty much non-stop pain. She is debilitated and cannot even tend to her own care most of the time.
About five months ago her doctor put her on Doxycycline – two a day, every day. We had been to specialists and had never heard of antibiotics for the treatment of RA. In researching the treatment, I was led to roadback and then to Dr. Brown’s book. Reading all the testimonials here and elsewhere gave us hope again.
Now, after being on Doxy for about five months, we have seen no change whatsoever. No herxing, nothing. The only difference is that now my wife has difficulty breathing, and I have read that antibiotics can contribute to asthma. I know that five months isn’t enough to get the full benefit of AP treatment, but we have seen no improvement or any signs, and many of the stories I read suggest that we should see something by about three months.
My concern is that maybe we should be seeing a doctor who is more experienced in AP. My wife’s doctor is great, is not resistant to treatment and lets us participate fully in my wife’s treatment, but I don’t think he is very experienced in AP. I don’t want to jump the gun, though, because we feel very comfortable with him. Should we wait it out? Look into an experienced AP doctor?
If some of you kind folks could give me an idea of what we should expect from the AP treatment time-wise it would be great. Like I said, I keep reading about patients having at least SOME progress by the third month. We are just discouraged and my wife is in so much pain it breaks my heart.
Sorry you wife is having such a hard time of it. Is there a reason she is on Doxycycline rather than Minocycline? Also, is she under the care of a doc for asthma? Lots of meds can cause shortness of breath, it is a standard side effect to most everything, but in the case of Doxycycline is very unlikely since it actually can help those with asthma according to this study
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3422814/
Having an experienced doc can always be advantageous, so perhaps looking into some in your area is not a bad idea just in case you need them in the future. Some can even work with your local doc if need be.
Depending on how long she has had RA, it sometimes take a while before it starts to kick in. Some people, especially those with long standing disease tend to start off with IV Clindamycin according to the Historical Protocol. That is something you may want to look into also.
Has she been tested for Lyme? Lyme has been called the “great mimicker” since it manifests itself as so many different diseases. Even when a test is negative, you cannot rule it out, so this is something to pursue, if you have not already done so. IMO, the best test is the CD57, it measure a specific type of Natural Killer Cells that are prevalent if Lyme is, so may be a good idea to speak to your doc about this too.
I am sure others will chime in with some good recommendations, especially if they have RA, which I do not. Good Luck!
John
Hi John,
She is on Doxy because the price of Mino is prohibitive for us. Her doctor checks her breathing every visit, but says her lungs sound fine. We suspect the doxy because she began having breathing problems when she started it. From our experience with having gone through so many medication regimens, there rarely are coincidences when it comes to these side effects. She has been prescribed an inhaler, but it doesn’t really help, which is strange.
She doesn’t always have breathing difficulty, though, and our larger concern is the efficacy of the Doxy and discouragement. Everything only seems to get worse, as I am sure many here have experienced. We just want to make sure we are going the best route. We are uninsured and are not wealthy, so we have to be selective about tests, treatments, etc.
Thank you for your input. I would appreciate others’ experience with regard to the time-frame for Doxy, too.
Minocycline generic (eg. Teva) is much cheaper than Minocin the brand. Also, every day, might be too much and driving cost up. As little as I know, minocycline is the one to try as being in general a more effective drug. Success!
@aristontyler wrote:
Hi John,
She is on Doxy because the price of Mino is prohibitive for us. Her doctor checks her breathing every visit, but says her lungs sound fine. We suspect the doxy because she began having breathing problems when she started it. From our experience with having gone through so many medication regimens, there rarely are coincidences when it comes to these side effects. She has been prescribed an inhaler, but it doesn’t really help, which is strange.
She doesn’t always have breathing difficulty, though, and our larger concern is the efficacy of the Doxy and discouragement. Everything only seems to get worse, as I am sure many here have experienced. We just want to make sure we are going the best route. We are uninsured and are not wealthy, so we have to be selective about tests, treatments, etc.
Thank you for your input. I would appreciate others’ experience with regard to the time-frame for Doxy, too.
Hi,
From all the information I have read, both clinical trials and patients evaluations, and my own use of antibiotics, minocycline is much better than doxycycline for any of the rheumatic diseases. Just check through this forum, especially the testimonials and see the antibiotic which was most successful in putting these people into remission. Also check Pubmed and you will see that Doxycycline is not nearly as effective in the studies they have run. Due to costs, perhaps you should use one of the generics, which are quite affordable. There are a number of good ones that have put many patients into remission. You should discuss this with your doctor, present him the studies and I am sure he will agree that minocycline is more effective. This may be what is holding back the progress you have been looking forward to.
John
Thank you both for this information. I thought I had read on roadback somewhere to stay away from generic minocycline, but if it works, then I think I can find it affordably. I will call her doctor tomorrow and hope for the best. If there is a particular generic we should stay away from, please let me know.
Hi,
I am new also because my daughter was diagnosed in oct, 2013. We made radical changes to her diet and started supplements and that helped so much we thought we beat ra. We were sooo naive. She is on mino and prednisone, but we know she would be much worse without these changes. Also, the members (friends) on this board have given many suggestions that have helped. Has her doctor mentioned any diet or supplement changes?
All the best to her.I am so sorry to hear about your daughter. I hope and pray that she continues to improve. My wife has tried so many diets and medicines that we can’t keep track. I got her the Watson generic minocycline today. Hopefully it will help. Her doctor prescribed 50 mg, twice daily. I am wondering if she should be taking 200 mg on MWF, like so many people here…
Hello and welcome to this board…
Having experience (many years) with AP, I would just like to suggest you start on the minocycline slowly. People with RA tend to react strongly to minocycline…maybe 50 mgs once/day and space it out to M-W-F. That dose can be too much for some when starting mino. A wise doctor told me to think of this treatment as “indefinite”. Patience and persistance…he told me to take it slow and steady!I hope your wife will begin to feel better. You are a caring man and I admire your efforts to seek information and help for your wife.
MaryA,
I encourage you to locate a pharmacy that has the Teva generic, which I was told was made by the makers of brand name Minocin and considered a more dependable generic.Another thing I overlooked (actually didn’t know about this for some time) is to get some pH strips such as Nature’s Sunshine strips, which come with a chart/graph to measure if the body is in a good pH range — and not overly acidic. A quote: “Wellness cannot be achieved in an acidic body; and illness does not develop in a pH balanced body.” Though the body works to keep the blood pH balanced, it sometimes does this at the expense of borrowing/stealing too many minerals from the body and bone, and uses up the body’s needed minerals. Many who are chronically ill have this problem. An overly acidic body will develop more pain, since minerals stored in our body (especially our bones) can be used up in order to neutralize the acidic waste, so this waste can be excreted through the kidneys and not damage them. If you go to the top of the screen and click “General Discussion”, a search window will appear where you can type in “pH testing” and should find detailed information on this.
(When I finally learned about pH, I had been doing well for a long time, and then things began to worsen and I developed really bad fascia and bone pain. Some people lack hydrochloric acid that helps in breaking down and digesting food, and extracting needed nutrients. The acidic waste then must be stored in the body, because of the lack of minerals to neutralize the acidic wastes and excrete them through the kidneys. (Kidneys cannot repair themselves, so the body in its wisdom stores the wastes in fascia and hands and feet, far away from major organs.)
Also, during pregnancy and childbirth, sometimes the resilience of the mother is used up, and various functions of the body become compromised, sometimes with a disruption of hormones. In some new mothers, this hormone imbalance is called a “postpartum reaction.” You might want to do a search for these words in the search window above or on the Internet, if the symptoms seem similar to any your wife has.
Many of us have to play detective for quite a while to find the source of our problems and ways to address them. But, a return to better health is certainly worth the effort. Good luck to you, your wife and family.
AF
I feel so sorry for you and it makes me so angry that your wife is in so much pain. Im in the UK and can hop over to Spain and buy Minocin from a pharmacy if things get that bad. I am totally prepared for the day when my allergy doctor decides that he will no longer prescribe Minocin for me. I too have not got a bottomless purse, and there will come a time where I can no longer afford to see my doctor. As for doxycycline, I have tons of the stuff (I bought it online before the diagnosis of RA) when it was thought that I may have had Lyme. Have a look at my recent post regarding this new drug in the pipeline, it may lift your spirits. If you lived up the road I would give you my stash of Doxy. I know the people that run this site are constantly plugging the book “Road back” but it does have some very encouraging facts, and you can hand it to the non believers and say “read this and then tell me my immune system has decided to hate me !!!!”. 😉
Lemons – thank you for the kind offer. I have read the Road Back and found it very informative. My wife had been on Doxycycline for five months with no results. We are switching to Minocycline to see if that will work better. For those that don’t know, if you request capsules of these generics they are much cheaper, for some reason. I had asked several pharmacies for quotes on generic Mino and they all said about $400. But when I specified capsules, they are about $30. It makes no sense, but it’s the truth.
I have been on Minocin MR for six months and I am nearly pain free. I had sudden onset of what I was told was RA. I promise you that I couldn’t move and spent most of last summer in bed thinking that I was going to die. To be honest at the time I would’ve welcomed death. I took a gamble and refused the drugs offered by the rheumatologist and found this site. I am now walking 2 miles a day and functioning akin to pre RA. I do feel that I need just a little of something else ,as I have reached a standstill in progress but maybe Im being impatient. I really think your wife would benefit if she switched to Minocin but I know nothing of the health care system in the US. I wish I could help as these drugs are quite cheap to buy here in the UK,the problem we have is that there are no AP doctors to advise us . x
Hi,
@aristontyler wrote:About five months ago her doctor put her on Doxycycline – two a day, every day. We had been to specialists and had never heard of antibiotics for the treatment of RA. In researching the treatment, I was led to roadback and then to Dr. Brown’s book. Reading all the testimonials here and elsewhere gave us hope again.
What other medications is your wife taking? Is doxycyline the only thing she has been taking?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein@PhilC wrote:
Hi,
What other medications is your wife taking? Is doxycyline the only thing she has been taking?
Phil[/quote]
She has been purging a lot of what she had taken in the past. She was on quite a high dose of Lortabs, but quit them about a year ago. Anyone who has had experience with these opiates will understand what a testament this is to her strength of will. She also stopped taking Prozac many months ago. She has weaned herself down to periodically (once a week?) taking 5 mg of prednisone. She takes Tylenol and Advil, and metroprolyl as needed.
I just got Watson minocycline for her. Already her stomach issues have improved. Whether or not it improves the efficacy for her RA remains to be seen. We are trying to remain hopeful. It is encouraging to read the many stories of success here. Hopefully we can add to it once we find the right formula. I’ve heard good and bad things about the Watson generic, but mostly good.
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