Lupus and Antibiotics

[Anonymous]

I have been on an antibiotic regimen to deal with low back, gut, urinary, reproductive tract inflammation and pain that is working as nothing before has since this started a couple years ago. I discovered this after taking Doxycycline for a sinus infection and symptoms started to back off. People noticed within weeks how much better I looked and I know how much better I feel. All this when the docs claimed that while my lymph nodes were inflamed I had no infection! Fortunately I have a doctor friend who knows Dr. Brown’s work and has used it successfully in the past and so have an ally. After researching ( and arguing with doctors who can’t figure out why this is happening despite my attempts to send links to the literature) I discovered Dr. Brown, this site, and what appears to be additional explanation AND a connection to bacterial infections and lupus.

I do not have lupus. However, both my ex-wife and daughter do. In addition my daughter has HPV (as do 75% of adults). The problem is she gets false PAP tests, has an enlarged uterus, and just had biopsies. Her doc knows nothing about RBF and the work here. SO at this point my daughter is scared to death because she has lupus and the immune-suppressants she takes wreck her immune system and make her more prone to infection and possible cancer. She nearly lost her leg to an infection a while back. The HPV also adds the cancer risks AND because she takes the I-S drugs the body’s normal control of HPV is not there and makes her risks even higher. (This according to her doc.) With my new knowledge of RBF and the treatments discussed here, I wonder if she isn’t being treated incorrectly and creating a dangerous situation.

I have both Dr. Brown’s book and Henry Scammell’s book on order and should get them in a week or so so I’ll study. However, I am wondering if what appears to be supported here is an antibiotic regimen like I am using to deal with the root cause of lupus and perhaps result in some not needing the I-S drugs and/or reducing symptoms?

I guess since my own treatment that the local MD community scoffs at and considers dangerous (I’ve been told it will “kill” my intestines to take 100 mg of doxycycline a day for more than a few weeks) is apparently something they do not understand or are unwilling to consider, I wonder if my daughter (45 years old) is also not getting the best results and treatment. Forgive an old man and father for wanting to know as much as I can to help her!

That said, anyone want to talk to me about this line of study and treatment as it applies to lupus? Is it really possible that she could find some relief by taking antibiotics? Thanks!

[lynnie_sydney]

Hi deadmann and welcome to the Discussion forum!

Forgive an old man and father for wanting to know as much as I can to help her!

My goodness – forgive? You would be considered a hero around here. What more could be asked of a Father who clearly cherishes his daughter?

Yes, this treatment can most certainly help your daughter and I think it is great that you have ordered the Scammell book (which includes Dr Brown’s original book) as it will give you a great foundation knowledge to this approach to treatment. It would be great if your daughter could read it too – years of experience on AP and of people who choose this form of treatment has shown that the patient choosing to become CEO of their own road back to greater wellbeing and partnering with their doctors serves them very well.

This treatment approach does encompass those with Lupus – although these highly sensitized patients usually need to go extremely slowly with it. This recent discussion thread talks about this:

viewtopic.php?f=1&t=9184&p=68107&hilit=lupus#p68107

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[SS]

Hi ;
I have lupus and taking minocin for the last 14 years .

Yes it works and I am in remission for the last 5 years and doing good. Of course now and then you get some pain due to stress and over work but have a good normal life.

I am taking antibiotics under the supervision of my primary care doctor.

Thanks

ss

[richie]

Hi–Are you the SS I used to speak with —glad to hear you are doing great !!!!
richie

[SS]

Hi Richie:

Yes I am the same SS that used to get help from you and from the board.

Thank you for your support and doing good. I post whenever lupus questions are asked.

Thanks
Regards
ss

[Anonymous]

Thanks for the responses. And yes, I see clearly that I have not only an obligation but a strong desire to see that she gets any help to make a better life I can find. BTW: No cancer in the biopsy results. YES!!!!

In reading I have seen where some say that the lupus can be controlled with this therapy. What I think I understand is that the I-S drugs may be making this worse instead of better by training the body to continually try to overcome the affects of the I-S drugs and upsetting the body chemistry balances. At the same time the real cause of the problem is not being treated, perpetuating the disease. Almost like an addict that has to continually increase dosage to get the same high, right? And the same parallel where the addict is never made whole until detoxed and the root of the addiction dealt with. The body is amazing in that no matter what it keeps trying to correct problems.

So the ABX treatment and reduction or elimination of the I-S drugs is simply a matter of doing two things:
1. Reducing the need to continually increase treatment and drugs to suppress an out of control immune system by weaning off the drugs
2. Going to the root cause of the inflammation – undetected and possibly not even looked for infections

But that leads me to ask about people who say that their rheumatoid diseases were brought on by an antibiotic. Or bad reaction to one. Are there different types of lupus – some that respond and other that don’t? Could it be that it was not the ABX but the initial infection that was never completely resolved because the ABX were used for too short a time? In my own case, I noticed over the last years that when I was given an ABX I did better, and when I stopped after a typical 10-day course, slowly got worse again. Now that I’ve been taking the Doxy for about 6 weeks I am really noticing a solid improvement that does not seem to be fleeting. The point is, does the lupus have the same inherent problem of people not sticking with the ABX long enough to get to the infection? Is there another function of the ABX other than killing bacteria?

I know, lots of questions, but you can see that I am caught between my own apparent success with this and a lack of solid information about my daughter’s (and even my own) treatment. I tried again today to ask the GI doc I have if he could consider why the ABX were working. I am not taking the drug he prescribed because it has a lot of bad side affects and because I do not believe that if I have Crones that I would have my first bout with it at age 62 and because the ABX are working. All I get back is a restatement that I should be taking the Sulfasalazine, but no answers to my questions. Is this what you guys are getting from the medical community? I worry that my daughter is getting the same kind of passive resistance from her docs.

[Anonymous]

More details… I was just told that my daughter has systemic lupus and the ex-wife has discoid. I do not know the difference nor if one or the other or both could be helped by the ABX therapy. More homework and perhaps another opportunity for those among this group to provide wisdom…

I got the Scammell book and have been reading. Given that I am among the world’s most committed skeptics, a man to whom unsupported theory is little different than outright tall tales, I am impressed by portions of the narrative. (Remember that I am apparently already seeing the positive affects of the ABX therapy, and even that is not enough to stand among the choir and sing!) I think I will need more of the technical data to help me confirm or deny what is being said. Anecdotes are indicators and can help to remove fear or help build enthusiasm, but in the end it’s the clinical data that will tell. I am glad that so far that I’ve read, there are a number of citations on trials and research that support this thesis.

One question I do have is this: Since Dr. Brown treated some 10,000 people with this therapy are there results, statistics, and data that could be used to support the theory? It seems this is one of the largest (if perhaps informal) sources of data on the efficacy of the treatment that may exist.

[Anonymous]

Awful quiet. I have begun to wonder if I have asked question I should not have or am doing something considered inappropriate.

[Eileen]

It’s a holiday weekend…so board might be quiet. Hang in there, someone will chime in to give you a hand.

Eileen

[Maz]

@deadmann wrote:

One question I do have is this: Since Dr. Brown treated some 10,000 people with this therapy are there results, statistics, and data that could be used to support the theory? It seems this is one of the largest (if perhaps informal) sources of data on the efficacy of the treatment that may exist.

Hi Deadmann,

As Eileen kindly mentioned, it’s just vacation time around here, so probably quiet. You’re free to ask whatever you like here (we may not always have answers or experience to share as we are just fellow patients) and to voice your opinions (bearing in mind that everything expressed on this forum is lay opinion as there are no medical doctors here to offer advice). The only rules are listed in the forum guidelines above…it’s a respectful forum, bearing in mind there are some very sick individuals who frequent here. So, moderators will not allow flaming or that sort of thing. Also, the forum is a courtesy service provided by the Road Back Foundation and run by unpaid volunteers, so as we go through periods where we are very light-handed, it may take a bit of patience for someone to get back to you. We do our best to make all rheumatic patients choosing AP feel welcome, though. Anyway, hope that helps to explain a bit.

We are currently in process of archiving all of Dr. Brown’s research which will appear in a year or so on a newly re-vamped website. This is RBF’s next big project and, if anyone is feeling generous and wants to support this effort, please feel free to let us know or to send your donation! Bearing in mind that much of Brown’s research is probably on microfishe and rotting in some cardboard box in a library in MD somewhere and very little of it is published e-format online, RBF is really excited that a good proportion of this research came into our hands and that we will be able to make it available to the public when it is all scanned and loaded onto a new website.

To my limited knowledge, Brown did not document in any formal study the 10000 or more patients he treated, but it sure would be great to see his case notes! One of the reasons he refused to conduct a double-blind, placebo-controlled, randomized trial was because he felt it was unethical to leave a cohort of the study untreated and suffering – described in the book. The MIRA trial did have a placebo group, but patients were also allowed to continue with their usual DMARDs, which probably skewed results out of favor for minocycline, but the long-range results were excellent, nevertheless…hence why minocycline is now an approved ACR DMARD for RA.

Road Back did run a Harris Poll of rheumatic patients using AP to gather subjective data on patient experience of the treatment that you can read here:

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/416.html

It’s not uncommon for Harris Polls to be run on various treatments to gauge patient experience – the Arthritis Foundation does these at intervals, too.

[A Friend]

@Maz wrote:

@deadmann wrote:

One question I do have is this: Since Dr. Brown treated some 10,000 people with this therapy are there results, statistics, and data that could be used to support the theory? It seems this is one of the largest (if perhaps informal) sources of data on the efficacy of the treatment that may exist.

Hi Deadmann,

As Eileen kindly mentioned, it’s just vacation time around here, so probably quiet. You’re free to ask whatever you like here (we may not always have answers or experience to share as we are just fellow patients) and to voice your opinions (bearing in mind that everything expressed on this forum is lay opinion as there are no medical doctors here to offer advice). The only rules are listed in the forum guidelines above…it’s a respectful forum, bearing in mind there are some very sick individuals who frequent here. So, moderators will not allow flaming or that sort of thing. Also, the forum is a courtesy service provided by the Road Back Foundation and run by unpaid volunteers, so as we go through periods where we are very light-handed, it may take a bit of patience for someone to get back to you. We do our best to make all rheumatic patients choosing AP feel welcome, though. Anyway, hope that helps to explain a bit. ……………
Road Back did run a Harris Poll of rheumatic patients using AP to gather subjective data on patient experience of the treatment that you can read here:

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/416.html

It’s not uncommon for Harris Polls to be run on various treatments to gauge patient experience – the Arthritis Foundation does these at intervals, too.

Greetings, Deadmann…
I’m proud of you… and know members of the Board here are, also. I’ve been involved with RBF BB quite a while as a patient before it went online. The first time I heard of Dr. Brown’s work and read the book published by him and Henry Scammell, I knew I’d found the “right” treatment for myself (I’d been reading and studying the old-fashioned way… one book at a time.)

If you have the time, you may want to watch/read about another travesty that has been taking place in our country (by a federal department) for a long time, as well as in my native state (by the medical board). I encourage any/all reading this to take the necessary time to watch or read — then you will probably be even more encouraged that this/these treatments work, but for obvious reasons are continuously being stiffled — and like Dr. B who has been curing young children of their malignant inoperable brain cancer for 16 or so years, is the best treatment!

http://articles.mercola.com/sites/articles/archive/2011/06/11/burzynski-the-movie.aspx#!
http://burzynskimovie.com/

Keep the faith,
AF

[Anonymous]

Between the board and MAZ, I have been discovering just exactly how much I don’t know about this stuff. It turns out my ignorance is epic. You have to understand that I am among those who have a hard time with unconventional treatments. To be quite honest, I have seen a lot of scams in my years and been caught by a couple myself. It appears that the misery involved with theses diseases creates an environment where desperation is foremost. At some point a person begins to feel the hopelessness and depression from the constant spiral downward and the failure of patches and masking meds. They grasp at straws. This makes them vulnerable to any kind of scam and patent medicine and dishonest treatment scheme that comes around. I know people who have a war chest of pills and herbs and devices and have an entourage of leeches constantly removing the contents of their bank accounts – and just seem to get more sickly and discouraged all the time. I am embarrassed to admit that had I not first seen the results before I knew of the treatment, I might never have gone on to investigate this treatment or come to believe that it is legitimate and helpful.

You see, I had given up. After years of fighting without any success, and time after time finding that the drugs being prescribed were worse than the disease, and not having any idea even what I was dealing with, I had got to the point where I was no longer able to eat solid food. Just water, broth, a limited amount of Gatorade, and some Ensure. After about 6 weeks of this, and several trips to the ER and hospital, specialists and GP, all I was told made no sense. I was told my lymph nodes were inflamed but that I had no infection. I was told my spine was inflamed and that it was arthritis and nothing could be done about it by the spine specialist. The neurosurgeon said much the same and told me to do PT. I worked like a madman at it but the PT made it MUCH worse and after a while I could not stand or sit for long. The GI people put me in hospital for endoscopy and colonoscopy and found I had a big duodenal ulcer and inflamed intestines. No reason or source, just that they were there. Of all the treatment, only the acid reducer stuff seems to have any success and the ulcer seems somewhat better. Seeing a GI specialist, he told me I have Crones and prescribed meds that have so many and so dangerous (even lethal) side affects that I decided I could not risk it. There had to be another way. Besides, the lymph nodes said infection and I have never heard of a person spontaneously getting Crones for the first time at age 62 (with NO indications or other GI problems in an entire lifetime).

So there I lay, 24 hours a day in a space of about 140 square feet, able to do almost nothing but watch TV and crawl to the john about every hour and back. I could not get sustenance, could not wash my clothes, could not go anywhere, and did it all while in pain and sick as a dog. People started calling me Job! Of course it could not stop with that. I was already doing what I could to prepare to die, assuming that at the rate I was failing I would not last long. I was saying goodbye to people. And I got a sinus infection. Insult to manifold injury, right? I had a bottle of doxycycline that a doctor had given me a year back after a surgery – just in case. I checked to see if this was acceptable for the sinus infection and since it had been kept in a refer for that time I was told to use it.

What I did not know was that it would not only deal with the sinus infection, but a lot more. My gut, genital, urinary, and back pain is down to nothing. My nausea is gone. My GI tract is again functioning. I have slowly reintroduced solid food and am handling it well. When my GP heard about this, he remembered Dr. Brown from reading 30 years ago and prescribed more doxy. He said it was obvious I had an infection and that needed to be the principle direction of treatment as long as I could tolerate it. I no longer have to take my allergy meds. I do not take anything for the Crones (that I do not believe ever existed). I take 100 mg of Doxy a day, some omeprazole for the ulcer, a vitamin pill and C and E, and a probiotic to counter the sterile gut concern. I am among quite a number of people who are stunned but apparently pleased to see that rather than a funeral they have me back among the living. (No accounting for bad taste!)

I have had some swings. I am told this is normal. At first I would feel better than feel bad. The nausea was harsh at times and gone the next. I’d get really tired and then loaded with energy. I’d get gut pain and then the next day it would be gone. My legs and back would be fine, then hurt like hell, and then be fine again. Some mood swings. Herxing? But over all I am much better and working hard to rebuild the wreckage, doing as much as I can tolerate to rebuild all the atrophied muscle.

The point, I guess is that I did not come to the treatment on purpose, but as the result of a happy accident. I may never have known a thing about the ABX treatment or Dr. Brown et al, even after all these years of too many doctors to count, failed treatments one after another, and either no diagnosis or wrong ones. I know I would never have searched this out because I have seen too many scams and fake medical claims for all kinds of unconventional products and book sales and the like to have had an open mind about it. After this treatment showed success, I tried contacting former docs including the GI specialist and others, looking for an explanation. I got dire warnings or was told I should consider taking my medical needs elsewhere, but not a single explanation for what has happened. That too would discourage many of us from trying this treatment – knowing that we’d be treated like a turd in the punchbowl for even mentioning an alternative. These days with Obamacare and the cuts in Medicare, getting ANYONE to help is getting very hard and very tricky. I have not only been victim of this myself but seen others die for lack of treatment – not that there was none but that Medicare would not pay for it. But anyone who has seen the changes in the medical system in the last years has had enough of that conversation.

I am learning. I have tried to read everything I could and although there is much to know I will keep after it. My concerns consist of trying to make sure that the treatment is right and I am doing the best thing. I could be taking the wrong stuff or the wrong way and not know. Information is short and I am fumbling in the dark – despite a GP who is at least cooperative. I fear that this is a false honeymoon – and that the profound relief I have at this point and the hope of regaining a life is fleeting. The boogeyman is under the bed! For now all I can do is keep trying, keep asking questions, and thank those who have contributed to the solution to my puzzle (MAZ- pay attention, that was a big complement!) for their help and time.

[enzed]

Hi Deadmann,

I can relate to your experience of having my bank account cleaned out while searching for treatment. Over 30 years since becoming ill and without being able to get a medical diagnosis I tried out many different diets and supplements while consulting a range of alternative health providers whose bank accounts grew while mine emptied. So I hear you! And of course none of it worked because what I needed all that time, was antibiotics. 🙄

I have hung in with AP for 7 months now and made progress. I began on Minocycline but recently changed to Doxycycline because the die off from Mino was too toxic for my body to tolerate, even though I made progress while on Mino. I can see how an extreme bacterial die off reaction could be mistaken for an allergy to the antibiotic itself. Because of the excellent information on this forum I did not get them confused. I am doing very well on Doxy and continue to improve.

Best of luck to you in your journey back to health.

[Anonymous]

I have been communicating all the info I can find to my daughter. She’s definitely thinking on it, but seems reticent. I think the problem is that she sees a bad situation that is under marginal control after a lot of suffering and is frightened to make changes. She is getting the typical immune suppressing drugs and says she is ‘controlled’ but it seems like she has lots of flares – especially when stressed at all. I also suspect that rheumatologists tend to be good at keeping the fear and their control over their patients. How else could you give someone treatment that they know will fail and that continues to both allow more damage and not treat the disease and still keep patients and make money at it? You have to be quite the con artist in my opinion!

I will continue to try to offer her information and arguments that I hope will convince her to give the AB therapy a shot. It also occurs to me that if I could provide additional anecdotes from people who have tried this therapy, it might help. I will assume (from what I know and the information I’ve seen so far) that there are quite a number of people who might have something to say about this to help in my campaign. (I also want to know the negatives as being uninformed and unprepared is foolish!) So I invite any and all to contribute their stories if you are willing. My goal is to help lift this burden and restore a good life to her, so if nothing else my intentions are good. Any help would be appreciated!

[JohnnyMax]

DM,

All she has to do is look at you and see the changes since starting antibiotics. This site is so full of people experiences that she could never find the time to read it all. Have her check out the sections “Personal History and Progress Threads” and also the section ” Testimonials” There are the clinical trials also in PubMed. After all this if she still does not feel compelled to use it, that is up to her. Guess the old saying “You can lead a horse to water but can’t make it drink” may come into play here. Good luck!

John

BTW… you should consider changing your screen name from DeadMan (too morbid) to AliveAgain to reflect your future outlook since starting AP.

[Author]

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