RA and minocycline

[marinastarbucks]

Hi All,
I am new to this discussion board. Long story short I was diagnosed with RA in 2007 although I am seronegative and have normal sed rates. After arguing with my doctor after a year I caved and started taking enbrel and mtx. It helped. My mom is into natural health and urged me to see a doctor in Boston who prescribes antibiotic therapy. I just started taking minocycline and am pretty serious about getting off the enbrel as I am more than scared to death about the side effects. Something happened to me where I just woke up and I don’t want to take the immuno-suppresant drugs. It just seems logical that they will make things worse eventually. So first of all, I am really scared. Second, has anyone who has RA had good luck with minocycline? I am at the point where I am ready to maybe go gluten free or do anything. I just want to be healthy. MSR

[Maz]

@marinastarbucks wrote:

Hi All,
So first of all, I am really scared. Second, has anyone who has RA had good luck with minocycline? I am at the point where I am ready to maybe go gluten free or do anything. I just want to be healthy.

Hi MSR and a warm welcome!

You’re just up the I95 from me a ways…we’re on our way up to Dartmouth tonight for a college swim meet for my daughter. 😀

I had an amazing response to minocycline in combination with azithromycin. My dose at that time was 100mg twice a day on Mon, Wed and Fri and one tab 250mg azithromycin once a week. I got to remission of all my clinical symptoms and signs after 10 months of use from very severe RA (I had already done a year of heavy Lyme protocols). I was one of the unlucky schmucks who wound up having to switch out to doxycycline, which didn’t work as well for me, but it was just the way my body was metabolizing the mino….very rare…but, yes, minocycline worked like a dream for my RA and has for many others here who should chime in for you.

It’s a slow protocol and takes time to kick in…there’s much info on the main site you can plow through under the education tab (see Current and Historical Protocols in the Physician Packets – https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html), as well as the Henry Scammell book, The New Arthritis Breakthrough, which should answer most questions about the therapy. I must have read the book 4 or 5 times in my first year and it really kept me going. There is also the Dr. Brown video documentary you can watch at the top of this forum, if you have an hour to spare with your feet up! 🙂

Lovely to meet you and look forward to hearing of your progress on AP!

[Kim]

Hi MSR,

I want to add my welcome to the Roadback forum too.

Does AP work? Read as much as you can on the protocol, post questions, read the testimonials in the Home section, read The New Arthritis Breakthrough by Henry Scammell, and then see if you think it makes sense to you. Swimming upstream is exhausting, going head-to-head with your doctors defending your choice of treatment is exhausting, not seeing quick results is exhausting……………..but, if you can come out healthy and get your life back???

Let us know what we can do to help you sort through the maze.

Take care…..kim

[lynnie_sydney]

@marinastarbucks wrote:

Hi All,
I am new to this discussion board. Long story short I was diagnosed with RA in 2007 although I am seronegative and have normal sed rates. After arguing with my doctor after a year I caved and started taking enbrel and mtx. It helped. My mom is into natural health and urged me to see a doctor in Boston who prescribes antibiotic therapy. I just started taking minocycline and am pretty serious about getting off the enbrel as I am more than scared to death about the side effects. Something happened to me where I just woke up and I don’t want to take the immuno-suppresant drugs. It just seems logical that they will make things worse eventually. So first of all, I am really scared. Second, has anyone who has RA had good luck with minocycline? I am at the point where I am ready to maybe go gluten free or do anything. I just want to be healthy. MSR

Hi msb and welcome from me too. My story is one of the testimonials on the main site. https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html Reading them and the Henry Scammell book The New Arthritis Breakthrough may help make you a little less scared – which is perfectly normal by the way. Only you can choose the right road for you – but researching and hearing about others on AP is a great way to start. You’ll need to be sure that this is the way you want to proceed for all the excellent reasons Kim has given you. The book switched a light on for me way back in 2001 – and it’s never gone out.

By the way, dietary changes often help. You might want to take a look at this on Leaky Gut. Lynnie
http://www.mdheal.org/leakygut.htm

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)

[BeatingRA]

@marinastarbucks wrote:

has anyone who has RA had good luck with minocycline?

Hi MSR,

Yes! I have RA. I have been going to Dr T in Boston for 5 years. I’m only taking Minocin and have been in remission for about 2.5 to 3 years. I understand the scared feeling but want to assure you that you are on the right track. If it’s Dr T that your mother wants you to see in Boston you will be in good hands. He prescribed minocin for me at my second visit and worked with me to get off prednisone.

Best of luck to you.
Theresa

[marinastarbucks]

Wow! Thanks Everyone for the wonderful encouragement. I really needed it today as I had a personal breakthrough/lightbulb come on yesterday and this is all very overwhelming. Your encouragement is a real blessing to me. Thanks so much. I will read all the links, info you suggested. I have the book on the shelf so I will get to reading it. I resonate with the exhausting bit. Its a good point though that the exhaustion will be worth it if it leads to better health. Amen. Thanks so much.
–Marina

[judy cash]

Marina,
Just wnated to join everyone else, and welcome you to this wonderful forum…Everyone here are like family. We give each other strength and support.

I have RA and minocycline has helped me greatly. I was diag. April 09, started AP in June 09, and I have never regreted if for one minute. I was getting really bad very fast. After I started AP, It took about 6 weeks of some really bad days, then I began to feel better and better, and now 1 year and 5 months later, I am doing really well. I consider myself lucky, because not everyone sees results this fast, But I am GRATEFUL …..

I hope you will read the book, I think it will help with your decision. Take care.

Judy

[marinastarbucks]

Hi All,
I am only on day 3 of taking minocycline (am trying again with it after not sticking very long when I wasn’t so motivated). Does it make other people nauseaus? Does this get better after your body gets used to it?

[marinastarbucks]

Maz wrote:

I had an amazing response to minocycline in combination with azithromycin.

Hi Maz- just curious what does the azithromycin do differently than the minocycline? Thanks.
— Marina

[Maz]

@marinastarbucks wrote:

@Maz wrote:

I had an amazing response to minocycline in combination with azithromycin.

Hi Maz- just curious what does the azithromycin do differently than the minocycline? Thanks.
— Marina

Hi Marina,

Yes, the nausea should improve with time, but folk here often find it is helped by having a little something to eat with the dose that doesn’t contain minerals (e.g. no dairy or anything high in minerals, like spinach, which bind to tetas in the gut and render the abx useless), like a pot of apple sauce or gluten-free bread or something along those lines.

Azithromycin (zith, for short) is a broad spectrum antibiotic in the macrolide class. It has a similar action to the tetracyclines in that it is bacteriostatic (enters cell walls to disable pathogens by interfering with their enzymatic processes), but it also has some bacteriocidal properties (kills pathogens outright by compromising bacterial cell walls), which is why it’s often prescribed for strep, which is a cell-walled organism. It makes a nice complement to minocycline and can be taken together with it or in alternate day pulsed fashion, as the two work synergistically. Brown believed that elevated strep titers could interfere with a patient’s progress (we now know that pathogens live in bio-films and confer protection upon one another in these slimey matrixes…one way that bacterial resistance is formed) and so the more experienced AP docs and Lyme docs will often use two or three antibiotics at once to get as much of a broad spectrum capability all at once, while also helping to prevent resistance. In Brown’s day, he often pulsed in amoxicillin or ampicillin, but some patients are allergic to penicillins and also some efficacy is lost as the two antibiotics are not as compatible as the mino/zith combo. Patients who can’t take tetracyclines, due to allergy, also can use azithromycin as a nice substitute.

You can read a little about “zith” here on wikipedia and the broad spectrum coverage it affords:

http://en.wikipedia.org/wiki/Azithromycin

[marinastarbucks]

Hi All,

A lot is swirling around in my mind. I have been on mino for a week now and a gluten free diet also for a week. to recap, I was diagnosed with seronegative RA in 07. However, all my blood tests have always been normal in just about all the key indicators– very low sed rate, negative on RF factor, etc., etc, however my wbc and rbc and vitamin D is always low or on the low end. I got on enbrel and mtx about 2 years ago but I decided to stop for a while to try the mino treatment becuase I am sick of treating the symptoms instead of knowing what is the cause. When i was first diagnosed I argued with every doctor saying, how could i have RA if my blood tests are all essentially normal. Could i be allergic to gluten, etc etc etc?? Then I was of course negative on the gluten test.

However, after a week not eating gluten and being on the mino, I am wondering if maybe my problem is truly one of absorption? Maybe I have some weird food allergy that is giving me a reactive arthritis or maybe because of something like not being able to process gluten the effects of that on my digestive system has caused me to not be able to absorb things and then it led to reactive arthritis when i was so deficient on stuff.

After a week of mino, my hands and wrists are getting a bit stiffer and feel puffy but it feels different than before. Hard to describe. I hope this is the herxing? I still have good/decent energy levels which I am really happy about. I am also doing the budwig protocol every day and taking 2 TBspns of pure cherry juice concentrate.

I am getting married soon and I don’t want to be feeling bad when I am married. I want to be healed. Sigh.

Marina

[lynnie_sydney]

@marinastarbucks wrote:

After a week of mino, my hands and wrists are getting a bit stiffer and feel puffy but it feels different than before. Hard to describe. I hope this is the herxing? I still have good/decent energy levels which I am really happy about. I am also doing the budwig protocol every day and taking 2 TBspns of pure cherry juice concentrate.

I am getting married soon and I don’t want to be feeling bad when I am married. I want to be healed. Sigh.

Marina

Marina – it is almost certainly herxing after a week. I can remember it feeling just slightly different for me, but hard to exactly describe – apart from the pain migrating around my body. This is not a quick fix treatment, rather a slow road to wellness. So, terms of you getting married soon – guess that depends on how soon. If it is imminent there are things you could consider to ‘tide you over’. Lynnie

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)

[marinastarbucks]

thanks lynnie for the reminder that it is a slow road to wellness. that is a good point to remember. I guess Rome wasn’t built in a day 😀 😀

I am getting married this summer.

Thanks
Marina

[Maz]

@marinastarbucks wrote:

However, all my blood tests have always been normal in just about all the key indicators– very low sed rate, negative on RF factor, etc., etc, however my wbc and rbc and vitamin D is always low or on the low end.

Marina,

Have you ever been given an explanation for the low WBC count?

Some of the conventional RA drugs can cause myelo-suppression that can result in this. But just thought to mention that occasionally this comes up amongst Lyme patients and the coinfection erhlichiosis or HGA (human granulocytic anaplasmosis) can sometimes be the culprit.

These are intracellular bacteria that infect the white blood cells….leukopenia (low WBC) can sometimes occur with this infection, as well as a myriad of other symptoms, like fever, headache, chills, muscle aches that are very flu-like. You can read a bit more about it here:

http://extension.entm.purdue.edu/publichealth/diseases/tick/anaplasmosis.html
http://en.wikipedia.org/wiki/Ehrlichiosis

Lymeinfo.net also has loads of info and links on Lyme and coinfections you can browse here:

http://www.lymeinfo.net/coinfections.html

And Wiki:

http://en.wikipedia.org/wiki/Human_granulocytic_anaplasmosis

[keith_nufc1]

Hi Maz (or anybody else who can answer this question).

I have only posted a couple of times but I read the posts daily.

I have ankylosing spondilitis and I take 100mg of doxy twice per day. I have no herx and I have been doing this for about 7/8 weeks. I am doing much better.

I was surprised to see that tetracyclines shouldn’t be taken with mineral dense foods. I have 200g of spinach and 100g of sardines every morning about 20 minutes after my doxy! Could they have been effecting my progress?

I eat a no starch, no dairy and no sugar diet. Would avocado, flaxmeal , eggs and butter be a good alternative?

Sorry to hijack someone’s post.

Thanks

Keith

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