Doxycycline

[eann]

Hi. I am new to this site. I have been diagnosed with RA for 3 years. I was diagnosed with fibromyalgia for 15 years before that. I believe it was always just RA.

I am sero-negative, but an MRI has shown inflammatory damage to my hands and the rheumy told me that is definite proof for the RA. I also have a positive ANA, which is indicative of more severe disease-RA.

I started on Oracea, a type of doxycycline for a skin condition. After a couple of months, I felt it was helping my RA. Later, I changed to minocycline and it killed my GI system even with probiotics.

My question is, has anyone used just doxycycline and had good results?

[Maz]

[user=1962]eann[/user] wrote:

My question is, has anyone used just doxycycline and had good results?

Hi Eann,

Welcome to the RBF forum, though sorry you had to seek us out. Lots of folks discover AP just as you did, after they find that taking antibiotics actually helps their rheumatic disease!

I had to switch from brand name Minocin to Doxycycline recently and, although it hasn't been as effective for my RA (minocycline seems to have better tissue penetration), it has begun to work better since adding a different class of antibiotic. Some folk find they need to take combinations of antibiotics and this has been the case for me as I have chronic Lyme disease, which triggered my RA.

When you took your minocycline, did you find that eating a little something with the dose helped or were you taking it on on a completely empty stomach? Were you managing to keep your probiotics spaced well apart from your mino by at least a couple hours?

When you say, “minocycline killed your GI system,” what exactly do you mean? It's very odd why some folk find it easier to tolerate doxy whereas others find mino harder on their gut. If it's just nausea that is the problem, usually it works its way out after the body adjusts and just one of those early symptoms. I'm not a big fan of proton-pump inhibitors, but I understand that for some folk it is a necessity. Another consideration is being sure to take the mino or doxy well away from bed-time and to refrain from lying down for a good hour or so after the dose, as reflux or a stuck cap can cause esophageal burning. Did you mean anything like this by any chance or more of a candida issue?

Also, what dose were you taking, if it's okay to ask?

Again, welcome!

Peace, Maz

[eann]

Hi Maz, and thanks for the info. I was taking 100 mg. of minocycline twice daily on an empty stomach. My rheumy was kind enough to prescribe it for me.

I took my probiotics at least 2 hours later. Still, it totally shut down my bowels and caused severe cramping. No nausea, and no reflux.

I was on doxycycline 50 mg. daily for 4 months and after the 3rd month, I started to notice it was helping the arthritis. I was prescribed it for a skin condition and when it went away, the dermatologist stopped it. So, I asked the rheumy for the mino after reading The Arthritis Breakthrough.

I called my rheumy and she agreed to prescribe the doxy for me, same thing I was on. I will see what happens staying on this one.

I am still curious if doxy can be as effective as mino for some people? I see you say mino is better at penetrating the tissue.

Thanks again, Ann

[Maz]

[user=1962]eann[/user] wrote:

I was taking 100 mg. of minocycline twice daily on an empty stomach. My rheumy was kind enough to prescribe it for me.

I took my probiotics at least 2 hours later. Still, it totally shut down my bowels and caused severe cramping. No nausea, and no reflux.

I was on doxycycline 50 mg. daily for 4 months and after the 3rd month, I started to notice it was helping the arthritis. I was prescribed it for a skin condition and when it went away, the dermatologist stopped it. So, I asked the rheumy for the mino after reading The Arthritis Breakthrough.

 

Hi Ann,

The Harvard Protocol or 100mg mino twice a day protocol is often way too much for the hypersensitive RAer. Dr Brown would use a low dose of either doxy or mino at 100mg (once or twice a day) on a Mon, Wed or Fri and sometimes even lower (50mg) in very hypersensitive cases. My guess about what was occuring for you on the mino is that you were on too high a dose. With AP, it works a bit counter-intuitively from the way the tetracyclines are normally prescribed for an acute infection with daily dosing. Rather, low dose, intermittant pulsing is usually more effective. There is info on this on the main website under the Education tab, but if you haven't yet had a chance to read The New Arthritis Breakthrough, by Henry Scammell, then I'd highly recommend it to understand this rationale for low dose pulsing better:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-14210

So it sounds more like you had a constipation issue while on the Harvard Protocol with mino? The only thing that comes to mind with this is that it's possible that you had/have a bit of a yeast overgrowth issue going on. Many with chronic diseases have a pre-existing imbalance of gut microbiota and flora/fauna balance. This has been posed in studies as a prime cause of rheumatic disease, but the conventional medications that many take can worsen this underlying problem.

Please know I am just a fellow patient, but the signs of candida overgrowth in the gut and irritable bowel can be either constipation or diarrhea. As you probably figured out already, keeping the gut moving and the bowel evacuating in a healthy way while on AP is of prime import. The alimentary canal is one of the major ways the body expels toxins and, when it's blocked up, these toxins just recirculate in the body and cause all kinds of symptoms like bloating, gas, abdominal pain and discomfort, fatigue and general malaise. It might even be that you did better on doxy, because the dose was lower (1/4 of the dose of mino you were taking). At the same low dose, the mino may have worked just as effectively, if not better. Also, some studies have actually shown minocycline to have some anti-candida activity.

All this said, some folk do much better on doxy than on mino. You may well be one of these folk depending on your pathogen mix. So, if you're comfortable on doxy and it's working for you, then this may be the way to go for you. Would definitely recommend reading up on intermittant pulsing, as this may also help you to decide on the most effective dose for you.

Hope this may help in some way. Another poster, A Friend, has posted much on leaky gut, candida overgrowth, etc on the forum in the past. You can find many of her past posts by clicking on her user name in the Member list and then hitting the “Posts” tab.

Peace, Maz

 

[Merla]

[user=1962]eann[/user] wrote:

My question is, has anyone used just doxycycline and had good results?

Hello eann,

I have used doxy almost exclusively and it has been extremely successful for me. I tried mino for a couple of months and it actually gave me a very itchy allergic rash – but that all cleared up when I switched back to doxy. I've done very well on doxy … 99% better! (still very chemically sensitive though).

Merla

[eann]

Maz, thanks for the information. I have read The New Arthritis Breakthrough and it made a lot of sense to me. In the beginning, I had a period of 6 months where I ran a low-grade fever and felt like I was coming down with the flu every afternoon. I would become exhausted and lie down for a nap and then feel better, get up and be able to function. The doctors had no idea why, every test came back negative.

Then, I fell off the cliff and have been in severe chronic pain and fatigue. I was diagnosed with fibromyalgia/chronic fatigue syndrome and the doctors quit trying to find out the real cause of my illness. 3 years ago, they added the dx of RA.

Because I had an obvious infection in the beginning of all of this, I was excited when I read of AP, thinking that this might really help. I guess for now I will stay on the 50 mg. of doxy and see how things go.

I have another question about strep. titre. I have a history of frequent strep infections while growing up, often severe. Would it best to get it checked? I haven't had a strep infection for many years though.

Can a person find their way through this treatment without an AP literate doctor? My rheumy is cooperative so far, but she is just doing what I ask her to do. I haven't even mentioned the book or AP. Minocycline is actually on the list of meds. at the College of Rheumatology website and I showed her that.

Thanks again and I hope you are feeling well. Ann

[eann]

Hi Meria. Glad to hear doxycycline worked for you. It is great that you caught this early and have improved 99%.

Could I ask you what dosage you are on? I am on something called Oracea which is 40 mg. of immediate release doxycycline and 10 mg. of delayed release. I take one daily.

Have you been to an AP doctor or done this on your own? I would have to travel and don't know if the insurance would pay very much out of network, but I really want to get better.

Thanks for replying, Ann

[Maz]

[user=1962]eann[/user] wrote:

In the beginning, I had a period of 6 months where I ran a low-grade fever and felt like I was coming down with the flu every afternoon. I would become exhausted and lie down for a nap and then feel better, get up and be able to function. The doctors had no idea why, every test came back negative.

Then, I fell off the cliff and have been in severe chronic pain and fatigue. I was diagnosed with fibromyalgia/chronic fatigue syndrome and the doctors quit trying to find out the real cause of my illness. 3 years ago, they added the dx of RA.

I have another question about strep. titre. I have a history of frequent strep infections while growing up, often severe. Would it best to get it checked? I haven't had a strep infection for many years though.

Can a person find their way through this treatment without an AP literate doctor? My rheumy is cooperative so far, but she is just doing what I ask her to do. I haven't even mentioned the book or AP. Minocycline is actually on the list of meds. at the College of Rheumatology website and I showed her that.

Thanks again and i hope you are feeling well. Ann

Ean, just a thought, but was Lyme disease ever a consideration in your work-up, even if the standard tests for it originally returned negative? Flu-like symptoms and general malaise are pretty typical early symptoms of Lyme. If you think this may be a possiblity, then IGeneX testing for Lyme may not be a bad idea.

It's great you have a rheumy who is so open to helping you. Yes, wouldn't be a bad idea also getting tested for strep. Brown found that patients with a history of strep often needed to be treated with a penicillin or progress would be impeded on AP. He also believed that the patients who were most likely to develop nodules also had strep in their mix and that it was the body trying to form a protective skein around the infection to encapsulate it.

Some people can and do find their way to wellness with just an open physician willing to help them navigate AP. Kim, our other volunteer here, started out with her GP helping her. She later took a trip to Iowa to see Dr S, a very experienced AP doctor when she reached a plateau in progress to have IV therapy…and later still discovered she had Lyme disease all along, which led her to see a Lyme Literate physician….but, yes, it's possible to do well on AP with just an open doc. However, if you find you hit any hurdles along the way and need the assistance of a more experienced doc, you could then contemplate doing that just as Kim did.

Night from CT!

Peace, Maz

[Merla]

[user=1962]eann[/user] wrote:

Hi Meria. Glad to hear doxycycline worked for you. It is great that you caught this early and have improved 99%.

Could I ask you what dosage you are on? I am on something called Oracea which is 40 mg. of immediate release doxycycline and 10 mg. of delayed release. I take one daily.

Have you been to an AP doctor or done this on your own? I would have to travel and don't know if the insurance would pay very much out of network, but I really want to get better.

Thanks for replying, Ann

Hi Ann,
I am taking 100 mg of doxycycline (generic) twice a day and 200 mg of fluconazole once a day and 0.75 mg of prednisone and weaning off of the prednisone. I do take my medications with food or I get really nauseated. Also, I take probiotics every day or I get in trouble. I also avoid sugar.

I am seeing a very good AP doctor. His office is an hour away. Sometimes we just do phone consultations. The phone consultations cost a little more, but it saves me the drive. I've read that Dr S in Iowa will do consultations with doctors elsewhere who are willing to do AP with their patients. There may be other experienced AP doctors also willing to help out doctors learning AP. Just don't give up 🙂

Merla

[lynnie_sydney]

Ann – I too was on an AP protocol, with my GP prescribing mino (Aussie version) for 5 years. I case managed myself during this time and used this board and rheumatic.org to gain wisdom from the people that had been down this road before me. I had great success symptom wise. It was because I had plateaud RF wise (couldnt get it to move down any further than mid 300's) that I eventually decided to travel intersate to consult with a physician very experienced in AP to see what more was possible on this journey. 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)

[m.]

Yes, I've only used Doxy. It's been about a year and a half now. I'm doing great.

[eann]

Just wanted to thank everyone for their help. I appreciate it very much.

@ Lynne, I will look up your experience. I don't know what that type of RA means.

I find it hard to let myself think I will really get better. I have been so sick for so long. Even a few years of good health would mean so much to me.

Best wishes to all. Ann

[lynnie_sydney]

Eann – palindromic means it comes and goes. Often Lyme mainfestations are palindromic. Here is a link to my testimonial – which covers all the years before I found AP and the first 4 years on it. Lynnie

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html

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)

[Merla]

Wow. Lynn, thanks for posting the link to your story, it is very inspiring. You are amazing!

[Author]

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