dosing

[Ellen RA-AP]

Does anyone out there take both 100mg doses together?  I have been having huge yeast issues, which on occasion force me to back off my minocycline, but I got to thinkng that maybe taking them together will strip my digestive tract only once instead of twice.  😯  Ok, these faces are just too much fun….

Ellen

[stillthe1]

Ellen, are you taking a probiotic? I take PB8 2 or 3 times daily every single day. It's shelf stable (requires no refrig).  That seems to keep my good “bugs” thriving so yeast doesn't win! So no, I don't take both 100mg capsules at once, rather space them about 10-11 hours apart MWF.

[Jennhere]

Do you have to take 200 everyday?  I tried it twice.  No better for it.  Just yeastie!  When I do 100mwf, I'm yeast free and I've gotten so much better… almost like the word “cured”… then a pain crops up and reminds me the disease is kind of like a zombie and never really dies…..;)

Other than that, no sugar, less starches and lots of probiotics should help.  I think that's the best advice.

Jenn

[stwig]

Hello All,
I am new to this board, as I just found it yesterday. I'm sure that my story is much like many of yours. I started having stiffness in my hands last August, and by October it was confirmed as RA. I felt like I had suddenly been hit by a train. The first thing my dr wanted to put me on was prednisone and mtx. I had to use the prednisone for a few weeks to get the swelling under control, but I refused the mtx, as I know how toxic it is. I have been treating myself with diet changes (no gluten or lectins) and a vitamin supplement with natural anti-inflammitory ingredients. I believe that these things are helping, but I can tell that I am starting to lose the battle, as my hands, feet and neck get a little stiffer each week. I have been searching for alternative treatments, and a cause of RA. I don't just want to treat the symptoms with chemicals.

I have asked my rheumatologist about minocycline treatment to no avail, so I am looking for a dr with experience in this treatment in the San Diego area.

It looks like a lot of people have had success with the antibiotic treatment, so I want to try it as soon as possible.

[Jennhere]

[user=75]stwig[/user] wrote:

Hello All,
I am new to this board, as I just found it yesterday. I'm sure that my story is much like many of yours. I started having stiffness in my hands last August, and by October it was confirmed as RA. I felt like I had suddenly been hit by a train. The first thing my dr wanted to put me on was prednisone and mtx. I had to use the prednisone for a few weeks to get the swelling under control, but I refused the mtx, as I know how toxic it is. I have been treating myself with diet changes (no gluten or lectins) and a vitamin supplement with natural anti-inflammitory ingredients. I believe that these things are helping, but I can tell that I am starting to lose the battle, as my hands, feet and neck get a little stiffer each week. I have been searching for alternative treatments, and a cause of RA. I don't just want to treat the symptoms with chemicals.

I have asked my rheumatologist about minocycline treatment to no avail, so I am looking for a dr with experience in this treatment in the San Diego area.

It looks like a lot of people have had success with the antibiotic treatment, so I want to try it as soon as possible.

The Dr. can't refuse your request for mino. It's approved for the treatment of RA.  They can scoff at you, but outright refusal is not an option.  I get the prescription from a PC and use a Canadian pharmacy to fill my prescript.  BTW, mino is great!

[Maz]

Hi Stwig,

Jenn is right – minocycline is approved by the American College of Rheumatology (ACR) for “off-label” use as a DMARD for RA. Off label just means that it is being used (at the discretion of a physician) for uses other than that which a drug was originally designed. Methotrexate is also used “off-label” for RA, because it was originally developed as a cancer drug. Your doctor's reaction, therefore, is just his/her personal opinion. Many docs don't understand AP therapy is a longterm treatment and recovery starts slow, often with steps backward and initial worsening.  This is often taken as being a sign that the treatment isn't working.

If you go to the articles pages on the RBF website, you'll find a number studies, included the MIRA trials. Print these off to show your rheumy, if he/she is still resistant. As Jenn says, they can't really refuse on grounds that it hasn't been studied as being beneficial for RA – it has! 

Where the lines blurs between regular rheumies and AP (antibiotic protocol) doctors is that AP docs treat with infectious causes in mind, whereas your average rheumy only prescribes mino for its proven anti-inflammatory effects. If it doesn't bother you what your rheumy thinks about this and you just want to get an rx for mino, then it shouldn't be a problem, but you'll be on your own as far as dosage adjustments.

As you're just starting out, you may feel more comfortable finding an AP doc to guide you. If you post an AP doc request here on the board, with your state/city/region and how far you're willing to travel, Richie or another volunteer should get back to you with a list of docs.

Well done finding this site and being your own health advocate in this – it will serve you well on the road to wellness.  Oh…one last thought…don't forget to pick up and read (several times if you can!) Doc Brown's book, written by medical writer, Henry Scammel, called, “The New Arthritis Breakthrough”. It will be a treasured handbook as you navigate your Road Back and all your questions will be answered there as well as support found here on the BB.

Peace, Maz

 

 

 

[Ellen RA-AP]

Hi Maz,

I just saw that you are from CT and I grew up in CT myself!  I have an exboyfriend in Southport who was diagnosed with psoriatic arthritis and I would love to share your doctors name with him if you don't mind emailing me at ellenhildy@comcast.net?

Thanks!Ellen

[Maz]

Hi Ellen,

Does your ex boyfriend have a history of Lyme Disease? You see, I actually go to a Lyme Literate Physician in Wilton, CT, and it is he who treats me with antibiotic therapy. I've asked my doc if he would be willing to list himself as an AP doc for RBF, because he has such extensive knowledge of the connection of the so-called “autoimmune” diseases (RA, Lupus, Fm, CFS, MS, etc) with Lyme – his area of expertise – and treats long term with antibiotics…he's also open to trying various protocols…but, he said he's reluctant to list himself anywhere, because he's inundated already with Lyme patients. During the more Lyme endemic seasons, he's got waiting lists for months. Last year, I just happened to be very fortunate and managed to get in to see him within a week, as he had a cancelation.

However, having said that….and I don't want to put your friend off trying…if he thinks he may have had tick exposures in the past (quite likely in CT), he may stand a good chance of getting in to see him. In a recent talk my doc gave at New Haven Uni, he did list studies that linked psoriatic arthritis to Lyme. I noted this, because my mother-in-law also has PsA.

Let me know what he thinks and, if he still wants the contact info, I will pass it along with pleasure.

Btw…where are you now, Ellen? I'd surely like to meet more people who may live in Fairfield or New Haven areas of CT and maybe one day start up AP support group meetings. So far, though, I haven't come across anyone in CT who stays on the board for long.

Oh….also, as per your original question about taking both 100mg doses together in one go…I can see your rationale for this, but I think I'd personally be a bit concerned about increasing serum levels that much in one go. Not only would chances of a mega herx be doubled, but the possible side-effects of vertigo, nausea, etc., could well be doubled. Are you currently on daily dosing at 100mg bid? If so, have you thought about pulsed dosing as an alterative to ask your doc about?

Peace, Maz

[Ellen RA-AP]

Thanks for your reply!  I grew up in Cheshire, but now we live in Franklin MA and I see Dr. T.  I guess I think it is suspicious that my friend and I both have similar diseases because I believe that my very first symptoms occured when he and I were a couple.  I had a very strange virus, high fever and rash, and then an allergic reaction to Bactrim.  I was tested for everything including Lyme and the doctor concluded that I have an overactive immune system.  After that I developed a nodule on my right wrist and went nearly illness free for several years until the onset of my RA.  He is currently taking Humira or Enbrel and mtx, but I am not sure if he has been tested for Lymes.  I will ask.

 

Dr T is pretty insistent on the 100 mg twice a day, but I do have a friend who is only taking 100mg once a day for her Lupus due to heart concerns.  I haven't had increased nausea or dizziness since increasing my dose, but previous to taking them together I did pulse my dose.  No matter what I do, I am all about yeast!  I am feeling pretty good right now, I think I can tell a herx from a flare based on a strange sensation in my mouth and emotional swings that feel more like a herx.  When I herx I feel like I am coming off novicane in my mouth, and I get super sensitive to those around me vs a flare up where my joints are my main concern.  How would you know a serum increase?

 

Also, here is another question.  On the 25th I have to see my PCP who treats my yeast.  I was thinking that at this visit I might ask her to run some bloodwork for anything unusual that I hear discussed on this board, like babesia, etc.  What would you advise?  Do you think testing for celiac is a good idea?

Thanks so much for your advice!!!

Ellen

[John McDonald]

I took 200mg of Minocycline all in one go on alternate mornings for a number of months after achieving some measure of remission and before changing to the MP protocol. At that time I was not herxing any more so I didn't notice any kind of change, but it didn't hurt me.

 

[stwig]

Hi Jenn and Maz,
Thanks for your replies. I have called my rheumatologist and left messages yesterday and again this morning. So far all I have gotten is a call back from her physician assistant stating that she does not prescribe minocycline. She said that if I am starting to have more symptoms that I need to start taking the mtx.

I told her to let the dr know that if her answer is no, then I will seek another doctor who will prescribe it, because I am unwilling to take the toxic swill methotrexate.

So even though they are not supposed to be able to refuse my request, it appears that is what I am up against. Time to find someone who will help me.

Thanks for your support.

[Jennhere]

[user=75]stwig[/user] wrote:

Hi Jenn and Maz,
Thanks for your replies. I have called my rheumatologist and left messages yesterday and again this morning. So far all I have gotten is a call back from her physician assistant stating that she does not prescribe minocycline. She said that if I am starting to have more symptoms that I need to start taking the mtx.

I told her to let the dr know that if her answer is no, then I will seek another doctor who will prescribe it, because I am unwilling to take the toxic swill methotrexate.

So even though they are not supposed to be able to refuse my request, it appears that is what I am up against. Time to find someone who will help me.

Thanks for your support.

Honestly, I can't imagine this scenario.  I had a bunch mock me and deride my hope in Mino, but every one of them rolled their eyes and brought out the prescription pad.  I never had a doc deny me the prescript.  Can you report him?

[stwig]

Hi Jenn,
It seems to me that the rheumatologists don't truly care if you get cured. If they were to cure everybody, their huge revenue stream would dry up. I don't know who is worse, doctors or pharmaceutical companies. Neither of them care about the suffering, they just want to keep treating the symptoms (not the cause), writing the prescriptions, and selling the chemicals.

Sorry about the angry rant, I am just frustrated by this.
-S

[Ellen RA-AP]

Sometimes when things get really frustrating I say to myself, “the world is really pushing me in another direction, I just don't know where that is.”  Think of this, if that doctor were to prescribe minocin to you against his will, he would be treating you with 1/2 a heart. Any issues you had moving forward he would not be eager and understanding in helping you through them.  I think the door slamming is the wind blowing at your back, pushing you to  somewhere you would be better off being.  Each of us has an angel and yours wants  you to go somewhere else.

In the meantime, what are you taking to be comfortable?  I would suggest at least 6oomg of ibuprofen three times a day.  Also, it would be wise to get yourself started on a good probiotic, cut back on sugar if you are a candy gal like me, and even add 2 spoonfuls of apple cider vinegar to a small glass of apple juice once or twice a day.  And keep moving your body as much as possible! 

Anyone know anything about elderberry?  My pediatrician showed me a box for a supplement made from elderberry that is antiviral…he swears by it!!!

Have you spoken with your PCP about minocin?

[Maz]

Hi Ellen,

Bearing in mind that early Lyme symptoms are fever, flu-like symptoms and a rash and that bactrim is a Lyme treatment…is it possible that you had Lyme/coinfections and that your reaction to bactrim was a herx and not an allergic reaction? Did the doc test you for allergy to bactrim or just take you off it based on your symptoms? Just wondering, because it seems that quite a few of us here with RA have connected its onset with Lyme.

Trouble is, the tests for Lyme are notoriously inaccurate. It really has to be treated based upon clinical presentation of symptoms. You had a rash, fever and weird viral-like symptoms…that should be enough for a Lyme dx according to Lyme Literate physicians. Lyme also has a tendency to wax and wane, going through dormant periods and then reappearing when the immune system is somehow compromised. Even if you were treated with the standard 3 to 4 weeks doxy, this may not have been enough and there is also the possibility of coinfections that need different tx.

Although I haven't been to see Dr T, my understanding is that although he is listed as an “AP” doc and was instrumental in the MIRA trials, for which we all are grateful, he is not really into “infectious theory”, as per Doc Brown's “antibiotic protocol”. That is to say, he doesn't adhere to the notion of rising and falling serum levels to induce controlled herxing. Rather, continual daily dosing works more as an anti-inflammatory. Higher dosing, as you already know, also predisposes one more to systemic yeast. This is something “lymies” can relate well to, as they have to take higher doses/combos for extended periods of time.

You said you were tested for everything, but that your doc concluded an “overactive immune system”. According to Doc Brown, if one believes in infectious theory, there is no such thing as an overactive immune system or an immune system that doesn't know what it's doing and has gone haywire somehow. Rather, the immune system is doing what it's supposed to be doing, though misdirected or tricked, if you will…fighting an infection that is, unfortunately, hiding within our own healthy cells. I'm sure you know all this already, but I think it says something about a doctor's belief systems when they speak in these terms and it's easier to weed out who will advocate for us while we are on AP, which strictly speaking is pulsed, low-dosing, as Doc Brown prescribed it.

You asked, “How would you know a serum increase?”

Well, whenever you take an abx, this increases the serum levels of that abx in the blood for so many hours. It gradually increases in the blood to a peak, as it takes effect, and then begins to drop off as its effectiveness wears off. By doubling your dose, you'd have higher serum levels for so many hours before it then drops off, rather than keeping a more consistant level in your system by dosing every 12 hours. Herxing occurs as serum levels decline or increase, because this is when the bacteria are more prone to dying off….so these higher levels at longer intervals could predispose one to heavier herxing.

>>>Also, here is another question. On the 25th I have to see my PCP who treats my yeast. I was thinking that at this visit I might ask her to run some bloodwork for anything unusual that I hear discussed on this board, like babesia, etc. What would you advise? Do you think testing for celiac is a good idea?<<< I would think that if you suspect chronic Lyme and coinfections that your best bet would be to see a LLMD who will treat according to your clinical history and symptoms…also because your average PCP doesn't believe in chronic Lyme as it has been ruled out by IDSA guidelines. You could get specialized testing through IGeneX labs in CA (not covered by insurance for the same reason as above), though this testing is generally seen by LLMDs as just being confirmatory and not conclusive if negative. Most PCPs scoff at specialized lab testing and don't bother with coinfection testing at all, so if you have a PCP willing to do this, you will be very fortunate indeed. As for other tests, the one that seems to be a concern for you is yeast, so getting tested for this would be good. Not sure of your other health concerns, though it is said that about 75% of people with rheumatoid disease will have leaky gut and celiac…so this may be worth your while to rule in/out, as well as any food sensitivities you suspect. If your doc will also test you for mycoplasma (incidentally, mycoplasma is also a coinfection of Lyme), this might help further in figuring out the infectious cause of your RA….check out: http://www.mycoplasmasupport.org

That's about all I can think of at this point…but perhaps others can suggest tests they've found useful to help you further.

Peace, Maz

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