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Thanks, Maz. You're great and really stay on top of all this.
By the way, everyone, I have chronic reactive arthritis, but didn't put CRA after my name because I didn't know whether anyone would know what it is.
A simple viral infection like the cold-virus can spike the RF. You might fight a virus at this time! Anti-CCP would tell more as it is more specific to RA.
RF is also present in a lot if other infections not just RA!
You did not say if you were using a systemic antifungal. I know Drs' are not used to prescribing them but if you ask you may find they will cooperate. Surely they know that abx cause fungal problems for us all. I am not sure whether they think it effect the liver badly or what the problem is. It does on commencement but so do the abx. It all settles down after a while. If you are not on one I would suggest you see you Dr. about some Diflucan and build on the dose until you have enough, depending on the amount of abx we all take. With what you are taking you must have one of some sort constantly. or you have another infection to deal with which is difficult if you get behind with it. Hope this helps
CRP is normal and has been for 8 years. I normally take Spectrabiotic on days I don't take minocycline. However, I ran out some time ago. Need to get some. I'm not aware of any infection at the moment. I have blood tests regularly, so we can monitor what is going on. Thanks.:cool:
I want to tell you that after two months off Boniva, I am feeling much better.:D I have also cut back on the minocycline to 100 mg every other day. My walking is better–that left ankle which had me reaching for a cane is now standing up well and I don't look like a 90 year old taking steps. Thank goodness the culprit was Boniva.
Before you go for another prescription, check out what you are eating and your general nutrition–that's how I got off meds for restless leg syndrome. All I needed was more magnesium.
Sometimes less is more.
Hi Diane;
Do you think you might be feeling worse because you are now herxing because you are on lower doses of antibiotics.That is exactly what heppened to me.200mg mino a day suppresses your immune system but low dose does not and your immune system can now fight off the micoplasma.It is their dead putrifying little bodies that cause herxing.Some days I feel like I have been hit by a Mac truck.I now know when It is herx and not but it took some time before I could figure out if it was that or disease progression.If I have something important to do and don't want to feel like shit I stop the antibiotics a couple of days before and then feel fine.When I resume them it starts up again.Everyone is different so try to see if this might be your case. Lynne.G/SDDear Maz,
I haven't been on the site for quite awhile and paid my first visit to the nicely redesigned Bulletin Board today (nice job!). While reading various posts I happened upon a few of yours. I found them to be excellent! Very thoughful, very well written, clearly based upon a careful consideration of the facts rather than the Knee Jerk sort of response so often encountered on the Internet these days.
Thanks! And please keep up the good work!
All best,
bikerhiker[user=313]fastspinW[/user] wrote:
I haven't been on the site for quite awhile and paid my first visit to the nicely redesigned Bulletin Board today (nice job!). While reading various posts I happened upon a few of yours. I found them to be excellent! Very thoughful, very well written, clearly based upon a careful consideration of the facts rather than the Knee Jerk sort of response so often encountered on the Internet these days.
Thanks! And please keep up the good work!
BikerHiker,
While I can't take any credit for the new BB format (that was John McDonald's fine handiwork), I really do appreciate your kind, thoughtful words. I'm very new to volunteering with RBF, so your feedback is very reassuring in these early stages. Thank you for taking the time out to jot this note and hope to see you round on the BB as time goes by…unless you're out there on your bike and enjoying life, that is! I was on the bike at physio today, looking at a glass wall, but not quite the same thing. 😉
Peace, Maz
Dear Maz,
Much as I'd like to be out on my bike I'm afraid I'm locked to my desk at present attempting to get the Income Tax paperwork for my business finished.
That said, when I first began taking Minocin 4 years ago I had a tough time walking the 4 blocks to my doctor's office when I got off the subway in Boston. Twenty-six days later I was riding my mountain bike 10 miles a day.
Seems hard (no, impossible) to believe that a bit more than 4 years later most doctors in the USA are just as willfully ignorant of the AP approach as they were back then…
I do very much enjoy your posts and look forward to more of them.
All best,
Bikerhiker[user=313]fastspinW[/user] wrote:
That said, when I first began taking Minocin 4 years ago I had a tough time walking the 4 blocks to my doctor's office when I got off the subway in Boston. Twenty-six days later I was riding my mountain bike 10 miles a day.
Seems hard (no, impossible) to believe that a bit more than 4 years later most doctors in the USA are just as willfully ignorant of the AP approach as they were back then…
BikerHiker,
Wonderful to hear how fast you responded to mino therapy for your RA and that you were able to get back to the sport you love so much. I think you mentioned you were seeing Dr T on the Harvard Protocol in a post on another thread. If you don't mind me asking, are you still doing as well on this protocol or looking to change things up now?
I'm just as confounded as you about the lack of willingness to prescribe this simple, relatively innocuous therapy that helps so many. Seems you and I are certainly not alone here on the BB in feeling this way and, unless a patient is fortunate enough to find a knowledgable AP doc right at the outset, it can be a real uphill struggle…or perhaps more appropriate to say…”downward spiral?”
Just recently, though, I've sensed that there does seem to be a more grassroots acceptance emerging, as more and more people comment that they are no longer willing to simply 'tag along' with the current medical paradigm and are seeking proactively to find alternatives. Perhaps in large part to the internet, but the wider consciousness is changing somehow, as more are deciding to advocate for self in their road back to wellness, and have actively sought out doctors willing to at least prescribe. You're a businessman and will no doubt relate to the pull of market forces. Ultimately, these always win out, as supply scrambles to meet demand. Perhaps as more patients hop on board the “advocating-for-self” wagon, this whole medical paradigm will begin to shift from the roots up? It's my feeling that this is how wider acceptance will begin to unfold, though I could be wrong.
All the best with the tax return. :sick: At least the weather is on the turn and you'll soon be out biking to your heart's content. Meanwhile, I'll be staring at the glass wall in physical therapy for a few more weeks, but aim to be out there myself very soon.
Peace, Maz
Dear Maz,
Recently had all the usual RA blood work done and if I didn't tell you I've had RA for 36 years (and you didn't look at my hands) you wouldn't guess it from the test results. All the labs are still near perfect and this after not taking my Minocin for around 2 months…
I will hasten to add that “not taking my Minocin” was not actually my own idea. To whit, my health insurance coverage comes from my wife's employer since I am self-employed and after originally refusing to pay for my Minocin they eventually gave in (after a 10 month battle) and began paying for it. For the past several years, in fact, I've been able to get my 90-day supply of 180 capsules for a co-pay of $120.
Alas, the insurance changed once again at the turn of the year and the new company administering the drug benefit (Express Scripts) began once again refusing to pay for my meds. (A note here, Express Scripts is a company who stumbled upon the idea that there was Gold Aplenty in Them Thar Hills of Generic pills and they are making billions while working as the administrator of drug plans by forcing folks like you and I to settle for cut rate meds)
Once again I took them on via letters from my doctors, etc., etc. but no matter what I presented in support of the Minocin they would just yawn and say, “Nope!”
As I've had a terrible winter health wise (3 eye surgeries and a broken collarbone) and as my medical bills have been staggering (would you believe it cost me more than $7,000 for 2 twenty minute stints in a mini outpatient OR for removal of cataracts?) I could no longer afford the $1,748.00 for my 90-day supply of Minocin.
Happily, the bills have finally slowed down a bit so I've gone, once again, to Canada and gotten the very same amount of the very same Minocin that costs $1,748.00 in the USA for around $235.00. And “they” say you can save as much as 25% on meds by buying them in Canada…
My new supply of Minocin should be here in a couple of days and I will resume taking this wonderful drug. This time, however, I may opt for the twice a day x M/W/F routine as I more and more have come to feel that the 2 per day x 365 days a year protocol may be a bit too much.
Speaking of which, it's my guess that this whole bit about pulsed vs constant dosing has a great deal to do with the different interpretations of how Minocin achieves its results. Dr. Brown felt that beneficial results were obtained by killing off the little buggies that were triggering an autoimmune response. Many today, on the other hand, seem to reject that idea and rest their case on the anti-inflammatory effects of minocycline.
Obviously, if the latter proves to be the case there is some merit to the idea that More Is Better…
All this said, I am going to try (on my own) the pulsing approach and see what happens.
As far as your comments concerning the possible eventual acceptance of AP treatment of RA…well, I've go to admit that I have my doubts.
I've had Type 1 diabetes for more than 35 years and in response to worrisome problems with peripheral neuropathy in 1981 I began following a Low Carb Diet approach to managing my diabetes. Since that time I have given talks on this protocol to various medical groups, have authored in excess of a quarter million words of advice on the protocol to folks from all over the world, and debated the merits of the low carb approach with Best & Brightest endocrinologists.
Based upon all that experience I have more and more come to believe that while True Belief is generally thought to belong exclusively to those wearing White Collars, those wearing White Jackets hardly seem immune to the warm fuzzy feeling inherent in simply Accepting A Theory And Refusing To Look At Any Evidence That Doesn't Support It.
Back when I worked as a sports car mechanic there were guys who worked methodically to determine the underlying cause of a mechanical problem and then solved it with the minimum use of replacement parts. And then there were the guys who simply kept throwing replacement parts at the problem until it (quite accidently) was solved.
Sad to say, in my long experience with medicine I have most often found my doctors to belong to the latter group…
All best,
BikerhikerI've never understood why any rheumatologist would refuse to prescribe mino for RA. After all, it is an approved DMARD by the Amercian College of Rheumatology, which I'm sure most rheumies are members of. Maybe some patients are not forceful enough with their requests, or not reminding their docs that it is an approved treatment backed by NIH double blind studies. In my mind, any doc that refuses to prescibe mino should be reported to their state licensing board.
Joe,
It's actually fairly simple. Docs don't like protocols that require much messing around and neither do insurance companies. Both, in fact, prefer straight forward solutions like, “Take this here pill 2 times a day for the rest of your life.”
Why?
Well as the service manager I worked for as a sports car mechanic once said, “Buddy, they don't want me handing them a bill that says so and so sat on a tree stump for 1 hour and 11 minutes thinking about what was causing your car to idle roughly and figured out it was a loose screw. Charge $75.00.”
Neither do insurance companies much like paying for a doctor's time. Just as the car owner wants a new “part” for his money, so too does the insurance company favor things from the material world…pills, casts, surgery, etc.
An even larger problem is the incredible complexity of managing life-long illnesses like RA, Diabetes, etc. Lots of things can and do go wrong and figuring out what they are and how best to “fix” them can be very time consumptive and costly. And even then a good percentage of the time we just don't know enough to be able to get the “fixin up” done.
I have on many occasions had to spend hours and hours communicating with diabetic patients who ask for assistance in an effort to figure out what the source of their problem is. As I work for a very reasonable $0.00 an hour, and as I actually greatly enjoy the challenge of diagnosing and fixing health problems (of others anyway) I can get away with the complicated approach to managing diabetes. Doctors making upwards of $500 per hour can't. And many of them, truth be known, don't want to anyway.
Given a choice between helping a patient and playing another round of golf far too many docs these days opt for the latter option.
All best,
bikerhikerConsider trying “Tindamax” by itself or combined with other antibioitics. It is a broad spectrum antibiotic with very deep cell penetration (like Minocin) and has only been in the USA now for 3 years. My doc used to have to get it from Mexico to help his patients. It is a different type of antibioitc than Minocin so it may be helpful if Minocin is less effective than it was. Maybe get tested for co-infections as well. http://www.immed.org or is itwww.immed.com.
K
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