RA relapse

[stillthe1]

I'm find the new board difficult for me to navigate, so don't use it much.  But I'm getting desperate.  After approx. 11 yr history of treating my RA with conventional meds, I started the antibiotic protocol in April 2007, using brand name Minocin.  I did remarkably well, so then decided it was foolish to spend so much for brand name and switched to generic approx. a year down the road.  Then noticed symptoms coming back on me some, so thought I would try Doxy, then decided that wasn't working for me as symptoms continued gradual increase.  Went back on generic minocycline (still didn't want to pay for brand Minocin), probably around Sept. 08.  Since that time, I've noticed gradual regression with symptoms slowly increasing.  

Why am I so thick-headed?! It didn't hit me until a week or so ago that it's probably because I abandoned the brand name Minocin.  I know from the Board that many, many people have great success on the generic, and I wanted so much for it to work for me.  I live alone and it poses a real hardship for me, but I ordered again last week. With holidays I may have to wait two more weeks before I can start back on brand name.  If I could bring back the way I was feeling six or 8 months ago, I'd gladly pay the difference in cost!   

So why am I writing?  Fear, I think! When I awakened this AM, it's like I'm double worse than yesterday morning.  It seems all of a sudden it's mushrooming!  Has anyone else experienced a like story?  How long can I expect it will take for the brand name to start making me feel better again?  I have swollen, red, painful knuckles  and now my wrist, knees and feet are causing pain.  I'm headachey, and generally not feeling well.  I felt good for so long, I almost forgot how this disease makes us feel.

If anyone has time and can offer advice/encouragement, it would be nice.  I'm going to use peroxide/epsom salts tonight.  If I can acquire a lemon, will try the drink again.

[A Friend]

[user=51]stillthe1[/user] wrote:

I'm find the new board difficult for me to navigate, so don't use it much.  But I'm getting desperate…..  

….foolish to spend so much for brand name and switched to generic approx. a year down the road.  Then noticed symptoms coming back on me some, so thought I would try Doxy, then decided that wasn't working for me as symptoms continued gradual increase.  Went back on generic minocycline (still didn't want to pay for brand Minocin), probably around Sept. 08.  Since that time, I've noticed gradual regression with symptoms slowly increasing. 

 
Why am I so thick-headed?! It didn't hit me until a week or so ago that it's probably because I abandoned the brand name Minocin.  I know from the Board that many, many people have great success on the generic, and I wanted so much for it to work for me.  I live alone and it poses a real hardship for me, but I ordered again last week. With holidays I may have to wait two more weeks before I can start back on brand name.  If I could bring back the way I was feeling six or 8 months ago, I'd gladly pay the difference in cost!   

I have swollen, red, painful knuckles  and now my wrist, knees and feet are causing pain.  I'm headachey, and generally not feeling well.  I felt good for so long, I almost forgot how this disease makes us feel.

If anyone has time and can offer advice/encouragement, it would be nice.  I'm going to use peroxide/epsom salts tonight.  If I can acquire a lemon, will try the drink again.

Stillthe1,

You can get brand Minocin for much less at BuyLowDrugs.com — about 1/4 of the cost. 

Your problem may not be solely the brand vs. generic; there can be other things going on.  Have you taken probiotics regularly while on the abx? 

What are your new symptoms? 

When there are weather changes (especially Spring and Fall) — fronts, etc., — this can aggrevate our condition temporarily.  Try noticing if your symptoms are worse when there is a storm or other weather change.  Dr. Brown cited barometric changes in his writings and about actual tests done using a barometric chamber. 

Also, stress, and dietary elements can adversely affect us — sugar, gluten grains, and milk products are frequently culprits. 

A buildup of acidic waste by-products from the die-off can cause painful feet and toes, and elsewhere in the body for some of us who do not have good liver detoxification.  After I'd been on AP the first year, I started having painful feet and toes, and getting red meat and pork out of my diet gave me immediate relief.  Some of us do not have enough Hydrochloric Acid to break down meat proteins.  When this happens the acidic wastes do not get neutralized and excreted.  If this is your problem, and you stop eating meat, you could possibly see a difference very soon. 

Also, for a test for several days you might try putting 1/2 teaspoon of baking soda in a bottle of water and drinking it between meals in the morning and one in the afternoon — but not before or after eating.  If you are overly acidic, this should be helpful after two or three days.  My AP physician had me do this much more frequently than that for a two day test (every waking hour, in fact) to determine my own acidosis.  In my case, it definitely was.  If this helps, you will probably want to do a search in the little white search window on the board above using words like:  “alkaline foods” and “adidosis” and “pH balance”  or “painful toes” — and learn more about this. 

Good luck to you,

AF

 

 

 

[Maz]

Hi Stillthe1,

In addition to AF's wise suggestions, you might find this link on the main website will give you some further food for thought:

Things To Check If You Are Not Seeing Improvement

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

You do hear of people experiencing relapses when they change from brand to generic or even vice-versa or from one generic to another. As your worsening seemed to start right after switching from brand to generic, it's very plausible that this is the cause and that it's not just a herx. Herxes tend to decrease in intensity over time and what you're describing is a progressive worsening.

If changing back to brand doesn't quite do the trick for you (not forgetting that you may well herx on brand), then you might want to consider talking with your doc about altering your dosing schedule and possibly adding a second antibiotic into the mix or even trying IVs to help you get over the worst of this flare. It's not uncommon for relapses to occur when the primary infection(s) are suppressed sufficiently. Sometimes when the coast is clear, other pathogens will seize the upper hand. This happens with Lyme patients a lot, which is why a combo approach is generally the accepted mode of treatment and these combos are traded up on a regular basis.   

Whatever you do, don't beat yourself up about not clicking about this worsening sooner…it's all a learning curve for all of us. We're in the middle of one of the busiest, most stressful seasons of the year…stress and diet may well be contributing to your symptoms.

I hope you turn things around soon, too….and very good ideas to be doing the epsoms/peroxide baths and lemon/olive oil detox drinks! Anything to help you through the worst and keep your inflammation down has got to be good!

Hang in there and don't let the mycos get you down…you'll be back on track in no time by just pacing yourself and going through all the possibilities one at a time.

Peace, Maz 

[richie]

Hi
There are very solid reasons for taking the brand –while it is true many folks do well on generic —many people also do not do well on it and only see progress when switching to the brand —if cost is a factor AF's suggestion of buylowdrugs.com is an excellent one —
richie

[stillthe1]

My new symptoms are primarily swollen, terribly painful finger and hand joints…to the point of nodules forming on knuckles.  It's difficult to brush teeth, open doors, drive, pull covers up on bed, and if it weren't for pliers (including water pump pliers), I don't know how I would make it!  All the other symptoms are ones I had prior to starting any treatment years ago…wrists, shoulders, knees, elbows all tender, aching and just the general “don't feel good” feeling.

Yes, I take PB8 regularly, from 3 to 6 capsules daily, but still need Diflucan from time to time.  And that's another symptom that's worse right now, the typical female complaint of yeast that's been persistent of late.

Thank you for taking time at this very busy time of year to give me some welcome and much appreciated advice!  Having family in tomorrow, so taking it slow to prepare, and time is at a premium for all of us today and tomorrow! Thanks again…

 

[stillthe1]

Thank you very much for the encouragement!  And for the other ideas to consider.

 

[stillthe1]

And thanks to you, too, for encouragement.  As I recall, it was you who put me on to PB8 as a stable probiotic many months ago, Richie.

[chriscw8]

Stillthe1,

I am not doing well on generic Minocycline either.  Noticed a difference within a week.  Maz from this Board referred me to “buy low drugs” in Canada.  Their prices are great.  To get 30 Minocin here locally it would cost $300.00.  I can't afford that.  You can purchase 100 brand name Minocin from Canada for $165.00.  That's a substantial savings.  My order should be arriving any day now.

I have mild RA so pain is not my major problem but since taking the generic for the last 3 months my acid reflux has gotten much worse.  When I began AP in June 08 with brand name Mino, the reflux was the first thing to improve.  Since I have lung fibrosis I feel the Brand will work much better for me.  I'm grateful to Maz for telling me about Canadian drugs.

Good Luck to you.  My advice is to try Buy Low Drugs from Canada if your budget will allow it.  Maz can answer any questions you might have.  You can also contact me if you have questions.

Christine

[davew]

Hi Chris! (Waving)

Just a slight thing to consider is the time of year. The Holidays are stressful for many and it may be worth considering not making major changes during a stressful time.

Just look for some relief and when things get back to “normal”, approach it.

Just a thought….

Dave

[chriscw8]

Hi Dave,

I've been feeling “not so good” for the last two and a half months since starting generic mino so I think that's the problem.  I seem to be getting nauseous from that pill too.

I had just a small group for Christmas Day dinner so that took off a lot of pressure.  Holidays with family are nice but they can be stressful!

All the best for 2009

Chris

[Author]

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