Does minocycline stop working after 9?

[Dena]

I have been so happy with the minocycline treatment for the last 9 years.  But the last two months I have ached all over.  y blood tests just came back and the RA factor (once at a low of 20, 9 years ago a high of 141) just spiked to 191!  My doctor is having the labs done again.  But the way I feel, I knew the inflammation was way up. 

Has anyone had experience with this. I can't believe it is herxheimers.  What do I do now?

HELP!

[lynnie_sydney]

Dena – so sorry to hear that your geat 9 year run is now running into some choppy waters.  I have been on mino for 4.5 years and it's still working for me. It may be difficult for you to find someone who's had longer experience than you on AP.  However, I know there are some people who have ongoing great experience and others who have run into a few problems after some years. Dr Brown did say that it was good to rotate the specific abx every 7 years or so, even for a 6 month period, to maintain the efficacy. Maybe re-read some of the Scammell book re this? My ten cents worth would be that you may need to put something else into the mix or rotate. It could also be to address dietary triggers and/or maybe yeast. Hopefully, you'll find a few people with some concrete ideas for you…….and that you and your doc can come up with some options. Best to you in your quest at what must be a worrying time.   Lyn  

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)

[Dena]

🙂 Thanks so much.  I'll have to take the book off the shelf and take another look-see.  I'm motivated–anything to stay away from the standard killer rheumatoid drugs.  Good day!

[DianeWI]

Hi Dena,

I started AP 16 yrs. ago and have run into the same problem, but maybe a twist of difference.  I'm not tolerating Minocin well at all anymore.    I have raging gut problems and take tons of acidophalas.  I use many different types.  The last thing I take before bedtime is acidophalas and still, it doesn't seem to calm down the side effects of Minocin. 

I'm also noticing more fatigue and confusion issues.  Its probably worse now then when I first started the AP.  My AP Doc does not want to put me on the I.V.'s anymore either. 

I am strugging to get a balance here too.  I have tried Doxy and that makes the gut problems even more severe then the Minocin.  I do tolerate Zithromax so I am taking that more often to keep some of the infections controlled. 

For now, I'm clueless as to what to do to get back on program.  For now, I take 2 Minocin a week only, and one Zithromax.  I used to take 2 Minocin daily and when I was severe, I was having one Clindo I.V. a week.  I know that only 2 Minocin a week is not doing enough as I'm getting more symptomatic.  I notice it with being all around more chemically sensitive and of course major fatigue.

If anyone has suggestions, please let us know!

Diane

 

 

[Dena]

Diane,

Thanks so much–you are the first person I have heard from who has been on it that long.  At first, I had to take spectrabiotic on Wed. (no minocycline) and on the weekends when I don't take minocycline in order to control the vaginal yeast infections.  I haven't had to take the spectrabiotic for over a year now.  I haven't had any other problems with the minocycline.

Last spring I was using a cane because my left ankle started catching and almost making me fall.  It got bigger and more painful.  At that point my RH factor was up and my neuroligst increased my celebrex to two 200mg, one in the morning and one at night.  I also went from minocycline 3 days a week to five days a week.  It helped some with the ankle, but flares all over my body have been increasing and now RH is up: it is 141 (I think is misstated it initially on here).  My blood work is being done again because some other factor didn't jibe with the 141 and my doctor didn't say what was next, except to recheck the blood work.  However, I told him I was not surprised RH was up because I have been aching all over.

I'm going to review “The New Arthritis Breakthrough” to see if there are any suggestions there which I may have fogotten nine years ago when I read the book.  In the meantime, I hope you can get some relief.  So sorry you are having gut problems with the minocin.  Have you tried “Spectrabiotic.?”  It may be similar to asciphophalus.  I has thousands of “good” bacteria which is supposed to help replace what is destroyed by the minocin.

When RH factor was much lower, I backed off on the minocycline and maybe that's why everything started to get worse.  Since I have increased it, however, RH went up and the flares are worse.  My doctor follows my lead on this.  No rheumatologist was ever helpful, except one who wrote the initial prescription saying, “I have had one patient on it for 3 weeks with no success.”  This comment was made after he quizzed me on the book and the protocol.  I wanted to suggest that he read it as it can take a year for results as it did eventually with me.  However, sarcasm was not appropriate as I was at his mercy of the script.  I saw him only once.

I had another doctor (before I found the minoclycine treatment) who sold me tons of USANA products (unethical, I'm sure) and when nothing cleared up in three weeks, he had the audacity to tell me I just didn't want to get better.  Fortunately, I found a brilliant neurologist here.  I had been on minocycline for several months by the time I found him, and he was so impressed with RH going from 141 down to 40 within a year, that he said, “Whatever it is you are doing, keep doing it.”  Now what?  Neither of us knows, but I know I need to take the lead on this because I am absolutely avoiding methrotrexate and no more prednesone for me–didn't help with the pain or inflammation, just made me crazy and ravenous.

Keep us abreast of your progress and hunt for a solution.  I'll keep your situation in mind, too.

 

 

[lynnie_sydney]

Dena – having just read  your last post, upping the mino again may just mean that you are having a 2nd herx. And the bloodwork may be herxing too. My bloodwork initially went right up when I started mino (and AFTER the physical herx) then started to come down again 6 months later. Just a thought to give you a bit of cheer. Really suggest a quick re-read of pertinent sections of the Scammell book.
Cheers Lyn

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)

[Dena]

Lynnie thanks so much–have my reading for tomorrow all set.  I keep that book handy, but only so that visitors who ask me about my treatment can see it.  Haven't read it since the first read when I bought it.  Time to review!

[A Friend]

Dena,

This is my own understanding of the answer to your question as to whether the minocycline stops working after 9 years.  I believe it depends on the level of the immune system, and whether or not it has been over-burdened with toxic/acidic waste while we are recovering. The following is my opinion, arrived at from my own experience.  Many others may have different versions in their own cases. 

In my own case, it worked beautifully for about 7 years… after the first 4 months AP, I felt for the most part like a well person.  I already was on what I considered to be a very healthy lifestyle and diet.

Then close to 7 years on AP and doing very well, I developed a respiratory bug (my spouse had it a month along with the whole community in winter).  I never got sick, but felt a bit of pressure between my breasts as time went on, and began a little occasional cough that didn't go away.  Before long, I wasn't feeling as well as I had felt for the past 6-1/2 or 7 years.  I'd asked my AP the whole year about it, and he'd just say allergy — told him I didn't have allergies. 

I finally went to another AP doctor an hour away for a 2nd opinion.  He ruled out asthma and drew blood for labs.  One of the tests came back extremely high for C. pneumoniae — this is the respiratory bug that causes the epidemics in schools and communities, and just exactly what my spouse had.  I told my old AP physician about it, and he said, “but you are on AP….”  Then remembered that AP did not protect against the respiratory bug. 

My new AP put me on Zithromax pulsed… and had me stay on the Minocin pulsed.  In about a month or so on both, I began having pain syndromes and stiffness in parts of my body like I'd never experienced before.  Then a couple of weeks or so later, I waked one morning and put my feet on the floor, and had what can only be described as two things:  1) the Mother of All Herxes; OR 2) someone was tazering me constantly for about 3 weeks. 

What I now know is:

1) When some of us have been on abx for 6-7 years, there may be a lowering of resistance (or not);

2) Some of us have livers whose detoxification systems 1 and 2 become compromised and do not have the ability to detox medicines, acidic wastes from meat and other dense proteins, products of metabolism, die-off from a large population of killed microbes inside our body, acids created by stress, etc.  If our mineral pool is used up, and the above things cannot be neutralized so they can be excreted in feces or urine or excreted through the skin, these MUST be stored in the body until the body finds enough available minerals for them to be excreted. 

3) When the above condition of very high stored  acidic wastes being stored happens and has gone on for a long time (or the liver rebels and says, “ENOUGH ALREADY like mine did!) , a cytokine storm can erupt and produce pain syndromes akin to what I described happening to me. 

4) After the cytokine storm, and new labs were done, in addition to the C. pneumoniae, I also had several named viruses that I'd never had before.  When our body is overwhelmed and the immune system is beaten down/further depressed, that is when viruses occur — old ones from childhood that have been dormant and/or new ones that we are vulnerable to.  Once a virus enters our body, we are never rid of it, but it can become dormant…lying in wait to rise again. 

Again, this is from my own experience and understanding, but much research has been found with each even that has supported these conclusions. 

It was determined about a year ago (something I'd never paid attention to, but now do) that I had acidosis, and I know it is of longstanding because of some of the early symptoms, even when I had been on AP only about 6 or 7 months.  I found even then when my toes and feet began to hurt badly and I could hardly walk, that when I quit eating red meat and pork, I was able to continue on Minocin and the pain in my feet went away daily in about 10 days.  There is a lot more to the damage the acidosis did to my body, but this hopefully will help someone else — even if only by their avoiding depressing their immune system by putting too much of a burden with acidic wastes on the immune system.  Unfortunately, our so-called “traditional” medical doctors are mostly not knowledgeable about this.  If I had not become desperate, I probably never would have found the naturopathic doctor's answer to my problem.   

Best to you,

AF

[Dena]

EUREKA!!  Last year my doctor put me on Boniva.  I kept forgetting to take it, so I think I had only a couple of doses spread several months apart.  Last year was when the left ankle got really bad and I increased the celebrex and minocycline.  In December and January I decided to be faithful about it, and dilligently took the Boniva.  This month, I missed the dose.  I have been feeling terrible since December, so today I went to the web site on the side effects of Boniva:

“Rarely, patients have reported severe bone, joint, and/or muscle pain starting within one day to several months after beginning to take, by mouth, bisphosphonate drugs to treat osteoporosis (thin bones). This group of drugs includes BONIVA.”

I'm stopping the dose completely.  Hopefully, all this flaring was the side effects of Boniva, having nothing to do with my arthritis.  Here's hoping!:blush:

[Lynne G.SD]

Hi Dena;
     I am beginning to think that I am in the same boat as you.I have SD and have been on AP over 8 years.My doctor warned me that this might happen and rotated my antibiotics religiously and lowered the doses as much as possible as she says that antibiotics in the long run can be damaging. to the immune systemWe tried all the dietary changes possible and they helped for a time but the acidosis,yeast and leaky gut will not go away no matter what we do and she is almost positive that the antibiotics are causing the problem and I am starting to believe her.She was very sick and bed ridden herself so she knows the name of the game.Her view is that we have to get off of them as soon as we can get the immune system up and running properly but in my case that does not seem to be happening.I have been in remission for some time but it seems to be going downhill for the last few months.The more I read about MP the more it sounds like the possible answer to this problem.I have two friends with SD who are on the protocol and doing extremely well on it.The antibiotic dosage is so low that the immune system is not being suppressed by them  which seems to be my case.   Lynne G./SD

[A Friend]

Dena, Diane, Lynne,

Some more research came to my attention that further suggests to me that a mineral deficiency (and it seems especially magnesium deficiency which is needed for about 300 different functions) can possibly be at the root of the problems for many of us — especially when we have been ill with the stress that goes along with it (creates acids), PLUS the medications and Nsaids being acidic create more usage and need for/of minerals to neutralize the varied acids that form so they can be excreted (and without the minerals, just build up).  I copied and pasted these previously for my own reference, but would like to share them with you.  (George Eby is a scientist, not a physician.)

Link 1:  Excerpt/quote at beginning of George Eby Research:
http://george-eby-research.com/
 
This site has become a teaching resource concerning natural treatments for disease, and it is used by naturopathic physicians (NDs), allopathic physicians (MDs), pharmacists (RPhs), academic researchers and the public. George Eby believes that “natural alternatives” should be the “mainstream” of medicine…..
 
Link 2: 
http://george-eby-research.com/html/magnesium-depression-review.mht

[Editing my Post… a Note:  After posting the above link, and reading much of it later, it is now suggested that the whole thing be read and/or printed… 22 pages.  It covers so much more than just depression as a result of magnesium. AF]
 
Magnesium Treatment of Major Depression and Related Mental Illness: A Review of the Neurobiochemistry, Animal and Human Evidence with a Suggested Treatment Protocol 

[align=center] Abstract[/b][/align] Magnesium deficiency is shown in this review of the literature to cause major depression, and magnesium treatment is shown to be effective in its treatment.  Inadequate intraneuronal magnesium, particularly when associated with excessive intraneuronal calcium, has been repeatedly shown to cause major depression and many other mental and neurological illnesses.  The first use of magnesium to treat depression occurred…………….

 
Link 3:
http://george-eby-research.com/html/magnesium-deficiency.html

WARNING! MAGNESIUM DEFICIENCY — AS CAUSE OF MODERN ILLNESSES
Symptoms of possible magnesium deficiency syndrome found when blood serum levels are below 0.9 mmol/L Mg serum include: abdominal pain, arrhythmias, asthma, ataxia, attention deficit hyperactivity disorder (ADHD), chronic fatigue syndrome (CFS), circulatory disturbances (arteriosclerosis, cardiac infarction, stroke), cluster headache, confusion, cramps, depression, diabetes mellitus, epilepsy, hypertension, migraine, neuro-vegetative disorders, osteoporosis, Parkinsonism, preeclampsia, stress dependent disorders, tinnitus, tremor, weakness
Examine the Conclusions section for this list of magnesium deficiency symptoms. See the Full text article here: DH Liebscher, DE Liebscher. About the Misdiagnosis of Magnesium Deficiency. Journal of the American College of Nutrition, Vol. 23, No. 6, 730S-731S (2004).

---

.

[Dena]

Thank you.  My husband and I have been reading about magnesium and we have both been benefiting from it.

Seems eating right and getting all the vitamins and minerals can do a better job than taking a script when something feels off.  

I'm already feeling better today and noticed my left ankle is considerably less swollen.  I'm giving my body a rest from minocycline and celebrex and won't resume unless the pain gets really bad.  Trying to flush out the body.  Got lots of sleep, too, and back to my naps, so that always helps healing.

You've all been great. 

[A Friend]

Dena,

How did you do after you stopped Boniva? An inquiring mind wants to know.

AF

[Dena]

I'm doing MUCH better off the Boniva.  On Tuesday, after a week off minocycline and celebrex, I took one of each and on Thursday took one minocycline.  So far, so good.   The swelling in my left ankle has diminished a lot, so I am walking more normally.  Also, I don't ache from head to foot.  I am so relieved to think it was the Boniva.  Fosamax has the same warnings for side effects.  Thanks for asking.

[Maz]

Hi Diane and Dena,

I was just reading through some posts on the rheumatic.org BB and this came in today from a C Stonkey, otherwise known as Cooky, I believe. She shares some great information from Doc Brown's notes and sounds as if she had direct access to them. Just thought you might find it interesting to read these case histories that show that Doc Brown often changed up his protocols for individual patients:

***************************************************************

From C Stonkey – rheumatic.org BB 3/6/08

“It's my understanding the mycoplasma organisms divide slowly – anywhere from
every 24 to 48 hours, supposedly making it unnecessary to take the
antibiotic daily, and that is what worked for me and has worked for many
other patients. The more of the antibiotic you take the greater your risk
of gut problems, and once that gut gets out of balance – watch out. You
don't want to take any more of the antibiotic than necessary to get the job
done. But we are all unique and what works for one person may not work for
another.

Oral dosages may run anywhere from 100 mg. once a day three times a week to
100 mg. twice daily three times a week. Sometimes patients take 100
mg.every other day. I can remember reading in Dr. Brown's papers how he
would sometimes have the patient take 100 mg Minocin in the morning and 100
mg doxycycline in the evening – M-W-F. Sometimes he rotated the
antibiotics – 6 weeks on one, 6 weeks on another, etc. He often prescribed
Nystatin along with the antibiotic(s). I remember a patient in Minnesota
with very severe RA. She was on the 100 mg three day a week protocol for a
long time but not making progress. It was suggested she increase to 100 mg.
twice daily five days a week to see if she could get a response. It worked.
Eventually she was able to go back to the 100 mg. a day M-W-F routine.

Then this story. A woman in St. Louis with RA was doing very well on the
100 mg. M-W-F protocol when she experienced a horrible flare just as she was

preparing to travel to Virginia to see Dr. Cap Oliver who took over Dr.
Brown's practice when he died. It was suggested she double the dose –
taking 100 mg. in the AM and 100 mg in the PM – which she was reluctant to
do. The drive to Virginia was miserable. She felt badly about her
son-in-law having to carry her up and down stairs, etc. and finally decided
to double the dose. By the third day, the flare was under control.. That
worked for her but may not work for you.

In the MIRA studies the dosage was 100 mg. twice a day seven days a week,
and many doctors now follow that protocol which may explain why so many of
those patients end up with gut problems which then can lead to other
problems. It is so important patients take a sufficient dosage of a good
probiotic when on antibiotics.

I think the FAQ on http://www.rheumatic.org outlines a protocol where you take the
Minocin/minocycline M-W-F and take Zithromax T-Th and Sat.
Some physicians are now adding an anti-fungal to the protocol.”

****************************************************************

Wouldn't it be great if we all had access to Doc Brown's case notes for individual patients….would be a wonderful way to see how he resolved short and long term challenges with AP.

Peace, Maz

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