After starting on this abx, some of my neuro symptoms have worsened and new symmtoms have developed. (Nothing have gotten better yet.)
I've taken other abx prior to Mino, but none of them resulted in any pronounced adverse effects.
Most interestingly, AND annoyingly as well, is some muscle pain that has developed in the lower left calf and lower left back.
I suspect the Mino is causing this due to its good tissue penetration and also because the pain lessens if I reduce the Mino dose.
Anyway, I'm thinking that the spirocheets have found a nice resting place in some of my muscles.
And now that Mino can reach them, it's killing them and causing local inflammation due to the release of toxins.
Is this a possible explanation?
If this is indeed a possible explanation, how long would it then take to kill all the bugs there and when will the pain stop?
Have any of you experienced similar muscle pains with Mino?
Michael
Your explanation sounds right on the money.
Sorry can't be of more help.
I'm sure others who've been on Mino longer will have the BEST answers for you.
After 20 months of ABX, I just started taking Mino 50 mg this week.
I'm impressed you've been able to stay on it.
This is my one good chance to get the Mino to my brain & nerves-----so I'm going to do whatever it takes to tolerate it.
I haven't worked up to 200 mg daily------that's a long time away for me. But just 50 mg. makes me weak-----hard to even explain it. All of a sudden, I have to go lie down.
I've read on Lymenet that some have made a great deal of progress on Mino, so I hope you'll see some good results that will encourage you.
I use Magnesium Citrate capsules away from ABX & Gerolsteiner water (full of minerals) that comes in glass bottles at the grocery store to keep achiness at bay.
Hope this helps.
Take Care,
Jan
quote:
Originally posted by RECIPEGIRL:
I'm impressed you've been able to stay on it.
Maybe you won't be so impressed after I tell you the whole story.
I started out taking 200mg/day since it didn't seem to affect me much.
But after about a week or so, I started developing bad headaches, muscle pains, aggressive behavior, inability to handle every day problems, etc.
I was a terror to my wife and kids, and I didn't know it was due to the Mino.
On my next visit to my LLMD, I told him all this and he suggested I reduce the Mino dose. And so I reduced it to 100mg/day.
This took care of all the aggression stuff and took the brunt of the headaches.
Now, most recently, I have further reduced it to 50mg/day to see if I can also get rid of the muscle pains.
So in average, I've taken 125mg/day or so.
Btw, be aware of eye problems. Mino by itself can enter the fluid of the eye and cause eye disturbances.
This happened to me to the extent that I could hardly read at times because I was unable to focus with my right eye.
By reducing the Mino dose, the eye problems went away.
Michael
[This message has been edited by cmichaelo (edited 30 December 2004).]
Wow-----you have had a rough time on it. The neuro stuff is very scary. (Couldn't think straight on Mepron)
Glad to hear your doctor saved the day.
Thanks so much for the warnings about the agression & eye problems. I have researched Mino here on Lymenet, but have never come across eye problems.
I already have weird eye problems that never seem to go away. Pre-lyme diagnosis the eye Doc & PCP both gave me ABX eye drops, but it never helped.
I will definitely warn my family! I like hearing from folks who've been there & done that.
Thanks again-----very interestig stuff.
Best Wishes,
Jan
quote:
Originally posted by LymeLaura:
Aha! Now I know why my calf, hips, and back ache. Started 100 mg minocyline 2 times a day with Ketek 2 weeks ago. I'm supposed to start Flagyl for 5 days in a week. Not looking forward to it!
It's just a theory.
I'm not a doctor.
I'm trying to find out if there could be any truth to it.
I wonder how many spirocheets there really are in a lyme infested body.
Anyone have any insight or theories?
I mean, we know from Bowen that there are plenty of Bb cysts floating around, which is why they can measure the titer level.
But do we know anything about how many Bb's are in the tissue? I can imagine that is impossible to measure.
Michael
Chainsaw-----
Hi. How are you doing?
I didn't realize you took Mino for 8 months. Sorry to hear it didn't seem to work. I was so hoping you would get your IVs. Did you happen to see my post about "reduced glutathione." It's not a cure, but might help a tad on really bad days.
http://flash.lymenet.org/ubb/Forum1/HTML/029925.html
My Bartonella was negative from LabCorp----- which I know doesn't mean anything. I want to see what Mino will do for me, but I still keep wondering about Bart.
Anyway, hope you can find some answers soon.
Bye,
Jan
I have read that people have experienced very different reactions to the generic vs the brand. It seems the generic is quite often not up to the same quality as the brand and is nore likely to cause adverse reactions. Supposedly, the generic does not help the neuro problems like the brand does. I believe that observation was made by MS patients.
I don't know if that will help with your symptoms or not. The symptoms do not necessarily mean that something is being killed off as they could easily be side effects caused by the medication as well. I don't see any symptoms listed that specifically relate to muscle aches and pain but I doubt the drug makers report everything they observe. The following are some of the side effects of Minocyline:
http://www.rxlist.com/cgi/generic/minocycline_ad.htm
Due to oral minocycline's virtually complete absorption, side effects to the lower bowel, particularly diarrhea, have been infrequent. The following adverse reactions have been observed in patients receiving tetracyclines.
Gastrointestinal: Anorexia, nausea, vomiting, diarrhea, glossitis, dysphagia, enterocolitis, pancreatitis, inflammatory lesions (with monilial overgrowth) in the anogenital region, and increases in liver enzymes. Rarely, hepatitis and liver failure have been reported. Rare instances of esophagitis and esophageal ulcerations have been reported in patients taking the tetracycline-class antibiotics in capsule and tablet form. Most of these patients took the medication immediately before going to bed (see DOSAGE AND ADMINISTRATION).
Skin: Maculopapular and erythematous rashes. Exfoliative dermatitis has been reported but is uncommon. Fixed drug eruptions have been rarely reported. Lesions occurring on the glans penis have caused balanitis. Erythema multiforme and rarely Stevens-Johnson syndrome have been reported. Photosensitivity is discussed above (see WARNINGS). Pigmentation of the skin and mucous membranes has been reported.
Renal toxicity: Elevations in BUN have been reported and are apparently dose related (see WARNINGS). Reversible acute renal failure has been rarely reported.
Hypersensitivity reactions: Urticaria, angioneurotic edema, polyarthralgia, anaphylaxis, anaphylactoid purpura, pericarditis, exacerbation of systemic lupus erythematosus and rarely pulmonary infiltrates with eosinophilia have been reported. A transient lupus-like syndrome has also been reported.
Blood: Hemolytic anemia, thrombocytopenia, neutropenia, and eosinophilia have been reported.
Central nervous system: Bulging fontanels in infants and benign intracranial hypertension (Pseudotumor cerebri) in adults (see PRECAUTIONS, General) have been reported. Headache has also been reported.
Other: When given over prolonged periods, tetracyclines have been reported to produce brown-black microscopic discoloration of the thyroid glands. Very rare cases of abnormal thyroid function have been reported.
Decreased hearing has been rarely reported in patients on minocycline hydrochloride.
Tooth discoloration in children less than 8 years of age (see WARNINGS) and also, rarely, in adults have been reported.
quote:
Originally posted by kissis:
This week I thought I pulled a musel in back yanking my tutle neck off but I now relize its a herx responce from mino, my upper back/neck area is literly killing me
Terri, it's funny what you said about pulling a muscle. That's exactly what I thought too when I first developed pain in my calf.
It's been hurting for 7 weeks now. When will it go away.
I'm not taking pain killers as the pain is not that big, though big enough that I'm limping around.
quote:
Originally posted by chainsaw joseph:
...it was like an 8 month herx on it.It did help me some but nothing great but Im in real bad neuro shape.
Joseph, do you see Dr.L in NY too?
Why did you stop the Mino? What else were you on and what are you on now, if I may ask?
Did you develop muscle pain from it?
I'm in bad shape too, neuro wise. The more Mino I take, the more foggyheaded I get and the worse the short term memory gets.
Michael
I'm glad to hear you're getting IVs eventually. Here's hoping he'll keep you on it long enogh to do some good.
PreLyme diagnosis: I had 10 days of Levoquin for blood test that showed mycoplasma pneumonia. I was shocked I didn't go into bad pain------everything I took back then would throw me into pain.
But by the end of the Levaquin, the back of my head hurt a bit for the very first time ever. Previously, I had just had neck pain & weakness. Slowly over time, it got bad & I awoke every morning with the back of my head & neck in severe pain.
Hope you're new ABX will help some. Take care of yourself & Happy New Year.
Jan
quote:
Originally posted by chainsaw joseph:
I will refresh your memory,I made the chair in the back of dr Ls.I stopped minno because I have started seeing another doctor for IV in the future and to be covered by insurance.I have nothing bad to say about dr L,I like him very much.I saw him for about a year and a half and he had treated me with,mino,zith and mepron,cipro,rifampin,and I was going to start omnicef but ended up going to this new doc.Mino is just a crazy ride,you never know what to expect.
Thanks for that refreshing.
I need a lot of that lately.
My short term memory has gotten absolutely awful. To the point where it's embarassing sometimes.
I've seen Dr.L three times now. And I still have not seen your chair. I have totally forgotten about it.
I will try hard to look for the chair next time I see him.
I think Dr.L is onto something with his treatment.
I'm now on Mino+Plaquenil+Amoxy. Just started the Amoxy at 1.7g/day.
I'm supposed to slowly ramp up to the incredible amount of 17g/day (if my calculation is right.)
Is any of you taking these large doses? Just seem insane.
Frankly, I'm somewhat nerveous about this.
Btw, he thinks it's a good sign that many of my symptoms are getting worse. He also said that it could take up to a year, or more, or less, before I start seeing consistent improvement.
So that's why I asked why you dropped the Mino, since it apparantly takes a long time to improve on this abx (according to Dr.L)
Michael
quote:
Originally posted by cmichaelo:
I'm now on Mino+Plaquenil+Amoxy. Just started the Amoxy at 1.7g/day.I'm supposed to slowly ramp up to the incredible amount of 17g/day (if my calculation is right.)
odd, since bacteriostatic drugs, like mino, may interfere with the bactericidal action of penicillin.
i've read that it is usually advisable to avoid giving tetracycline class drugs in conjunction with penicillin drugs.
i would ask dr. L about this, and your phamacist.
i've heard of people superdosing with amoxy. but not usually as high as 17 gms, though its not completely unheard of.
it might be better to do IM bicillin shots as that has a higher serum level than penicillin po (oral). plus you won't have to worry about taking all those pills (20 per day at 875mg) and the gut rot they might cause.
interesting "soup" though.
a couple of years ago ZAP was very popular, which was zithro, amoxy and plaquenil. there was a lot of success with that combination and i'm suprised it is not used more often, at least from what i hear people are on.
Laura,
I believe Plaquenil reduces pain. I don't know if it is due to reducing inflammation or exactly what specific action it has that reduces the pain but I definitely can have that effect. I was on it for over a year and a half and while I was in a great deal of joint pain in the beginning, much of it went away while on plaquenil. However, once I stopped it all came back. I haven't gone back on the plaquenil to control the pain, instead I've been using supplements with some pretty good success. However, I know you're not on Plaquenil to control pain but to go after the infection but I just thought I'd comment on your observation.
Angie
Dr Trevor G Marshal says that Minocycline is the best antibiotic for lyme disease because of bacteria has different shapes in body fluids than it was known before.
If i understood it well Lyme bacteria has round sshape L-forms ,which contains many intracellular bacterias inside ,when they release , get in and lives in homeostasis in human defence cells called fagocythes.They wasn`t noticed by patologist for time ,missed, because they are very small.
Minocycline is for streptococcus bacteria so it works for it.
According to Dr Trevor Protocol Doxycycline is bad antibiotic for us because blocks other not things that should http://www.documentary-film.net/auditorium.html - seee the movie at this site ,i took this knowledge from wideo presentattion of the Marhall Protocol from this site.
quote:
Originally posted by zipzip:
odd, since bacteriostatic drugs, like mino, may interfere with the bactericidal action of penicillin.i've read that it is usually advisable to avoid giving tetracycline class drugs in conjunction with penicillin drugs.
I'll look around a bit to see if I can find the reference.
If you have it handy though, I'd be interested.
quote:
Originally posted by zipzip:
it might be better to do IM bicillin shots as that has a higher serum level than penicillin po (oral). plus you won't have to worry about taking all those pills (20 per day at 875mg) and the gut rot they might cause.
I hear you. Still, at this point, I'm more in favor of oral abx than IM or IV. That is as long as I can tolerate it. So I'll just have to see.
Michael
quote:
Originally posted by wrotek:
Did You read about Marshall Protocol?Dr Trevor G Marshal says that Minocycline is the best antibiotic for lyme disease because of bacteria has different shapes in body fluids than it was known before.
If i understood it well Lyme bacteria has round sshape L-forms ,which contains many intracellular bacterias inside ,when they release , get in and lives in homeostasis in human defence cells called fagocythes.They wasn`t noticed by patologist for time ,missed, because they are very small.
Minocycline is for streptococcus bacteria so it works for it.
According to Dr Trevor Protocol Doxycycline is bad antibiotic for us because blocks other not things that should http://www.documentary-film.net/auditorium.html - seee the movie at this site ,i took this knowledge from wideo presentattion of the Marhall Protocol from this site.
Yes is saw that [81 min!] presentation.
Super interesting, but it's a bit hard to understand unless you're an MD or well versed in all Lyme/medical lingo.
Did you happen to notice the interval with which he pulses the Mino?
Michael
borellia is usually in traditional spirochete form, and also can be in cyst form.
see dr.b's slide show : http://www.lymepa.org/html/dr__j__burrascano_may_3__2003_0.html
dr. marshall is on point on overproduction of cytokines and his use of benicar (angiotensen II blocker) to down regulate cytokine production and herxing is really interesting.
this use of benicar is very interesting as an immunomodulator, though i don't completely understand the pharmacokinetics of benicar as a cytokine down regulator, aka how it works.
anyhow, yes lyme can get into phagocytes, t cells b cells, etc. it immunocompromises the patient but this is not dependent on a theory of cell well deficiency.
unless you believe, like whittaker and mattman, that ALL borrelia is cell wall deficient, you probably won't get better on the Marhall protocol, in my opinion.
plus i still don't "buy" the vitamin D deficiency. this deficiently is not a universal truth for lyme patients by any means.
i think dr. marsahll's aproach is quite novel, and worth inspecting diligently, but hardly a panacea.
"I vaguely remember hearing about this too. But I also [again vaguely] remember that there was a catch to this observation; i.e., that either there were exceptions to this, or that the study was incomplete."
this is not from a study but is accepted knowledge in pharmacology. ask your pharmacist.
their may be exceptions indeed, dr. L knows better than we do I'm sure.
Are the people who have posted about having problems with this drug taking brand name or generic forms of the drug???
Thanks!
Angie
Although I have heard that the generic isn't as effective. I may try the name brand with my next script if its not too expensive, I have no insurance coverage.
I have noticed some muscle pain and weakness since I have been on Minocycline.
Sorry I can't help you further. Good Luck,
Lisi
If I were you, I'd opt for the brand name even if it does cost more money. I heard quite a bit about the differences between the brand and the generic a while back. Unfortunately, I did not save anything I read back then so can not refer back to that information. I know much of what I heard in the past was in relation to the generic being ineffective for MS patients in comparison to findings that the brand seemed to help these patients. Since I could not find exactly what I was looking for, I did find some references to the differences on some arthritis sites. Hope this is helpful.
Angie
FREQUENTLY ASKED QUESTIONS ABOUT ANTIBIOTIC THERAPY
http://www.okmicro.co.jp/Abt/faq_eng.html
11. I HAVE BEEN ON 100 MG. OF MINOCYCLINE MONDAY, WEDNESDAY AND FRIDAY FOR
SIX MONTHS AND HAVE SEEN NO RESPONSE. CAN I STILL EXPECT IMPROVEMENT?
Yes, however you should have some indication by this time that the
antibiotic is working for you. Your doctor needs to do a little detective
work at this point. Here are some things to check:...
**************************
b. If you are on a generic minocycline, change manufacturers or switch to
the brand name. Patients have discovered not all generic minocycline (or
doxycycline) is therapeutically equivalent. Many physicians prescribe the
brand name to avoid this risk.
****************************
***********************
The following pain management protocol of Stuart L. Weg, M.D. is presented as an adjunct therapy to the antibiotic protocol for inflammatory rheumatic diseases presented on this web page, particularly for patients with intractable pain.
http://www.rheumatic.org/weg.htm
****************
Editor's note: We have discovered ALL minocycline is not therapeutically equivalent. The only generic proven to work consistently is the one by Wyeth Ayerst (Lederle). We discovered this problem back in 1997, and a number of people in the support group reported they had 'lost' up to 2-1/2 years on this therapy because of being on an ineffective generic.
***********************
I'll only take name brand abx for now on.
Also, generic drug manufacturers only need to prove chemical equivalence, they don't have to test the drug on people to make sure that it works like the original manufacturer does.
quote:
Originally posted by twoangie:
3rd try...Are the people who have posted about having problems with this drug taking brand name or generic forms of the drug???
Thanks!
Angie
I'm on generic Mino. Have never tried brand name.
My LLMD is probably THE doctor who pushes Mino, and he orders the generic brand...FWIW.
I have not discussed brand vs generic with him though.
But I'll do so next time I talk to him.
Sorry for not responding to your inquiry earlier.
Michael
Mino is the one antibiotic that I credit my recovery of lyme to. While I don't think I will ever be completely cured of lyme, I have been off all meds since April of 2004 and doing well.
Mino is a hard hitting antibiotic and can be hard to take. It is the only thing I took that helped with my neuro symptoms..I was on it for about 18 months.
I also took Biaxin and Plaqunil while taking the mino..this trio did the job for me.
As for the pain in your back etc, I had that too. I was told that the spirochetes were hiding if you will, in these areas and that when the Mino targeted them, it caused the pain.
Not sure if I described that accurately or not, but I too had pain that migrated from different joints/muscles and I was told it was the Mino doing it's job.
Whatever it did, it worked, as I am doing so much better now.
Wishing you wellness!
~LymeBrat
How long did you have Lyme? If you don't miind me asking.
Lisi
I was diagnosed with lyme in June of 2001. but my LLMD believes that I have had it since my first tick bite/bullseye rash over 10 years ago...
Both my children have lyme and my LLMD and their LLMD, both think I may have passed it to them in utero.
But I have been on meds since June of 2001. And In April of 2004, I felt I was as good as I am ever going to get and took myself off all antibiotics.
I lost my gallbladder in 2003, possibly from antibiotics, so I figured I see how I did off the meds. So far so good.
I was hospitalized in June of 2004 for viral encephalitis, but other than that i have been feeling pretty healthy. I was even able to go back to work part time this fall.
And I plan on working this spring and fall 2 or 3 days a week as well. I'm not 100%, but I'll take what I can.
3 years ago, I could barley walk, I couldn't use my right hand, and I spent my days on pain killers...
Compared to that...my life is pretty darn good now!
best wishes!
~LymeBrat
quote:
Originally posted by lymebrat:
Mino is the one antibiotic that I credit my recovery of lyme to. While I don't think I will ever be completely cured of lyme, I have been off all meds since April of 2004 and doing well.Mino is a hard hitting antibiotic and can be hard to take. It is the only thing I took that helped with my neuro symptoms..I was on it for about 18 months.
I also took Biaxin and Plaqunil while taking the mino..this trio did the job for me.
As for the pain in your back etc, I had that too. I was told that the spirochetes were hiding if you will, in these areas and that when the Mino targeted them, it caused the pain.
Not sure if I described that accurately or not, but I too had pain that migrated from different joints/muscles and I was told it was the Mino doing it's job.
Whatever it did, it worked, as I am doing so much better now.
~LymeBrat
Wow! That is great news. So glad it worked for you.
Is there any way you can share your progress in symptoms, ability to function, dosage, etc, over the course of the 18 months.
You can email me off the list if you like.
OK, so I didn't see your second posting.
That answers some of this. But I'm still interested in how you progressed during the 18 months on Mino.
Which abx do you suspect caused the loss of your gallbladder?
Michael
[This message has been edited by cmichaelo (edited 05 January 2005).]
quote:
Originally posted by zipzip:
odd, since bacteriostatic drugs, like mino, may interfere with the bactericidal action of penicillin.i've read that it is usually advisable to avoid giving tetracycline class drugs in conjunction with penicillin drugs.
zip,
I have not spoken to my LLMD yet.
But something occured to me about the dosage differences between Mino and Amox:
Mino = 0.1g/day
Amox = 17g/day
=> Amox:Mino ratio of 170:1
So even if tetracycline type abx like Mino interferes with the cidal action of penecillin type abx like Amox, there is so much more Amox than Mino that the Mino just might have an insignificant effect on the cidal action of Amox.
Just a theory. I'm not a doctor.
There are however at least two mechanisms that may reduce the Amox:Mino ratio once it enters the body:
1. Since the penetration of Amox through the BBB is not as good as Mino, the Amox:Mino ratio in the CSF will be lower.
2. Amox may not be as effectively absorbed into the blood stream as Mino due to the large doses that have to be absorbed in the digestive system.
So, most likely the effective Amox:Mino ratio will be lower than 170:1, especially in the CSF.
Michael
[This message has been edited by cmichaelo (edited 05 January 2005).]