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Hello everyone,
I just wanted to let you know that in the last month I have finally been feeling amazingly better! And, I know that this is not a coincidence, because there is NO WAY that I could ever feel this much improved unless it is due to the mino! Over the last month my morning stiffness has gone from about 2 hours to about 15 minutes and my energy has definitely returned. And, I have been off my Enbrel completely, for at least two months!
I wanted to tell you all that dosage definitely matters too, as I found out the hard way. The new doc that I have been seeing isn't well versed in mino therapy and decided I should just go up to 200 mg mino everyday, just like that. Well, the consequences were terrible! I ended up feeling so weird, that I thought that there was something seriously wrong with me. I had a horrendous panic attack with teeth chattering and shaking for hours. Luckily, I decided to go see my family doctor's nurse practitioner, and she decided that it was just too much of an increase way too fast! I know, I should have known this, and I did in the back of my mind, but I thought what the heck, since I was getting desperate to feel better! Well, the outcome is that I have been on 100 mg everyday for a month and I swear that I feel amazingly better. For the first time, I actually feel optimistic that this may work out! I am trying to remain guardedly excited, but it's hard! Unfortunately, my incredible family doc and her nurse practitioner are closing their practice. I am so disappointed. I think that I have found a new doctor that looks good, but I have yet to see her or her partner. Their website looks promising with a similar philosophy to my old family doctor. I am hoping and praying that she or her partner will be as open minded and helpful!
I am still seeing the guy that had me try the 200 mg of mino, but I don't know if there is anything more that he can do for me. I did a whole round of food allergy testing and came up allergic to so many more things-even rice! I finally decided that I would just eat whatever I wanted. The result was very bad! In the end, I have come to the same conclusion that I did years ago: wheat and dairy do not agree with me for whatever the reason! Dairy definitely causes me to have severe flares of my RA. My ribs hurt so bad I couldn't take a deep breath after 2 days of delicious fettuccine alfredo and mizithra cheese. So, I really don't know what to make of the allergy test results. I was tested for both IgG and IgE. The only positives were the IgG delayed onset type of food allergies. Also, the leaky gut test that I did was negative. Doctor M said that he was very confused! The one good result that I got was that I found out that I am vitamin D deficient, and so I am taking 5000 mg of this a day to remedy that.
Currently, I am taking 100 mg mino daily, MSM, vegetarian glucosamine, fish oil, vitamin D, probiotics!, and type 2 cartilage ( has anyone had any luck/heard of this?)
I just wanted to post what has happened with my particular experiences in case I could help anyone else like me that has RA, and has had it for a long time. Honestly, I wasn't too hopeful that this would work, but it really seems to be. It did take almost 8 months for me to feel a significant difference though.
jeni
Jeni – I read your post and I can't believe it!!! The same thing happened to me on 200 mg of minocycline a day back in February. I took this dosage for 3 days and on the third day I woke up in the middle of the night with teeth chattering, muscles shaking and spasming and ended up in the emergency room!! They did an MRI of my head and neck that was normal except for some arthritis in my neck. I made them do it because I thought I had a terrible neurologic disease!! I stopped all my meds at that point (I was also on reflux meds) and in the next 2 weeks I finally went back to normal but still had some twitching muscles. I even went to a neurologist and he said everything looked normal as far as my neurologic exam, so it had to be from the minocycline.
I now take 50 mg a day and am going to try to go up to 100 mg a day soon. Your experience confirms to me that this weird episode was caused by the mino.
Glad to hear you are doing so well – I am still waiting to get better but have only been on the mino for a little over 2 months. I do feel some improvement in the swelling of my hands and my energy seems better and I have less brain fog.
ReesaK
Hi ReesaK,
Don't give up! It took me a long time to figure out the dosage that I needed, especially since I haven't found a good doctor here to help me. I noticed a small improvement at first, too. It took trial and error before I found the correct dose. Just go up slowly.
good luck!
jeni
Congrats Jeni! Are you taking 100mg daily or MWF. The signature line says 3x a week. I take 200mg MWF. I seem to really flare on Mon and Tues…..not sure if this is due to not taking it sat or sun (ya know two days off). I am wondering if I should just take it everyday but only do 100mg. By Wednesdays I am not as stiff. So Wed-Sun I feel pretty good! I did just go off pred which I had been taking for the past year. Went off it June 8 so ….dont know if this is just withdrwl symptoms or what…..plus two surguries so the stress of that alone.
Hello Jeni,
I noticed you had Washington on your email address. Where in Washington do you live. I live in Olympia Washington and am interested in doctors that you have found.
thanks,
ajohnsonHi Carrie,
Yes, I forgot to change my signature line. I am taking 100 mg everyday. I have to tell you that I was taking 200 mg M,W, and F only, but when I switched to 100 mg everyday, I saw a huge improvement! Maz said something about how they often treat people with daily mino while they are weaning off of drugs. I was getting so desperate that it was honestly my last hope…. I couldn't handle feeling so awful anymore and I was soooo very tempted to start on my Enbrel again. I have some morning stiffness still, but it is really not too bad at all, and once I start moving around I am great. I'm going hiking tomorrow for the first time in a long time! Despite the minor stiffness in the morning, I definitely have more energy!
I need to do some more research into the dosage though, because my impression is that the pulsing technique is best. I need to find out when I should try that again.
Take care,
jeni
Hi,
I live in Issaquah, but unfortunately I am losing the doctor that prescribed the mino! She is closing her practice to work at the VA hospital in Bellevue. I am so disappointed. I did find a new family medical practice nearby that looks promising, but I haven't been to them yet.
Currently, I am seeing a functional medical specialist in Bellevue. He would probably let you try the minocycline, but he doesn't have any personal experience with it. He just tested me for food allergies and some other things. He is pretty expensive for me since my insurance doesn't count him as in network. If you want his name and number let me know and I will email it to you.
jeni
Jeni, so great to hear you've turned that corner and that you are now doing so well! 😀 So happy for you!!! What a shame to be losing your doc…really hope the new doc you've found works out for you.
Peace, Maz
Hi! I wanted to try your approach Jen. I seem to notice I feel better on the days I take mino…then mon/tues not so good I think from not taking it sat and sun…so I decided to try your approach and switched over to 100mg daily instead of the pulse I was doing MWF 200mg. ….I have a question though….why is it better to do the pulse vs. daily. If I take pulse its 600mg total a week and I instead take 100mg for 6 days …it would be the same mg dosage a week…..so would that really be a bad thing since its still 600mg total anyways…but instead of 3 days I spread it out to 6 days???? I think this daily thing is really working for me…I know I have only done it for a few days but I feel good!
Maz please chime in too!!!:)
Hi ! wanted you to know my morning stiffness has gone , im feeling so much better! I have taken tetracyklin for about 1 month soon.. i take 250 mg x 2 each MWF, dont know when im going to raise the dose? do I really need to do that? im going to reduce my pred sloooowly, I hope it will go well!
:D:D
I wonder, is it any “BACKSIDE” to eat antibiotics, can we get immune to it in the future?? what are the backsides
[user=1508]carries[/user] wrote:
Hi! I wanted to try your approach Jen. I seem to notice I feel better on the days I take mino…then mon/tues not so good I think from not taking it sat and sun…so I decided to try your approach and switched over to 100mg daily instead of the pulse I was doing MWF 200mg. ….I have a question though….why is it better to do the pulse vs. daily. If I take pulse its 600mg total a week and I instead take 100mg for 6 days …it would be the same mg dosage a week…..so would that really be a bad thing since its still 600mg total anyways…but instead of 3 days I spread it out to 6 days???? I think this daily thing is really working for me…I know I have only done it for a few days but I feel good!
Maz please chime in too!!!:)
Hey Carrie,
Maz is out of town, but here is a good link that explains the rationale behind various dosing methods.
http://www.rheumatic.org/faq.htm
Take care…..kim
Carrie – there is no one regime that suits everyone and glad that you are finding the change good. Some people feel better on pulse dosing, some on daily. There is some thought that daily dosing has more immunosuppressive effects than pulse dosing and that pulse dosing is all that is required for attacking mycoplasma because of their slow replication properties. There is no one school of thought about this. What IS agreed, however, is that one size doesnt fit all and that regimes need to be tailored to suit the individual. Another thing to consider is that daily dosing may be providing anti-inflammatory effects for you. Lynnie
“(tetracycline) has been known since the 1950's to block the release of the inflammatory and destructive lysozomal enzymes (collagenase) from the immunologically activated white cells” (H.W. Clark, Why Arthrtitis? pp 106)
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)[user=2526]zoofie_85[/user] wrote:
Hi ! wanted you to know my morning stiffness has gone , im feeling so much better! I have taken tetracyklin for about 1 month soon.. i take 250 mg x 2 each MWF, dont know when im going to raise the dose? do I really need to do that? im going to reduce my pred sloooowly, I hope it will go well!
Hi Zoofie,
That is good news. 😀
Your dose seems normal. It is consistent with the AP as used by Dr. Brown.
[user=2526]zoofie_85[/user] wrote:
I wonder, is it any “BACKSIDE” to eat antibiotics, can we get immune to it in the future?? what are the backsides
All medications have downsides (risks). However, most reasonable people think that the risks associated with taking the antibiotics used in the AP are more acceptable than the risks associated with the alternatives, especially when steps are taken to mitigate some of the risks (like taking probiotics).
Can you become immune to antibiotics? No, you can't, but it's possible for microbes to become resistant. If that happens, then the doctor would try a different antibiotic.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein[user=2526]zoofie_85[/user] wrote:
I wonder, is it any “BACKSIDE” to eat antibiotics, can we get immune to it in the future?? what are the backsides
According to Dr Brown, the tetracyclines are not like other antibiotics. When a pathogen/germ develops an immunity to an antibiotic, it is on the outer surface. The tetracyclines attack the germ's inner core – and therefore no immune strain of the pathogen/germ develops as a result of its use. (The New Arthritis Breakthrough pp260).
Additionally, the use of antibiotics in a pulsed regime (such as MWF) helps to prevent resistance developing. And, when other antibiotics are used (other than the tetras), they are usually used in combination, again helping prevent any resistance developing. Lynnie
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)
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