stopping mino.. not risking this
Ok, its been 3 days on minoi and I am stopping abxi.
I took 100mg on day 1, no effect other than slight dizziness.
I took 100mg yesterday and I've had a lingering headache for 24hours. I have malaise and slight pressure in my head, also from 24 hours ago. I read that tetracyclines can cause pseudotumor cerebri - on going intracranial head pressure with headaches and visual disturbances. I dont think i am willing to risk it.
I have a friend with this and his life is in tatters b/c he cant work, or even live life.
Can one continue with the protocol wthout doxyi/mino? I didnt experience any other reactions.
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Started Vanderbilt protocol 1/9/08 Rifampin twice a day, azithromycin MWF, Tindamax for 7 days out of a month at 250 mg three times a day, b12 injection monthly NACi daily, DHA, calcium pyruvate, prilosec, low dose naltrexone 4.5 mg
Honey..it's alittle too soon to throw in the towel. Aren't you taking any moppers (like charcoal) or anti-inflammatories? My first couple of months on abxi were rough but eventually the symptoms lessened. <big hug> You're going to need to tough it out for your sake.
No criticism, just support
M.S., Dxi 1/2006, CAPi 6/2010. Currently: 200 mg Doxyi, 1 g Amoxi, 250 mg Azithro (MWF), 1 g Tinii (5 d pulse), 2400 mg NACi, 3.5 mg LDNi, 10 g Vit D, 800 mg Vit E, 1 g Vit C, 400 mg ALA, 800 mg ALC, 1 g EPO, 30,000 mcg B-12
When Sarah began doxycycline the reactions were most unpleasant; she became delirious. Nonetheless we stuck with it. After her delirium was over - it lasted eight or ten days - she was clearer in her mind than she had been for years.
The tetracyclines are usually described as bacteriostatic. However, with chlamydiae they may kill the organisms, if indirectly. Chlamydiae reticular bodies, in their endosomes within host cells, must produce filaments of actin which propel them away from lysosomes. Tetracyclines prevent them from producing actin, and their endosomes fuse with lysosomes. The lysosomes destroy the chlamydiae: bacterial endotoxini is detected, and alarm-bells are rung. A range of cytokinesi goes into action, notably TNF-alpha, produced by activated macrophages. This stimulates the acute-phase reaction.
It is no surprise that bacterial die-off causes unpleasant effects. This acute phase can be damped with short-term steroids.
Myra,
I was prescribed Doxyi 100mg twice daily instead on Minoi, but had all the same symptoms are you experiencing for the first 2 weeks. The fatigue was really bad at first, but better now. The dizziness seems to come and go now and the visual disturbances have subsided. When I reported these symptoms to my doc, she wanted to drop the dose to 50 mg and build up slower. I convinced her to let me have a little more time and see if the symptoms got better and they did. She mentioned to me that she had a number of patients who were not able to tolerate Mino, but did fine with Doxy. You might ask your doc about it.
What ever you decide, please know that we are all here for you.
MarianneMisdiagnosed with RRMSi 2010. Dxi CPni and multiple viral infectionsi in 2011. Dx Autonomic Dysfunction 2012. Did Wheldon protocol for six months 2011. Currently taking Valcyte, Famvir, Equalibrant and supplementsi.
hey all !
thanks for your replies.
I'm not worried about the reactions i am getting from the minoi, it's a good thing. I am worried at the potential risk of developing BIH (benign intracranial hypertensioni). It is characterised by headaches, head pressure and vision disturbances and without proper treatement may result in vision loss.
Ive read that mino has been associated with most cases of BIH. Even though I am tolerating it quite well.. you've convinced me to retry. I will change to doxyi to reduce my chance of this adverse effect.
Jen_obrien - I cant seem to find charcoal anywhere. Is there a specific brand that sells it. iherb might have some.
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
I stopped minoi within the first 2 weeks as well. It really scared me, I can't remember whether I had headaches but I was so dizzy and disorientated. I also developed really frothy urine which made me worry that my kidneys were being damaged. You can't ignore these things.
I had my kidney and liver function tested, all was fine. I decided I wanted to try doxyi instead of mino and spoke to the doctor about it but he convinced me to reduce the dose of mino and build it up slowly. That worked for me. I now take 200mg all at once with my breakfast, and am having no side-effects.
I understand entirely you wanting to give up. Particularly as you are not greatly effected by your MSi. I think if I had had your level of wellbeing before I started, I would possibly not have started or given up very early on. But I also had a negative test to cpni. Did you test positive to cpn?
This is a hard decision for you. A lot of the people on here are so ill that they really have little choice but to give this a go. I'm somewhere in the middle, not physically disabled but fatigue, brain fog and pain have increased slowly over the years, to the point where I can no longer work. And in the past year or so I feel my MS has changed, I want to catch it before I am any more incapacitated.
Ring Dr T, he is fine with consulting over the phone. You might be better off trying doxy.
Let us know how you go, we're all here for you.
RRMSi diagnosed 1996. Many years of weird symptoms before this. Started CAPi around 6/11? Minoi 200mg daily, Roxyi 300mg daily, Tinii pulses started 11/11 (very tentatively!) Major problems with headaches 01/12, substitued mino with doxyi.&l
I think I would rather doxyi. I ceased minoi on friday (12pm lunch) and now it's sunday 10pm and I have the same headache for over 48hours. I felt slightly disoriented and as though I was living in an animated world - not normal I dont think.
Norman - thanks for that. I just looked that up. I am scared as mino has been associated with BIH at a much higher rate than doxy. I'd much prefer a longer term treatment on doxy, than a shorter treatment on mino. My gut instinct is telling me to run for the hills on mino. It's also made my muscles cramp up in my neck and shoulders. I just read that only 70% of cases can be treated... my friend falls into the 25% that progress into severe disability with a brain to perotoneal shunt that needs to be changed by a neurosurgeon every few years.
sugar - I will ring Dr. T tomorrow and get him to send out a doxy script - or I can just pick one up from the GP on tuesday (he's aware and approves this treatment). I did test negative to CPni, however Dr T said the tests arent too fantastic anyway and to go by NACi reaction - which was significant even though I can tolerate 1800mg these days. I have minimal disability (only when my veins stenose) however, I have developed a continuous muscle twitch in my right foot that is pestering me - which is why I need to change asap.
Thank you to EVERYONE that posted. You have no idea how much you have helped me. I look forward in continuing this on doxy & roxi this week. I am actually in tears. I cant believe how fearful I am of this. THank you all again x you're all angels
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
Myrapee – best of luck with getting doxyi. I hope it all works out well for you. I’m not entirely sure what other abxi you are taking at the moment, but I just wanted to say that I wouldn’t be inclined to start doxy and roxi all in one go. I’m taking doxy and have had many months of all the symptoms you mention – it took me over a month of taking 100mg doxy before I was able to introduce roxi and another couple of months before I was able to increase the doxy to 200mg. Take things steady. It’s so much worthwhile.
As Sugarglider says, I understand completely why you would want to give up, especially if you’re not greatly affected by your symptoms. I’d reached the point where things were so bad that I had little choice but to give this a go. You’re so lucky to have this opportunity before things get too bad. Hoping it all works out for you.
Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) doxyi(05/11) roxi(06/11) tinii pulses(12/11-03/12, 10/12-01/13), amoxi(02/13)
Myrapee I can just tell you I am very sorry that WP wasn't 30 years ago. I believe now I wouldn't be disabled. My walking is really very bad now and my reactions to abxi were the same as you describe but much more intense. When they came I could just sit and couldn't move. You made a good decission to restart the protocol. The soonest you start the better chance there is you are ok.
MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi
Myrapee, I’m sure that Dr T will change your prescription once you tell him your responses! Minocycline might just have the edge both neurologically and bacterialogically, but when you are taking the antibiotic for a long period, you need to feel happier with it. David won’t prescribe minocycline because of its side effects....................... Sarah
A Journey through Light and Shadow
About charcoal......I use to order it from puritans pride. Charcoal (Activated) 260 mg capsules. I don't take it anymore, but as I recall it was roughly 6 to 8 capsules a day. Since it can absorb the abxi and supplementsi, you should take it 2 hrs after/before any of those items.
If anyone wants to correct me, feel free. Like I said I haven't taken charcoal in awhile.
M.S., Dxi 1/2006, CAPi 6/2010. Currently: 200 mg Doxyi, 1 g Amoxi, 250 mg Azithro (MWF), 1 g Tinii (5 d pulse), 2400 mg NACi, 3.5 mg LDNi, 10 g Vit D, 800 mg Vit E, 1 g Vit C, 400 mg ALA, 800 mg ALC, 1 g EPO, 30,000 mcg B-12
boadicea - I havent commenced roxi yet, I will be leaving that until doxyi is tolerated. My GP is happy to prescribe it for the long term so all I need to do is give him the go ahead. I am aware that I, like you, will probably have months of reactions - but it's part of it. I have started feeling a constant muscle twitch under my foot day and night, which coincides with my veins narrowing - CPni is the permanent solution, CCSVI liberation is the temporary.
evita - I am sorry to hear of your disability. Are you feeling better? Has the protocol helped you? Are you on doxy/roxi too? All I really want out of this is to stop experiencing chronic fatigue and brain fog. As long as I can think straight - I am happy.
Sarah - I corresponded with Dr. T today and he's happy to change my treatment to doxy. Told him of the extreme head pressure. the 'vice grip' like pain and the headache that ameliorated after 72 hours and endone. He's sure it's due to minoi's lipophilic properties tha allow it to penetrate the brain more effectively but should be avoided.
Jen - Thanks :) I'm about to buy some. I think it'll help if the cr*p is all mopped up instead of making me feel so unwell.
Also, I informed my boss of this new treatment and it's possible initial side effects (as I missed work due to mino). He's all for it! He wants me to do what needs to be done with his support. Apparently I have put work before my health and he is going to force a positive change in the work place. :)
Thank you all x
In 1 year I want to be like you - be able to understand this treatment enough to help newbie treatment starters :)
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
Congrats on the good news at work.
M.S., Dxi 1/2006, CAPi 6/2010. Currently: 200 mg Doxyi, 1 g Amoxi, 250 mg Azithro (MWF), 1 g Tinii (5 d pulse), 2400 mg NACi, 3.5 mg LDNi, 10 g Vit D, 800 mg Vit E, 1 g Vit C, 400 mg ALA, 800 mg ALC, 1 g EPO, 30,000 mcg B-12
I often told my crew at work 'you may love this job, but this job doesn't love you back - you have to take care of YOU'.
So, bravo to your boss!
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Ok, 50mg doxyi has been commenced with blistering headaches at full force, one nose running like a tap with the other completely stuffed closed (like a cold) and malaise parade encircling my body.
Just to clarify, the headache is part of the endotoxini reaction correct? Other than that, I am absolutely fine. I just notice that the headache starts about 2 hours after taking doxy, and gradually increases in pain for the next 4 hours.. then its bed time ha!
xx be well
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
Any chance you could time the doxyi so you're asleep by the time the headache starts?
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
It might be worth a try, but wouldn’t a headache wake you up? Maybe it wouldn’t, because when I got a stinking pain in my previously paralysed right arm, it conveniently went away shortly after I went to bed and restarted shortly after I got up. It carried on for about a fortnight and was definitely part of the recovery process. I might not have thought so at the time!..................... Sarah
A Journey through Light and Shadow
It seems as though the headache is still slightly present upon waking up, not as bad as minoi though, however it is now 15 hours after headache began.
sarah - your story is inspiring me to keep going!!
Thinking of commencing lymphatic drainage massages and reflexology.
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month