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hi lynnie, i will certainly email the karl mcmanus foundation. i was trying to post the info maz sent me about using mino with conventional meds for dianaw13, but could not put the info with the reply to her and it has ended up on this separate post . i am not sure how to do so ? kind regards ..di.
Di – you can simply put the link to the post in an answer by highlighting the info in the address bar at the top of the page. Or you can highlight the text you want and press ctrl+C keys (which will copy it) then paste (Ctrl + V) into another post. You can then highlight the text and click on the quote button – 4 from left at top of the text box.
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)Diane most of us would have a pretty strong reaction to commencing with 100mg. dose although you say you have been on them a while. That is why this treatment is so tricky and so many give up. Docs’ who are not used to Dr. Browns routine, prescribe normal doses to patients who are so sensitive, when ill, they have a shocking reaction and invariably give up on the treatment altogether, not understanding the herxheimer effect. it is best to ask doctor if you could start very slowly as that is what most people do to give your body time to adjust and you also to work out how much you need and when you need to increase it. Even with the Mino. Did you try low dose with that? I would have been in agony on 100mg. I am concerned you are on what sounds like a generic doxy. Have just come off one and believe me I did not realise the problems I was getting were associated to the brand. I have just gone back onto the minomycin and very pleased i did when some very frightening symptoms disappeared about an hour after the last doxy and complete day on minomycin. It sounds to me like the doxy generics may be as bad as the mino generics. There is even mention of it on the rheumatic org. site. where patients wasted 2 1/2 yrs on generic brands. Pharmacies tell you they are all the same but i am sorry they aren’t, and though they seem to work I gradually deteriorated over the weeks on it without realising what it was that was doing it. I am aware it is hard to get the real thing in some countries.
Thing is you always get worse before you get better, so if the dose is low its not so hard to take, and the liver copes better also which helps Dr. to cope when they are not used to this treatment. Have you tried Zithromax,( Azithromycin,) just 250 every 10 days just until you sort it out. I know patients who have had to count the grains in the pelleted form because of the side effects.sounds like you are struggling with a Dr. who understands the treatment. Have you printed out material for them and taken the books in to varify the benefits of this treatment for you? This helps enormously.Rosemary/Di – my doc beklieves that Doxylin is absolutely fine her in terms of equivalency and efficacy to the brand (Vibramycin here). In fact that is what she rx’s.
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)hi rosemary, thank you for your thoughtful reply, very much appreciated . none of the doctors will even consider looking at any literature , and will refuse to see me .i was only on the doxylin for 1 week. have been off it for 2weeks and just starting to get over the reaction. i am waiting for results from another lab at the moment, it has been 2weeks since i had the test so shouldnt be too long now. ..lynnie thank you to , i thought that was the case, i think i asked you about some time ago? ..kind regards to you both..di.
Lyn I know she is pretty well qualified but it was not fine for me I can assure you, and obviously not fine for Diane.I am not sure why. I was gradually deteriorating in the short time I had been on it and immediately I stopped and took the full dose of the minomycin, morning and afternoon, which I hate taking, I got over the problems which were frightening. I felt so sure about it I emailed the friend who told me about it. I just do not want anyone to have this happen and not know about it.
We are not all the same. If you are tested for it and its ok that is fine but so many patients do not have the finances to go through that process, so it is best to be on the safe side unless you can have it checked. The lower dose 50mg. or less even, whatever you can tolerate, even cut the 50mg. in half, for 3 months it was suggested by a prominent member years ago Diane, and as Lyn suggested maybe only twice a week, before you increase when you have a strong reaction. I found that information pretty spot on, in the beginning, and as you improve the time can be less on increase. I deteriorated as soon as i stopped them, could not even go a day in between back then. Its so hard for you when you cannot change docs and they are worried about giving you the treatment, so always best to keep it as low as you can so the Doc can cope as well. Pretty shocking they won’t even read the material. I don’t think mine does either, all the info I take him but he does glance at it and accepts that there is obviously proof that it works. do hope you find something Diane that at least gets you started. Kind regards
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