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Hello Everyone,
Vinny sent me a PM asking about my diagnosis and treatment. Vinny must have mined the old posts because it has literally been years since I visited the bulletin board. Clearly time that I checked back in. I am a huge believer that most if not all of these so-called autoimmune diseases are microbial and I have a message, and that is that Minocycline works.
My story should be somewhere on this web site but I will recap it here. I had an explosive onset of rheumatoid arthritis in June 2002 and I started antibiotics per the Brown protocol in February 2004. My RA seemed to become unstable with abx, some good days and bad days and good weeks and bad weeks, but after about 8 months of Doxy I was seeing subtle but unmistakable improvement. (I recall walking a few hundred yards with 6 plastic grocery bags full of heavy items, and wondering to myself just when I began doing that again. It would have been insufferably painful before AP.) After about 15 months of AP I was guardedly speaking of possible remission. I wasn’t in remission yet, but vastly improved. Minocycline works!
In 2005 I switched to the Marshall Protocol and after about a year my rheumatoid arthritis essentially vanished. I continued with the Marshall Protocol to clear other symptoms, especially cognitive and emotional issues and while these took much longer to clear, and by about 2010 I felt secure enough in my recovery to stop all the AP/MP meds, for about 4 years now. Since then I have been concentrating on my career and family. I am still free of any signs of arthritis. I’m 59yo, run vigorously on a treadmill 2 or 3 times each week and generally enjoy great health.
My health isn’t 100% perfect. About a year ago I woke in the AM partially blind in my right eye. Dx was Anterior Ischemic Optic Neuropathy and it is rare, strange, idiopathic and permanent. I mention it because idiopathic and strange makes me wonder if it is also microbial. If so I may have some lingering microbes and I may resume treatment to see if I can elicit more herxing, sort of trying to wring the last water from the wash cloth. Aside from that eye, which doesn’t hurt, my health is pretty good. Thank you Dr. Brown.
So checking in to encourage. While I participated on this forum it was my experience that it took about a year for my friends here to get significant improvement, maybe just a few months more for the ladies but generally about a year.
Take courage.
John McDonald
CaliforniaJohn,
Thanks for checking in with the RBF! Your words will be encouraging for many people…I find it interesting about your vision loss. I, too, woke up one morning with a partial loss of vision in my left eye. It was misdiagnosed originally (by an opthamologist) as a vitreous detachment. A local optometrist finally sent me for further testing where the loss was documented. Then on to a neuro/opthamologist. No definitive diagnosis was made. My feeling is that it is connected to infection/inflammation. Maybe some more treatment would help you. My vision is somewhat better in that I can see light through some of the “blind” area.
Your words are so important for others. It takes time and patience with AP or MP. We all would love to be well quickly but it is a journey of patience and persistance.
Mary@mary77 wrote:
John,
I find it interesting about your vision loss. I, too, woke up one morning with a partial loss of vision in my left eye. It was misdiagnosed originally (by an opthamologist) as a vitreous detachment. A local optometrist finally sent me for further testing where the loss was documented. Then on to a neuro/opthamologist. No definitive diagnosis was made. My feeling is that it is connected to infection/inflammation. Maybe some more treatment would help you. My vision is somewhat better in that I can see light through some of the “blind” area.
I have not heard of any such side effect so far, but in doing a search found a big law firm handling a class action lawsuit for vision issues tied to Minocin. I guess there must be more than one or two individuals that has had it, otherwise it would not have escalated to this level. ❓
Nice to see you John and glad to hear you are doing so well. Not so good about the vision. Let us know what transpires if you decide to resume treatment as a ‘therapeutic probe’ for this (with doc’s approval of course) 😀 😀
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)@JohnnyMax wrote:
@mary77 wrote:
John,
I find it interesting about your vision loss. I, too, woke up one morning with a partial loss of vision in my left eye. It was misdiagnosed originally (by an opthamologist) as a vitreous detachment. A local optometrist finally sent me for further testing where the loss was documented. Then on to a neuro/opthamologist. No definitive diagnosis was made. My feeling is that it is connected to infection/inflammation. Maybe some more treatment would help you. My vision is somewhat better in that I can see light through some of the “blind” area.
I have not heard of any such side effect so far, but in doing a search found a big law firm handling a class action lawsuit for vision issues tied to Minocin. I guess there must be more than one or two individuals that has had it, otherwise it would not have escalated to this level. ❓
If you type in “Ocular side effects of systemic drugs” you will find a whole long list of medications that can rarely effect the eyes, even Aspirin.
@lemons wrote:
If you type in “Ocular side effects of systemic drugs” you will find a whole long list of medications that can rarely effect the eyes, even Aspirin.
There are literally tons of meds that cause eye issues, from simple blurring to extremes like cataracts and glaucoma with long term use. In the prescribing information, these side effects are noted, and an informed person will know the downsides in advance and then make the decision to take it or not. Apparently the issue of this form of blindness is an extreme, and the manufacturers do not disclose it in the prescribing information, whether it is due to ignorance or not. I pulled up a list of non eye friendly meds, but Minocin is not listed as of yet, though some other antibiotics are.
http://www.worstpills.org/public/page.cfm?op_id=84
My point is, the reaction both these people had is far beyond a common / nuisance side effect or acceptable. Perhaps these individuals should look into the legal action that is being proposed, there may be a correlation between the two.
John
John,
Thanks for posting the information about minocin and vision loss. I have never given thought to the vision loss being tied to minocin! I was aware of intracranial hypertension as a side effect, though I didn’t connect it to the partial vision loss. I did not have headaches while on minocin. I AM surprised the neuro-opthamologist didn’t discuss the possibility of vision loss and minocin!I might give the law firm a call to find out how often people are affected by this issue. I don’t know how they would prove my vision loss was actually minocin related. I do find it very interesting and thank you for sharing your information with us.
MaryAnterior Ischemic Optic neuropathy is rare but more common in people with rheumatoid arthritis. Minocin can increase the risk of Pseudotumor cerebri along with many other drugs including steroids. Iron deficiency can also be a factor.
Hi –sorry for the cold water but a lawsuit ??????????????? —Was it minocin the brand taken or minocycline the generic –who was the maker of the generic –was it a foreign maker ?? –This is a big stretch –
richieHello John McDonald –good to hear from you —sorry about your eye but you are too tough to let it get you down !!!!!!!!!!!!!!!!!!!!
richiehaven’t been here for awhile, was doing real well, had to get off LDN, caused insomnia which is odd since it actually should help you to sleep. Since I had been on minocyclin and clindy for a period of time I started to lose ground so yesterday I asked Dr. K. to change my meds and she is putting me on Doxy for the next three months, twice daily.
I am still stay very busy with traveling, singing in the German choir, knitting, canning and lots of other activities.
Interesting about the eye issue. Went to see a new eye doctor and he told me that the dermatomyositis is also on my eyelids and he made me purchase some eyelid wipes and eye drops, it helps and stops some of the blurred vision. He told me that the dermatomyositis was scratching my cornea.
I have a hard time getting my msg from Road back. I have to go to one of my old msgs to come back to the site 💡
EvaEva Holloway
Hi Eva,
@Eva Holloway wrote:haven’t been here for awhile, was doing real well, had to get off LDN, caused insomnia which is odd since it actually should help you to sleep.
LDN does not need to be taken at bedtime.
See:
LDN Dose Timing
Time of day dosing for LDNBased on my research, it appears that bedtime dosing of LDN has never been more than a suggestion, and is not a requirement. The idea behind bedtime dosing is to try to avoid any potential discomfort that might occur as a result of the temporary blockade of opioid receptors by naltrexone.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI have a hard time getting my msg from Road back. I have to go to one of my old msgs to come back to the site
Hi Eva – if you mean alerts, they only come through when you have posted in a thread and someone else has answered or if you tick the box to say you are watching a particular thread.
To get back to the site without going to an old post just put https://www.roadback.org/forum into your browser. And check the box that says to log you on automatically when you return to the site. That way, you will not have to sign in each time (except when you are accessing from a remote computer e.g. when you travel).
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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