OK to start with just Mino?

I'm brand new to this. Was DX with MS last July, reacted very badly to inteferons. In 6 months went from having a senior level research job to being unable to work because of memory loss, lack of concentration, typing different words than I meant to type and speaking different words than I meant to speak. 

 After scouring PubMed for SOMETHING, ANYTHING that might help me with my mental clarity and fatigue.  

I convinced my family physician to prescribe mino for me. Then I started looking more into Mino on places like thisisms.com and found out about this possible Cpn link.

 

Here is where it got interesting to me.  My symptoms started back in 1999 a few months after I had pneumonia. I had put the pneumonia behind me, but could not explain why I would have suddenly become so fatigued, and started having trouble concentrating. I distinctly remember a day in the summer when I had my first episode of heat intolerance. Well, this started dr. visits, an initial DX of narcolepsy, then a DX or idiopathic hypersomnia, then a DX of depression. I was doing ok. Yes, I needed 10 hours of sleep every night, plus caffine, plus a daily stimulant to function. but I was doing ok. 

 Spring of 2009 I started taking Mino for some mid-life acne that sprung up. Took mino for 3 months. After being off for about 2 months I suddenly went blind in my right eye, prompting an MRI that showed about 5 old lesions and one active one. That's when I was DX with MS.  

 

So when I read about CPN and Mino this spring, I wondered if my symptom onset after pneumonia was no coincidence, and whether the new lesion after stopping mino was no coincidence either.

 

In any case my doctor (GP, not Neuro) signed off on my taking Mino which I am in my 3rd week of now. I see studies on PubMed where Mino was used with success for MS and I wonder, if there is any harm in my starting with ONLY Mino.  thought I might do just Mino for 3 months or so and then deciede if I want to add another antibiotic.  If we assume that I DO have chronic Cpn, is there a risk in starting off with just Mino? 

 

BTW, I cobbled together my own regiment of supplements based on digging through PubMed and reading lots of medical journals, and what I came up with, turns out is nearly identical to what Sarah reported taking in the bio she posted. Daily I take: 

Alpha Lipoic Acid 600 mg 

Acetyl L carnitine 1,000 mg

Vitamin D 3 5,000 IU

B6 200 mg

CoQ10 200 mg

Omega 3 -- 800 mg EPA, 400 mg DHA

Calcium 500 mg

Magnesium 250 mg

a proboitic

and a good mulitvitamin with minerals 

 

 

Welcome, Couture

You are off to a good start.  I can't answer about Mino alone, but adding a second abx and NAC would certainly be part of the protocol.    As I have said a number of times, there seems to be a list of symptoms, of which we get to choose, or are subjected to, any number.  One of mine was iritis, which I had before MS for 15 years, and which is now gone. (!) 

Add a B complex and plenty of sublingual B-12 (this is water-soluble - I take 30,00 iu d).

Good luck - glad you are aboard!

Rica 

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I am also only on mino. I think it is necessary in the beginning to start with one to kill off some bugs.

Some people get extreme herx even after three months.

couture911, 

   I started with Azithromycin for three weeks with nothing too much noticed and then after three weeks added Doxy at 100mg/day.  The Doxy hit me hard on the second day and added the full dose after three more weeks.  It took me 3-4 months to level off somewhat, brain fog, pain, etc..  I want to move forward and have M.S. so I stuck with it and I am glad I did.  I believe I have a very high bacterial load.  One from each of the two groups below is needed.  Hope this helps.

Azithromycin 250mg - M/W/F

Clarithromycin 500mg / BID

Roxyithromycin 150mg / BID - not sold in the U.S.

*****************************************

Doxycycline 100mg / BID

Minocycline 100mg / BID

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

There's nothing wrong with starting with just minocycline. Part of the idea behind adding azithromycin to it is to preclude the development of resistance; but that's more a theoretical concern than a practical one, as resistance doesn't seem to develop easily.

As soon as you are comfortable on the mino you can probably add another one. My doc wants me three months on mino as severe herxes can occur even after three months.

My liver does not handle massive die-off.

Are you taking NAC, which helps the liver withstand the onslaught?  The other supplements are extremely good for our bodies, also.  I don't believe I would have made it for almost six years without them.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica,

 no I do not at the moment.

 I am afraid with NAC it would get worse and I need to be a bit functioning.

 I was told with this P450 we would have trouble with NAC, but I do not understand the theory.

You think I should add NAC to mino now?

I also still get many tiny red dots when taking mino. When I stopped mino, the dots stopped and on mino again they are back.

Is this die-off? It is on the feet and legs up to almost knees and then some all over the body. But doing much better on mino . Smile

 

 

The dots, petechiae, happen to a lot of people early on in treatment.

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