For Guts817

Hello, ThisisMS seems to be causing posting difficulties again for me, so I have brought your questions here!


(1) I know Sarah took Roxithromycin 150mg 2x per day, but Dr. Wheldon recommends Azithromycin 250mg 3x per week. Why Azith over Roxith? And why only three times per week, not daily? I'm curious about this later dose. For full disclosure, I've been taking 250mg daily, but skipping a 1-2 days per week, and anecdotally, I always feel a touch worse when I skip. Hmm...

Roxithromycin is not available everywhere, and we had to import mine from France, so he thought it better to go for what is more readily available.

Three times a week because of the dosage in the capsules or tablets.

(2) I'm about to start the Metroi, a little early, as I'm only in month 3. It seems to have the most serious negative side-effects, but I know this is very important. I believe Sarah took cycle's every three weeks, but the graphical recommendation suggests monthly? (I could be reading this wrong.) Any thoughts from others who have tried this? What side effects of this should I most worry about? (Obviously, I've already decided the down-side risk is worth it versus the down side of not doing it!)

The recommended cycle is every three weeks, but I cheated a bit by makng my cycle three weeks from the finish of a pulse rather than a start.  Nobody has noticed that before!

Now I am going to post your story, so I will leave it for others to answer!

This part people don't have to read! ;) I want to share my story! I am a 47yo M. My first symptom happened in mid-May of 2016. It was numbness on the right side of my scalp above my ear. Within two weeks I was having a bout of serious neuropathic pain (numbness, burning in my arms and legs), which subsided over the course of the month. Over the next 2 months I made several trips to my primary care, urgent care and ER with no help or indication of what was going on.

My persistent symptoms were right scalp numbness, significant fatigue, numbness (paresthesias) in my face and scalp, arms (mostly right) and significant neck and upper back pain. I had a neurology visit that August, was told I had no evidence of neurological disease. In September, I began to feel numbness/pressure in my right eye. An ER visit to the eye hospital found no evidence of Optica neuritis. Had a brain and spine MRI with contrast, both were negative for MS. My Neuro recommended physical therapy (which made my symptoms worse). In fact, any activity often exacerbated my symptoms significantly, the more intense the exercise, the worse I felt (sounds like MS lassitude, but I don't really know). I went on struggling with the same symptoms until early March, when ear pain/ear pressures started, as well as new numbness in my finger tips and feet, as well as foot pain with walking. April was my worst month ever, some days I could barely function (I did, but it was huge effort), my brain felt numb most days, the pressure in my eye and ear (typically right side dominant) were really tough. A few things happened between then and May: I went to see a sinus specialist who found mild mucosal thickening, which they attributed to my congestion (but not why I have congestion), and my PC doc sent me for an EMG, which was negative, ruling out a whole host of peripheral possibilities for my peripheral numbness. At that point, I decided what was left that could be causing my symptoms but Lyme (which was ruled out) or MS? Not bloody much. So I did a decision tree, looking at the probability I have MS versus not, and the impact of antibiotic treatment in each scenario - it was a no brainer to me. Even without a diagnosis, I decided to get started. Dr. Wheldon recommends people get started sooner, as it is correlated with higher success...why wait to get worse?

To be clear, I do not have any MS diagnosis, I only have my medical history, and have so many other things ruled out. But I also know that at 47yo, and a Male, if I have MS, it is PPMSi, and takes several years to diagnose. Why? My read is because our doctors in this age have become so reliant on their (admittedly amazing) tools, like MRIs, etc., that they have stopped listening to patients and factoring in their symptoms.

And you know what? 2 months later, I feel mostly normal again. I still have some numbness in my feet, and right scalp...but my energy is returned, the pressure in my eyes/ears I don't even notice. Some days I forget there was something wrong with me! This is beyond the success I expected...it wasn't linear by any means...I felt worse after I started, especially the pressure in my eyes and ears (I am by no means knowledgeable, but I understand similar symptoms can be herx...), as well as my night sweats (mostly my head, and I forgot to note above).

I just had my first son, and I don't have to worry I won't be able to take care of him, like I was worrying about before he was born a couple months ago. Amazing...thank you to all of you on this community. Your stories inspired me.

Congratulations on the birth of your son: I hope both he and your partner are doing well!

You say that two months after all the tests, you feel nearly normal again.  Here is something to think about: several' armchair experts' on the forum of the British MSi Society loved to say that I never had MS at all, but ADEM, a single demyelinating episode which some people get, just the once then get better and probably caused by a hit and run virus.  My husband says that the lesions on an mri also look very different, so maybe, unlike me, you actually had ADEM.  Maybe you should ask your neurologist...........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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