Started Dr. Wheldon's therapy 2 months ago, have questions!

A forum for the discussion of antibiotics as a potential therapy for MS

Started Dr. Wheldon's therapy 2 months ago, have questions!

Postby guts817 » Fri Jul 21, 2017 7:50 am

Hi all, I've posted in a couple other strings, and am so encouraged by so much positive energy here, and success. I started Dr. Wheldon's protocol 2 months ago, and am starting month three, and I have a few questions I would be grateful if anyone can answer for me.

(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...

(2) I'm about to start the Metro, 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!)

I appreciate anyone's thoughts on this. I'm also happy to communicate with anyone else who is going through the ride, and share stories.

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 PPMS, 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.

It has not been easy. My partner is an MD, and she is not thrilled with what I am doing to myself...and says my success is placebo. Maybe, but I really don't think so...I suffered so greatly for a year...

Anyhow, enough! I ramble. I thank anyone for their thoughts on my questions, and am happy to communicate with anyone who is going through this now.

Oh, I wanted to add, I can't seem to figure out how to register for the CPn help website. Is that working?
guts817
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Re: Started Dr. Wheldon's therapy 2 months ago, have questio

Postby Loriyas » Sat Jul 22, 2017 5:09 am

The CPn Help.org is working. Not sure why you are having difficulty registering? Try to get on that website. It is a wealth of information for antibiotic protocol.
Loriyas
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Re: Started Dr. Wheldon's therapy 2 months ago, have questio

Postby guts817 » Wed Jul 26, 2017 1:37 pm

Hmmm, I honestly can't find any button or space to register. Login yes, add a math result as well, but nothing says to register. Am I looking at this right?

Never mind, found it through the google search option...and have registered. Much appreciated!
guts817
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Posts: 7
Joined: Tue Apr 18, 2017 1:42 pm


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