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 8:50 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 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?
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Re: Started Dr. Wheldon's therapy 2 months ago, have questio

Postby Loriyas » Sat Jul 22, 2017 6:09 am

The CPn 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.
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Re: Started Dr. Wheldon's therapy 2 months ago, have questio

Postby guts817 » Wed Jul 26, 2017 2:37 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!
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Re: Started Dr. Wheldon's therapy 2 months ago, have questio

Postby orphansparrow » Wed Jan 03, 2018 12:09 am

guts817 - Hello! How has it been going? Any updates?
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Re: Started Dr. Wheldon's therapy 2 months ago, have questio

Postby SarahLonglands » Thu Jan 04, 2018 1:40 pm

orphansparrow, you might well find guts over at CPn Help using another name, since several people joined there at about the same time. Have a look, since you might both fid it very useful! Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Started Dr. Wheldon's therapy 2 months ago, have questio

Postby Ella » Sat Jan 20, 2018 3:23 pm

Hi. You definitely have guts trying this treatment without even an MS diagnosis. I was diagnosed with MS in 2011. I progressively got worst. After reading the literature, I did a blood test for several bacteria (Borelia for Lyme disease, as well as Chlamydia Pneumonae, both of which had been associated with MS like symptoms). It had been 17 years since my first MS symptom but still, my IgG levels for Chlamydia were high which shows I used to have the infection. My IgA levels were low meaning I no longer have Pneumonia. I was told by Dr. Stratton at Vanderbilt that if my IgG is above 1:64 I still have the bacteria in my system hiding and causing MS like symptoms even though my IgA levels are low. I didn't do a lumbar puncture which would confirm if I have the Chlamydia bacteria hiding in my system, based on Dr. Stratton's guidance. I started my antibiotic therapy in July of 2017. It has now been 7 months. One thing is for sure, I used to have an excellent and healthy digestive system and my gut bacteria did a great job. I have now ruined my healthy gut. That is a long term negative effect of the antibiotics which I will have to deal with after the therapy is over. The antibiotics also added layers and layers of fat to my stomach after about 4 months. I will have to deal with that as well.

The antibiotics I take are Azythromycin, Minocycline, Rifampin, and Metronidazole. These are based on Dr. Stratton's research and patented protocol to get rid of Chlamydia P. at Vanderbilt University in the US. Dr. Wheldon follows Dr. Stratton's protocol. However he is also a microbiologist and very knowledgeable in this field. Dr. Stratton notes that some of the antibiotics can be replaced with others. For example as a macrolide he suggests Azythromycin or Clarithromycin. He doesn't explain why Azythromycin is only 3 days a week. But he suggests 250 mg only 3 times a week. Minocycline can be replaced by Doxycycline. Rifampin can be replaced by Rifabutin. I would not change his patented protocol which is based on years of research and clinical experience.

The first three antibiotics are bacteriostatic and stop replication but the Metronidazole kills the bacteria so the initial pain would be much more than the others. Dr. Stratton used to start this AB at the beginning of treatment with the other three, but now he suggests waiting at least 6 months to decrease the load of toxins that will be produced and therefore decrease the associated pain and symptoms. The symptoms vary in different people. I am about to start it next week.

If in fact you do have the bacteria, which can be easily determined with a blood test (test for IgG, IgA, and IgM), your load of bacteria is not very high since your first symptoms started only a year ago. It stands to reason that your symptom following the antibiotics will be lower as well.
Good luck!
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