Dr David Wheldonⁱ has been treating and following some people using the Wheldon/VU regimen we have adopted here. This has generated a data set which while not public is interesting as an anecdotal tally.
7 were SPMSⁱ
1 was PPMSⁱ
2 were organic brain syndrome considered possible pre MS.

These numbers do not include people Dr Wheldon advises without seeing personally, or who are being followed by others with him consulting. These are people for whom he has done the assessments himself and therefore has a complete data set.

The results were improvements of some kind for all but three patients. Two of those who did not respond also did not renew prescriptions as expected (ie going through one month of meds in two months)and thus are not likely to have taken the medicines as required. It is very clear from the research here that suboptimal levels of medicines otherwise effective for CPn results in persistence. Only one patient appeared to be compliant but did not respond in spite of treatment.

Improvements were varied person to person obviously based on ability at start of treatment. Improvements in strength and functionality were seen where in the wheelchair bound person gains ability to stand and transfer all the way to a less disabled patient at the outset regaining the ability to run.

This data base is not public as it pertains to private medical records which are protected from public view, yet the overall data set is interesting. The actual material reads very much like the patient data in the VU patent materials found here near the bottom of the page, that data being part of a study wherein the patients records are a matter of public record.

While this officially is "anecdotal" as a number of things are not scientific, for example that Dr Wheldon was not blinded nor was the patient and that it does not account for people that were not followed up or who dropped out, it still supports and echos the VU experience with treatment. Also importantly it addresses the question of what the person who really does it and stays with it can expect.

While a critic might say "yeah but the people not followed probably quit because it was not working" the fact is that since the person who was lost to follow up was not assessed it is entirely possible that person quit due to pseudoexacerbation or side effects that occurred prior to enough improvement being seen to convince them to stay with it. At 6 months, I do not walk well still, but I have certainly had some pseudoexacerbations. This treatment, due to the occurance of those pseudoexacerbations and porphyric symptoms, is more likely to result in drop outs prior to efficacy than most regimens. Without physician support and encouragement, and patient trust that it is a good regimen that they can have faith and remain involved in, people will leave. Clearly the patient who feels a pseudoexaceration then goes to their non antibiotic prescribing neuro will hear "What!? that's nonsense let's get you on steroids, You are having an exacerbation!" because that neuro has no concept of a possible transient worsening due to endotoxinⁱ, and a certain disbelief in the approach. This patient is not a treatment failure but an unsupported patient who was not sure she could trust this approach. People lost to follow up are as likely be these people as to be people who quit due to it "not working". It would take an assessment by an experienced person to say definitively it is "not working". In Dr Wheldons data, only one patient who took the meds as prescribed was truly not helped after physician assessment.

Additionally as a patient being treated and sharing experiences here it echos our experiences with the protocol. Those of us with more disability are seeing small but important improvements, being able to for example work our own toothbrush or transfer alone. Then we have Rica who after 18 months is relearning running though she started out near wheelchair status.

The patient seen the longest in this data set mentions 10 months of treatment, and treatment is ongoing not "done". The recent papers updates submitted by Dr Stratton which outlines a regimen of 3-5 years certainly indicates these data are preliminary, yet the early improvements are very positive.

Thank you to Dr Wheldon for taking time to tally these experiences for us!