How does one test capillary blood flow and confirm low VEGF? Shoemaker is a fan of the "Heidelberg Retinal Flowmeter", but since that is not common he feels a pulmonary stress test is the next best test. He explains, "If low VEGF is causing the problem with capillary flow, then we should see profound reduction in the ability to deliver oxygen with exercise in low VEGF patients. Further, the PST measures just when the blood flow to muscles fails to keep up with demand for oxygen. We call that measurement the anaerobic threshold."
So how can this be treated? Shoemaker has done some experiments with patients. He found that large doses of creatine (.3 g/kg) improved VO2 max 10% per month for 3 months, leveling off at a 33% increase in 6 months. That's pretty impressive. Even before the exercise test I had been taking creatine for awhile after I read about this finding, but not at these levels. The recommended dosage on a bottle is usually 5-6g per day (although many take more during a loading phase), while I should be taking 18g according to his findings. So that seems like a logical next step for me. I already drink a lot of water but will make sure to keep that up.
When I mentioned my test results to a friend, he immediately joked that I should go to Gold's Gym and get myself some epo. That instinct happens to reflect Shoemaker's experience- as he puts it, "My favorite candidate to correct both low VEGF and low an-aerobic threshold is erythropoietin." I will go more into epo in a future post, even though I am not sure what my chances are of getting it legally.
He also mentions that it is important to do exercise under AT, and that suggestion is relatively consistent across medical professionals. As difficult as it will be to keep my heart rate in the 80s and below, it sounds like it is worth it until my AT increases. So I will have to find a way to do a lot of exercises lying down.
So is this the explanation for my breathing issue? I am still not convinced since both Shoemaker and CFS researchers tend to talk about shortness of breath while exercising. My shortness of breath is pretty constant even if I have barely moved for days. But at least this seems like a promising area to explore since my test results fit so well with Shoemaker's predictions.
I wish CFS researchers would all read Shoemaker's books (especially "Mold Warriors.") They are not particularly well-written but they have so much information in it that is incredibly relevant to findings in CFS. And the idea that biotoxins are involved in at least a subset of CFS patients fits the experience of many of us. Even the CFS researchers who think viruses are the culprit for CFS don't have a good explanation for why viruses that 90+ % of us carry could suddenly cause such damage in previously immunocompetent individuals. Why not at least explore a theory that could tie everything together?
I would like to conclude with some Ampligen vs. creatine/EPO research conclusions related in chapter "Mold at Ground Zero at CFS," which focuses a lot on Erik Johnson's astute observations about the likely involvement of mold in the CFS outbreak in Incline Village.
The Ampligen study data showed the drug had "increased VO2 max by 19% after 40 weeks of intravenous use in patients with an impairment of VO2 max that wasn't severe. That's all you got? 19% in a relatively not-very-sick population? We had far better results from creatine (40% increase) and anaerobic conditioning (50% increase) and our erythropoietin data showed an increase of over 75 percent! I was told the cost of the intravenous dose of Ampligen was not small."-- Shoemaker in "Surviving Mold"
If Shoemaker's findings are replicated (assuming anyone will bother doing useful treatment research for CFS) then millions of people could easily be helped without having to take an expensive drug only offered in certain locations.