I’ve fallen behind on sharing quite a bit of information about my recent medical adventures. I don’t know where to begin, or how much to divulge publicly. Not out of concerns for privacy—I’ve chosen to be an open book about my experiences—but because I don’t want to bore folks with the myriad of details. If you are the kind of reader who skims, I’ll warn you now that I’ve left some of the best material for nearer the end of this post.
I find myself continuing to pursue a two-pronged approach to trying to nail down why I feel fatigued and lethargic, and acquire more than my fair share of weird medical conditions, without blaming everything on “HIV”. On one hand, I am seeing conventional medical doctors for tests and scans to try to get a definitive diagnosis, while simultaneously utilizing more alternative treatment options, with an emphasis on nutritional healing.
I will try to summarize the past year’s series of events as briefly and concisely as possible:
What started as a simple case of swollen glands last Spring evolved into concern that something needed attention when they failed to resolve after six months, and instead developed a couple of hard nodules. The swelling had grown to a point that it was were disconcertingly visible and uncomfortable, though never tender or painful.
A visit to my friendly and understanding family doc resulted in a cat scan that found two marble sized cystic masses in my right parotid gland. Next was a referral to an otolaryngologist (ENT, or ear, nose and throat specialist), who performed a fine needle biopsy that resulted in the red flag of “abnormal lymphocytes”, which was the first suspicion of a possible cancerous tumor. To “rule that out” I agreed to what was presented as a minimal surgical biopsy to remove a small tissue sample of the masses, though I rejected the part of the plan that gave the ENT surgeon the right to determine whether to remove my entire parotid gland while I was under general anesthesia. Immediately after that surgery, my partner Michael was told that I probably have cancer and that I would need to start radiation therapy soon.
Twelve days later I was told the biopsy did not detect any cancer (though lymphoma could not be ruled out, I learned later), but that because I was HIV-positive the diagnosis of necrotizing granulomas was suggestive of tuberculosis. Although the doctor’s office had the biopsy results November 23, we spent Thanksgiving Day, as well as Michael’s 60th birthday under the cloud of a probable cancer scare.
At nearly every step of this journey, the overriding assumption guiding every “suggestion” by doctors (I still have no other definitive diagnoses) is that all of these things are the result of being infected with the dreaded HI virus, an increasingly remarkable pathogen, in that it can now apparently affect every component of one’s body and every aspect of their health. ‘HIV/AIDS’ has proven to be a very convenient catch-all diagnosis, with its own one-size-fits-all treatment plan of lifetime chemo with ARVs, that can be used by doctors to explain by dismissal a patient’s genuine health problems
Back to the present. I am now being examined by an infectious disease (ID) specialist and for more than a month now, I have been awaiting the results of one of the most extensive panel of blood tests I can recall having had done to detect an infection. To the best of my knowledge, I have never before had my blood “cultured” to determine whether it is (I am?) infected with a pathogen, and if so, is it fungal, bacterial or mycobacterial. I agreed to undergo these tests in lieu of having yet another biopsy performed, as the ID specialist wanted to do!
Meanwhile, on the more alternative fork of the path, I have now had two visits to the Riordan Clinic, “a progressive nutrition-based health facility in Wichita, Kansas”, which also specializes in high dose intravenous ascorbate, or vitamin C (IVA). I was first drawn to the Riordan Clinic when I thought I had cancer, but I am now glad I decided to follow through with my consultations there for other reasons. While my other doctors seem to specialize in this disease or that part of the body, this clinic proudly proclaims to specialize in health.
Not to sound too dreamy about the place, like other medical practices, Riordan wanted my blood and my money, but they didn’t stop there. They had me up all night peeing into a plastic jug (more on that later). They tested me for things no one has ever bothered to check elsewhere, and I’m still overwhelmed by the amount of new information I’ve received, and it will require at least one more visit to discuss treatment plans with “Dr. Ron”, though I’ve gotten a good start.
I am posting these test results here, with a brief description of what their significance is to my future health plan.
Since 2006, when I consulted with a naprapath in Chicago and embarked on my first elimination diet, I’ve known that food is the fuel for health. I know that there are food groups that do not “do a body good”, and one of them is pasteurized dairy. I love milk, but it does not love me, and the cytotoxic blood test caught that. Milk is only a minor irritant compared to some of the other foods on my personal list of food sensitivities.
Unlike that earlier elimination diet, Riordan takes a ‘kinder and gentler’ approach to these test results. Mavis, who spent nearly an hour discussing nutrition and diet with me, as well as Dr. Ron emphasized balance and keeping things doable. “If you can’t eliminate, reduce and rotate”, I was told. It’s really up to me to make the best use of this information.
I consider it good news that no foods in my test hit the dreaded level 4 of sensitivity. Key foods to abstain from for several months include: cauliflower, mushrooms, and shrimp. There are several otherwise healthy foods, including all legumes that I am trying to avoid for at least two months.
Anyone dealing with chronic health problems with vague and non-specific symptoms like fatigue, inevitably reads about the symptoms of poisoning from heavy metals, like lead and mercury, but I have found it frustratingly difficult to get a family practice doctor to order the tests needed to rule that possibility out.
I have a better idea why they aren’t eager to do it. For the metals test, I had to follow a pretty precise set of instructions that required some timing. I had to take DMSA, which binds to metals like mercury, lead, cadmium and zinc, and then capture my urine in a plastic jug for a period of time afterwards (I think it was 6 hours).
More good news here, as the only metal that I tested high for was selenium, no doubt because I take a pretty high daily dose of supplemental selenium as part of my protocol. Thanks to this test, I’m now comfortable with reducing that dose somewhat. Harold Foster, among others, has postulated that ‘AIDS’ is more prevalent in parts of the world where selenium is deficient in the soil.
Endocrinal imbalances are a big issue in both allopathic and alternative health circles. Both modalities seem to support the notion that hormones can be safely supplemented, but they mostly differ about whether one should use synthetic, or natural bioidentical hormones to do so.
I am troubled by the use of hormone supplements, but as I get older I find myself resigned to them, especially if I notice a difference in my energy, vigor and sense of well-being from doing so. It’s hard not to love having some of these essential chemicals bumped up to levels more commonly found in bodies a few decades younger.
For example, testosterone supplementation is common and popular for ‘HIV’ patients, and I’ve used it periodically. There is a cost. When the master gland—the pituitary—detects sufficient levels of hormones, such as testosterone, it signals the organs responsible for producing them to shut down. As a result, my testicles are a fraction of the size they were as a teenager and I have no doubt that hormone replacement therapy contributed to, if not caused that.
Riordan did not check my testosterone levels, but they did find that my T3 (thyroid) level is suboptimal—at or near the bottom of the range most laboratories consider “normal”—and that my cortisol levels (adrenal glands) droop during the day.
I’ve previously been diagnosed as hypothyroid and adrenal insufficient, so I’m familiar with these conditions and I know they could be contributing to my chief complaint: fatigue. Instead of taking synthetic hormones like synthroid and prednisone, I now take low doses of Armour thyroid (made from pigs) and I am trying to boost my cortisol levels with non-medical methods. This is an area I need to invest more time and attention to better understand what is going on here.
This was the first time I’ve used a saliva test to check cortisol levels. It is painless, simple and reasonably inexpensive. The advantage of this test, over the ACTH tests that have been performed on me in the past, is that it measures corticol levels at different times during the day.
I’ve saved what I consider to be the best for last, though I probably can’t do this little gem justice because I’m still learning to understand it myself. I had never even heard of organic acid testing before visiting the Riordan Clinic. According to The Great Plains Laboratory, one of three U.S. labs that performs this test:
The Organic Acids Test (OAT) provides a metabolic “snapshot” based on the products the body discards through the urine. These small, discarded organic acid molecules are byproducts of human cellular activity, the digestion of foods, and the metabolism of gastrointestinal flora. At certain levels, organic acids in urine may be indicators of toxicity or “markers” of metabolic pathways. Metabolites of yeast or gastrointestinal bacteria appear against the background of normal human metabolites and provide an assessment of yeast and bacterial activity.
This test alone may well have made all the time, money and effort of getting to the Riordan Clinic worthwhile. Because of this test, I now know for the first time that I probably have a yeast/fungal overgrowth in my gut, among other things.
Thrush is a common indicator of immune problems and may one of the most frequently expressed indicator diseases for ‘AIDS’. I have never had much of a problem with fungal infections in the past that I know of, other than possibly some skin rashes. I’ve never had a visible case of thrush in my mouth, or even a case of athlete’s foot since my 20s. Until now, I’ve had no reason to suspect a fungal infection in a place I cannot see, and I guess most doctors are too busy looking for the exotic to bother considering something so common and simple to treat.
Of all the things I’ve learned in the last 12 years about my body and immune system, gut health is probably the most important. Much of our bodies’ immune system is produced and housed in the gut. I suspect that my own health problems are the result of, at least in part, the over-prescription and use of antibiotics common to gay men of my era and lifestyle. I don’t doubt that I was prescribed and consumed antibiotics more days than not in the ten years following my positive test in 1998 until I swore off virtually all prescription drugs in 2007, with very, very few exceptions.
I have been diligently working to improve my gut health for several years now. How long has this fungal overgrowth been affecting me, my energy and my health? Will the allopathic ID doctor’s extensive, expensive, paid-for-by-Medicare blood cultures also detect this problem? Or will she simply continue to try to convince me I need to take ARVs instead? I don’t doubt for a minute that those drugs could clear up a yeast infection, but is it really necessary to use a bazooka to catch house mice?
One of things I find fascinating about the OAT is that, unlike the blood tests that most doctors rely on, it is a urine test. Instead of checking what is in the circulation system, OAT checks for elements that are being excreted by the patient’s body. How many mysteries have we all watched being solved by the detective sifting through the suspect’s trash?
Some of the other indicators of my OAT suggest I may also have a bacterial overgrowth in my gut, or exposure to paraben or the solvent toluene; a deficiency of riboflavin and/or coenzyme Q10, which is an essential factor in the Krebs cycle (more on that another time); signs of neuroexitoxicity; possible need to re-evaluate supplementation of L-tryptophan; evidence of repeated immune stimulation (duh); excessive inflammation and more.
You can click here to view the entire report (.pdf), but be warned, it’s a big file, so give it some time to download.
Answers beget more questions
As I mentioned at the beginning of this post, the amount of information here is overwhelming. Just because these markers are out of range, does not mean I have all of the conditions in the list above. Most of them will require further exploration to determine a) if the problem is significant, b) what is the cause, and c) what is the best way to address it? I will need some help working through these questions, and that will require another visit to the clinic.
As I expected, any answers provided by new information like this will also generate new questions, and this batch of tests has exceed my expectations.
At least now I have a target. I’m not suggesting that all of my health problems are the result of a yeast infection, but it sure as hell won’t hurt to get such an imminently fixable problem cleared up ASAP. My energy for the last two weeks has been better than what I had most weeks last year, which is a good sign that something I’m doing is helping. Hopefully the IVA will be beneficial as well in helping my new and improved immune system clear out any other lurking nasties.
I know, I know, a lot of people have asked me to write more about the intravenous vitamin C, and I will. Soon. I promise.Note: Links to all of the test results I’ve mentioned above have been posted on the attachments page, but be warned, some of them are big files (.pdf), and may take some time to download.