In this blog post, I am going to speak from my own perspective.
I received a Lyme Disease diagnosis, and after I wasn’t recovering I received an ME/CFS diagnsosis.
So which diagnosis is right?
From my perspective, I believe both diagnoses are correct in my case. However, I think when you have chronic Lyme, Lyme Disease is actually a small part of the big picture. I think it’s rare that somebody with chronic Lyme disease just has Lyme disease. I believe most have tick-borne co-infections and/or other opportunistic infections. I also believe there are immune dysfunctions, auto-immune mechanisms involved, amongst other things. It’s a complicated puzzle, and I believe the pieces can change based on what infections, what genetic mutations, what toxicities, and what susceptibilites one has.
Since I have a diagnosis of ME, does that mean I may be infected with a retrovirus called XMRV?
There has been a debate going on about whether patients with ME are infected with a retrovirus called XMRV. A retrovirus makes a lot of sense, and I really think there may be a retrovirus involved, but I don’t think it’s XMRV. However, my opinion will obiously change if there are positive results from the BWG/Lipkin studies. Strangely, for whatever reason, the FDA is suddenly taking the investigation more seriously. I’m not too sure what to think of this. Coincidentally (or not), I became ill in 2008 while living where the Lake Tahoe epidemic took place.
So what do I think is going on?
In my case, a number of organisms have taken over my cells as seen in lab results, darkfield microscopy, and wright-giemsa staining.
I have an ignored disorder of the heme synthesis called kryptopyrroluria (known as HPU or KPU). Today, this is seen as an alt-med diagnosis, but when you look at history, this disorder has appeared in many medical journals and even some of the most prestigious medical journals from roughly the 1960’s to 1970’s. After this, the disorder has been basically ignored, and even forgotten in mainstream medicine.
I also think many patients may also have a generally “mild” (for a lack of a better word) secondary porphyria caused by a combination of toxins and infections. However, patients (including myself) have still been to the E.R. with very severe and distressing symptoms that resemble a porphyria. Perhaps the patient may misinterpret these attacks as an extremely severe herxheimer response. Like HPU, this is a disorder of the heme synthesis. A secondary porphyria could explain both the dysfunction of the Cytochrome P450 system and the somewhat relapsing/remitting nature that some experience. It could also explain the drug, food, and chemical intolerances many experience. While I do not notice many drug or food intolerances, the couple drugs that landed me in the E.R. were an anti-psychotic called Geodon, and the drug Rifampin. I was not able to handle quinolones or Rifampin, but I was able to treat the bartonella with an herb called Houttuynia (which caused low-grade fevers and major herxing). Both Geodon and Rifampin felt like they were going to kill me and landed me in the hospital. These drugs can be great offenders of porphyria.
I feel that the disorders of the heme synthesis may contribute to the methylation problems I experience and my need for mega doses of vitamins such as B12 and Folate.
So why do I think I may have secondary porphyria. Well, I did an at home test where you take a urine sample and stick it in the sun. Throughout the course of the day, the urine changed to a very dark copper-brown color. I am receiving a kit from The Porphyria Foundation to see if I really have the condition.
Some may look up porphyria and think it’s a very rare disease, because well, they call it very rare. I think it may be a lot more common than we think. We have to look at history and remember that in 1889 there was a near epidemic of porphyria in Europe induced by the drug sulphonal.
A porphyria and MCS connection has been made in the past, but this of course sparked a lot of controversy – enough to make Stephen Barrett from Quackwatch try to “debunk” the connection. Many researchers that were trying to debunk an MCS Porphyria connection were also trying to debunk MCS as an organic syndrome at the same time. With the conflicting medical journals and obvious biases researchers have portrayed, I will keep a neutral position until there is better science and controlled studies when it comes to MCS, possibly related syndromes, and porphyria. In the mean time, I am on a quest of my own.
These are my most recent views on my illness. I don’t claim to be right, and I don’t claim to have ‘the answer’. I’m just sharing random thoughts and opinions.
Lyme Ideas 