This is my follow up entry as I work through Dr. Richard Horowitz's "Why Can't I Get Better?" book. It is written with Lyme Disease/Co-infection patients in mind, though would not solely benefit them and is not exclusively written for them.
This is not an easy book, especially for someone who feels his/her cognitive abilities have become compromised. It is a must for that person to soldier through, however, because the information is crucial. Some have argued that there is little point to doing so, because people suffering from chronic Lyme/MSIDS often lack the funds to see a Lyme Literate Medical Doctor (LLMD) who would be best in the position to help a patient. I argue the opposite: I think it is MORE important for such a person to read this book and use it to work with what you have and to find others who are doing so as well.
What do I mean by "not an easy book"? Well, this is not Sartre or Nietzsche or Foucault. It is not obscure or obtuse or demanding that you keep track of a cast of thousands. It's not so full of jargon or difficult words that a dictionary is necessary. YET there are aspects of medical knowledge that are quite detailed. I still could not tell you exactly what a Babesia FISH test is, other than a way for a lab to utilize a blood sample (I presume no mighty trees were felled with a herring, after all). I simply obtain a rough understanding of things such as cytokines (involved in inflammation) and with enough to suffice move on.
The challenges do explain why I have heard of doctor's offices raving about this book and general reviewers like in the Washington Post dumping on this book. The writer is far from a fake and cases he discusses show really sick people who followed various methods to getting better. Dr. Horowitz has conducted studies and experiments himself and has presented to various learned bodies and even spent time working with the Chinese center for disease control.
So far, just under half way through the book, I perceive how chapters after the doctor's "map" are detailing aspects put into each of the 16 categories for diagnoses. I must use the plural because a patient in this chronic category usually has a number of problems, as I mentioned in the prior entry. In each chapter so far, a sample patient's case is examined for how he or she was helped by understanding the role of, say, heavy metal poisoning, or an altered and dysfunctioning immune system or a missed co-infection that makes symptoms of Lyme more harsh to experience as well as difficult to treat.
I fall into that last category, for sure, while I remain a little in the dark about others. Let me just give you a simple chronology. My first positive Western Blot Lyme test was in 2008. I was not tested for any co-infections that I know of until 2012 and I tested positive for Babesia duncani (WA1). Frankly, other doctors before I saw a cash only doctor recommended to me, told me outright that I did not have Lyme. Most likely, they used the ELISA test, which is mostly reviled for its inadequacy. Most doctors will not use the WB test -- as per IDSA/CDC/Insurance Company protocol -- unless the ELISA is positive. I can only guess the ELISA was negative because I never saw that particular test in my files (that I can recall). This bias by standard (or conventional or monied) medical practice is how I can get a general doctor refuse to even recommend (while not requiring a referral) a doctor to treat me based on the positive WB test. Though this doctor claimed that she knew "little to nothing" about Lyme, she had her nurse tell me that they refused to recommend someone because "we don't think you have Lymes (sic)." How did they become such experts? Turns out, the treatment I sought then may have prevented me from a major crisis, as I spent my first day with a PICC line also in the ER for an episode of Supraventrical Tachycardia that likely had been going on for days. I went from 118 lbs to 103.5 in maybe 2 weeks tops. My resting heart rate before the Ceftriaxone started was about 180. I may not have gotten better but at least that has never reoccurred.
The above illustrates why I think patients need to know a lot about their situation in order to be taken seriously and to get aspects of their health addressed, even if they don't get everything done at once by one LLMD. Of course, it isn't foolproof. I see a fellow "Lymie" for a practice called "healing touch" (aka energy healing) that is controlled by RNs. She had a crisis (had to stop FT nursing owing to it) and required a trip to the ER herself, but the attending physician was a lot less nice than mine, perhaps because a pulse rate of 180 is pretty hard to ignore. Her ER doctor told her that he thought she was faking illness. An RN is faking?!?!?! Good thing for him that wasn't me.
Now that I know I have Lyme and a co-infecton and have read his understandings of these, I can add things to my regimen like Grapefruit Seed Extract and Artemisia (should have been Artemisian but given what I already take, it's okay). I know to pursue having a general doctor look closely at my cortisol and thyroid and adrenals and my cytokines. I should have saliva tests for hormones and stool testing for parasites. I probably will be re-tested for heavy metal burden because he disclosed why the protocol for the 24 hr challenge with DMSA is not as good as the 6 hr challenge that is weight-adjusted (I had the 24 hr challenge). In short, I am not helpless, even if I cannot afford Dr. Horowitz or someone much like him.
I can learn from his patients' stories, though. He provides a good number of them. At first, I did not know how I would like reading the personal accounts. Jealous of their care/results? Annoyed that this made the book longer? As it turns out, the stories are well recounted and I could relate to many of them. I also even could imagine a patient running up and down the halls yelling "I can walk! I can talk!" after an IV Glutathione treatment when she entered and fell into a fetal position on the floor and needed a wheelchair to go into an exam room.
This is life affirming stuff for Lymies like me. And we sure need hope that there are better days ahead. The key will be if doctors can and will work with us. By giving them stuff to test and follow and possibly treat, it seems this won't "get them in trouble" because their necks won't be going out that far. Since I won't be asking for months of Mepron or Malarone (or other expensive antibiotics), I am hoping I can get somewhere because Dr. Horowitz is providing me with tools to get valuable services from the providers I currently have (fortunately one is not the aforementioned office pushing the "false positive" narrative).