Personal Advice

That's like the good of antibiotics being cancelled out when they attack the good bacteria or prevent your body from learning to heal itself, but the prospect of your tests actually making your condition worse just sounds terrible. It's good that you're looking at things from every angle though.

Have you ever read "Our stolen future?" I couldn't get through the whole thing because it's enough to make you want to bury your head in the sand, but I didn't get rid of the thing either. It's about the effects of dioxins (from bleached paper, plastic, etc) and other everyday items of convenience. I got it years back at an endo meeting. One of the very worst things about auto immune disorders is that you do your best to get a handle on one set of symptoms and then something else like fibromyalgia, chronic fatigue or hypogylcemia comes along. Not cool at all.

Keep your head up and keep looking for answers.

Best,
kb

Looking for answers? After checking out my submission here you can find them on www.prx.org/pieces/18374.

What came to mind are all the cancer patients being treated with radiation and being x-rayed after surgery to see if the cancer was removed. My mom died of cancer July 4, 1997. Seeing what the disease, surgeries and radiation treatments did to her was like watching a science fiction movie. She had sarcoidosis. I have her exact symptoms.

Sarcoidosis is characterized by the presence of granulomas. I had my tonsils removed a few years ago. The operative report cites the presence of granulomas. I have nearly every symptom listed for the disease in The Merck Manual.

Symptoms include low-grade fever, dry cough, shortness of breath, fatigue, brain fog, flu-like symptoms, aching joints, enlarged lymph nodes, multiple cysts, skin lesions and inflammation about the eyes.

I was seeing chiropractors for years for arthritis which turned out to be pseudogout (low uric acid blood level, calcium pyrophosphate crystals). At one point, the pain in my mid-back was so severe from amassed crystals passing through the kidney, I called my primary care physician pleading for pain relief. He said no. Thankfully, the pain stopped the next day once the crystals passed.

With little help forthcoming from the medical community in determining or treating what was wrong with me, I decided to do it myself. I began collecting my medical records and researching various diseases. I read the Merck Manual from front to back twice, flagging specific sections with so many multi-colored stickers, it appears shroud in confetti. I scoured the internet and bought all kinds of medical books, journals, manuals--you name it.

I was surprised to find information in my records never disclosed to me by my primary care physician, such as testing positive for Epstein-Barr Virus and euthyroid. Instead, my complaints of fatigue were met with prescriptions for anti-depressants. I stopped taking the drug at the recommendation of an endocrinologist who felt it was causing some of my health problems.

I began asking doctors to order specific tests and prescribe certain medication. You can imagine this did not go over well, so I had to come up with ways to convince them of the appropriateness of my requests. This involved producing relevant published case studies by doctor-respected physicians, getting compounding pharmacists to call and fax the doctor information, and having specialized labs provide instructions for collecting and sending blood samples.

From this I found that I had an H pylori bacterial infection, possible Aspergillus infection, anemia with no iron stores, a good possibility of Babesiosis, and the probability that I had the beginnings of cancer. I also obtained anti-fungal medications that would not have otherwise been prescribed.

There's a lot more to this story.
-Doctorblue

Issels (sp?) Cancer center helped a friend rid his body of liver cancer in three weeks.

He had all the chemo he could stand and found this place. It's not woo-woo New Age. It is based on solid reseach from German institutes. Their goal is to change your food intake and teach your body to make anti-bodies to fight the cancer with a medical procedure.

Please contcat me via my bio if you want more info.

Sallyfranz

"Both faith and fear are the belief in things not seen." S. Franz

I've been unable to work the last three years. I spent a good chunk of my retirement money on doctors and testing in the hopes I would get diagnosed and treated quickly. Fat chance. Now the money's gone, and all I have are all these test results. My last hope is just to piece this together and show doctors that by truly working together, they can easily come up with real diagnoses and actually cure patients. Thanks for the tip nonetheless.
-Doctorblue

I love hearing people who expound what I too believe. I particularly like your statement about believing authority figures. The ubiquitous "Got milk?" promo doesn't hold a candle to the bang up marketing gig devised to convince the public doctors were all-knowing gods. Even vaseline has a warning to consult your doctor.

I have multiple maladies noted in various test results. But pointing out what's different as in the Highlight magazine Pete and Repeat feature does not a diagnosis make. What I need is a team of doctors to meet together and hash out the best approach.

I look at this like bowling. If you can guess the root cause of disease, it's like getting a strike--you hit the head pin and the rest fall down. But our medical system of specialists operate as islands onto themselves. They dare not trespass into another specialist's territory. That's not how the body works. Something wrong with the heart can affect the hands and feet due to lack of oxygen. The doctors I encountered are all like starting bowlers, plicking off a pin here and there and even throwing some gutter balls because they're looking at the body as a conglomeration of isolated parts with the assumption that the rest of the body is functioning optimally. They prescribe medication without even thinking about how it might affect something else going on in the patient's body.

Case in point. In fall 2003 a saliva test detected I had a Candida albicans imbalance in my normal flora. Research attributes Candida overgrowth in part to widespread use of antibiotics, steroids, birth control pills and overconsumption of sweets. This information simply did not register with the gynecologist I consulted about severe abdominal pain and endometriosis detected by ultrasonography. After telling her point blank that estrogen encourages yeast growth, she proceeded to prescribe a contraceptive estrogen patch to alleviate the pain. The next gynecologist my primary doctor referred simply said: "You're around 50. Just wait a few months, it'll all go away. You can wait that long can't you?" Years later, it hadn't gone away.
-doctorblue

Thanks Michelle for sharing your experience. I have a huge soapbox on what's wrong with mainstream medical testing from blood tests to the illness-appropriateness of the typically ordered imaging tests. You touched on this in mentioning not giving cultures enough time to grow. Today's tests typically only pick up an existing abnormality maybe half the time, and by then, the affected organ is functioning at 10-40%. That's why specialists tell me they usually only see patients much sicker than me.
-Doctorblue

What a sweetheart you are for caring. Really. I was considering posting as many medical test and imaging reports as practical on my yet to be designed website doctorblues.org along with a description of what actually transpired and was said by physicians during imaging and at follow up consultations. There are huge discrepancies for some of the reasons I mention in my audio http://publicradioquest.com/audio/user/6076
(ie: afraid dire health remarks will cause patient insurance cancellation, not wanting to ruffle feathers with referring physicians and cut off a source of income, worrying about malpractice suits if proven wrong, double-booking or being late for another appointment as a per diem hospital physician so there's no time to write more than two words on the report that don't even address the prescribing doctor's concern...and some of my all time favorite doctor beliefs: there's no such thing as an overgrowth of Candida Albicans, a component of everyone's normal flora; fungal yeast infections are solely vaginal and do not occur anywhere else in the body, and Americans who don't travel don't get parasitic infections.)(I guess these docs don't hike, swim or hunt.)
After three years of research, I have tons of information and a personal guestimate of what's wrong with me and what it's going to take to cure. The symptoms are the same as those that affected my close relatives, most of which died never properly diagnosed. My theory is that if you let disease fester in the body long enough, it not only causes secondary and tiertiary conditions to develop as the body tries to heal itself, it also causes cells to mutate into cancer...but I digress.

In keeping with the trend to try to get all of a patient's information together in one place to assist diagnosis, I am willing to make all of it available. I even have copies of my CT scans, MRIs and other radiographic films. Think of it as a virtual Seinfold episode. You know, the one in which Kramer acts out the symptoms of syphilis in front of doctor wannabees who have to guess what ailment the pseudo patient has. A contest of sorts. Perhaps we could pit the medical community against laypeople to see who can accurately determine what's wrong with me and how to cure it. Maybe there could be competition among medical universities...I haven't worked out the details and doubt the appropriateness of such a venture here. What makes seeking out the root cause of disease so complicated and time consuming is sifting through all the peripheral illnesses that occur as a result of the initial illness not being diagnosed and treated from the outset. I'd be interested in ideas as to how to go about partnering with an organization involved in getting patient health information online and accessible. I'll also welcome assistance from anyone who wants to help me with my website registered through go daddy. I already paid for all kinds of website services almost a year ago, but being ill, have not been able to take advantage of this.
-doctorblue

ps If I get my images online, the site will be X-ray Rated!

I can't tell you how many times I've heard stories about what one doctor termed patients "making the rounds" before finding a doctor who was familiar with the patient's ailment. When they find this doctor, many of the women cry because finally -- after years of suffering -- someone is telling them that there is a physical reason for their pain and that they are not just crazy. Don't doctors realize that irregularities cause chemical reactions in the body that are toxic? If you let infection (pus) fester long enough, it eventually reaches the brain and causes secondary conditions like schizophrenia.

A former co-worker who suffered from migraines and epilepsy relayed the following encounter. This doctor diagnosed her ailments as psychosomatic best treated with anti-depressants. When she told her husband, a police officer, about the encounter, he insisted on accompanying her on a follow-up visit. Uniformed complete with holstered pistol, he entered the doctor's office with his wife and proceeded to place his gun on the doctor's desk as he sat down, then said something to the effect of "Now tell me about this all-in-your-head diagnosis." The doctor proceeded to order a series of tests whose results prompted the doctor to prescribe medications recommended for epilepsy and migraine headaches. Anyone know where I can rent a cop?
-doctorblue
http://www.publicradioquest.com/audio/user/6076

Comment welcome. In fact, that's exactly what one infectious diseases specialist told me after running a CBC and blood tests for STDs. Even though the tests were unremarkable, he prescribed doxycycline (a member of the tetracycline antibiotics) which he said should cover anything missed. When I told him I suspected I was exposed to Stachybotrys toxic black mold and asked about prescribing Amphotericin B, he told me he had treated a couple of patients exposed to mold with IVs of Amphotericin B, and the bodily toll was worse than if they were doing chemotherapy. He was unaware that a 2% nasal spray of the compound is readily prescribed, relatively safe and very helpful for certain fungal sinus infections. And yes, I'm aware of Hofstader's acclaimed books.
A note on blood test reliability: as long as you have enough red blood cells - even if they're star-shaped, machine based count shows normal. And the applicable definition of normal is "average" as in the condition of blood of the average Joe. Have you seen "Super Size Me"? -doctorblue

Thank you for your response and particularly for sharing your experience. I think it's very difficult for those who haven't experienced a major bout with their health to understand. You might imagine that being disabled, not working and being very concerned about my health during the last three years, I've amassed a small medical library of literature, all of which recite this advice, which I've been following with occasional indulgences (I'm human.)I was not aware of the plastic wrap, though, and I'm not sure what "fake" milk is. In fact, many sources encourage drinking rice or almond milk. Anyway, if you haven't heard Sallyfranz's audio, it's boss!
--doctorblue

ps Regarding John Hopkins, Mayo Clinic, etc. I haven't found one person who was treated at either facility or one doctor who recommends either. In fact, one doctor told me about a patient of hers with a systemic infection that went to Hopkins. When the requisite routine tests came out "normal," the patient landed in the mental ward. In fairness, doctors whose egos I wounded by quoting information from related published works did tell me that I should go see those doctors or to John Hopkins and the Mayo Clinic if I thought they knew more.

I have great respect for both Duke and Chapel Hill based on relationships I developed with folk from there a long time ago.
-doctorblue

I would go to web md and if that fails I would google my symtoms until something came up that kinda matches how I feel. Then go back to doctor A and tell him you think you have (insert google search result here) and see if he agrees.

The quack was too lazy to diagnose you in the first place so make him look it up on google.

Actually there was a book on John Stewart or the Colbert Report by a doctor about doctors and a section of it was how doctors if you press them when they do not know what is wrong will make up an anwser. If someone knows the name of the book, that may be the best thing to read and to get advise. At least it is written by someone that has a doctorate, not someone that plays a doctor.

Have glass of Pino Grecio, relax, listen to a few clips, and click a few stars!!!!!!!

http://www.publicradioquest.com/audio/user/8769

Thanks for your advice. Really. Because I did what you recommended and brought my print outs to this one pulmonary cardiologist. His response: "You can print out the whole internet. I'm not going to change my opinion." I have a slew of different doctors' quotes for my upcoming website: "Stupid things doctors told me." This same doctor started answering his own yes-no symptom questions when I took more than two seconds to answer. A couple of times we chimed opposing answers simultaneously. I could go on...The book is probably "How Doctors Think" by Jerome Groopman, MD. I recommend it. His research is based on extensive doctor interviews and his own experience as both patient and doc. Thanks again. I love the emotional support. ---doctorblue

the bottom line is this: if you think something is seriously wrong with you...keep going to another doctor...keep pushing for diagnosis, and keep after a second opinion once you recieve it....because you could be a dead man walking and not even know it! dont play with your health...your just another patient to the doctor...he could probably care less if your really sick as long as your insurance keeps paying up that's all they care about!

Appreciate the input, but working on the assumption that all you will get is another doctor referral, how many doctors would you see before throwing in the towel or dropping dead?
-doctorblue

Well if the doctors are just turning out to be a waste of time, then try to find some sort of group that actually faces the same issues as you. They may actually be of help since it is easier to follw someone elses footsteps than it is to make your own.

Have glass of Pino Grecio, relax, listen to a few clips, and click a few stars!!!!!!!

http://www.publicradioquest.com/audio/user/8769