Posted by bleauberry on May 15, 2009, at 18:04:00
In reply to mono/allergies/celiac/Lyme; constant fatigue - son, posted by garnet71 on May 14, 2009, at 18:16:56
It is hard to feel like dating when one feels like crap. Or if they do have desires, it is a monumental task to go through the process of beginning a courtship when one doesn't feel good or stable. I would not be suprised if there is a sense of unworthiness involved as well, completely unjustified, but quite real for someone who sees they are mysteriously ill yet surrounded by healthy bouncy peers. It is an isolating feeling.
Getting a diagnosis will be very difficult if not impossible. A likely scenario...lab tests come back normal, various infectious disease tests come back negative, thyroid values appear normalish. Several doctors and specialists get nowhere, years go by, 15 years later some new pioneering doctor comes into your path and has healing underway in a short time, with something very simple that any of the previous doctors years ago could have done.
To fight those microbial beasts...mono, Lyme, Lyme-like cousins...is a pioneering art. There is no standard cookbook or recipe. The best bet is to hunt down an MD who is considered to be an LLMD (Lyme literate MD), not just because they are pioneers in recognizing and treating Lyme, but because in the process they also become experts at treating other hidden organisms that can look like Lyme.
Without an LLMD, I can share info gathered from top infectious disease experts, including my own doctor. That is, pulsed antibiotic therapy for a long time (1 to 2 years) with antibiotics that are capable of intracellular penetration and capable of attacking organisms that do not have cell walls. Common meds used for Lyme do that. Pulsed means once every other day, and good tools for that include Minocycline, Doxycycline, and Tetracycline. Really top-line docs have recognized that for some reason Tetracycline produces the best results.
This kind of treatment sometimes has to be entered blind without any proof of a diagnosis. Technology does not allow much proof in these things, and that is why infections usually get names like "Chronic Fatigue Syndrome", "Fibromyalgia", "Arthritis", when many of those same patients ultimately improve to 95% healed given longterm antibiotics. Or, let the person's illness continue to progress.
Treating something you can't prove or see is hard to accept. (but we do it 100% of the time in psychiatry and it seems ok there?) Going on a hunch and a cluster of symptoms causes hesitation, confusion, and doubt. But, what is the other option? Simple, do nothing and allow the person's life to continue to deteriorate. The blind treatment choice all of a sudden looks real good.
I have focused primarily on infectious organisms in this post, because the history does indicate mono is a provable suspect, and the environment, activities, history, and symptoms all point to Lyme. And quite frankly, outside of normal routine tests, I cannot think of anything else that causes those syndromes.
No body knows what causes chronic fatigue. All we do know, or at least about a hundred MDs anyway, is that several mystery diseases of that nature seem to nearly vanish on antibiotics. One can only guess what the invader was, and all they know for sure is they got well.
It is a tough road. Modern medicine I do not believe will be much help. You need a pioneering MD familiar with this stuff. When people get ill enough and fed up with worthless doctors, it is common for them to research, study, study, study, and treat themselves with easily ordered meds. In the process, they actually became 10 times the expert any doctor within 500 miles would ever be. Other than that, the only option is to try to lessen symptoms with things like stimulants, antidepressants, specific diets, and supplements. But even though the patient may feel somewhat better with these bandaids, the disease is free to progress.
It is just my opinion, but I believe everyone with a diagnosis of one of the above mentioned mystery diseases should find a cooperative doctor to engage in a longterm trial of pulsed Tetracycline. A Herx reaction near the start of treatment is highly diagnostic that you are on the right track. You may never know what the organism is, only that you are killing large numbers of an enemy.
In a perfect world hopefully some specific lab tests with show exactly what the problem is. If that doesn't happen though, take control. There is always tons of hope, but it requires action.
poster:bleauberry
thread:895816
URL: http://www.dr-bob.org/babble/20090515/msgs/895956.html