Posted by bleauberry on May 3, 2010, at 17:35:43 [reposted on May 4, 2010, at 1:18:26 | original URL]
In reply to How to accurately diagnose Lyme disease? (bleauber, posted by Walfredo on May 3, 2010, at 1:25:29
You are correct it is a controversial subject. There are so many mysteries involved. We are just now beginning to see the magnitude and ramifications of the various organisms transmitted by ticks, and sometimes mosquitoes.
And it is a long story to explain all the ins and outs. Entire books are written on the topic. I couldn't possibly do it here.
Here's what it comes down to for a diagnosis.
1. Review the symptoms. Are they consistent with Lyme? The ones you described are, but they could also be from many other things. But they are consistent. My doctor said some of his patients had ONLY depression or brain fog as their Lyme symptoms, with none of the other more common symptoms. They recovered on ABX, not psych meds, though psych meds can be helpful during the journey. I was a bit easier to suspect Lyme because I had known tick bites and I had 31 of the Lyme symptoms, which is nearly all of them.
2. Review history. Ever lived in a tick area? Any known tick bites? Ever had the strange rash? A strange flu that you never quite totally recovered from? Some people are infected by ticks so small they couldn't be seen. They never knew they were bit and never got a rash. But still, history is helpful.
3. Western Blot lab test, but ONLY by Genetex Lab. Don't have any other lab do it. They are specialists at this and have tools and experience other labs don't. It is a deceptive smart disease, and takes all the expertise possible to uncover it. Still, false negatives abound. Kind of like an innocent prisoner being sentenced to life without parole. Long story. All scientifically explainable in plain english, but lengthy. The Western Blot needs to look for Borrelia, Bartonella, and Babesia, all three. Most doctors only specify Borrelia. Again, long story, big mistake.
4. ABX trial, even if done blindly on a hunch. Actually, especially for those who are getting negative test results and cold shoulders from the doctors, the ABX trial is where it's at. Profound improvement, or profound worsening (the Herx reaction) are both strongly diagnostic. These antibiotics basically just give a healthy person maybe some diarrhea or constipation, maybe some nausea, no big deal. Someone infected however is going to have every so-called "side effect" in the book times 10. Not side effects actually, but the direct effect of death going on in mass within you at such a rapid rate you can't clean it out fast enough.
A common pattern is to feel better almost immediately (bugs paralyzed), then get a lot worse (bugs being killed), and then slowly start improving (the infection load is lessening).
In my opinion, and my doctor's, nothing is more diagnostic than a trial of Tetracycline or Doxycycline to see what happens. Stronger ABX are available, so these two are for sensitive people like me. It is rare to have a concrete diagnosis of Lyme before an ABX trial. There are usually hunches or suspicions, but not very often do we have concrete surety. A trial of ABX is as close as it gets to being sure.
It is interesting how negative Western Blot tests can be turned positive (if indeed Lyme is present) following a course of ABX. As the bugs are weakened and killed they are brought out of hiding, and now for the first time in a long time your immune system can see them and so can the tests.
Whether your doctor is an LLMD (Lyme literate) or not, it is extremely important to have a doctor that understands disease is complex and mysterious, especially Lyme, and that he is open to learning along with you during the journey. A close minded doctor, one who thinks he has all the answers, the one who says you don't have Lyme based completely on a negative Western Blot, that doctor could very well be your death sentence. One who says he will not give you a trial of ABX, well, it's time to seek one who will. Doctors who know Lyme do it all the time. It's part of the diagnosis.
What meds are helpful along the way? Well, the same ones we talk about here every day. SSRIs, SNRIs, stimulants, benzos, APs. My doctor's most useful med he claimed is Gabapentin, though it is imperative it is brand only, not generic. His favorite ADs were Lexapro and Zoloft, with additional TCA for sleep or enhanced effectiveness. I disagreed with him on the SSRI thing, but he has the experience, not me. Gabapentin for some weird reason seems to span a wide range of symptoms in Lyme.
I tried to keep it short, but's it's hard. I hope this is helpful.
The primary reason I touch on this subject frequently is because it just so happens that one of the most common complaints in Lyme are difficult-to-treat psychiatric symptoms. There is a pamphlet called "What Psychiatrists Should Know About Lyme Disease." I dare say hardly any have ever read it. In it, one of the more common things that should raise Lyme suspicion with a pdoc is an unexplained "brain fog".
But of course, as you'll see all over the internet and I have experienced firsthand myself, that brainfog and depression and fatigue can also be Candida. Looks a lot like Lyme. Much easier to treat. Diflucan for a few weeks, maybe some backup antifungal herbs. Even harder than Lyme to diagnose, but easier to demolish. Again, the primary diagnostic tool is a blind trial to see what happens.
Compared to just about any other meds on the market, these blind trials done in short bursts have very low risk but very high potential.
Since you mentioned brain fog as an issue, that's why I kind of narrowed in on that.
Some would say, "but brain fog is a symptom of depression". To that I would say no, depression is not a disease and brain fog is not one its symptoms. I say instead that brain fog and depression are both symptoms that happen to occur simultaneously as a result of something else gone wrong. They are not the actual disease. They are the outward symptoms of a problem.
That in itself is controversial depending on who you talk to, so we are right back where we started...it is a controversial subject. There much we don't know. There is need for much more research. I don't see that happening in our lifetimes. Within that scenario, the above mentioned diagnostic tools are our best friends at this time in medical history.
poster:bleauberry
thread:946219
URL: http://www.dr-bob.org/babble/health/20100104/msgs/946222.html