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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by Walfredo on May 4, 2010, at 1:18:25
ry, I'm especially hoping to hear from you on this topic.)
Without going into a deep personal background, I am still "searching" for answers regarding why I can't seem to feel well.
At the very least, I'd like to rule it out as a potential cause or contributor to my symptoms of fatigue and "brain fog".
It seems like a somewhat controversial and disputed illness from the cursory seach I have done online, so I really don't know what to make of it.
bleauberry, I know you are a big believer in it being a vicious and underdiagnosed illness, so I would definitely like to hear what you have to say on the matter.
Anyone with experience or knowledge, please share.
Thanks in advance,
Alex
Posted by conundrum on May 4, 2010, at 1:18:25
In reply to How to accurately diagnose Lyme disease? (bleauber, posted by Walfredo on May 3, 2010, at 1:25:29
The new pdoc I am seeing recommended I get tested for it, cuz of my cognitive problems and joint pains. So that atleast tell you that mainstream psychiatrist take it seriously. She wants me to get a blood test for it.
Posted by Phillipa on May 4, 2010, at 1:18:25
In reply to Re: How to accurately diagnose Lyme disease? (bleauber » Walfredo, posted by conundrum on May 3, 2010, at 12:08:42
Start with a Western Blot for Lymes Disease not the Elisa it's very inaccurate. That will be a good indicator as I had lymes and still test positive seeing infection control doc again. No arthritis joint pain just back pain from osteo arthristis and osteoporois. Phillipa
Posted by bleauberry on May 4, 2010, at 1:18:26
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.
Posted by Phillipa on May 4, 2010, at 1:18:26
In reply to Re: How to accurately diagnose Lyme disease? (bleauber, posted by bleauberry on May 3, 2010, at 17:35:43
Seriously I guess although my Western Blot x2 done recently that had six positive bands is the post infection or the IGG just remaining elevated for many years as what infection doc had explained. As after 45 days of doxycycline again 200mg a day. No Herx, no feeling better or worse, actually just the same. I stopped the doxy as I'm supposed to have some surgery if potassium isn't high on this test had done today as was .3 above normal one lab never heard of and Lab Corp was in the middle of normal. Don't want Cardiac, kidney, or Addison's So hopefully will find out tomorrow and for now lay lymes to rest for the second time. Phillipa ps no brain fog either.
Posted by Walfredo on May 4, 2010, at 1:18:26
In reply to Re: How to accurately diagnose Lyme disease? (bleauber, posted by bleauberry on May 3, 2010, at 17:35:43
bleauberry,
Thanks for the informative response. I learned a lot and am hopefully getting close to getting some answers.
Any idea how I would go about getting the Western Blot lab test by Genetex lab? Are these labs pretty widespread? Do you go in to see a "normal" doctor and have them ship blood samples to the lab?
Again, thanks a ton for the thoughtful reply. I'm sure you have helped more people than you know with your caring attention to their queries.
Best wishes,
Alex
Posted by Walfredo on May 4, 2010, at 2:32:28
In reply to Re: How to accurately diagnose Lyme disease? (bleauber, posted by Walfredo on May 4, 2010, at 1:18:26
Also bleauberry,
I read this from a previous thread you had posted in:
"Has the ND given you challenge doses of Oregeno Oil, Grapefruit Seed Extract, Cat's Claw, Wormwood/Black Walnut Hull extract? Those would be taken to see if you become flulike or feel worse in a few days...malaise, aches, unwell. If so, that is significantly diagnostic of hidden infection. Either yeast (Candida), Lyme, or Lyme-like cousins, depending on the herb that was killing it. The yuck feeling is the mass die-off called a Herx reaction. It is the easiest quickest surest way to find hidden critters that lab tests can't. Overgrowth of gut yeast is in my opinion epidemic due to the high sugar content of typical diets, and a common symptom is low level depression or dysthymia. "
Are these "challenge doses" something that you think it might be prudent for me to try?
This is the end of the thread.
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