Posted by bleauberry on October 9, 2010, at 9:10:00
In reply to Re: all the king's horses » bleauberry, posted by floatingbridge on October 9, 2010, at 3:09:21
Cool. Hey, about LDN...you don't need to wait for more formal research. Thousands are already doing this and the ancecdotal evidence from participating clinicians and patients is overwhelmingly positive. It will take years for the slow researcher process to catch up with what is already known. That is, pain, fatigue, brain fog, and modestly mood are significantly improved in a vast majority of patients who try it. There is practically zero risk and practically zero side effects, being that the dose is only 1.5mg to 4.5mg....the smallest size pill is 50mg, just to put it in perspective. LDN is a no brainer. You just need the doc to call in a prescription to a compounding pharmacy. Good ones are listed on the LDN home page, as well as fillers to avoid and why.
It will likewise take years or decades for established medicine to catch up with the overwhelming anecdotal evidence that chronic infections are at the root of symptoms like yours. Since people are prescribed Doxycyline for months for simple things like acne, it is a no brainer to try it and see what happens It is wide spectrum and covers a lot of bases. You do not need to know in advance what infection you are dealing with, and in fact reliable testing for any of them are pitifully useless or nonexistent. Lyme for example often shows negative. That is, until after the patient has been on Doxy for a while....now there has been enough weakening and death of the organism to bring it out of hiding so the immune system and tests can see it...and thus antibodies to see that formerly were not prior to the antibiotic.
The primary purpose of the antibiotic is to make a diagnostic challenge. The reaction to it provides more useful data than 1000 tests. A Herx reaction indicates massive death of something is happening. Some people do not experience a Herx, but just improve. That's good indication a bacteria is involved. Some get nothing except common side effects such as diminished appetite or loose stools...that''s a pretty good indication a bacteria is probably not involved.
Doctors like to know in advance what they are treating before they attempt to treat it. With chronic pain and fatigue, that is impossible. Everything is experimental, including pain drugs, psych drugs, supplements, herbs, everything. The best minds and the best doctors cannot possibly know in advance where your symptoms are coming from. Thus it makes no sense to adhere to that strategy. It makes complete sense to do diagnostic challenges to gather information. Doxycycline happens to be one of several very good for that purpose.
These kinds of infections....mycoplasma, lyme, unknown....keep in mind this stuff is unseen and evolving/mutating at a faster rate than science can follow....clear slowly. They are deeply embedded in collagen tissue and glands and intracellular. Once a diagnostic challenge shows that a bacteria is involved, it typically takes 3 months to 15 months to completely resolve.
Here is an interesting story. My Lyme doctor did not set out to become a lyme expert. It happened by accident. He was a pain and fatigue specialist. Over the years he noted that most of his patients improved or remitted when on antibiotics for other unrelated reasons.
But Lyme is only a small part of the picture. There are dozens of possible enemies within. Here's an interesting story. A patient came in with pain and fatigue. Upon verbal questioning of history, the patient had no recollection of tick exposure. But it looked like Lyme. The patient did however remember getting a scratch on a barnacle while swimming, and that scratch developed a rash that took a long time to heal. The pain and fatigue set in after that. With no other available evidence, the patient was tried on Doxycyline with only a mere suspicion that maybe there was some weird bacteria involved with that barnacle scratch. Three months later the patient was 100% cured. Had a doctor wanted concrete proof, or a positive lab test, that patient would still be sick today.
We have to go on the best clues we have at the time. In your case, pain and fatigue point to bacteria. You may never know what bacteria or where they came from. And it doesn't matter. All that matters is you get better. Antibiotics are your best chance of doing that. LDN is also strongly supportive. It will not likely cure the problem, but has a reputation of stopping its progression and relieving symptoms.
You mentioned the Western Blot. That is the most accurate test at this time, but is still woefully inadequate. False negatives are frequent. Using a negative on that test to determine your course of action is about the same thing as sentencing an innocent person to a life in prison with no chance of parole.
The most accurate Western Blot is one that is done AFTER antibiotics have had a month or more, and then a couple weeks break. Then the test. Now if there are going to be antibodies, they will be there.
There is only one lab that specializes in the Western Blot and Lyme. They have the expertise, experience, and equipment that none of the other labs do. Choosing any other lab is begging for a negative result. The only lab you should use for a Western Blot is Igenex.
But even my lyme specialist rarely relies on the Western blot. It can help paint the overall picture, but is by no means the primary tool for diagnosis or course of action. Symptoms and history are what determine the course of action. He has seen the majority of pain and fatigue patients improve on antibiotics, and it's just that simple. Most may never know what they had. All they know is they got better on antibiotics. His favorite most successful approach in pain/fatigue is Tetracycline for months, followed by small ever increasing doses of Clindaymicin added to it until symptoms are gone. Patients don't just feel better, they are 95% or more cured.
Many of the non-lyme mysterious bacterial infections look exactly like lyme...pain, fatigue, psychiatric. And of course they will test negative for lyme, but are equally as devastating to your life as lyme. So if nothing else, a negative test for lyme means you might no have a lyme bacteria but instead some other kind of bacteria just as bad. No matter, it all points to the same place....antibiotics.
You mentioned T3. That has potential. One thing these infections do is secrete poop, pee, and toxins that clog receptors. You can have plenty of thyroid in your lab test, but hardly any getting into their receptors. T3 competitively displaces those toxins. Another easy cheap option to do try first is small amounts of Maca root powder, which stimulates/modulates/balances adrenal and thyroid action from the hypothalamus/pituitary glands all the way down to the adrenal and thyroid glands themselves. Got cold hands? See what a pinch a day of Maca root will do to raise your body temperature. Warm hands. Directly supportive of thyroid and adrenal.
> Bleauberry,
>
> Even my pdoc would agree with about not needing more brain drugs, and he is not at all keen on cymbalta or savella for me. He knows something in addition to depression is going on. You might have difficulty convincing him about antibiotics, buy he is open-minded....
>
> Stanford is doing two studies of interest--fibro and T3 and fibro and LDN.
>
> I visit a rheumatologist next week. We'll see if he thinks he can work with me. Even though I've had a number of tests (negative except for hashimoto's) there's more to come.
>
> I have had western blot (negative). If you think of any essential tests for infectious agents, please let me know.
>
> Thanks for your opinion. I appreciate it.
poster:bleauberry
thread:965018
URL: http://www.dr-bob.org/babble/20101009/msgs/965152.html