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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 Budzoid on March 10, 2009, at 21:35:18
First, this post does concern my mental health (and physical). At the suggestion of a few people, including Phillipa, I asked my PC doctor at the VA to get tested for late stage Lymes disease. I was certain that it would explain most of my problems. Everything seemed to "fit". The PC Doc. agreed and I was scheduled to see the infectious disease Doctor the next day.
After telling my story to him, THE EXPERT Doc. (name explained later),told me I was right to assume the connection. I was told I DID have many symptoms of the disease. This is where it gets interesting.
I was told the following: 1)my rash from a bite could be produced by any tick. 2)The southeast U.S. does not have ticks with Lyme. 3)my arthritis is probably from a neck injury I had when I was 8, and now that I was in my 50's, it was time for it to show up. 3)I do not have any heart problems except high blood pressure and a leaky heart valve.
I agreed that the arthritis statement could possibly explain that, but I still wanted the Western Blot test to eliminate any possibility. A negative result would ease my mind and maybe I could sleep at night without worrying.
I was then told not to worry, he was an ASSOCIATE of the CDC and he had the education and experience to say I did not need the test. He also stated: "if we did test and it came back positive, we would be opening a can of worms".(WTF???).
I left feeling THE EXPERT was only looking for reasons NOT to test, and ignoring all the reasons TO test.
This is obviously the VA's policy on the subject. Since I don't have the money or the insurance to get an outside opinion, it looks like I will never know if some or all my problems can be treated with simple antibiotics.
I guess I must learn to live with the following problems that do not respond to "regular" medicines or treatments: severe depression, obsessive-compulsive behavior, chronic pain from a stiff neck that is arthritic, not being able to read a book due to lack of concentration, neuropathy,and only being able to sleep in 2 hour spurts. FOREVER.
BUT, I'm not an EXPERT.
Posted by Phillipa on March 10, 2009, at 23:51:10
In reply to Turned down for Lyme test; what now?, posted by Budzoid on March 10, 2009, at 21:35:18
Oh I hope blueberry sees this post tomorrow. Looks like we're both in trouble as I did test positive on western blot. If you google CDC and lymes you will see that their policy is not to treat lat lymes too expensive. Not just the VA. T My Son just testified at the hearing in DC for Veterans concerning Agent Orange for Viet Nam Vets And They voted it down. Agent Orange Isn't responsible for the Vets problems? My Son also was exposed In Desert Storm. Off Topic sorry just I get angry. I think if you go to the health dept give them a call they might be able to get you tested. Make sure it's Western Blot though as other one Elisa tests false negative a lot. What state are you in? Tell the health dept whatever you need to to get tested. I was notified by the health dept here in NC that I was positive and was I being treated. So if they get results done in private docs offices they must also arrange testing. Some studies are showing it can be contagious also sexually. Did you know if you test positive for lymes you also test positive for syphylis?? Love Phillipa
Posted by Phillipa on March 11, 2009, at 0:05:11
In reply to Re: Turned down for Lyme test; what now? » Budzoid, posted by Phillipa on March 10, 2009, at 23:51:10
More than one page. Phillipa
http://www.labtestsonline.org/understanding/analytes/lyme/faq.html
Posted by bleauberry on March 11, 2009, at 16:15:47
In reply to Turned down for Lyme test; what now?, posted by Budzoid on March 10, 2009, at 21:35:18
Unfortnately half the battle against Lyme diseaes is with the political/economic/insurance beauracracy.
> After telling my story to him, THE EXPERT Doc. (name explained later),told me I was right to assume the connection. I was told I DID have many symptoms of the disease. This is where it gets interesting.
> I was told the following: 1)my rash from a bite could be produced by any tick. 2)The southeast U.S. does not have ticks with Lyme.Umm, excuse me, do not people from infected areas get in airplanes or cars and travel/move to infected areas? Do not ticks fly on the wings of birds?
3)my arthritis is probably from a neck injury I had when I was 8, and now that I was in my 50's, it was time for it to show up.
Yeah, I love these guys who know it all. Of course he knew it was going to be right on time showing up now. Sorry, arthritis is not a result of injuries decades ago. Arthritis is a result of joint inflammation. Infection is the primary cause of otherwise unprovoked inflammation.
3)I do not have any heart problems except high blood pressure and a leaky heart valve.
> I agreed that the arthritis statement could possibly explain that, but I still wanted the Western Blot test to eliminate any possibility. A negative result would ease my mind and maybe I could sleep at night without worrying.You couldn't be more wrong. The Western Blot is wrong 40% of the time. There does not exist an accurate test for Lyme. The Western Blot was originally designed by the CDC to survey Lyme in non-symptomatic people in an attempt to track it. It has always been experimental and flawed. According to the CDC itself, it is not intended or reliable for accurate diagnosis. That was not its purpose. Yet, the powers that be in ego-land have turned the Western Blot into a bible.
Whether you tested positive or negative is meaningless. Diagnosis is clinical, where the test itself is considered as part of the overall picture. The other parts of the picture are: History, Symptoms, Response to Trial Antibiotics.
> I was then told not to worry, he was an ASSOCIATE of the CDC and he had the education and experience to say I did not need the test. He also stated: "if we did test and it came back positive, we would be opening a can of worms".(WTF???).
Really? Like getting someone on a protocol to better health is a can of worms? Is that not their job? What, does he only take the easy straight forward stuff?
Hey, it isn't his fault. The CDC and all associated with it are indeed bound by very tight rigid rules in treatment protocols and diagnosis. They are the absolute worst ones to care for you because they have no elbow room to move. Even if you were diagnosed, they can't treat you longer than their own predetermined amount of time (I think it is 3 months, not sure?). It takes usually 9 months to 2 years. If the CDC treated you, you would leave still sick at the end of it.
> I left feeling THE EXPERT was only looking for reasons NOT to test, and ignoring all the reasons TO test.
Indeed. Political. Economic. Other interests come before you.
> This is obviously the VA's policy on the subject. Since I don't have the money or the insurance to get an outside opinion, it looks like I will never know if some or all my problems can be treated with simple antibiotics.
Can you not get a part time job? I mean, all you need is about $150 a month to pay cash for an LLMD who knows what the heck he's doing and has the freedom to do it, and the antibiotics which are cheap. A cashier at WalMart 4 hours a day would make almost $100 a week. That's all you need for a whole month.
> I guess I must learn to live with the following problems that do not respond to "regular" medicines or treatments: severe depression, obsessive-compulsive behavior, chronic pain from a stiff neck that is arthritic, not being able to read a book due to lack of concentration, neuropathy,and only being able to sleep in 2 hour spurts. FOREVER.
> BUT, I'm not an EXPERT.
>
>You need to TRY antibiotics. That is the only way to know for sure. You have to figure out a way to do that, either with a professional's help or on your own. The starting point is simple...Tetracycline 500mg 20 minutes before supper once every other day. See what happens. Most people will feel a lot better within a couple days, and then get worse when the Herx reaction hits, and then get better for real.
The normal dose is 500mg 3 times a day. All you need is 500mg a day or every other day to make a diagnostic test, to dip your toes in the water, so to speak, and see what the temperature is.
Whatever you do, do not succumb to the political machine. Take charge of yourself.
At the very least, spend a few days or a week studying everything you can find on the net about Lyme and LLMDs, and study Sam Donta, print out everything that supports your request to just do a trial of antibiotics without any testing, and then go back to that expert as an expert yourself and make that request.
Knowing where he stands, you have the upper hand. You can bring in research to shut down every single stance you know in advance he will take, and you will have it in writing in your hands for him to view. Not that it will necessarily get you treatment, he'll probably feel intimidated, embarrassed, or whatever. But you can do your part to further the cause of bringing medicine to a higher level.
Posted by Phillipa on March 11, 2009, at 23:52:30
In reply to Re: Turned down for Lyme test; what now?, posted by bleauberry on March 11, 2009, at 16:15:47
BB speaking of the establishment CDC see new link I posted below you will love it sarcastically said:) Phillipa
Posted by Budzoid on March 12, 2009, at 12:36:07
In reply to Re: Turned down for Lyme test; what now?, posted by bleauberry on March 11, 2009, at 16:15:47
> Unfortnately half the battle against Lyme diseaes is with the political/economic/insurance beauracracy.
> I am quickly learning this.
>
> > After telling my story to him, THE EXPERT Doc. (name explained later),told me I was right to assume the connection. I was told I DID have many symptoms of the disease. This is where it gets interesting.
> > I was told the following: 1)my rash from a bite could be produced by any tick. 2)The southeast U.S. does not have ticks with Lyme.
>
> Umm, excuse me, do not people from infected areas get in airplanes or cars and travel/move to infected areas? Do not ticks fly on the wings of birds?
> My thoughts exactly. Did someone put up a brick wall at the Virginia state line that prevents people and animals from "migrating south"?
>
3)my arthritis is probably from a neck injury I had when I was 8, and now that I was in my 50's, it was time for it to show up.
>
> Yeah, I love these guys who know it all. Of course he knew it was going to be right on time showing up now. Sorry, arthritis is not a result of injuries decades ago. Arthritis is a result of joint inflammation. Infection is the primary cause of otherwise unprovoked inflammation.
> I still find it hard to believe this one, because 1 year ago I seemed fine, except for a stiff neck that occured every 2-3 years and would go away in a couple of weeks with a little Valium for the muscle spasms. This neck arthritus only showed up this year. It has gotten so bad that I am now on heavy opiates for the chronic pain. I thought arthritis started slow and then got progressively worse; not all at once.
> 3)I do not have any heart problems except high blood pressure and a leaky heart valve.
> > I agreed that the arthritis statement could possibly explain that, but I still wanted the Western Blot test to eliminate any possibility. A negative result would ease my mind and maybe I could sleep at night without worrying.
>
> You couldn't be more wrong. The Western Blot is wrong 40% of the time. There does not exist an accurate test for Lyme. The Western Blot was originally designed by the CDC to survey Lyme in non-symptomatic people in an attempt to track it. It has always been experimental and flawed. According to the CDC itself, it is not intended or reliable for accurate diagnosis. That was not its purpose. Yet, the powers that be in ego-land have turned the Western Blot into a bible.
>
> Whether you tested positive or negative is meaningless. Diagnosis is clinical, where the test itself is considered as part of the overall picture. The other parts of the picture are: History, Symptoms, Response to Trial Antibiotics.
>
> > I was then told not to worry, he was an ASSOCIATE of the CDC and he had the education and experience to say I did not need the test. He also stated: "if we did test and it came back positive, we would be opening a can of worms".(WTF???).
>
> Really? Like getting someone on a protocol to better health is a can of worms? Is that not their job? What, does he only take the easy straight forward stuff?
>
> Hey, it isn't his fault. The CDC and all associated with it are indeed bound by very tight rigid rules in treatment protocols and diagnosis. They are the absolute worst ones to care for you because they have no elbow room to move. Even if you were diagnosed, they can't treat you longer than their own predetermined amount of time (I think it is 3 months, not sure?). It takes usually 9 months to 2 years. If the CDC treated you, you would leave still sick at the end of it.
>
> > I left feeling THE EXPERT was only looking for reasons NOT to test, and ignoring all the reasons TO test.
>
> Indeed. Political. Economic. Other interests come before you.
>
> > This is obviously the VA's policy on the subject. Since I don't have the money or the insurance to get an outside opinion, it looks like I will never know if some or all my problems can be treated with simple antibiotics.
>
> Can you not get a part time job? I mean, all you need is about $150 a month to pay cash for an LLMD who knows what the heck he's doing and has the freedom to do it, and the antibiotics which are cheap. A cashier at WalMart 4 hours a day would make almost $100 a week. That's all you need for a whole month.
> I do work fulltime, but only make enough to barely get by. My wife is on full disability for chronic fatigue/fibromyalgia. Even with that extra income, I come up short sometimes. It is becoming increasingly more difficult to work at the job I have now. Throw in the heavy opiates, and I doubt anyone would hire me for a second job right now.
> > I guess I must learn to live with the following problems that do not respond to "regular" medicines or treatments: severe depression, obsessive-compulsive behavior, chronic pain from a stiff neck that is arthritic, not being able to read a book due to lack of concentration, neuropathy,and only being able to sleep in 2 hour spurts. FOREVER.
> > BUT, I'm not an EXPERT.
> >
> >
>
> You need to TRY antibiotics. That is the only way to know for sure. You have to figure out a way to do that, either with a professional's help or on your own. The starting point is simple...Tetracycline 500mg 20 minutes before supper once every other day. See what happens. Most people will feel a lot better within a couple days, and then get worse when the Herx reaction hits, and then get better for real.
>
> The normal dose is 500mg 3 times a day. All you need is 500mg a day or every other day to make a diagnostic test, to dip your toes in the water, so to speak, and see what the temperature is.
>
> Whatever you do, do not succumb to the political machine. Take charge of yourself.
>
> At the very least, spend a few days or a week studying everything you can find on the net about Lyme and LLMDs, and study Sam Donta, print out everything that supports your request to just do a trial of antibiotics without any testing, and then go back to that expert as an expert yourself and make that request.
>
> Knowing where he stands, you have the upper hand. You can bring in research to shut down every single stance you know in advance he will take, and you will have it in writing in your hands for him to view. Not that it will necessarily get you treatment, he'll probably feel intimidated, embarrassed, or whatever. But you can do your part to further the cause of bringing medicine to a higher level.
> I had done a fair amount of research before my visit. It would not have mattered. As soon as I heard the words "associate of the CDC:, I knew then what the outcome would be. Also, he could tell I had done research because I knew the names of the bacterium, the tests, treatments, and such. He remarked "the internet is great for learning, but don't believe most of what you see". You could tell he had given this speech many times before.
I have a Doc. outside the VA that I see sometimes and he probably will put me on a trial of antibiotics. I plan to try.
>Sorry for the long post, I wanted to respond to a few things. Shine On!
Posted by bleauberry on March 12, 2009, at 16:02:25
In reply to Re: Turned down for Lyme test; what now?, posted by Budzoid on March 12, 2009, at 12:36:07
Very cool. I'm so excited you went into the guy's office armed with knowledge. Had he confronted me on something I learned on the "internet", I would have said, "what have I presented to you here today that is not medically true?" "If I've learned something wrong on the internet, tell me exactly what part was wrong, why it is wrong, and direct me to where I can research your response."
Doctors like him are no different than Judges who sentence criminals to life in prison, except that you didn't do anything wrong. You were completely innocent yet convicted to serve a life sentence without any chance of parole.
So I am very excited to hear you have the possibility to see another doctor who may be more cooperative. I hope he understands, you don't need proof of Lyme to have it. The best proof is seen on antibiotics. You are well schooled on this and I am so excited about that, so I am know I'm not telling you anything you don't already know.
Just know you have a fan club supporting your fight, and I'm a big fan of what you are doing.
I couldn't help but notice, your partner has Chronic Fatigue and Fibro. I also couldn't help but recall how my LLMD said he became an expert on Lyme when as a pain/fatigue specialist he saw most of his patients getting well from these mysterious diseases on the strangest drugs...antibiotics.
It kind of makes me wonder if this is not just about you, but your wife also. CFS and FM are diseases of inflammation and immune dysfunction. Can you think of any greater cause of those two things than an unseen chronic infection? I can't.
All I know is that while my doc's CFS and FM patients come from doctors who were treating them with pain killers and stimulants and psych meds of all kinds, which only address some of the worst symptoms, he instead treats them with antibiotics. The majority of them say bye-bye to their longterm diseases. Who knows why and who cares. They just get well. Diseases that have no known cause and no known cures are in fact cured.
This is the end of the thread.
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