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10/23/2010 04:00 PM

Few docs recognize "chronic" lyme disease

Bettyg
 
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Few docs recognize "chronic" lyme disease

RDaywillcome

LymeNet Contributor

Member # 21454

posted 10-22-2010

08:47 PM

http://www.reuters.com/article/idUSTRE69L58A20101022

Lymetoo

Moderator

Member # 743

posted 10-22-2010

08:50 PM

(Reuters Health) -

Despite lots of media attention, "chronic" Lyme disease is only recognized by a small group of doctors in Connecticut, where the tick-borne infection was first discovered.**

That's according to a new statewide survey, reported in the Journal of Pediatrics, that found just two percent of doctors in Connecticut said they had diagnosed and treated the controversial chronic version of the disease.

If you are online a lot, "you think every doctor in Connecticut believes in chronic Lyme," said Dr. Henry Feder, of the University of Connecticut Health Center in Farmington, who worked on the study.

"What the poll shows is that's not true," he added.

Most medical groups agree that Lyme disease should be treated with antibiotics only for a few weeks, but some doctors and patient groups argue that longer treatments, lasting months or even years, may be necessary if symptoms linger.

Compounding the scientific controversy over whether chronic Lyme disease actually occurs, Connecticut's attorney general sued the Infectious Diseases Society of America (IDSA) two years ago for barring physicians who advocate longer treatment courses from a guidelines panel.

While the guidelines were upheld by an independent review panel last April, that didn't end the debate.

"There is a very small number of doctors who are very active on the Internet as well as politically and have a different point of view than the evidence dictates," said Feder, who is a member of the IDSA but was not involved in establishing the guidelines.

According to the National Institute of Allergy and Infectious Diseases, rigorous clinical studies have shown that prolonged treatment is of little benefit to patients who have no signs of infection, but still suffer from fatigue and headaches.

Apart from making patients prone to diarrhea and fungal infections, long-term antibiotic treatment can also lead to serious infections if it's delivered by an intravenous line.

According to the Centers for Disease Control and Prevention, about 38,000 confirmed or probable cases of Lyme disease occurred in the U.S. in 2008, mainly in Wisconsin, Minnesota and the Northeast where the ticks that carry it are widespread.

In Connecticut, the rate translated to about 78 cases per 100,000 residents.

When diagnosing Lyme disease, doctors look for a red skin rash that is often found at the site of the tick bite and may also do a blood test for antibodies to the bacteria that causes the illness, called Borrelia burgdorferi.

If they find nothing, but still diagnose Lyme disease, they may actually be missing another severe disease, said Feder.

"If someone is going to get IV therapy for Lyme disease, there are dangers involved and they should get a second opinion," he said, adding that Lyme disease is usually treated with only one antibiotic, such as doxycycline, taken by mouth.

He found half of the 285 doctors who answered his poll didn't believe in the existence of chronic Lyme disease.

Slightly fewer said they were undecided, but did not diagnose or treat the chronic version.

While the results could be swayed by the fact that many doctors chose not to respond to his mailed survey, Feder said he believed the findings were reliable.

Dr. Daniel Cameron, an outspoken opponent of the IDSA guidelines and past-president of the International Lyme and Associated Diseases Society, which was formed by advocates for chronic Lyme disease, could not be reached for comment.

Lyme expert Dr. Raymond Dattwyler, of New York Medical College, said he wasn't surprised by the poll results.

"Chronic Lyme disease is just not accepted by the vast majority of physicians," he told Reuters Health.

"The majority of people who get the diagnosis of chronic Lyme disease have either depression, fibromyalgia or another chronic illness."**

"If you look at the symptoms that they report to be associated with chronic Lyme," he added, "population studies have shown those are very common complaints among the general population."

"The tragedy is that sometimes really serious, treatable diseases are ignored." (--like what?)

** pretty crazy, huh!!?

--------------------

RDaywillcome

posted 10-22-2010 09:15

Don't know what these so called docs are trying to deny (hide) but the truth will prevail!

Misfit

LymeNet Contributor

Member # 26270

posted 10-22-2010

09:37 PM

"population studies have shown those are very common complaints among the general population."

A loud, resounding, NO! I do not believe this. I don't know ANYONE who has the same complaints that I have, aside from the people on this board and others like it.

People who have CFS, FM, MS or other autoimmune syndromes have some of the same complaints. And we all know what their problem could be.

I'd like to know what so-called "studies" they're referring to?

ThatColorGreen

LymeNet Contributor

Member # 16016

posted 10-22-2010

11:19 PM

"The tragedy is that sometimes really serious, treatable diseases are ignored."

yea, like LYME itself!!

...took 15 years for a doc to finally figure it out... 22 @ the age of my diagnosis... I am alive only because of what he did for me.

the truth is coming into the light. It may not be as quick as it needs to be, but it's coming, nevertheless.

onbam

LymeNet Contributor

Member # 23758

posted 10-23-2010

01:47 AM

---------

"...humanity becomes more obscene for the vague resemblance."

RDaywillcome

LymeNet Contributor

Member # 21454

posted 10-23-2010

11:44 AM

It came from here.

http://www.reuters.com/news/health

It made it on MSNBC. How about some comments and let them know that these jerks don't know what they're talking about!

http://www.msnbc.msn.com/id/39803194/ns/health/

*************************

39 comments below

jklaser

Chronic Lyme disease is the newest pidgeon hole for patients who used to "have" fibromyalgia, and that "disease" was the follow up to chronic fatigue syndrome.

Most of these people are not ill, they just complain. There is no objective measurable test for any of these so called diseases/syndromes.

You must have a diagnosis to get insurance to pay for the treatment, otherwise you are NOT ill.

#1 - Fri Oct 22, 2010 6:53 PM EDT

Heather-567681

Agree. If all the screening tests for Lyme are negative...then your achiness/headaches/exhaustion and whatever else are caused by something else.

1 vote#1.1 - Fri Oct 22, 2010 6:58 PM EDT

Kris-2548993

The issue IS the testing.

Standard Lyme disease testing is only 65% accurate; this standard of testing would not be accepted for any other ailment.

Imagine a doctor giving you a diagnosis of cancer, for example, based on a test that's 65% accurate.

And just for the record, I have never experienced chronic lyme disease myself, or any of the other "complainer" diseases.

#1.2 - Fri Oct 22, 2010 10:43 PM EDT

jkatze

I can be reached for comment and I believe I have Lyme disease that periodically flares. I've read the opinion on both side of the debate and the opposition offers nothing to account for my recurring symptoms.

The latest, and worst, is an extremely painful cyst in my knee. These cysts have been proven to be caused by and harbor Lyme spirochetes.

Despite 5 month living with constant pain and a reduction in mobility that prevents me from working--my job requires agility at the very least--I cannot find a doctor to treat the cyst.

Kris you're giving the ELISA test too much accuracy. According to the American College of Pathologists, it is accurate merely 45% of the time.

#1.3 - Sat Oct 23, 2010 2:30 AM EDT

Jen M-2549480

I recently tested double positive for lyme on the standard Elisa and Western Blot tests and the CD 57 and have been chronically ill for over 15 years.

What I have found is that doctors are now agreeing that fibromyalgia and chronic fatigue are multiple infection syndrome

in addition to a person possibly having lyme bacteria, they most often have an overload of several coexisting infections such as Epstein Barr and others.

As far as this not being real, I can assure you I would do ANYTHING to get better and ride my horses and be active with my kids again!

As for testing, it is true that adrenal and thyroid issues accompany multiple infection syndrome and are testable, but another good test is the tilt table test.

Many doctors are finding their fibromyalgia patients will have quite a significant drop in blood pressure upon

rising. (Mine drops 20 pts. currently.)

Furthermore, one can also easily examine blood under a dark field microscope and see the lyme spirochetes.

Lastly, multiple infection syndrome including lyme disease also can cause mitochondrial (the batteries of the cells) failure issues which can account for the inability to have quality energy and the need to physically recharge after any exertion.

For those who are ill, DO NOT GIVE UP and do not let anyone tell you that this is in your head (as some of my doctors did initially)!

It sucks that our medical system is so political and money oriented and not focused on quality whole person care.

Nevertheless, there truly are millions of people suffering from an overload of infections (and toxins) who can recover as long as they receive the right care and support!

One might also want to google Transfer Factors (the good stuff from egg yolk, colostrom, and immune supporting nutrients) as well as they have been showing significant results for years in helping chronically ill people recover their energy and function.

I WISH GOOD HEALTH TO YOU ALL! Life is too short to suffer through it!

#1.4 - Sat Oct 23, 2010 3:59 AM EDT

witchrunner

Hmmm..... I wonder how my nephew feels about all the problems he's had for the past 10 years being just a figment of his imagination.

He used to be very active, doing triathlons, road races, etc.

Now he struggles at less than half the energy he had, not to mention the physical problems, headaches, etc.

But, I guess it is good to know that all he has to do is think positive and it will go away.

2 votes#2 - Fri Oct 22, 2010 7:14 PM EDT

kacky

Has he been to a rheumatologist yet? I was sick for 12 years til I got a diagnosis of psoriatic arthritis.

2 votes#2.1 - Fri Oct 22, 2010 7:30 PM EDT

********

lexiwords2

It is my understanding that Lyme disease can cause arthritic changes.

1 vote#2.2 - Fri Oct 22, 2010 9:09 PM EDT

Independent Thought

Although it is moving pain, without any deformation.

#2.3 - Fri Oct 22, 2010 9:29 PM EDT

rpearlston

Independent Thought, that doesn't rule out some of the more than 100 different types of arthritis.

I have three types, and each of them affect just about every part of my body.

But they don't affect every part of my body all the time. Some days, and for that matter, some hours, one joint, one body part, may be causing me a lot of pain.

Sometimes it's another joint or another part. Sometimes it's all over, and sometimes everything is a bit sore but nothing is painful.

This is what happens when you have even one type of arthritis. Yes, that includes having "only" osteoarthritis, but in more than one joint.

And if even one of your types of arthritis is inflammatory, then it can take anywhere from weeks (aggressive rheumatoid arthritis) to years, even at times, decades (ie, psoriatic arthritis), for the damage to show up on x-rays.

Been there, done that, and I'd like to throw out the #$)(#*$ T-shirt.

#2.4 - Sat Oct 23, 2010 1:39 AM EDT

Independent Thought

I was diagnosed as having fibromyalgia, although it is just a name for a collection of symptoms, I was instructed to take anti-inflammatory, anti-anxiety and anti-depressants as treatment. Goodness.

Didn't fill the scripts. I moved to alternative care at that point in time.

I did test positive on the Lymes test CD 57, which is covered by insurance, via an MD who focus's on finding the cause not treating symptoms.

I used glutathione to detox, supported my adrenals and thryoid, with great results.

Anyone who has fatigue, speech issues, brain fog, aching, headaches, etc. needs to ensure their adrenals are well (possibly needing better sleep, supplements, hormone therapy and reduction of stressers), and more importantly thyroid function testing.

Dr. Lowe (google his work) has done extensive work with fibro, chronic fatigue, and has found hypothryoid (BTW: standard normal lab ranges are too broad) as often the underlying issue.

Once I got on the correct dosage of armour thyroid(with both T3 and T4), and a TSH range close to 1.5, all my issues went away.

Was it only adrenal and thyroid issues or chronic lymes?

Maybe the lymes created the adrenals and thyroid issue, or not? Personally, I really don't care, now that I feel great.

1 vote#3 - Fri Oct 22, 2010 8:06 PM EDT

lin-2548622Deleted

lexiwords2

those who deny chronic lyme disease have never experienced chronic lyme disease

2 votes#4 - Fri Oct 22, 2010 8:54 PM EDT

Independent Thought

TRUE! Bless you Lexiwords2. It is a tough situation, especially depending on the infection load.

1 vote#4.1 - Fri Oct 22, 2010 9:25 PM EDT

rpearlston

Those who claim to have chronic Lyme diseae have doctors who are too lazy to find the real reason for their symptoms.

If you really want to feel well again, CHANGE DOCTORS!

#4.2 - Sat Oct 23, 2010 1:42 AM EDT

jkatze

I did. I found a doctor who doesn't believe he is God and actually listens to his patients.

The only thing that accounts for my constellation of symptoms is Lyme disease.

I'm on my third course of antibiotics in 5 months and, aside from my knee, I'm starting to feel improvement.

The lazy docs are the ones who won't listen to their patients and want an easy, tidy quick fix.

#4.3 - Sat Oct 23, 2010 2:40 AM EDT

rpearlston

jkatzw,

Lyme disease is NOT the only illness that accounts for those symptoms. That's my point.

The list of all of the possible symptoms of "chronic" Lyme disease mirrors the lists of some other problems, including some of the less-well known types of arthritis.

The lazy doctors are the ones who listen to their patients and don't want to understand that the patient has self-diagnosed by searching the internet for a name of something that seems to fit their symptoms.

I'm not saying that you necessarily did that, but did you have in mind that you had a particular problem when you first saw that doctor?

Even that can influence the diagnosis of a lazy doctor because it influences what you say to that doctor. it points that doctor in the direction of your untrained opinion.

#4.4 - Sat Oct 23, 2010 12:23 PM EDT

Holly*

EXACTLY!!!!!

#4.5 - Sat Oct 23, 2010 5:53 PM EDT

rediagnosed

My husband received a positive lyme diagonosis 4 years ago. He had a rash and a high fever.

After the recommended treatment we were told he was cured, but no tests were run to prove this.

Since then he developed afib (irregular heartbeat) which is being treated. He has also gone through 6 weeks of physical therapy on his shoulder.

The pain can come and go and the therapy was not successful. His hips, knees, and feet have also become almost crippling on certain days.

The drugs that his doctor's prescribed have not appeared to work, and through all of the doctor visits we had asked if lymes could be a factor and NO one would re-test him.

Last month we went to a llmd (lyme literate, medical doctor) who finally retested him, and yes he has active lymes!

It is difficult not to resent the attitude of the traditional medical community, including the author of this article, with what our experience has been.

#5 - Fri Oct 22, 2010 9:32 PM EDT

rpearlston

And a rheumatologist said what?

There is such a thing as infective arthritis, and there is such as thing as reactive arthritis. Both, if not properly treated, will continue to cause pain.

So again, what did his rheumatologist have to say??

#5.1 - Sat Oct 23, 2010 1:45 AM EDT

marika-2453027

It's interesting they would say people have fibromyalgia, since it wasn't that long ago they swore that disease didn't exist either.

A lot of people suffer for years because medicine claims to be a science when it's really a load of politics, posturing, and pandering.

#6 - Fri Oct 22, 2010 9:46 PM EDT

rpearlston

A century ago, there was no names, no known causes, and no management tools for multiple sclerosis, for myasthenia gravis, for sickle cell anemia or for many, many other illness.

Today, we know better about them.

Tomorrow, we'll know more and better about FM and CFS, in addition to knowing more about all auti-immune disorders.

THat's not politics. That's not posturing. That's not pandering. That's SCIENCE, and it's not the four-letter word that you seem to believe it to be.

#6.1 - Sat Oct 23, 2010 1:49 AM EDT

marika-2453027

See, I agree with your basic premise there. Heck, it wasn't that long ago that they were bleeding people to death in order to cure them of the flu.

But even that wasn't science of the time. It was a power play. There was perfectly good medicine to be had from the herbalists and natural healers, but the medical doctors knew better.

Nothing has changed today. You say there were no names for certain diseases, and that is a very telling remark.

Medical psuedo-science makes up complicated-sounding names and then pretends they know what they are talking about.

"Ms. Jones, you have colitis. Take these pills."

Now I ask you, what does the name colitis actually mean? Inflammation of the colon.

LOL Ms. Jones hasn't been told one dang thing she didn't already know. And the pills don't cure anything -- they just suppress the symptoms in order to trick Ms. Jones into thinking she is better.

And the doctor appears to know what he is talking about, when in fact he knows nothing and isn't ever going to try to find out.

There are two key questions that will never get answered because medical "science" has no answer:

1. Why is Ms. Jones' colon inflammed?

2. What will actually support her body in its attempt to heal its inflamed colon?

As for diseases like fibromyalgia, chronic fatigue, etc., you make it sound no harm-no foul on the part of doctors.

Just ask a woman who has suffered for 15 years while being told there was nothing wrong with her and she was just a malingerer.

Ask one whose family believed the doctor and disdained her while she was in such pain she cried while trying to dress herself.

It happened to a close friend, and in doing research for her, I read stories from many other women.

Medical doctors are among the most despicable people on the face the earth. They always were.

They are egomaniacs by nature -- they care about money and prestige. Those TV docs aren't real.

#6.2 - Sat Oct 23, 2010 8:34 AM EDT

rpearlston

Just ask a woman who has suffered for 15 years while being told there was nothing wrong with her and she was just a malingerer.

JUST 15 years? That's not all that long, compared to myself and to many others.

And for the record, FM is NOT a gender-specific problem.

Who said I was talking about TV doctors?

But you keep saying that just because something isn't known at any given point, it will never be known, and that's wrong.

Doctors are limited not bye their own attitudes (well, most of them), but by the level of medical knowledge that's current at any particular point.

But research is ongoing, so that medical knowldge is constantly expanding.

The questions that you posed about "Mrs Jones" are actually questions that are on the verge of bing answered.

That's because the research into the genetics of auto-immune illnesses is ongoing, and is that close to finding causes and then finding ways to turn off the process. You can check on that here:

http://www.uhnres.utoronto.ca/studies/cpsrd/

You seem to be a major cynic when in comes to medical science. Is that always the case or is that you simply don't believe in science?

#6.3 - Sat Oct 23, 2010 12:36 PM EDT

marika-2453027

Oh, I believe in science. I just don't believe the practice of medicine by allopaths has much to do with science.

Perhaps you don't feel 15 years of suffering is worth mentioning.

Because of the hubris and arrogance of the doctors, she was not able to get disability, her husband eventually left her because he was convinced she was just irresponsible, and even her teenage children were encouraged by the diagnosis of the "experts" to resent her.

In other words, these scum-bums destroyed her life because she was sick with a disease the know-it-all's didn't recognize.

It's not that they didn't know what they didn't yet know. It's that they can never admit they don't know something, especially when the patient is a woman.

They can't say: we can't figure out what's wrong with you. Instead they say:

there's nothing wrong with you, you're just dysfunctional, take Prozac.

"Major cynic" doesn't even begin to describe my opinion of these criminals.

#6.4 - Sat Oct 23, 2010 1:55 PM EDT

lexiwords2

Rediagnosed and Ind Thought, I hope you have both found at least pallative measures.

Gentle massage also helps and if you're not allergic I'd try arnica and or sweet birch essential oils added to the massage oil.

See an aromatherapist for a good massage mixture of not more than 30 drops total essential oil per ounce of carrier oil ( I have much experience and education in this). Use sparingly and test for allergies first.

Bless you both

#7 - Fri Oct 22, 2010 9:51 PM EDT

Kris-2548993

What poor journalism. Did you interview anyone on the other side of this debate?

#8 - Fri Oct 22, 2010 10:36 PM EDT

Pseudothink

I had Lyme disease when I was 14. I was on a Boy Scout camping trip about 20 miles from Lyme, CT, and found a few ticks of various types crawling on me (but never noticed any feeding) during the course of the trip.

I developed a rash soon after the trip, which evolved into a classic bullseye rash over the next day or two, then I got two or three more elsewhere on my body.

The bullseye rash is the single most reliable symptom used to diagnose Lyme.

My pediatric doctor didn't believe it was Lyme, but my mom made him give me doxycycline for it, which I took for 9 days. The rash went away, though I did develop a fever.

Now I'm 33. I've had issues with fatigue, depression, persistent headache, and cognitive function ("brain fog" would be an appropriate description) since I was an adolescent (soon after contracting Lyme).

These issues developed slowly over time, and often would go through cycles of getting worse & better.

Last year they finally got bad enough (mostly the fatigue and cognitive issues) where I realized that I was having trouble even doing basic tasks at work, and never had the energy to go to the gym any more.

I suspected Lyme and sought treatment for it. I found an LLMD to test and treat me for Lyme.

I had numerous tests done (iGeneX Lyme & coinfection blood tests, CD-57 NK, and others).

The Lyme tests repeatedly showed a few weak or indeterminate positives on bands specific for Lyme, and a positive on the common 41 kPa band).

The CD-57 showed rather low counts (98 once, then 64 the second time) of NK cells.

I had *no* test results (past or present) that were positive for Lyme.Based on these results, my history, and my clinical symptoms, my LLMD treated me for Lyme disease with several antibiotics over the course of 11 months.

Zithromax, Metronidazole, Doxycycline, Penicillin-G, Rifampin, Mepron, and Alinia.

I was on three or more of these simultaneously for at least six months, and on five for the final few months.

I tracked my symptoms carefully, several times per day for the entire period.

I would occasionally show significant improvement for up to a few days, but overall, I did not get any better, and (if anything) felt worse.

I went for an expensive second opinion evaluation at Columbia Medical Center in May, 2010.

Based on their evaluation, and the fact that I hadn't improved after 11 months of antibiotics, they strongly suggested that I stop the antibiotics and that I probably didn't have Lyme.

Shortly before this, one of my other doctors had the idea to check me for food allergies and gluten sensitivity.

My results showed broad spectrum food allergies (dairy, soy, eggs, nuts, beef, and others), as well as several indicators for gluten sensitivity.

I can't be sure if the allergies were caused/triggered by the antibiotics (see "Leaky Gut"Wink, or if they were there from before, and possibly the root cause.

I wish I'd been tested for these before the antibiotics.

Apparently food allergies and gluten sensitivity can cause the same symptoms I've been having.

I've since seen other doctors (an endocrinologist to check my thyroid function, and an infectious disease specialist to review my other results).

Neither returned any significant results (I have no diseases and my thyroid function is fine), and they both thought I has been improperly treated with antibiotics.

I'm still seeking a root cause, but I'm currently focusing on maintaining an allergen-free, low-sugar diet, and repairing the damage to my GI system done by the antibiotics.

YMMV of course, but to anyone who thinks they might have "chronic Lyme", I'd strongly advise them to eliminate all other likely causes before considering treatment for it.

Once you start treating chronic Lyme, it's very difficult to figure out when to stop.

They tell you it could take months or years to get better. Months or years of antibiotics will do great harm to your body, and it's difficult to understand exactly what that means until you've done it.

Plus, what happens when you've taken months or years of antibiotics, and you still haven't improved significantly? When do you stop?

Watch out for chronic Lyme diagnosis/treatment.

I'm not saying it doesn't exist (even though this article strongly implies that), but it's easy to go down that road and waste a ton of time and money treating something you don't have, based solely on vague symptoms and best guesses.

Not only this, you're *not* treating what you really might have wrong with you during that whole time, and you're also doing great harm to your body.

PS - Dr. Fallon at Columbia Medical Center told me that he has experimental evidence that the CD-57 NK test (commonly used to support a Lyme diagnosis) is completely useless.

Between a healthy control group and a carefully selected Lyme-positive group, his research team found no significant difference in CD-57 results.

Furthermore, they found that the CD-57 results were highly variable, often changing significantly even from hour to hour.

They are in the process of publishing these results and conclusions, if they haven't already.

#9 - Fri Oct 22, 2010 10:56 PM EDT

rpearlston

Pseudothink, these are the results that you get when you have an open mind about something as controversial as "chronic" Lyme disease. Good for you.

The tests for Lyme disease don't test for the presence of the bug but for the presence of the antibodies that a person who has been exposed to the bug has developed.

That's all that they can do. They can't even tell if those antibodies developed in the last week or more than decade ago.

Here's an example of the equivalent to that test.

Rubella is known as a "childhood disease" but if you happen to contract it while you're pregnant, it can do serious harm to the fetus. But, there is a vaccine against it.

Your doctor can tell if you need this vaccine by running a blood test that checks for antibodies to rubella.

Those antibodies can have developed at any time in the past. But you don't show the antibodies, and you're a woman of child-bearing age, the vaccine is advisable.

It's the same concept, and it measures only for the presence of an antibody. It can't tell you how long that antibody has been present.

I don't see a reference in your post to a rheumatologist. So, arrange to see one, because there are types of arthritis that can explain your lingering symptoms. And if you have seen one, get a second opinion. It's your right.

#9.1 - Sat Oct 23, 2010 2:03 AM EDT

Pseudothink

Thanks rpearlston! I've heard the suggestion to see a rheumatologist before, but given that I've run out of things to investigate for the moment, I'm more interested now.

I'm just worried that I'd show up for the appointment, explain my symptoms (fatigue, cognitive difficulty, headache, tinnitus), and the doctor would just ask me why I thought he could help me with them.

I don't have an answer for that, nor any clue about what tests he might do that would help.

I don't have significant joint pain or joint-related problems that I'm aware of, but I suspect there is more to rheumatology than that?

Perhaps it's just the result of inflammation caused by some sort of autoimmune problem?

#9.2 - Sat Oct 23, 2010 2:24 AM EDT

rpearlston

Pseudothink, as an arthritis patient myself, I can guarantee you that those symptoms are common to many types of arthritis.

Yes, there is more to rheumatology than just explaining joint and joint-related pain.

There are more than 100 different types of arthritis, and most of them have little to nothing to do with joint pain.

Most, in fact, are auto-immune disorders, and they seem to need an environmental "trigger" of some sort.

For you, that may well have been Lyme disease.

Do you best to ensure that the rheumatologist that you see is working in a rheumatology clinic at a teaching hospital.

These doctors are clincian/researchers, and are constantly moving that "cutting edge" forwards.

Remember that you don't need a clue as to which tests any doctor will run.

Your role as a patient is to be as honest as you can be with your personal and family histories, with your reactions to the physical exam, and with your answers to the questions that any doctor will then pose.

Based on all of that, a doctor will decide which tests, both imaging and lab, should be run in order to assist in finding your diagnosis. And that can take a long time.

We see that process in a very, very condensed version on the show "House", but it can take years.

And everything that gets ruled out is actually a step forward simply because the diagnosis of less-well known problem is about ruling out the more common of the potential explanations.

Doctors, after all, are trained to think horses, not zebras, when they hear hoof beats.

#9.3 - Sat Oct 23, 2010 12:54 PM EDT

rpearlston

Let me summarize that article in a few short words.

There is a very small number of doctors who are too lazy to look for any other health challenges.

That's it. That the article summarized in 18 words, one sentence.

The thing is that there are lots of health challenges with lists of symptoms that mirror the list of "chronic" Lyme disease symptoms.

Being able to say, "yes, I have every one of those symptoms" or even , "yes, I have some of these symptoms" does not make the diagnosis "chronic" Lyme disease.

Do your jobs, doctors, because as things stand now, the few of you who can't be bothered to do so have also forgotten about that part of the Hypocratic oath that says "first do no harm".

And to jklaser, FM patients are NOT chronic whiners.

In fact, there are tests that prove this diagnosis. But a functional MRI is extremely expensive and not available in most places, and a lumbar puncture (spinal tap) is incredibly painful.

1 vote#10 - Sat Oct 23, 2010 1:30 AM EDT

Pseudothink

1 vote#11 - Sat Oct 23, 2010 2:22 AM EDT

****************

CopsAre....

From reading all your comments and eyeballing the article, I would say a portion of you have got "the Worm". Toxocariasis.

However nobody mentioned scrotum swelling or blow-outs nor breathing trouble and coughing fits.

With a good sized infestation (millions) sinuses are first, lungs are second and reproductive gear is third on where they affect/effect (attack), depending on how they entered you.

Listlessness , fatigue, brainFog, depression, milky film on an eye or eyes, anger at Doctors....are all symptoms.

If you regularily wake up semiNauseous or have hour(s) long coughing bouts in the middle of the night, if your inner ear is itching alot and your head aches daily, if your teeth are periodically sore and when removed the gum is reluctant to heal, I would recommend another professional exam.

If that option is no longer open (you are broke) ......Dip a cotton swab in 70% alcohol and clean out one (both) of your ears, look at the swab under a good light w/a jewelers loop and if you see any tiny blue or red or brown or green or translucent threads..............get a name brand inhaler and a bottle of "Clarkia" parasite cleanse.

The difference between "the Worms" and fiber is that you can pull the creatures apart w/your fingers while fibers you cannot.

If you are male and are infested be prepared for a testicular swelling and blow-out.

Ladies , I-m not so sure about. Hope this info helps one/some of you, I wish I'd-a got it 12 years ago.

#12 - Sat Oct 23, 2010 7:53 AM EDT

Mary Manor

I am convinced my mother-in-law has end stage Lyme's Disease. She now lives in dementia care facility with next to none short term memory.

For many years she has had joint pain that was dismissed as "You've got to expect that. You're getting old."

She lives in Northern Wisconsin, an are with rampant Lyme's Disease because it is so wooded.

Both her daughter & grandson who live in the same area were treated for over a year for Lyme's. She was not .

I am livid that this vibrant woman is now just a shell because doctors dismissed her symptoms as "old age."

#13 - Sat Oct 23, 2010 9:51 AM EDT

xfdgf44Deleted

Bighorn

GP doctors in general do not recognize any medical problem unless its obvious and something simple.

Usually they send you to a specialist or they have their support office staff treat you.

You are better off to pull up your medical concerns on MD.com to see what the real solutions to your problems might be.

#14 - Sat Oct 23, 2010 11:45 AM EDT

Dr. B.-2550072

I have treated a number of "Lyme" disease cases the last number of years with some very good success rates.

I have discovered that it is not caused by a germ, however, most of the time the symptoms are the result of a body that has been weakened mainly by a surgeon's scalpel.

A surgeon's knife will create an inflammation that is trapped and will weaken the body.

When I treat those surgical areas and reduce the inflammation, the patient's symptoms of "Lyme" disease go away and they improve physically.

#15 - Sat Oct 23, 2010 12:29 PM EDT

hope-2550570

First, this article reflects one side of a debate. Not really accurate or helpful.

Medicine is a "practice" - doctors are not gods and patients MUST become experts as to what they physically feel.

Any third party with an opinion on what you do with your body is an INTERLOPER - unwanted, thank you!

I have been misdiagnosed with too many illnesses to even list.

I have had the best medical care available to man.

The quiver of symptoms have made me familiar with many practices of medicine - an allergist, cardiologist, epidemiologist, rheumatologist, neurologist (actually 2), orthopedist, pallative care expert and thrown in for good measure, the team at Rusk NYU, who tested and found the 30% drop in vocabulary and simple memory/problem solving!

As a result of the above, all possible illnesses have been eliminated. That's the tactic I took.

I am left with positive tests for lyme, babesia and bartonella.

I have "herks", I suffer daily pain, nausea and the runs all day.

As a last resort, I am on antibiotic therapy, daily IV. It is helping with some of my symptoms. MORE than any other doctor could do.

I AM SICK TO DEATH of this illness being debated!

So the thousands of us getting this treatment are all nuts who "want" to be ill and live marginally on disability?

We all want the kind of ridicule you suffer from idiots who say, your faking, lazy or crazy?

This is my 6th year of illness and only the 8th month of working treatment! I'll take the IV and ignore this article, thanks.

I suggest anyone who thinks CHRONIC LYME doesn't exist, goes for a long walk in the woods, pet a couple of deers and gets this illness. Then write an article.

Till then, I'll see you in the waiting room..... or even better, interview someone from the other side of this debate.....

#16 - Sat Oct 23, 2010 4:03 PM EDT

jason

For those of you that hate allopathic doctors, please stop coming.

I am not an egomaniac but bound by ethics to not sell you something I cannot support with current medical literature.

Please stick to your snake oil salesmen, hopefully they at least make you feel better as I often cant as ethics keep me from telling you anything other than what current medical literature would support.

Most folks keep going to the doctor until they hear what they want, or someone who justifies their dysfunction, or "listens" to them.

I can do that but refuse to sacrificee my personal ethic to make a dollar.

But please help yourself if that is who make you feel better.

#17 - Sat Oct 23, 2010 4:52 PM EDT

Bork NotKagan

I suspect that the "doubters" amongst the General Public and amongst the Doctors are NOT CONSIDERING the Immunology of the body when expressing their skepticism.

Once infected with some microorganisms, an Auto-Immune disease ensues...which will most likely last for the person's entire life and will require regular treatment in order to keep the disabling symptoms at bay.

I am NOT a Doctor...but I have had Auto-Immune disease for 25 years.(NOT Lyme Disease)I believe that I know a little bit about some of this.

It is naive and counter-productive to dismiss "chronic" Lyme Disease as non-existent. Ask ANY qualified Immunologist.

#18 - Sat Oct 23, 2010 6:05 PM EDT

Post edited by: Bettyg, at: 10/23/2010 04:46 PM

Reply

10/26/2010 11:07 PM
Bettyg
 
Posts: 32201
VIP Member
I'm an Advocate

check it out; going on 100 replies to this yesterday; haven't checked today.
Reply

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