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» LymeNet Flash » Questions and Discussion » Medical Questions » Why is it a Secret?

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Author Topic: Why is it a Secret?
jlf2012
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I don't understand why many people recommend being secretive about the lyme diagnosis. Why would it be something to be ashamed to admit to having?
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Lymetoo
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No secret at all... but telling other doctors who don't get it is problematic.

--------------------
--Lymetutu--
Opinions, not medical advice!

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TF
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Lyme disease is in the midst of a huge medical controversy. The vast majority of doctors have been miseducated by the Infectious Diseases Society of America (IDSA) to believe that lyme is rare and easily cured with 28 days of doxycycline.

So, if you tell a regular doctor that you have lyme and have had it a long time and you are going to a "lyme doctor" (not a recognized medical specialty), you will likely be told that the lyme doctors are just taking people's money. That poor, sick people who become convinced they have lyme disease from reading the crazy lyme websites (like this one) are taking antibiotics for years from doctors who are just milking them for money.

The doc will likely give you an earful, tell you you don't have lyme, if you had lyme you would have easily gotten rid of it by taking antibiotics for other illnesses in the past, etc. etc.

So, if you want to avoid the "you don't have lyme lecture" and being told you are crazy for treating lyme, you just keep it all to yourself as much as possible when seeing a regular doctor.

If you want to watch a TV show done on the lyme controversy, here is one:

http://www.kettmann.com/Lyme/Save/

Then, click on "Here"

The show was aired by a Boston TV news program about 3 years ago. It was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.

You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.

You will also hear over and over how people were treated terribly by doctors just because they wondered if they had lyme disease and pursued it with their doctors.

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sickofsick
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I agree that it shouldn't be kept secret, but you will face people that will think you are crazy, at least in parts of the country that "don't have Lyme Disease." I am a bit guarded who I tell the details to. I found it better accepted to say "I believe her illness was caused by a tick bite."

Many doctors do not like the L word. You will almost feel their attitude change when you say it. I assume they are receiving some kind of memos that tell them to watch out for those who claim to have Lyme Disease and what to say to us!

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ESG
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on the other hand, the more we speak up, the more our docs may have to listen. I fear they have all been sent the memo to sweep Lyme under the rug & must not let that happen: we must sow the seeds of doubt in a quiet but persistent manner.

My daughter went to get her shots before traveling to China; the Infectious Disease doc at the hospital told her off & said there is no such thing as Lyme Disease (a CT hospital, folks), my daughter told him off, told him she was there to get her shots & his ignorance was none of her concern: Brava!

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Rumigirl
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Don't you "love it," ESG?? I live in the most endemic state in the county--although CT is equally so---and I got royally chewed out, talked down to, and arrogance beyond belief when I had to go to the ER. Got 2 horrible lectures each by 2 different drs!!

I wish that I'd been able to speak up more, but it was clear that it would do no good. Plus, I had given my dr's name, which I mightily regretted. I was trying not to get him in trouble. It's unreal.

So this is why we don't talk about it much with regular drs.

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paulieinct
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quote:
Originally posted by TF:
The doc will likely give you an earful, tell you you don't have lyme, if you had lyme you would have easily gotten rid of it by taking antibiotics for other illnesses in the past, etc. etc.

So, if you want to avoid the "you don't have lyme lecture" and being told you are crazy for treating lyme, you just keep it all to yourself as much as possible when seeing a regular doctor.

An alternative to keeping quiet, is to BLAST any doctor who starts with his Lyme denial. Tell him you HAVE LYME, sorry if he's in denial.

Just my opinion.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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Keebler
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-
Be aware that once a patient's medical file is labeled "DIFFICULT PATIENT" that can have very far reaching and adverse effects, even forever, with the use of computerized files.

Google: Difficult+Patient

Current or future employment could be at risk for being too vocal. Life insurance policies have been revoked due to a lyme diagnosis.

Even current health insurance could be at risk if one is "red-flagged".

I'm not suggesting being beaten by this system but we have to be very wise and really think about the best strategy.
-

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hammond
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I think that if you are "new" to Lyme and/or in a Lyme brain fog, you should play your cards close to your chest. It's as if you have entered a foreign country and the authorities are corrupt and hostile.

But now that I 'm older and hopefully wiser, I 'm not so cautious. Keebler may be correct about future employment and life insurance. But I 'm finished with being a foreigner in my own country. I live here too!

I 'm familiar enough with Lyme symptoms that I don't even bother with regular M.D.'s My immediate family includes an N.D. and my extended several M.D.'s and we basically go see our "friends" for medical attention. So I have not had a "confrontation" But if for some reason I should find myself confronting an ignorant M.D. about Lyme, my particular case is so well documented by famous Yale Lyme titans complete with CDC confirmed relapse that only a fool M.D. would brush my case off. And the only excuse they could possibly come up with is that I was bitten again by a tick. Only thing is I was living in the concrete jungle of Chicago at the time.

So I guess I 'm suggesting that sooner or later, we all need to claim our territory. But you have to be well informed because M.D.'s can be very ignorant and arrogant at the same time.

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Lymetoo
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It's amazing to me that I've never gotten any grief over it at our local hospital.

I ran into one ignorant doctor when I was first diagnosed... and my husband took care of him!!! [lol] (after I let the Dr have a piece of my mind also) .. my husband called him and told him off

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymenow
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I tell everyone I know and told all former doctors (like they care), make videos, blog. Everything I can to be vocal. Almost everyone around me thinks I'm full of it, but at this point I don't care.

I had a dr. tell me that her hands were tied (and she couldn't help me) when it comes to treating lyme, but that she would do the same thing I was doing. That made me feel better. Nobody will ever care if we don't scream and yell. My brain and body are screwed anyway. Worry about consequences later.

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AlanaSuzanne
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I live in an endemic area. I am vocal about tick-borne disease to doctors and anyone else who asks.

I will not deny what has been my reality to anyone for any reason. I refuse to indulge ignorance.

For the most part, the medical personnel I have encountered have been open-minded and some of them have their own horror stories about Lyme/cos believe it or not. One or two have questioned me, which I welcomed.

I tested positive for babesia (FISH), Q-fever and RMSF. I was told this means NOTHING. I asked why and was told that the FISH test for babesia wasnt accurate and the Q-fever test meant nothing and the RMSF was a fluke. Really?? REALLY???

So how can it be both ways? The traditional IDSA docs dont accept clinical diagnoses from LLMDs who are in the trenches of actually treating sick people (as opposed to the IDSA clinicians in their ivory towers of academia).

But when people actually test positive for tick-borne illness, that doesnt count either?? Wow, makes you wonder. Where has common sense gone?

If we, as educated consumers of medical care for this damn disease, dont speak up and stand up, who will?

Wed all speak up and stand up for cancer and AIDS and heart disease in a minute, wouldnt we?

And wed all be on board for raising money by baking cupcakes and doing walks for these causes as well.

So why are we so collectively silent about tick-borne diseases?

Like the original poster said, why would it be something to be ashamed to admit to having? It isn't!

Jif2012, thanks for posting and making me think about this issue more.

I wish you good health.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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hammond
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I understand keeping a lid on Lyme in average situations. And I understand the red flag problem with regards to new applicants.

But what if you are admitted to a hospital with generic symptoms like dizziness, brain fog, shortness of breadth and tinnitus? And what if you have not met your deductable and the M.D. orders a CT incase you have a blood clot. Will you then raise the Lyme topic?

I would. Because the last run-around I had with Lyme my "Top of The Line" insurance company did not pay a dime for my antibiotics. Why? Because it was a "off label" prescription.

(If you do not know what that is, than I suggest you google it because it is a common insurance scam.)

Additionally my "cadillac" insurance failed to pay for any of my office visits for my relapse.

So my question is .......... would you keep it a secret from a treating M.D.?

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Keebler
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hammond,

Not sure if you've talked to others in the area lyme support groups but Oregon is - with intention and pride - one of the most "medically hostile" places for those with lyme in the country. The IDSA rules.

You speak of needing to go to the ER for symptoms that, even in a medical office, most doctors would dismiss as depression.

I used to fall dozens of times a week and there was never any medical work-up, at all, not from any doctor, of many. For years. Dismissed as depressed.

In the state of Oregon, mentioning lyme to any doctor in any hospital will most likely get you kicked out of the ER.

It's happened many times to several people, including myself - even though there for something seemingly unrelated and lyme was just mentioned in passing to the EMTs to help explain the seizures and slurred speech.

Another seizure hit while on the table in the ER and they kicked me out for (their words) "trying to throw myself off the table." Not kidding.

Another time, a seizure hit in the waiting room, while down on the floor in spasms, a nurse kicked me and yelled at me to "get up. I saw you throw yourself off that chair."

I could not move but she still nudged me hard with her foot for a full minute. No help to get to my feet whatsoever.

So, for myself, I would rather die before ever going back to any ER while still dealing with lyme. If it ain't broken or spurting, I'll deal with it myself, no matter how severe.

You may wonder, "well, what if life threatening?" Well, I'd rather die on my own than have to face ignorant and abusive doctors ever again. It's no picnic living this way, anyway.

In my case, the ER can be dangerous to my health. There is no care there for someone with chronic lyme. They have no clue to the complexities. And they seem to like it that way.

The noise is also life-threatening, in my situation. Stress can kill. And the level of noise is just extremely stressful even for someone with a Zen attitude, a body with lyme can take only so much stimuli.

We have to learn so much about how to take care of ourselves.

Wish I had known years earlier that magnesium can do so much regarding regulating heart rhythm and even to help prevent seizures. Who knew? Not me. Not then.

I sure do now, though. Good thing, too.
-

[ 02-29-2012, 03:45 AM: Message edited by: Keebler ]

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Keebler
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-
hammond,

While a rhetorical question, regarding the symptoms in your question:

"But what if you are admitted to a hospital with generic symptoms like dizziness, brain fog, shortness of breadth and tinnitus?" (end quote)

Details here to help most of those symptoms:
-----------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
-

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chaps
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I don't think it makes sense to keep it a secret from physicians.

It certainly makes sense to keep it a secret from the rest of society if you're currently unemployed, though. No company would touch anyone having a chronic illness with a ten-foot pole. You will never see me on facebook with a picture of my smiling face and one of those lime-green ribbons on it. That's like saying "HERE I AM, ALL YOU POTENTIAL EMPLOYERS OUT THERE. MAKE SURE YOU DON'T HIRE ME."

Whether or not physicians are told, lyme patients need to make their own decisions about other treatments very carefully. For instance, a cardiologist who KNEW I had Lyme wanted me to undergo a nuclear stress test. Why not an echo stress test, which doesn't involve injecting dangerous dyes into the patient and then nuking them to death with radiation? No good reason. It's just that he made more money on a nuclear stress test.

Can you imagine a Lyme patient, who already has problems detoxing getting filled with that dye and then getting exposed to all that radiation?

Anyone who thinks they are doing the best thing by just listening to their allopathic doctors' advice and taking their recommendations is sorely mistaken.

It's prudent to do one's own research, be one's own advocate, and make one's own decisions.

If the allopathic medical profession was not completely controlled by greed, cancer and all kinds of bacteria-borne and virus-borne illnesses would be non-existent today. Don't even get me goin' on that.

--------------------
-chaps
Listen to the bell, Borrelia. It tolls for thee!

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hammond
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Keebler- I did not know that Oregon is such a medically hostile state with regards to Lyme! But then again I have not visited non-LL M.D.'s or gone to the hospital since living here so I guess I 'm kinda out of the loop with regards to hospitals and ER's.

Your horror stories with regards to emergency room/M.D.s just make me sad and depressed. And the TRUELY sad part about your stories is that I have no doubt that they are true. But ask an average healthy American to listen to your story and I bet you might be met with some skeptic looks. I have had conversations with friends and co-workers about our American health care system and many seem to believe that our system is great.

I think Chaps is right. Don't post on facebook about Lyme!

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Lauralyme
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jlf you sure started an interesting thread!

Personally I don't tell anyone I have lyme. Even friends that I don't see or talk to often. That's when "not looking sick" is a blessing. I didn't tell them because I find I can't even talk about lyme without getting angry.

Hammond stated it well
"But ask an average healthy American to listen to your story and I bet you might be met with some skeptic looks."

And it really hurts when you face that skepticism from a close friend or family member. They believe authority over what I am personally experiencing?!

--------------------
Fall down seven times, get up eight
~Japanese proverb

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Lauralyme
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[QUOTE]Originally posted by AlanaSuzanne:
"Wed all speak up and stand up for cancer and AIDS and heart disease in a minute, wouldnt we?"


Thing is the tests for cancer, AIDS and heart disease don't result in false negatives.

It's the flawed testing that is the root of all of this!

--------------------
Fall down seven times, get up eight
~Japanese proverb

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nefferdun
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So true! Skeptics are not just in the medical field but also people you considered friends. I find the best thing to do is say "I am treating babesiosis" or borelliosis or ehrlichiosis. The doctors don't even know what that is.

I used to try to educate everyone because I didn't want them to have the same experience. I found it a waste of time.

Recently when a doctor started to explain to me about how lyme is cured in 28 days and I am experiencing the after effects of the disease, I interrupted him to say, "Yes that is one theory but there is proof that the borellia spriochete forms a cyst when exposed to a hostile environment and this cyst cannot be affected by most antibiotics. Willie burdorfer who discovered the spirochete and for whom it is named, documented this in lab experiments".

Then I reminded the doctor the lab where Willie used to work is just a few miles away and although Willie is retired, he can call him if he wishes and discuss it with him personally.

I went on to tell him there is more than one infection acquired from a tick bite. I personally was CDC positive for borellia and also babesia duncani and ehrlichia. I tell him babesia duncani is highly resistant to treatment and requires completely different medication than borellia because it is a protozoa related to malaria.

As he really knew nothing about the disease and I was willing (perhaps eager) to help him understand more,he respectfully backed off.

Doctors intimidate and patronize us with scientific jargon. You can do the same thing back to them. Know the test results that indicate infection like a CD57 or C4a for borellia. Let them know you have already been tested and found not to have antibodies for RA or whatever.

That is how LLMDs are protecting themselves - that is why we have thousands of dollars of tests done. It is proof, there is an infection. If it is not lyme, then what is it!

I say if you don't mind frustrating yourself, speak up.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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beths
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I think that so long as we remain a hidden or silent community, no progress in the lyme world will be made.

That said, it's important, as mentioned above to be able to intelligently, and rationally explain the controversy to doctors. I carried a print out of some studies-they need to be reputable and gave them to my regular doctors.

If we keep backing down, we will never help our cause. When we become a vocal majority, then research money will hopefully be funneled to lyme.

If lyme starts infecting the blood supply, much like AIDS did, then the medical community will take notice. But first we need to make the world aware how prevalent and devastating a disease this is.

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lymenow
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Every time Chronic Lyme is mentioned in the media or gets a little honest exposure it's a step forward.

Every time Chronic Lyme infects someone and they don't hide it from others, it's a step back.

I understand why people do it, it's just frustrating because it makes me feel like I have to yell louder.

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ESG
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what is interesting is that when you mention Lyme Disease to anyone who is not a doctor, and this includes nurses, so many people say "Oh, I know someone who is so sick from that" or "That is such a serious illness" or something similar: everyone else knows and has a "story" to tell about Lyme Disease ... just not the doctors who live in denial and fear, and I think F-E-A-R is the key word
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ESG
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BTW, I had as blood transfusion in 1990, 3 units, and after that I was sick sick sick and have never been the same again
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chaps
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I have a doctor who is a little more open than most.

I told him I rifed and that I was going on Salt/C and I wanted his help with ordering bloodwork to keep an eye on my liver, kidneys, heart, other stuff. And he agreed.

Now that I'm improving and the bloodwork shows it, he's the one asking ME the questions.

--------------------
-chaps
Listen to the bell, Borrelia. It tolls for thee!

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jlf2012
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Well...I sure enjoyed reading all of your replies. I like Nefferdun's approach of being educated in our illness and giving it right back to these doctors who bury their faces to this illness. I personally will not hide the fact that I have lyme (if this is my diagnosis...I just saw my ILADS doctor Tuesday and he believes I have the signs and has order Igenex testing). I certainly would rather one of the co-infections was put on my itemized bill for a better chance of insurance reimbursement but I won't hide it from anyone else. I feel hiding it would pretty much putting me in the same category as the doctors who deny it and enable this disease to continue to be misdiagnosed and cause people needless years of unspeakable, hellish suffering.
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Tincup
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Just so you know... and I think Hammond mentioned something about this...

There are NO drugs approved by the FDA for the treatment of Borrelia burgdorferi (Lyme disease). None. Notta. Forget it little darling.

Drugs are approved by the FDA that we currently use for treating it, but none are approved for treating Lyme specifically.

Soooooo.. if someone throws that "off-label" or "experimental drug" garbage at you as an excuse not to pay for your treatment... be sure you toss that back at them.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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docluddite
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There are many controversies when it comes to Lyme. Many, though not all, can mark the time of a tick bite with the onset of illness. Illness will persist in many, though not all, despite short or long term antibiotic treatment, and there are also many, though not all of these who will have positive serology. Testing is at best unreliable, as it measures antibodies based on their weight, not on their being specific to lyme antigens.

It seems that the illness appeared as a new plague in the late 70s, or early 80s, but there are case descriptions in medical books of antiquity that describe similar afflictions.

This much is true: once afflicted, no system of the body is safe from some stigma of effect. There are many medicines out there to soften the blow of these malfunctions, but they are not "cures" per se. There are many supplements that have similar modulating effects, as there are lifestyle changes that may provide some relief. If these methods are implemented, many, though not all, will be able to live with some semblance of apparent normalcy.

No age group is spared, though there is greater incidence around the ages of puberty and andropause/menopause. The significance of this is unclear, though hormone fluctuations do present a certain level of metabolic stress.

Doctors don't have any answers. Period. The best ones will be supportive and open minded, and will do their best to prevent further harm. Insurance companies are now nothing more than profit machines and want only to find ways to keep the money paid to them in premiums.

In general though, a healthy body will remain so as long as the chemicals of live are available in sufficient quantity and no obstruction to their normal circuit exists in the mind/body/spirit.

[ 03-03-2012, 08:38 PM: Message edited by: docluddite ]

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surprise
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This has been a very interesting thread, as my daughter and I are only 7 months dx'd with Lyme- and have had to mention it.

I have a positive Igenex for Lyme and bartonella. I made a copies of both the pages. Handed it to 2 regular Dr.s, boy did they stare at it for a long time.

We switched insurance in January, had to see new 'regular' Dr.s.

One absolutely refused to acknowledge it. Big elephant in the room, I think he was vastly relieved I wasn't asking him to treat it, but he refused to speak of it.

My daughter's Dr., I had to disclose what meds she was on when in for appt. I told him Lyme. I have read the books, educated myself, we went back and forth intelligently for awhile- he abhors the antibiotics-

at the end, he looked me in the eyes and said:
'If it were my child, I'm not sure what I would do' and left.
(to which I think: if it were your child, and you saw the suffering, you'd TREAT.)

Last one was pharmacy tech. I finally said: It is chronic Lyme disease.
She said: OMG! My husband and I hike all the time, he had this rash.... (went into 15 minute conversation about Lyme.)

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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paulieinct
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quote:
Originally posted by docluddite:
Doctors don't have any answers. Period. The best ones will be supportive and open minded, and will do their best to prevent further harm. Insurance companies are now nothing more than profit machines and want only to find ways to keep the money paid to them in premiums.

In general though, a healthy body will remain so as long as the chemicals of live are available in sufficient quantity and no obstruction to their normal circuit exists in the mind/body/spirit.

Doc: I believe it is possible to effect something approaching a "cure". Both Dr. B and Dr. H had Lyme and coinfections. If you watched them at the last ILADS conference, you saw two individuals who appeared not just normal, but robust, and intellectually at the top of their game.

I also believe that the "Iceman" tells us alot about this disease. Here was a 45 year old man who ate a 100% organic diet, had plenty of exercise, and no exposure to any man-made chemicals or industrial pollutants. Yet he was riddled with arthritis, and had heart disease. I believe that Bb, which was found in his bones, was likely the cause of these conditions.

Scientists have speculated that the Iceman's many "tattoos" were actually attempts at acupuncture-like pain-relief.

Bb can totally destroy the health of even the healthiest individuals.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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docluddite
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Tell me more about the "iceman".
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paulieinct
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quote:
Originally posted by docluddite:
Tell me more about the "iceman".

Here is a link to one of many articles on him:

http://news.sciencemag.org/sciencenow/2012/02/iceman-was-a-medical-mess.html

PBS NOVA had a documentary on the Iceman, you can probably watch it online. Fascinating stuff.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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TF
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Look at this post, put up today:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115576?

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