Nikorah

Is it possbl to get an Incorrect Narcolepsy diagnosis?

49 posts in this topic

17 hours ago, Natdoc said:

Nikorah

Kind of a stupid test isn't it? CDC requires 5 bands to test positive for Lyme or it aint lyme!! really? Lyme should not test positive in any band, If there is one positive band then it is Lyme because people do not generally run around with this present in their bodies.

Lyme is carried by ticks yes, but also by birds, and deer which most folks will not recognize.

I would urge you to research the following organization, they can direct you to a Lyme disease specialist in or close to your area who will treat you. ILADS ( International lyme and associated diseases society).

Again, Best of luck

What's their reasoning behind making the test so stringent? I assume there had to be line of thought here and the CDC weren't just trying to be obstructionist.

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@Nikorah  Okay just so it's clear, the term chronic Lyme's disease is not a science based diagnosis. You either have Lyme's disease or you don't. Lyme's disease can be chronic in that it can go undiagnosed and therefore untreated for a long time. Syphilis is similar in this regard. 

If you haven't been on antibiotic treatment for Lyme's disease but tested positive, you have Lyme's disease, not chronic Lyme's disease. Once the antibiotics kill the bacteria, you no longer have it. It can take weeks or months to recover afterwards. Some people think during the recovery period the bacteria is still in them and continue antibiotic treatment, which is not effective and dangerous. These people are considered nuts by doctors and are termed chronic Lyme's. 

Edit:

I'm not trying to say you don't have Lyme's disease. It's quite possible you do but it's just termed Lyme's disease no matter if you've had it for a just a month or a decade. 

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I don't fully know the whole story but this is what I have heard. I heard that several of the men on the CDC board also developed the CDC required tests for Lyme. They have a vested interest in using these particular tests over others. I want to do further investigating to find out what is fact over fiction but there is a big uproar about it in the Lyme community. The biggest problem is people who are sick cannot get health care because the CDC claims it's not Lyme unless you have all five bands on the western Lyme blot test plus most doctors and labs say that an Elisa has to be done first and this one is even less sensitive! The CDC (government) won't even look at private lab tests that are not their own. Several labs in recent years have become much more advanced at detecting Lyme disease and the various co-infections, igenex for one. The CDC continues to claim new Lyme disease cases are really low so therefore there is no money for new research, trials etc. It's rare to have five out of the CDC's ten required bands. Most people with Lyme disease have at least one Lyme specific band and possibly more. LLMDs do not go by the CDC regulations because of the old outdated guidlines and all of the people who are obviously sick who DO show antibodies for Lyme and can't get help. My neighbor spends 45k a year on her meds, clean eating, allergy stuff (Lyme disease makes you hypersensitive to gluten, sugar, meds, milk, soy, pesticides from food-toxins), nothing is covered by insurance. Doctors have lost their license or have gotten in trouble for treating patients. I am sure there is a lot more to the controversy that I don't know but this is my understanding of it thus far. Seems so corrupt. The article below explains some of this better. 

https://www.lymedisease.org/lymepolicywonk-the-cdc-the-fda-and-lyme-disease-lab-tests-two-tiered-tests-igenex-the-c6-and-the-new-culture-test-2/

 

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I detest the politics that ignore the real people being affected. It's everywhere... like not  being able to report a missing person until they've been missing for x number of hours. Say WHAT?

imho, it's just the label of "Chronic Lyme Disease" that is incorrect but the reality is that it's "chronic illness that has been precipitated by getting bitten by a tick that's a carrier of Lyme that gave it to you". A bit of a mouthful don't ya think? It's not as if clearing the bacteria from your body makes everything ticketyboo again. The damage is done and the longer it takes to get diagnosed, the more damage is done.

 

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@Ferret exactly. Say chronic Lyme's disease and physicians think you're nuts immediately. So choosing your words is important sadly. 

@Nikorah note, even if it's not Lyme's, it may be an indication of something else. 

"The most common reason for a positive serology test in the absence of Lyme disease is the presence of another spirochetal infection such as syphilis, spirochete periodontal infection, or relapsing fever. Patients with rheumatoid diseases or infectious mononucleosis also may have false-positive reactions, especially IgM."

 

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Jason, 

How do you tell when the antibiotic have caught and killed every last one? Think about the probability of that happening when not only borrelia can hide but many other bacteria can hide from the immune system and antibiotics? Did you ever watch shows like "diagnosis unknown" or shows like that? They had numerous stories of different bacteria invading human bodies but evading capture, it happens. 

It depends on who you are talking to but in general if it's a new infection then it's Lyme disease, if it's not new then it's chronic Lyme disease (not sure what Time frame makes it Chronic) plus most people don't know when they got it anyway. The CDC and most doctors will consider it chronic Lyme unless you saw the bug or the red target. CDC says a course of antibiotics for a fresh Lyme infection will kill it in approx 30 days (which may or may not) but they don't think chronic Lyme exists. So unless I have five bands or pass their fresh infection test, I don't get treatment. LLMDs believe that the bacteria can envade detection and stay dormant until a life stressor causes your immune system to weaken enough for them to take hold. Mine flared when I had my twins. 

  • Borrelia IgM (immunoglobulin M) antibodies are usually detectable in the blood about two to three weeks after exposure. IgM levels increase to maximum concentrations at about six weeks and then begin to decline.

its very hard to detect the bacteria in the blood unless it's a new infection. That's why (even CDC) do a western blot which will show if you have antibodies but the test is still not very accurate. 

 

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Well regardless of whether it is N precipitated by Lyme, it's probably still worth following up with the sleep doctor as well. If lyme damaged your orexin system in the hypothalamus, that damage is done and clearing the bacteria if they are still present will not undo that unfortunately. :(

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Ferret you are right, sadly the politics of many issues are killing people, it's easy to be blissfully unaware until it effects you personally. Someday the Lyme controversy will be cleared up, people will get the help they deserve and all of the controversy will be yet another smear in our world history. 

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@Nikorah Trust me, don't call it chronic Lyme's disease. Syphilis can stay in you for life and it's not called chronic no matter how long you have it. Some quack came up with the term chronic Lyme's disease so it's got a lot of stigma attached to it in the medical community. 

Bacteria don't usually hide from antibiotics. It's more a matter of whether the antibiotic is effective against the particular pathogen and how well the antibiotic can get to the location the bacteria is. The vast majority of people recover from Lyme's disease after treatment. Studies show prolonged treatment with antibiotics in people still having symptoms after regular treatment is no better than placebo. Why? Because you can't kill something that's already dead. 

 

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Nikorah

In my opinion only: Medicine is NOT and exact science, I can remember not all that long ago we were having this same discussion about fibromyalgia, rheumatoid arthritis and Lupus to name a few. Everyone then thought and some still do that these were not "real" diseases because we had not yet had enough research to where we could call it evidence based medicine.

Regardless, as far as I know there is no "cure" for lyme disease we can only hope to control and alleviate the symptoms. Unfortunately there is a very small percentage of people who actually notice the "target" of a tick bite, we seek care when symptoms manifest to such a degree that we no longer can tolerate them. By this time the damage has been done. As far as the term "chronic" this simply insinuates the presence for a period of at least 3 months.

I would urge you to become your own advocate and I caution that as far as any medical condition concerned if you are unable to obtain quality sleep then the disorder will become much more severe so I would urge you to work with your sleep physician to obtain the best sleep possible.

Please keep us advised of your progress, we are on your side

Best of luck

 

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Read this whole thread - did you ever get an MRI? sounds a whole heck of a lot like MS to me, but and MRI is vital to see if there is scarring. Also, I've read about some people whose first clinical symptom is N, but later on they find out they have MS. Sure, you can have N and MS and not have the N caused by MS, but they are finding more links twixt the two. Think about how MS could attack the hypothalamus, giving aberrant signals.

"Interestingly, however, a recent meta-analysis indicated that 10 of 116 symptomatic cases of narcolepsy are associated with multiple sclerosis (MS),3 a disease of autoimmune demyelination."

"Narcolepsy associated with patients with MS was reported several decades ago. Since both conditions are associated with HLA-DR2 positivity, an autoimmune target on the same brain structures has been proposed to be a common etiology for both diseases.14 However, the discovery of the selective loss of hypothalamic hypocretin neurons in idiopathic narcolepsy indicates that narcolepsy in patients with MS coincidently occurs when MS plaques appear in the hypothalamic area and there is secondary damage to the hypocretin/orexin neurons.3Supporting this interpretation, the hypocretin system is not impaired in patients with MS who do not exhibit narcolepsy,15  "

 

An iteresting 2009 study (small sample size): http://jamanetwork.com/journals/jamaneurology/fullarticle/798609

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Yes, I have had two MRI's and they have both been clear. The study you mentioned is very interesting though and I believe over the next 30 years they will be able to piece more of these illnesses together, until then, we suffer through it. I have been told that I have chronic Lyme disease (which is controversial) but they suspect the bacteria can cause MS and many other diseases. My grandmother has MS and it's not fun. Thank you for your time in writing. I will continue to keep one eye open to any other possibilities and get a new MRI done in the next couple of years just to be sure. I think there is a lot to still be discovered, I pray it comes sooner rather than later.

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Jason, what does it matter if it's called chronic or not? If you were bit by an infected tick, you will get the bacteria, period.  The name doesn't change the facts. I don't agree with you and neither do all the others who are suffering with the same thing. It's easy to say it's a quack diagnosis when you are not sick. Something is making a hell of a lot of people sick and if it's not in the doctors text book or list of outdated labs, it doesn't mean it doesn't exist.  There have been many studies and autopsies that have been done that have shown Lyme disease, (even chronic, which only means you've had it longer than three months) in people's brains. Just because it has not been recognized by the CDC, doesn't mean it doesn't exist. Yes, there is a risk with antibiotics but not everyone chooses to go that route for treatment. Bacteria can hide from antibiotics (this is commonly accepted) and certain anbiotics kill only certain bacteria. A tick can transfer over 20 different types of bacteria plus on top of that they can transfer viruses. I know I have been bit, I know I have gone to many specialist that are suppose to figure my illness out, yet they can't, does this mean it doesn't exist? Of course not. Sure, there is a chance that "chronic" Lyme disease can be killed by our immune system but you also have to accept that there is also a pretty big chance that it can survive despite our immune systems effort. There are a ton of famous people who have come down with chronic Lyme and have spoke out about it despite, the CDC's criticism. People need to start paying attention to the problem instead of believing every thing the government tells us is true.

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Well stated Nikorah. Logic does not always apply to medical problems and this is especially true of Western Medicine. I sincerely hope that you are on your way to feeling better.


 

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Natdoc,

You are very right about diseases being controversial in the beginning (even though they have been around for years), I have even read about cancer being this way at one point. Being your own advocate is the only way to get to the bottom or at least closer to an answer. So until I am led in a different direction with a clear explanation to my symptoms, i believe I have chronic Lyme disease. I have never felt good about getting a different diagnosis from each doctor I see, they are all just educated "guesses", each doctor looking at my symptoms through their specialty eyes, none looking at the whole of me. I guess that's why being your own advocate is so important, good advice.  Thank you.

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Natdoc, no I haven't been in contact. Do you mean have I read their guidlines? I haven't seen this link you sent me but I will definitely read it, thank you so much for the information and thoughts. Sleep is also very important, which I forgot to address in my last message to you. I am still working on this but it ebbs and flows as you probably know. I do take it more seriously now though. 

Ferrett, thank you for your help and concern, I am working on getting better and I pray it works. 

I hope all of you get the help you need as well. 🙏🏼

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Excellent article HBr! A very sad yet also uplifting story. Interesting choice of University too since Guelph is also where the best Veterinarian School is.

I wish them every success in their research.

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@Nikorah oh I'm just saying I wouldn't refer to it as chronic because the medical community associates the term with hypochondriacs. You're right that chronic generally means an extended period of time usually. 

The CDC recognizes about 6% of people continue to have problems after treatment. Many of the chronic Lyme's folks believe that continued antibiotics help but research shows it's no more effective than placebo.

The CDC refers to the post infection state as something else, perhaps caused by damage by the infection that persists after the pathogen has been eliminated. I mean hell anything that damages the CNS may be irreparable or take a long time to recover from. Look at narcolepsy for instance. 

I'm not suggesting there isn't a real post treatment Lyme's disease condition, just that it's not referred to as chronic Lyme's by the medical community. 

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Chronic Lyme is considered vague pseudoscience. It's basically a catch all of vague undiagnosable symptoms. An entire industry has cropped up to draw patients into unproven treatments. And who knows what is actually really wrong with these people. I think it's a scam and a sham and a shame.

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Here's the actual information about post Lyme's disease syndrome from the CDC, which recognizes it as a real condition and specifically states it's common to take months to recover. The whole concept that the CDC doesn't care, etc is nonsense. 

https://www.cdc.gov/lyme/postlds/index.html

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I don't think anyone said that they don't care... but their priority and focus is stopping epidemics or pandemics.

I'm not sure if this still happens but... in the 70's, any pathogen that could be passed human to human IN CANADA had to be sent to the CDC in Atlanta for confirmation. The scary part is that the sample (of a pure culture of a Salmonella strain for example) was sent in aluminum tubes VIA snail mail to the CDC. Can you say HAZARDOUS out loud?

I can also say that possible funding cuts by the current regime in the U.S. is not helping matters.

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