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Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Fri 23 Jan 2015 1:31
by velvetmagnetta
Thank you for sharing your more complete story!

I am really glad for you that you have found the odd combination of ailments that was causing your illness - and even happier for you that there was an actual solution that really made you feel better.

I agree that it is important in this time of "Lyme is Everywhere", in addition to Lyme being the Great Imitator, to consider other possibilities of illness origin.

But there is also the terrible possibility of co-morbidity - when you have more than one affliction. I have to say, your symptoms do sound like those of neuroborreliosis - but NB is an affliction of the nervous system and so its effects are felt system-wide and in that way, mimic other diseases' as well.

I am also in agreement with you that your pain and discomfort from taking doxycycline was not due to any Herxheimer effect - although it could be a strong indicator that you were infected with the Lyme spirochete. I do not believe the Herx reaction is a positive thing. Further, I believe that it can be, in fact, dangerous. I don't know what it is from - and neither does anyone else as far as I can tell. But, in my book, avoiding pain is always better.

Thank you for sharing your story, nochroniclyme! Here on LNE, no one yells at you for not believing Lyme is chronic - they may disagree, but always politely. That's one reason I love this site!

Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Fri 23 Jan 2015 4:23
by TicksSuck
nochroniclyme wrote:I put together what was, for me, a huge puzzle of unfortunate medical events that caused my symptoms. I had a partial hysterectomy on top of an underlying long untreated thyroid problem. This caused my body to completely crash, having no hormones in my body whatsoever. It took several months for my body to become devoid of these hormones, which made the connection hard to recognize. Compound that with the fact that your hormones are not supposed to deplete with a partial hysterectomy, and that I had a reaction to Doxycycline, and an even more severe reaction to Doxycycline when the LLMD doubled my dose, and my symptoms were hard to blame on any one thing. Do you think the following symptoms sound like Lyme Disease? Exhaustion, peripheral neuropathy (buzzing in the hands/feet), internal vibration, headaches, flush of sudden heat, flu-like aches? Well, I did. They actually were my first symptoms. But they are also symptoms of untreated Hashimoto’s Disease (which is what I am now diagnosed with), or severe hypothyroidism (for those that have thyroid problems without the autoimmune portion), or surgical menopause or hormonal imbalance (which I am also dealing with). Do the following sound like neuro Lyme Disease? Intracranial pressure, pain in the base of the neck, severe headache. I thought it did. But these were my next symptoms and were actually due to a reaction to Doxycycline. Feel free to look up side effects of Doxycycline. Instead of taking me off of Doxy, my dose was doubled. I was told that I was herxing. The worse I felt, the better. Those spirochetes were dying off. Would you diagnose Lyme clinically with the following symptoms? Slight vertigo, blurry vision, sudden increase in eye floaters, foggy brain, word recall problems, joint and muscle pain throughout the body. I was clinically diagnosed. Turns out that every one of these could be explained by the combination of untreated Hashimoto’s Disease and surgical menopause. Once I stopped the Doxycycline, and was put on Synthroid for my thyroid, I became better instantaneously. I went back for a follow up with the LLMD and he acted like he didn’t understand why I was so much better. But by then my labs were back with one positive IgM band and low CD57. He didn’t even question that I had Lyme. Only now, he is upgrading me to Chronic Lyme because of the low CD57. He told me I had been infected for years, and this must go back a long time to have a low CD57. Even the book that he gave me to read threw out the CD57, but he said he still believed in the test and didn't care what the book said. Do you believe that the CD57 is to be used for a diagnosis? On what basis? He only gave my husband a CD57 test. Why didn’t he test him with a Lyme antibody test? I would love to hear any ideas you may have in support of this doctor using this as a proper diagnostic tool. Do you stand by the idea that my negative ELISA test, followed by ten negative bands of IgGs, with only one band of IgM positive is enough to put someone on intravenous antibiotics from Chronic Lyme, especially in light of a recently positively diagnosed Hashimoto's Disease antibody test?

It is true that I immediately went to a Lyme doctor, thinking that was the correct path, and I avoided mainstream doctors. Lyme was on my brain because of my recent travels and because a friend of mine had been talking about Lyme disease while I was on vacation. I am a rare soul that actually heard about all of this before my symptoms hit and I thought I was catching something early. I thought that contacting a local Lyme support group was the correct way to go about things. I went online for support from Lyme chat groups, and found unending information from Lyme patients that insisted that I stay away from ID doctors and the CDC, which I did for a long time. I did eventually start going to several doctors, and each portion of the puzzle was difficult to establish, but eventually I put it all together by doing research in each of these areas and seeing specialists. Doctors tend to be specialists in their particular area, so it is important to find a doctor that will eventually help you to look at the whole picture. But I believe that I stand as living proof that these LLMD doctors are either misguided or intentionally misleading patients. Do you think that a patient that has been dealing with symptoms for years might feel a sense of security in simply having a diagnosis and feel comfort in the fact that they have a doctor that is certain that they have a reason for their illness and a treatment for it? I know I would. But I also see what happened to me, and how easy it was for me to truly be convinced that my symptoms were definitely Lyme. But they weren’t. It isn’t always Lyme. Even if it feels so certain that it is. Even if it feels better to believe that it is and that you are doing something about it. For me, it caused me delayed thyroid treatment when I really needed it. I believe that adding strong antibiotics and not adding thyroid meds caused symptoms to persist and increase to a dangerous level. I can't imagine what these antibiotics would have done to me long-term. That is why I am here. Because I came here months ago looking for answers, and I hope that I may provide my experience for others out there searching.
Nice try NCL. It's almost believable. Let me quote this before the story changes...

Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Fri 23 Jan 2015 16:02
by ChronicLyme19
Sounds like you had a shitty doc.
nochroniclyme wrote:I put together what was, for me, a huge puzzle of unfortunate medical events that caused my symptoms. I had a partial hysterectomy on top of an underlying long untreated thyroid problem. This caused my body to completely crash, having no hormones in my body whatsoever. It took several months for my body to become devoid of these hormones, which made the connection hard to recognize. Compound that with the fact that your hormones are not supposed to deplete with a partial hysterectomy, and that I had a reaction to Doxycycline, and an even more severe reaction to Doxycycline when the LLMD doubled my dose, and my symptoms were hard to blame on any one thing. Do you think the following symptoms sound like Lyme Disease? Exhaustion, peripheral neuropathy (buzzing in the hands/feet), internal vibration, headaches, flush of sudden heat, flu-like aches?
That would be weird that they would suddenly come out on doxy when you never had them before. If you had those symptoms BEFORE being put on doxy, that would make more sense if the the flared when you went on it, but that wasn't the case. Doxycycline also treats many of the co-infections, your doctor should have tested you for those.
Well, I did. They actually were my first symptoms. But they are also symptoms of untreated Hashimoto’s Disease (which is what I am now diagnosed with), or severe hypothyroidism (for those that have thyroid problems without the autoimmune portion), or surgical menopause or hormonal imbalance (which I am also dealing with).
So you've now had a positive test for Hashimoto's (is that even possible, I'm not sure what the criteria are for positive diagnosis)? And you've had hormone and thyroid testing showing abnormalities as well? Your doctor should have checked you for these before jumping to the conclusion it was Lyme. Lyme is a clinical diagnosis because we don't have a current test that is 100% sensitive and 100% specific, but at the same time, they also need to rule out other conditions that cause the same symptom patterns. This is why Lyme is called the great imitator. You still need to be checked for other conditions in case it either a) is the other condition alone causing your symptoms or b) you are unlucky enough to get both Lyme AND other conditions.
Do the following sound like neuro Lyme Disease? Intracranial pressure, pain in the base of the neck, severe headache. I thought it did. But these were my next symptoms and were actually due to a reaction to Doxycycline. Feel free to look up side effects of Doxycycline. Instead of taking me off of Doxy, my dose was doubled. I was told that I was herxing. The worse I felt, the better. Those spirochetes were dying off. Would you diagnose Lyme clinically with the following symptoms? Slight vertigo, blurry vision, sudden increase in eye floaters, foggy brain, word recall problems, joint and muscle pain throughout the body.
This also seems odd your doctor would make you do that. Normally LLMDs don't want you flaring badly. If you flare badly they will take you off and try to figure out how to not make you flare. Small flaring is ok, provided it starts subsiding, but severe prolonged increasing flare sounds suspect. Yes, they want to kill the Lyme, but they also don't want to destroy your body by doing so.
I was clinically diagnosed. Turns out that every one of these could be explained by the combination of untreated Hashimoto’s Disease and surgical menopause. Once I stopped the Doxycycline, and was put on Synthroid for my thyroid, I became better instantaneously. I went back for a follow up with the LLMD and he acted like he didn’t understand why I was so much better.
Again, sounds like you just got a shitty doc. There are shitty docs all over, the IDSA and LLMDs. You doc should have been looking at the whole picture, especially when there was very little evidence you did have Lyme. AKA no tick bite, no weird rashes, no progression of declining symptoms, no neurological symptoms BEFORE the abx.
But by then my labs were back with one positive IgM band and low CD57. He didn’t even question that I had Lyme. Only now, he is upgrading me to Chronic Lyme because of the low CD57. He told me I had been infected for years, and this must go back a long time to have a low CD57. Even the book that he gave me to read threw out the CD57, but he said he still believed in the test and didn't care what the book said. Do you believe that the CD57 is to be used for a diagnosis? On what basis? He only gave my husband a CD57 test. Why didn’t he test him with a Lyme antibody test? I would love to hear any ideas you may have in support of this doctor using this as a proper diagnostic tool. Do you stand by the idea that my negative ELISA test, followed by ten negative bands of IgGs, with only one band of IgM positive is enough to put someone on intravenous antibiotics from Chronic Lyme, especially in light of a recently positively diagnosed Hashimoto's Disease antibody test?
Which IgM band, and where was the testing done? Also, I may be wrong on this, but I have never heard of someone using only CD57 as a sole diagnostic tool for Lyme. It's an indicator that something is wrong, and may be correlated in some Lyme cases, but I don't think it's something you can use as a sole diagnostic. Same with the elevated cytokine levels. They may appear with Lyme, but have yet to be proven they are a diagnostic criteria.
Doctors tend to be specialists in their particular area, so it is important to find a doctor that will eventually help you to look at the whole picture. But I believe that I stand as living proof that these LLMD doctors are either misguided or intentionally misleading patients.
Yes, I think everyone here will agree with that statement. But your experience here with one bad LLMD, does not mean they are all like that, just the same way we do not assume all non-LLMDs are evil either. A good doc, no matter what side, should be using a differential diagnosis no matter what org they belong to.

You still need to be ruled out for underlying conditions, or other sole conditions. You have to follow the clues to figure out if you have a) just lyme, b) just some other condition that shares lyme symptoms or c) some combo of both. It's tough. Most of us here went through tens of other doctors getting conditions ruled out. LLMDs are good because they will still consider Lyme in the differential diagnosis when most other mainstream docs take it out and just pass you from specialist to specialist, despite some blaring evidence you do have lyme such as symptoms onset in correlation with a tick bite/rash, or positive tests.
Do you think that a patient that has been dealing with symptoms for years might feel a sense of security in simply having a diagnosis and feel comfort in the fact that they have a doctor that is certain that they have a reason for their illness and a treatment for it? I know I would. But I also see what happened to me, and how easy it was for me to truly be convinced that my symptoms were definitely Lyme. But they weren’t. It isn’t always Lyme. Even if it feels so certain that it is. Even if it feels better to believe that it is and that you are doing something about it. For me, it caused me delayed thyroid treatment when I really needed it.
The problem here is that your doc wasn't looking at all the options, and they should have been. Many here have been misdiagnosed as well, and yes delays in treatment are terrible, no matter what condition(s) you really have. I'm sorry you went through that.
I can't imagine what these antibiotics would have done to me long-term. That is why I am here. Because I came here months ago looking for answers, and I hope that I may provide my experience for others out there searching.
As someone who's had to live on abx for two years to control my symptoms, I'll say it's not ideal. No doc ever wants to keep you on abx longer than you have to, but it is doable provided you do it carefully and with your doctor monitoring your blood work and taking lots of replacement probiotics. For me the consequences of not taking abx are MUCH worse than being on them. I go through every symptom you described to the point at which I'm a vegetable when I'm not on abx. On abx, I feel like a normal person again. My docs are still trying to figure out what the remaining keys are to getting me 100% well and taking me off abx. My case is complicated by an immune deficiency, so my body struggles to clean up the residual infection after the abx.

The main problem most of us had with the CDC video is that it makes people take sides, when the focus of the video should have been "it's complicated, you need to have ALL conditions ruled out, Lyme and otherwise, and if your doc isn't doing that, find a new doc". When it was clearly a slander campaign against people who do have chronic Lyme, and our docs, trying to make us look crazy. There's many of us on here that have underlying immune conditions that seem to be stuck with Lyme. But people with underlying conditions have problems getting rid of other infections too, not just Lyme. So it's pretty absurd when the CDC and IDSA make sweeping blanket statements that we 100% absolutely cannot have a persistent borrelia infection, when they don't know what other conditions we are dealing with. Generalizations like that are dangerous. Having someone being misdiagnosed with Lyme when they really have Hashimoto's is JUST as bad as someone being misdiagnosed with Hashimoto's when they really have Lyme and is JUST as bad as someone being diagnosed only with ONE of them when they really have BOTH.

ILADS docs are trained to go through a differential diagnosis that includes persistence borreliosis as an option, not just immediately jump to the conclusion you have Lyme based on a set of symptoms without doing the due diligence of ruling out other conditions.

Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Fri 23 Jan 2015 18:26
by nochroniclyme
Thank you for your response. Yes, I agree I got a shitty doctor. Is this the type of doctor that ILADS is recommending suspecting Lyme patients consult? Considering he is the top ILADS doctor in my area, and people travel literally hundreds of miles to see him, I worry about the state of patients' health and thus why I write. I waded through tons of information on the internet, and was unable to find much information in support of ID doctors and the CDC. In other words, there is a LOT of information on the internet saying that the tests are faulty, that you must treat clinically, and I found a lot of Chronic Lyme patients immediately jumping to the conclusion that my symptoms were definitely Lyme and that I needed treatment. This is why I am so relieved to see the CDC release this video.

Yes Hashimoto's is an indisputable diagnosis based on an antibody response. My TSH level was also sky high. My family doctor found the TSH level first. But I had been subclinical hypothyroid (and thus asymptomatic) for years, so didn't think this was the cause of my symptoms. I did go to my endocrinologist a day or two before seeing the Lyme doctor, hoping that this was the cause of my symptoms, and he didn't think that all of my symptoms were thyroid, only some. But again, this all hit at once and there were numerous factors that were coming into play. In particular, a rare reaction to doxycycline and also the sudden symptoms of surgical menopause, which I was told wasn't likely to happen. LIKELY to happen. And yes, all of my female hormones were depleted and evidenced by periodic blood tests. This is a hard area to measure when you have had a hysterectomy, because you don't know where you are in your cycle, and therefore takes time to measure. All hormones interplay, and so this sudden disruption caused my thyroid to also hit the roof at the same time. My ILADS trained doctor spoke of "ruling out other conditions ," but didn't do so. His actions spoke louder than his words. He insisted that Hashimotos and hormones would not cause any of these symptoms and literally laughed at me. And I realized in my last visit with him that he was playing psychological games. For instance, he told me "If you don't believe me, get off the medicine I put you on, and when all of these symptoms return, come back and tell me I was right." That is a fear tactic. It was in that moment that I realized that a lot of patients could easily fall into a trap with this kind of doctor, especially if feeling desperate for answers. And the symptoms have not returned. By the way, these symptoms were peripheral neuropathy, which is well-known as a common thyroid insufficiency symptom. Perhaps that is why I had this experience. I know I haven't been suffering symptoms for years, and therefore my diagnosis was a lot easier to discover. And yet I was still diagnosed as definitely Chronic Lyme by an ILADS doctor that is the number one recommended doctor in our local Lyme support group. So it makes me wonder how many patients are being diagnosed with Chronic Lyme that don't have hard evidence otherwise? And so I reiterate that it may be that patients need to dig deeper to try to find the cause of their symptoms. Again, I am not discounting the fact that some people do contract Lyme Disease. I am just saying that I think there is a lot of misinformation and that there are probably a lot of people that are misdiagnosed and need to be aware.

Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Fri 23 Jan 2015 19:14
by duncan
I would guess there is one thing we can all agree on, that being each of us must be our own advocate more than we ever would have imagined years ago.

We should familiarize ourselves with tools that help our medical causes. We should look more into the background and credentials of clinicians. We must become familiar with the strengths and weaknesses of relevant studies, and not simply accept findings blindly since well we know that few efforts are completely safe from bias.

We must look to our own health, and that is evidenced all the time these days, or so it seems. Whether by an exceptional story like that relayed by nochroniclyme, or by the testimonies of potentially thousands who may have been denied treatment for Lyme disease, or were under-treated for Lyme disease, or who wander undiagnosed with Lyme disease when a prompt diagnosis and quick and adequate treatment would probably have spared them the dark descent into the ravages of late stage Lyme disease.

Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Fri 23 Jan 2015 20:56
by ChronicLyme19
nochroniclyme wrote:Thank you for your response. Yes, I agree I got a shitty doctor. Is this the type of doctor that ILADS is recommending suspecting Lyme patients consult?
One that doesn't go through a differential diagnosis? No. And I will quote the ILADS website, under "Basic Information about Lyme Disease":
"Like Syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as Chronic Fatigue Syndrome, Fibromyalgia, Somatization Disorder and any difficult-to-diagnose multi-system illness."
http://www.ilads.org/lyme/about-lyme.php

Mind telling us who your doc was? Might not be a bad idea then to write a letter to ILADS, tell them your story.
In other words, there is a LOT of information on the internet saying that the tests are faulty, that you must treat clinically, and I found a lot of Chronic Lyme patients immediately jumping to the conclusion that my symptoms were definitely Lyme and that I needed treatment."
Well, yes, the tests are shit, and there are cases like me where I have an immune deficiency so I don't show an immune response to even things I've been vaccinated for. If they had waited to treat me until I had a CDC reporting criteria positive I'd be dead by now.
http://lymedisease.org/news/lymepolicyw ... -test.html

Hm, that's news to me. I really haven't run into many patients, wait no, I've yet run into ANY who jump to that conclusion immediately and tell someone they 100% have lyme. We all know how hard it is to figure out what conditions we have. Maybe you misinterpreted them, all your symptoms definitely COULD have been from lyme, so maybe that's what they were trying to say.
Yes Hashimoto's is an indisputable diagnosis based on an antibody response. My TSH level was also sky high. My family doctor found the TSH level first. But I had been subclinical hypothyroid (and thus asymptomatic) for years, so didn't think this was the cause of my symptoms. I did go to my endocrinologist a day or two before seeing the Lyme doctor, hoping that this was the cause of my symptoms, and he didn't think that all of my symptoms were thyroid, only some. But again, this all hit at once and there were numerous factors that were coming into play. In particular, a rare reaction to doxycycline and also the sudden symptoms of surgical menopause, which I was told wasn't likely to happen. LIKELY to happen. And yes, all of my female hormones were depleted and evidenced by periodic blood tests. This is a hard area to measure when you have had a hysterectomy, because you don't know where you are in your cycle, and therefore takes time to measure. All hormones interplay, and so this sudden disruption caused my thyroid to also hit the roof at the same time.
So then at least two other, non LLMDs also didn't diagnose you properly either. Glad you did find evidence of a hard diagnosis and that treatment for that made your symptoms resolve.
My ILADS trained doctor spoke of "ruling out other conditions ," but didn't do so. His actions spoke louder than his words. He insisted that Hashimotos and hormones would not cause any of these symptoms and literally laughed at me. And I realized in my last visit with him that he was playing psychological games. For instance, he told me "If you don't believe me, get off the medicine I put you on, and when all of these symptoms return, come back and tell me I was right." That is a fear tactic. It was in that moment that I realized that a lot of patients could easily fall into a trap with this kind of doctor, especially if feeling desperate for answers. And the symptoms have not returned. By the way, these symptoms were peripheral neuropathy, which is well-known as a common thyroid insufficiency symptom. Perhaps that is why I had this experience. I know I haven't been suffering symptoms for years, and therefore my diagnosis was a lot easier to discover. And yet I was still diagnosed as definitely Chronic Lyme by an ILADS doctor that is the number one recommended doctor in our local Lyme support group.
Sorry, that doesn't quite make sense to me either. If you think the LLMD was so manipulating and just jumps to conclusions, why would so many folks from your group recommend the person? You would think that if this person was constantly mis-diagnosing people with Chronic Lyme and treating them with abx, that it wouldn't work? And that these people wouldn't continue to sit there and suffer needless treatment if the treatment wasn't working?
So it makes me wonder how many patients are being diagnosed with Chronic Lyme that don't have hard evidence otherwise? And so I reiterate that it may be that patients need to dig deeper to try to find the cause of their symptoms. Again, I am not discounting the fact that some people do contract Lyme Disease. I am just saying that I think there is a lot of misinformation and that there are probably a lot of people that are misdiagnosed and need to be aware.
I'm going to have to disagree with you here. My guess is that it is many times more likely that people who do have persistent borreliosis are getting misdiagnosed with other conditions, than people with other conditions getting misdiagnosed with persistent borreliosis. I'll see if I can dig up some references later, but I think the average time to correct diagnosis for someone with late stage or persistent Lyme is in the several years range.

Edited to add the URL.

Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Sat 24 Jan 2015 6:44
by velvetmagnetta
Quite a bit earlier, nochroniclyme wrote:
Do the following sound like neuro Lyme Disease? Intracranial pressure, pain in the base of the neck, severe headache. I thought it did. But these were my next symptoms and were actually due to a reaction to Doxycycline. Feel free to look up side effects of Doxycycline.

I looked up the side effects of Doxycycline like you suggested, and though there are a lot of them, I can't find these. Of course "headache" is there but that is too non-specific a symptom to tell us much. But the "intracranial pressure" and especially the "pain at the base of the neck" sound much more telling to me. These symptoms are a little more specific to neuro-Lyme disease. I, along with many others, get a weird pain at the base of the skull. Is that where you meant? If not, what exactly is the "base of the neck"? Is it he shoulder area?

These odd symptoms that you mention are not explained by Hashimoto's, hysterectomy, or Doxycycline side effects. Perhaps you're strapped with neuro-Lyme after all on top of all these other horrible diseases? I sure hope not!

Re: CDC Video: "Feeling Worse After Treatment?"

Posted: Sat 24 Jan 2015 18:10
by Lorima
NCL wrote,
Yes Hashimoto's is an indisputable diagnosis based on an antibody response. My TSH level was also sky high. My family doctor found the TSH level first. But I had been subclinical hypothyroid (and thus asymptomatic) for years, so didn't think this was the cause of my symptoms. I did go to my endocrinologist a day or two before seeing the Lyme doctor, hoping that this was the cause of my symptoms, and he didn't think that all of my symptoms were thyroid, only some.


http://emedicine.medscape.com/article/1 ... view#a0104
Hypothyroidism
In hypothyroidism, muscle contraction and relaxation are slowed while duration is prolonged.

The amount of myosin ATPase decreases. Slowing of release and reaccumulation of calcium in the endoplasmic reticulum may decrease relaxation. In peripheral nerves, segmental demyelination has been observed with decreased nerve conduction velocities. Patients develop polyneuropathy with loss of reflexes and weakness. Decreases in vibration, joint-position, and touch-pressure sensations also are seen.

Thyroid deficiency can impair hippocampal neurogenesis, differentiation, and maturation in developmental and adult rat brains, suggesting a similar mechanism in humans. Hypothyroidism changes synaptic transmission and plasticity in area CA1 of the hippocampus, which, in turn, may be the mechanism that leads to impairment in learning and memory.[1]

United States
Thyroid disease is common in adults.

One survey found the prevalence of hypothyroidism to be 1.4% in adult females and 0.1% in adult males. The prevalence of Graves disease, a hyperthyroid condition, is 1.9% in females and about 0.19% in males. Peak age incidence is in the range of 30-50 years.
Congenital disease occurs in 1 per 4000 neonates in North America and Western Europe. This is seen more frequently in areas of iodine deficiency.

snip
I'm taking myself off this case. It's too hard to know what to say, to a patient, a family practice doctor, and an endocrinologist for Pete's sake, who had definitive evidence of a common, treatable condition like hypothyroidism, known to cause neurological symptoms, and all three chose not to treat it. This is just weird, if NCL's description of the case is accurate.

There seems to be a double standard applied to the unconventional LLMD doctor, compared to the mainstream doctors. The mainstream doctors and the patient failed to follow an uncontroversial standard of care, for a common and easily treated disease. Why not worry about that problem, rather than the complicated LD situation? It takes years to understand LD science, and years to understand medical and scientific culture and politics. I find it hard to be sympathetic, to someone who thinks they understand it, after 8 months. Why not spend time researching and discussing thyroid disease instead? That would be more relevant to NCL's actual health issues.

It's interesting how this case turned into a complaint about LD activism, instead of ordinary mainstream medical error, which is what it clearly was. I'll keep this example in the back of my mind, as well as the mention of "science-based medicine," which may refer to the blog Science-Based Medicine. Despite its name, the SBM blog specializes in complaining about Complementary and Alternative Medicine (CAM) which includes things like homeopathy, chiropractic, and acupunture. Once in a while the blog makes a foray into genuine medical controversies, but it rarely analyzes the science in any depth. Predictably, on the occasions they have addressed the LD controversy, they support the IDSA model to the hilt, and identify the dissenters with CAM. I would guess that this is where our recent participant NCL's resemblance to hv808ct comes from. People influenced by the same ideology, repeat the same ideas, almost by definition. It can be difficult to tell the individuals apart.

NCL, if I were you, I wouldn't consult the internet on medical matters; it takes a discernment to sort the wheat from the chaff, and you seem inclined to pick up the wrong end of the stick. You found a doctor who straightened out the hypothyroidism confusion, whom you like and trust, so I would depend on him or her for your future medical needs. I wouldn't meddle in other people's medical issues.

Everybody else, I agree that we have to take the existence of people like this patient and these doctors into account when thinking about medicine, and medical policy. But medicine is too complex, and there are too many gray areas, for it to ever be foolproof. All we can say in this case, is that the mistakes that were made are simple and obvious, and have little to do with the LD controversy. There's not much to be done, to protect people from their own impressionability.

As always, I will point out that if the mainstream guidelines on LD were not wrong, ILADS wouldn't exist, and although LD might still be difficult to diagnose and treat, we could at least be spared from the complications ensuing from IDSA's misinforming doctors about the disease, and the necessity for patient activism. Patients and caregivers shouldn't have to worry about public health, along with their own; but because the professionals who are paid to do this work are falling down on the job, we've been forced to do it ourselves.