CDC Video: "Feeling Worse After Treatment?"

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
TwiceBitten
Posts: 56
Joined: Wed 12 Feb 2014 17:06

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

Post by TwiceBitten » Fri 16 Jan 2015 0:59

hv808ct wrote:
Re: CDC Video: "Feeling Worse After Treatment?"
Pos tby velvetmagnetta » Thu 15 Jan 2015 5:45

Now, we're up to 8 likes and a whopping 264 dislikes! And there is not one pro-CDC comment. Not. One.
As with most comments online, it’s the people who disagree who tend to comment. And it doesn’t hurt that the LDA and CALDA urged their membership to comment.

What’s interesting about the commenters is that almost all of them are women. Reminds me of CLADA’s last self-servicing survey of self-selected Lymees—88% were women. Now a question from Epi 101: what does this tell you about chronic LD?

Diseases can effect different people differently. Just ask the NIH.

http://www.aarda.org/autoimmune-informa ... -in-women/
Named a major women’s health issue by the Office of Research on Women’s Health at the National Institutes of Health (NIH), autoimmunity is the underlying cause of more than 100 serious, chronic illnesses. OF the 50 million Americans living and coping with autoimmune disease (AD), more than 75 percent of them are women.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

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

Post by velvetmagnetta » Sat 17 Jan 2015 1:49

hv808ct wrote:
Re: CDC Video: "Feeling Worse After Treatment?"
Pos tby velvetmagnetta » Thu 15 Jan 2015 5:45

Now, we're up to 8 likes and a whopping 264 dislikes! And there is not one pro-CDC comment. Not. One.
As with most comments online, it’s the people who disagree who tend to comment. And it doesn’t hurt that the LDA and CALDA urged their membership to comment.

What’s interesting about the commenters is that almost all of them are women. Reminds me of CLADA’s last self-servicing survey of self-selected Lymees—88% were women. Now a question from Epi 101: what does this tell you about chronic LD?
I think the more pertinent question to ask is: What does this tell you about chronic LD?

And whatever your answer is, I'm betting it will tell us all a lot more about you than chronic LD.

nochroniclyme
Posts: 4
Joined: Tue 20 Jan 2015 17:10

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

Post by nochroniclyme » Tue 20 Jan 2015 17:21

The CDC has posted this video to save patients such as myself, and I am grateful to see this happening. All of my symptoms looked like Lyme symptoms on paper. I spent several months avoiding proper treatment, and was even diagnosed by a supposed Lyme “Literate” Doctor as having Chronic Lyme. It started out as a single tick bite which was never found on my body, supposedly from my recent travels, which would mean at most 3 months of antibiotics. Then over the course of a month, he had me upgraded to Chronic Lyme, having been bitten years ago, which would mean antibiotics for an unknown length of time. He diagnosed me based on one positive IgM band and a low CD57. Those two things already are contradictory. A low CD57 is supposedly indicative of Chronic Lyme (even though it really should never be used as a diagnostic tool, as it is only a marker) and I had zero positive IgG bands. He diagnosed my husband solely on a low CD 57. He didn’t even give him a Lyme test. He was asymptomatic. He had it then traced back to my mother and father in law, and even down to my children. I sought out a second LLMD that told me that he wasn’t convinced and told me, if I had the money, to go to a specialized lab. Fortunately, I continued to research and came to find science-based medical reports. I understand that many patients are frustrated because they go from doctor to doctor and are unable to find a diagnosis and it feels as if they are alone and desperate. I was there. I went to ten different doctors over the course of seven months. I began to get my own blood work reports online, and analyzed every small abnormality. It turned out that I did not have Lyme Disease, and I now have found an excellent doctor, have a solid diagnosis, and am almost completely symptom free. I really believed in those first months that I had "Chronic Lyme." LLMDs can convince you that every symptom you have is related to "Chronic Lyme." And I believed it. At first. You must look at the way this is designed. If the test is negative, they will tell you it is a false negative, that the tests are inaccurate, or to go to a specialized lab. If you have a symptom, it is caused by Lyme. If you feel worse when on antibiotics, it is a herxheimer reaction. If you have a metabolic condition, it is caused by the bacteria. If you have no symptoms, the bacteria is hiding in cysts. My point in all of this is that everything can and will be linked to Chronic Lyme if you allow it. Do your research. Many people do have Lyme Disease, and I am not discounting this. However, I think a lot of patients are being taken advantage of because they have not found the true cause of their symptoms. There is a lot of misinformation on the internet, and people are feeding off of each other, creating myths that look like truths because of the numbers of people believing them. Be smart and do your own research by looking up peer-reviewed studies by scientists. The CDC is not evil, nor is the infectious disease doctor. But if you are told that they are, perhaps you will stay away from those people that might actually help you rather than putting long-term harmful, expensive antibiotics into your body. Very clever by design, I have to admit. I hope that this might help someone else that is out there searching like I was 8 months ago. “Maybe It’s Not Lyme Disease!”

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

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

Post by Lorima » Wed 21 Jan 2015 0:11

Gee, that sounds just like what hv808ct and Henry think. I haven't seen this happen, in real life. What I see is people with LD failing to be diagnosed. But I'm always willing to investigate. Please help us understand your unusual experience.

1) What were your symptoms?

2) What was your final diagnosis, what was the treatment, and how did recovery go?

3) Why do you think none of the doctors you saw (before the 1st LLMD) figured it out? Or did you somehow go to an LLMD first, before other doctors? That would be very unusual; if so, why did you do that?

4) Do you blame the other doctors, if any, as much as the 1st LLMD, for their mistakes?

5) What are the various explanations non-LLMDs, or the second LLMD, offered you for your symptoms?

6) Were you offered any other incorrect diagnoses and treatment by non-LLMDs? Should the CDC make a video about that?

7) Did any of these doctors suggest you were just stressed, depressed, getting old, or suffering the aches and pains of daily living?

8) What tests resulted in giving you your correct diagnosis?

9) How certain is/was that diagnosis?

And finally, I'm glad for you that you didn't get LD; but

10) you don't think that means that nobody has it, do you?
"I have to understand the world, you see."
Richard Feynman

phyfe
Posts: 167
Joined: Sat 15 Sep 2012 19:28

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

Post by phyfe » Wed 21 Jan 2015 23:31

And #11...if you don't have Lyme, what are you doing on a Lyme forum?

nnecker
Posts: 215
Joined: Wed 19 Dec 2012 22:57

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

Post by nnecker » Thu 22 Jan 2015 1:07

phyfe said:
if you don't have Lyme, what are you doing on a Lyme forum?
I agree with you phyfe.Everyone on this website who does not have Lyme,get the f__k off, now!!!

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

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

Post by dlf » Thu 22 Jan 2015 4:55

Geeze nnecker, I can't figure out what your intent was with that last emotionally disturbed outburst of yours.....Seems like these nutty red-herrings, angry posts and lack of reading skills must be contagious among your comrades-in-arms on this forum. Phyfe didn't make a statement. It was a question......and a legitimate one at that. Certainly nothing written in her post to agree or disagree with. Henry goading Duncan to provide specific symptoms to define late stage Lyme, led to the realization, that Henry wasn't really interested in having an answer. He wouldn't even bother reading a reasonable answer written by a practicing physician living in a highly Lyme endemic area which was published in a very mainstream American physicians journal. Then there was hv808ct's diatribe about IGeneX, which was just outright silly in some respects. By the way, IGeneX uses two strains for Western blot testing, not one. They generally use B31 and 297 antigens combined together in each test. So, what's going on here? Maybe you all need to take some anger management courses, or maybe a little CBT.

Of course your outburst could also, maybe, be understandable if you were the hidden controller of the shills on this forum. I never would have guessed from your posting history that you could actually be directing all of them.
Were you just telling your confreres that it is time to abandon ship; that they were all losing any credibility they might have had and that it is time to exit?

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

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

Post by velvetmagnetta » Thu 22 Jan 2015 7:30

nnecker wrote:
phyfe said:
if you don't have Lyme, what are you doing on a Lyme forum?
I agree with you phyfe.Everyone on this website who does not have Lyme,get the f__k off, now!!!
Really great to finally hear from you, nnecker. Inspiring, as always...wait a minute...didn't you say that you no longer have Lyme disease? You're going to have to kick yourself the f_ck off this Lyme forum.

Oh no! Don't go! :cry:

TicksSuck
Posts: 100
Joined: Thu 31 May 2012 20:25

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

Post by TicksSuck » Thu 22 Jan 2015 22:42

Re: Internet Shills
Postby TicksSuck » Thu 22 Jan 2015 3:29




nochroniclyme wrote:
But if you are interested, I am about to answer some of the questions on the original post.

Please don't let my paranoid comment distract you. I am (and surely many others here are) very interested in your answers!

TicksSuck
Tic Toc

No need to worry about format, just speak from the heart!

TicksSuck

nochroniclyme
Posts: 4
Joined: Tue 20 Jan 2015 17:10

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

Post by nochroniclyme » Thu 22 Jan 2015 23:27

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.

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