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.