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Stone – do you know of any good lyme disease boards you can recommend? I’m going to an endo and a regular internist later this week and wanted to know where else to look if I don’t have any luck with these two.

Also if you have any advice as far as what tests to get done (other than what you’ve mentioned) that would be awesome.

Thanks again for all the info

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Thanks a lot for all of the in depth info Stone, especially the differentiation between the two Lyme disease organizations – I had only heard about that briefly but it sounds pretty significant. Also kinda pisses me off that people in the medical community can’t get on the same page!

I may or may not have Lyme but I’ve seen that “line in the sand” with docs and their take on other disorders as well so it’s pretty irritating, especially if it’s something you need help with.

I’m seeing a new endocrinologist later in the month so I will be getting some more hormone stats. I will also try to get an opinion on this from him, even though it’s not his area of expertise and he’s likely not “Lyme literate”.

I will likely start Lexapro soon since everyone whom I’ve seen recommended it (psych doc for the mental stuff, rheum for central sensitivity syndrome, neuro for the small fiber neuropathy, and the MD probably because it was easy to agree with all of the specialists lol)

I’ve been putting it off though because I haven’t wanted to just treat symptoms without getting to the root cause. Aside from Lyme, hypothyroid, protracted withdrawal from SSRIs (which seems super unlikely at this point with approx 16 months since taking them regularly), I’ve kinda run out of causes other than what I was diagnosed with: panic disorder, GAD, mild depression (going back to age 21 – 7 years ago), central sensitivity syndrome (which apparently is a broader and less specific term for fibromyalgia and or CFS) and the small fiber neuropathy (which I think is pretty insignificant but explains some of the weirder sensory stuff like paresthesias, burning skin, and maybe hot flashes – that everyone used to pass off as typical anxiety symptoms).

In any case I’m pretty damn close to being non-functioning so I gotta turn things around and typically like I said the SSRIs really help – I just get too busy living my life and feeling good after I start them so I forget how much my functioning really improves (pretty quickly, too) with them and how much I seem to need them. My fear though with using them is that I’m doing some sort of permanent damage to one or more parts of my body and that they are making my anxiety disorder worse over the long haul (which I certainly could be totally wrong about since organic panic disorder tends to be chronic, recurrent, and (maybe?) mildly progressive.

But I think I just gotta get over it and treat symptoms for now – and if that’s the answer long term, great, if not, I’m still going to actively explore other things as I go along.

I just wish there was (or if there is, I knew of it) a more definitive way to measure what’s wrong with people with CSS and/or panic disorder. I think the science is there to explain this stuff, but people (doctors, often times) don’t seem to want give precise answers about what’s going on in your body, how to measure it, and how to fix it – particularly with stuff like Fibro, or psych disorders.

But that’s why I landed on this forum in the first place, because Dr. M seems to be super knowledgeable about A LOT of issues and how to fix them. I would love to at least hear from him on this thread, and would definitely consider going to see him if he’s taking new patients, if only to get an expert viewpoint.

Anyway, enough ranting. I was curious though stonekiller: did you ever take any RXs for your extreme anxiety levels resulting from the Lyme. If so, what worked? I’m assuming if you didn’t take anything, that you somehow worked through things and, like you said, it slowly got a little better because your system needed a rest?

Also, sorry if I missed it in your post, but did you have any advice as far as how to find a Lyme literate doc in one’s local area?

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@stonekiller 3948 wrote:

http://www.youtube.com/watch?v=nzL1vlezCQM&feature=related

This is exactly how I felt when I started getting sick.

That’s pretty crazy stuff. I can relate to a lot of what she describes: immense anxiety, agorophobia (less in the beginning, but more so lately), panic attacks, depersonalization, derealization, and of course all of the physical stuff (basically the body feeling like it is breaking down making each day an incredible struggle).

She didn’t describe the physical stuff she went through, or at least I missed it, so I’m going to see if I can find a followup video.

I also find it interesting that she mentioned that a neurotoxin is released by the bug that damages all these different systems. It makes me wonder about my recent small fiber neuropathy diagnosis: I was having symptoms as far back as age 23 (4 or 5 years ago) but didn’t get the diagnosis until last month. She said at 27 years old, I was the youngest person she had seen with this. Unless there was some sort of genetic predisposition, there’s gotta be something that caused this (unless it was from several years of SSRI use, which she said wouldn’t be the case).

Now I’m really eager to look into this lyme disease stuff a little more. My anxiety and level of dysfunction right now is off the charts. I’ve been off all medications for 15 months (except for xanax a few times per week when needed) so it could just anxiety itself(?) having had time to fester and just get really really bad again. The pattern has always been get on SSRIs for 5-8 months, feel better, get off them, feel horrific again two months later and resume treatment.

So it definitely has always seemed like they help, but the question is are they helping suppress symptoms caused by primary lyme disease (which include big time anxiety) OR, anxiety itself? That would an answer I would love to find out.

If you don’t mind me asking stonekiller, what symptoms were you having specifically?

Have you recovered – even partially?

What treatments did you use?

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@stonekiller 3943 wrote:

I had alot of weird symptoms like you, mine were very intense anxiety that did not go away. I thought it was from drugs, and then hormones, and am now seriously considering lyme disease.
I really don’t have all that much knowledge on all of this, just might be something to consider getting tested, and the test’s can be very inaccurate. GL

Thanks for the input stonekiller. I have thought about lyme disease as being a possibility. I think I may have been tested for it when I visited with a neurologist, but I’m not sure. Regardless, as you said, the tests can be inaccurate so I’m going to add it to my list of other possibilities to keep looking into.

The one thing that makes me think it isn’t Lyme though is that the SSRIs always seem to provide significant relief of most of my symptoms. Since many of them are “mental” complaints, it makes me think that unless Lyme is normally the cause of mental problems, then it isn’t Lyme disease at play here.

Pretty much open to anything at this point, though. Want to hop back on an SSRI, but I don’t want to deal with the side effects and, ultimately, I don’t wanna throw a wrench in things if they’re not the best answer. (SSRIs)

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