Hi - I'm a 43 yo male, with increasingly debilitating symptoms - recently applied for disability - and thought that in addition to the doctor merry-go-round, folks on here might be able to provide some answers.

While I suffered from anxiety, seemingly minor GI issues and memory concerns as a youth, I was able to make my way in the world. However, the past 5 years have presented a very concerning slide, with a few diagnosis, mounting symptoms and no therapeutic relief.

Overview: In 2010 I was diagnosed with celiac disease and in 2013 I was diagnosed with hashimotos disease. Those are reasonably unquestioned. I was also diagnosed in 2014 with Lyme disease by an LLMD, after MANY failed conventional lyme tests. I have followed the recommended treatment for all of the above and am now 2 months into the Cowden Protocol - herbal tinctures - for lyme.

I'm trying to keep this brief...

Symptoms: My symptoms are so wide, that I don't know where to start...and neither do my doctors. They're stumped, which is very disconcerting. I get sufficient sleep and yet wake-up feeling COMPLETELY drugged, disoriented, exhausted, weak, shaky and often need to have a bowel movement. My GI symptoms have certainly worsened over the past 5-years -- ironically, after going gluten-free. Sadly, these symptoms do not abate. I can no longer think clearly, at all, and fear that this is neurodegenerative.

I need to take multiple naps throughout the day, which do little to help, but I simply cannot stay awake. I also have increasingly noticed an inability to hold my head up, as if it is sinking into my neck/shoulders. I asked for a myasthenia gravis panel, which came back positive 4.20 (0.00 - 0.24) for the ACHR binding abs serum. This has completely stumped my neurologist, as he suggested that I do have typical MG symptoms - ptosis.

I also have mood irregularities and am going to see someone about going back on an SSRI. I have pursued MANY conventional and non-conventional paths on this front and while they have helped to smooth out any mood irregularities, they have done nothing to help my symptoms. I firmly believe that the mood irregularities are a by-product of whatever is going on, not the cause. My neurologist agrees.

I try to stay positive, but my brain and body feel completely fried and constantly remind me of how disabled I have become. I'd be happy to share more...as if this isn't enough.

All thoughts/suggestions welcome. Thanks!!

Hi enlighten

Welcome to NeuroTalk .

How is your Hashimoto's Disease being managed? If it is not managed well it can lead to many of the symptoms (fatigue, depression, etc) that you have described.

Standard treatment is taking synthetic thyroxine every day.

I suggest that you get your doctor to check your plasma levels of thyroxine (both T3 and T4) as well as your TSH level. Depending on the results, it may be necessary to increase your synthetic thyroxine dose.

Often this is done by titrating it up, with regular monitoring of T3, T4 and TSH levels.

All the best.

Hi enlighten
Welcome to Neurotalk - sorry that such a debilitating array of symptoms and conditions has bought you here - like many of us - but you're in good company and I hope you find some answers.

To address your symptoms - kiwi33 is right about getting your Hashimoto's checked and monitored. Given that you already have two auto-immune conditions (with MG as possibly a 3rd), it's possible you have something called Autoimmune Polyendocrine Syndrome (APS) There are several different categories of APS and new research appears to be indicating more might be possible. Here's a link to some info about it:

http://press.endocrine.org/doi/full/...edrv.23.3.0466

If you aren't already being seen by an endocrinologist I would request that your neurologist refer you to one (or an immunologist). Also if you haven't already had cortisol testing done you might want to request this - make sure they do the 8am fasting protocol. The waking up shaky in the morning could be due to inadequate cortisol production. Have you had any recent unexplained weight loss, craving salty food or other vague symptoms.

Please feel free to ask any questions and I'll try to help where I can. I'm not a medical professional but have some personal experience with endocrine disorders.

Hope this helps.

Hi and welcome to the forum.
So sorry for what you are going through.
I know alot about Lyme Disease because I have had a very long battle with it and like you,
I had a bizarre list of symptoms.
What antibiotic treatment did you have, oral or IV and for how long?
Did it relieve any of your symptoms?
I assume your doc also did the tests for all the other infections you can get from a tick bite like basbesia, Erlichia, tularemia, etc.

I know how frustrating all these symptoms are no matter what the cause.
I will come back and put in a couple links to some Lyme experts.
I wish you the best,
Diandra

Hi - Brand new here. I'm not sure if you have taken into consideration Hashimoto Encephalopathy? My wife has just started to go through this and we believe we found her diagnoses with HE. Not sure if you fall into the category, but it does affect the neurons in the brain... causes brain fogginess, lack of energy, and loss of memory. She's had intermittent speech issues as well as the right side of the body going into jerking motions (mainly the arm and fingers). But lately, she has been suffering from the lack of energy that you describe as well as needing to take naps but it doesn't make her feel any better. I hope and pray HE is the answer and we can get it under control. We won't know until we see the Endocrinologist ....

Please take a look at this one if you haven't already and the best of luck. I will check back in.