Sanity Check Post

Girlie said...

dacarte3 said...

lymelearner said...
Before I was diagnosed with Lyme and purely searching on the internet, it always came up with rare super dangerous things for me too, and that was very hard to deal with considering Lyme was upping my anxiety.

I know. But the brow bossing and forehead bossing,....there isn't much that explains those issues problem.

And if not very much explains that except Acro, one must take the necessary steps to check that out.

It's just logical (not anxiety).

Dacarte - isn’t it possible that Lyme has messed with your pituitary gland resulting with an increased production of GH? We do know that Lyme affects other hormones - like thyroid, adrenal, sex hormones.

Too bad you cant easily get your GH level tested right away instead of waiting for a ct or mri scan

Yes Girlie it is possible. But the only thing that's strange is there's all kinds of information talking about lyme (or anything) making too much thyroid hormone but nothing about it making too much GH UNLESS it's a tumor.

It's strange you would think the Pit gland would maybe produce too much GH just by malfunctioning and not ONLY because of tumor, ALWAYS. But I'm finding nothing.

However, I'm already ahead of you. I reached out to my LLND to get a lap test to check the levels.

Even if the MRI comes back all clear to finally put it to rest I want the levels checked. And with "normal" doctors (especially if the MRI is all clear) you have to give them some convincing reason and persuade them to check it. I don't want to go down that road.

With my LLND she'll just do it because I simply want too. That's the upside of LLNDs understanding lyme enough to know "check everything".

Even if I did the levels first and they were normal, I know it doesn't make sense, but it wouldn't put my mind 100% at ease (maybe 80%). I know not logical but it's true for my piece of mind.

Girlie said...
Dacarte - I totally get where you’re coming from - I’ll tell you my story about my pit gland.

In 2013 before I was diagnosed with Lyme - I was fortunate that my Dr took my symptoms seriously and she kept sending me for lab work to try to find out what was wrong with me.

After many weeks of testing a 24 hour urine cortisol showed high levels.
She sent me to the endocrinologist who then sent me for another lab test to rule out a pituitary tumor.
(Low dose dexamthasone test)
My cortisol was in normal range indicating my pit gland was fine.

Well I didn’t stop there - I paid for an mri to look make sure there wasn’t a tumor on my pit gland.
They didn’t see one - but they did see that my pituitary stalk is slightly deviated to the left (“of unknown significance”)

I also paid for a CT scan of my adrenals

Finally, I did another 24 hour urine cortisol test (a repeat of the original test that showed high levels and started the investigation in the first place
It came back normal.

I have to say that I do think about what is causing my pit stalk to deviate to the left...
And is something I want to mention to my LLMD in April.

My previous LLND didn’t think it was anything to worry about and if I was symptom free I might agree but I still have a few symptoms that are concerning so I keep thinking about that darn pit stalk deviation.

So I'm pretty much going to go through the same steps as you. Imaging and blood test. Though I haven't found anything on a non-tumor situation, where the Pit gland creates too much GH, why wouldn't it if it's malfunctioning? It can malfunction and produce too much and too little of other hormones such as the thyroid, so why would the abilities of malfunction just halt for too much GH? Because it's well known for too little GH to be produced, causes osteoporosis and other bone density problems. I just don't buy the opposite can't happen. Sort of like Hypo/hyper-GH similar to hypo/hyper thyroid.

Anywho, like you I need my mind at ease with an all clear (imaging and blood). Because I will, like you, will still do blood work because a tumor is not the only possible way too much GH can happen in my non-expert opinion.

But what's got me in limbo is the "shifting". Acro doesn't work on a shift. Not to mention no growth of hands, feet, lips, nose, ears, tongue. If there was some "growth" on the left but just not perfectly symmetrical on the growth, then I can understand. But zero left side growth and then to go even further a left side "shifting in" correlating exactly with the "shifting out" on the right.

The shift slant and protrusion/buckling it causes, just makes it all super weird.

But as confusing as all of this is, one thing that is not confusing, with rock solid certainty, the shift/slant is 100% happening.

Someone reading this post may think, well there you have it, what are you worried about. I'm worried because while I can explain most of the structural changes with pretty good confidence, my confidence in the forehead shift and buckling theory is not as rock solid.

TMJ specialist do call it "side bend and drop" and that is the very motion it's going. It's actually a great description because it's not a shift in perfect parallel with the ground but a "drop" too (because you know, gravity). So that "drop" down causing shifting and buckling of the frontal bone?

Do not know now, but will know soon.

I'll post my results.

Thanks for reading and chiming in guys and gals. Your listening hears and input is very comforting as there is no one to really talk to about lyme and all of systemic wide issues it causes.

dacarte3 said...
MRI schedule for Thursday.

I'm in a good head space right now. Realizing that what ever is the cause, whether it's Acro, or terrible dental health (misalignments, spaces in teeth, overbite, all my life and never took care of it) is finally catching up to me they are both highly treatable and resolvable.

And no level of stress, worry, and over thinking now is going to make whatever it is, magically not be whatever it is.

Also some of my hypothyroid symptoms are flaring, most likely due to recent stress, so it's my body letting me know to chill out.

Have a great weekend lymies.

Great attitude dacarte!

dacarte3 said...
"

But it's crazy how we lymies have to become biologist and doctors with our research and knowledge throughout the years. I swear at this point I could be given a PHD in many these disciplines (hyperbole).

Yes, its nuts. There should be some type of hybred Dr/biologist for the public, but we have none.

Even trying to find a Dr who understand muscle chemistry is impossible. I went to one who treated one of the #1 athletes of the world. This Dr was a stubborn, ill-informed, old school, ego-driven ***** who said lyme does not exist! Even with all the muscle diseases, the specialty Drs in that area are not very knowledgeable - i've seen them.

Girlie,

When you got your MRI, did you get it with contrast?

Girlie said...

dacarte3 said...
Girlie,

When you got your MRI, did you get it with contrast?

Yes I did - I think because the pituitary is so small and any cysts/tumors would be difficult to identify.

Okay I did too. I was just wreary about injecting a chemical into the blood stream. But you and another lyme friend said they did it too. Was just worried about if having lyme makes not so great things happen with that injection.

dacarte3 said...

Girlie said...

dacarte3 said...
Girlie,

When you got your MRI, did you get it with contrast?

Yes I did - I think because the pituitary is so small and any cysts/tumors would be difficult to identify.

Okay I did too. I was just wreary about injecting a chemical into the blood stream. But you and another lyme friend said they did it too. Was just worried about if having lyme makes not so great things happen with that injection.

I read A celebrity’s wife had a bad reaction to the gadolinium and then I started to look into that - and that freaked me out.
Can’t remember who the celebrity is.

So I got my MRI and MRA results yesterday. And all scans are normal. I specifically asked the neurologist about tumors and none were found. I'm hoping since I got these scans with contrast (which makes abnormal, tumor, cancer cells light up a different shade of color) that none went undetected.

So, with that said that rules out many things including the very rare condition I was worried about.

And to a certain degree I feel great about that of course. And I've already scheduled an appointment with a TMD/cranio-dental specialist (did thorough research on him to make sure he understands the bone/dental connection).

But there's just one lingering issue that is hanging around in the back of my head. While I can find all kinds of evidence and proof of TMD/dystonia issues that causes structural jaw bone changes and shifts and head bends (right side bend or left side bend), it's unsatisfying that I can't find much on the affect TMD-Dystonia has on the frontal bone. Just wish there was more clear cut information.

But in the mean time I can't continue to harp on something that has been medically ruled out via brain scans (plus the fact I'm not experiencing the other most common symptoms of that condition). I must mentally move on and hope it's all TMD-Dystonia related and getting proper treatment for that improves the frontal bone changes as well.

P.S. also very surprising there were no brain lesions. Zero. I was actually expecting they would find some since it's not uncommon with lyme.

Thank you girlie,

Yes you have to trust their analysis of the scans. Yes they are looking for abnormalities and you have to be the worse neurologist and/or radiologist to analyze them and NOT keep an eye out for tumors. So you have to trust they did (or what's the point of their job).

The "good news" is, I joined a dystonia facebook group and posted about frontal bone changes and within 20 minutes I got "satisfying" replies:

" I can feel changes of the bony structure on my forehead around the eye brows and orbital bone and hairline ridge; one side of my head is now flatter than the other and the right side of the back of the head is protruding more than the left side"

This poster describes it down to the T.

Another post:

" I also experience changes of my head's bone structures. I developed boney bumps above my eyebrows"

Ironically these post of other people with dystonia experiencing the exact same thing actually brings more "satisfaction" to my diagnoses then even the MRI scans. Illogical I know but true.

The Dude Abides said...

dacarte3 said...
So I got my MRI and MRA results yesterday. And all scans are normal. I specifically asked the neurologist about tumors and none were found. I'm hoping since I got these scans with contrast (which makes abnormal, tumor, cancer cells light up a different shade of color) that none went undetected.

So, with that said that rules out many things including the very rare condition I was worried about.

Great news, amigo! Congratulations!

As for the rest of it, if anyone will figure-it-out, it will be you. Just try to hurry, okay, so you can heal and then take me on as a patient.

Blood sweat and tears went into hella researching. I don't know where I would be with lyme and all the dysfunction it causes if it was 25+ years ago (pre-the interwebz).

The dystonia facebook group is very helpful. Already getting a lot message of people relating and giving me advice on how to correct this issue.

It's crazy how I research for weeks only to find a FB group where people are so knowledgeable on the subject that they were actually correctly guessing my structural changes and misalignment based on the information I provided them.

Wish I would have found it weeks ago, could have saved a lot of time and mental anguish. Interesting how "better" one can feel when they find others experiencing the exact same thing.

Similar to the support this forum has given me through all my lyme ups and downs and still supporting me now with this lyme caused dystonia fiasco that I must address now.

I'll keep you all posted.

dacarte3 said...


The worse part about lyme is the psychological torment it creates. That's the worse "symptom".

I know I'm chiming in late here, but this is spot on for me.

I always notice that when I have hope, I feel better in every way. For example, when I found out I would be starting HBOT and the benefits it offers, I started feeling better even before my first dive. A couple weeks after my last dive, the symptoms started creeping back in. Now I have some hope in a new therapy that I plan on starting in a week or two, and I am feeling better.

I am in the middle of a disability claim I filed through the VA for service related issues. I recently got evaluated by a psychologist for the psych portion of the claim. Most of the evaluation was blah, but she said something to me on the way out that I have heard in some form or another before, but at that point I really needed to hear. She said that even though I have all this crazy stuff going on (Lyme, brain lesions, etc...) keep a positive attitude and thought process. Positivity can change physicality.

I know, easier said than done, but if we can just find a little hope in our situation, we can focus and meditate on that. And I think that would do wonders for our healing

Wondering how dacarte is doing lately.