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Girlie
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Date Joined May 2014
Total Posts : 33793
   Posted 6/7/2018 9:59 PM (GMT -6)   
dacarte3 said...
Interesting. I'm reading this lady's very detailed Acro blog journal. After her surgery, even after the structural symptoms stopped and reversed she still had many other health issues. Matter of fact maybe even more.

And guess what her symptoms are that are lingering, or getting worse, or popping up brand new? It's not structural acro symptoms but lyme symptoms.

So much so that she even mentioned Chronic Fatigue Syndrome. A big red flag for lyme.

We know lyme causes non-cancerous tumors, lumps, lipomas around the body. Why not the Pituitary gland? We know lyme causes dysfunction of the pit gland when it comes to thyroid (hyper and hypo) and adrenals, so why would lyme conveniently stop there and not affect the pit gland/liver with GH and IGF?

Just some interesting connections here.....makes you go ummm


Yup - it certainly could
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
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Date Joined Feb 2016
Total Posts : 1903
   Posted 6/8/2018 6:21 AM (GMT -6)   
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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 6/8/2018 11:05 AM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
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Date Joined Feb 2016
Total Posts : 1903
   Posted 6/8/2018 11:43 AM (GMT -6)   
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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

dacarte3
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Date Joined Feb 2016
Total Posts : 1903
   Posted 6/9/2018 10:02 AM (GMT -6)   
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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 6/9/2018 11:07 AM (GMT -6)   
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!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
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Date Joined Mar 2014
Total Posts : 5080
   Posted 6/9/2018 12:37 PM (GMT -6)   
Girlie said...
dacarte3 said...
Interesting. I'm reading this lady's very detailed Acro blog journal. After her surgery, even after the structural symptoms stopped and reversed she still had many other health issues. Matter of fact maybe even more.

And guess what her symptoms are that are lingering, or getting worse, or popping up brand new? It's not structural acro symptoms but lyme symptoms.

So much so that she even mentioned Chronic Fatigue Syndrome. A big red flag for lyme.

We know lyme causes non-cancerous tumors, lumps, lipomas around the body. Why not the Pituitary gland? We know lyme causes dysfunction of the pit gland when it comes to thyroid (hyper and hypo) and adrenals, so why would lyme conveniently stop there and not affect the pit gland/liver with GH and IGF?

Just some interesting connections here.....makes you go ummm


Yup - it certainly could


I have quite a few lipomas. I'm pretty lean so they are obvious. I always wondered if I could have something like those but more internal too. ?

Funny I was never able to find much online info about lipomas and lyme. My LLMD didnt have much to say about lipomas. There is even a lipoma forum/site but its limited in info.

Its like a circulation issue that casualness it I think. There just a flat ball of fat and crud that should not have accumulated in the first place.

astroman
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Date Joined Mar 2014
Total Posts : 5080
   Posted 6/9/2018 12:44 PM (GMT -6)   
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.

dacarte3
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Date Joined Feb 2016
Total Posts : 1903
   Posted 6/11/2018 4:30 PM (GMT -6)   
Thursday can't get here quick enough.

I hope catching it "early" is beneficial. There's supposed to be something like a 90% success rate if it's early and tumor is small, where they can completely remove it.

Success rate meaning the full removal in 90% of the cases results in no need for lifetime of medication.

The problem arises when it's not early (vast majority of the cases) and the tumor can't be fully removed.

I hope me recognizing the start of a few symptoms but nothing too crazy yet means it's early.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Post Edited (dacarte3) : 6/11/2018 3:40:34 PM (GMT-6)


dacarte3
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Date Joined Feb 2016
Total Posts : 1903
   Posted 6/14/2018 8:47 AM (GMT -6)   
Girlie,

When you got your MRI, did you get it with contrast?
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 6/14/2018 10:52 AM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 6/14/2018 2:27 PM (GMT -6)   
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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Mind body spirit
Regular Member


Date Joined Jun 2018
Total Posts : 71
   Posted 6/14/2018 3:23 PM (GMT -6)   
I’m sorry you are going through it.
Stay positive!

Not to diminish any of your experience in any way.
It is taught in many medical schools about the psychosomatic ability of the human mind, Especially when reading the physicians home journal. It is common to think we have any number of concerns or conditions, especially when we are facing challenges.

I have had deep experience with thinking I have any number of things.
Know and remember that Lyme is called the great imitator for a reason.

That being said, I have been hospitalized for brain encephalitis twice in 8 years. My head got so big I could not put on a baseball hat. The back of my head was so swollen I could not look behind me. My brow was swollen and the bumps either side of my external occipital protuberance were uneven, inflamed and very swollen.

I had (have) Lyme and 10 different coinfections.

I changed everything starting with what I put in my body. No gluten, wheat, grains, dairy, preservatives.
I eat as many natural anti inflammatories as possible, home made fire cider has really helped. I had a relapse when I had one beer and a little bit of bread and sugar. Took me a month to get the feeling to return in the back of my head from just a little slip up.

Hang in there!
Change everything and take care of that dome
Ticks>headaches>bells p>Lyme>abx+Av,ozone h20,c silver,Mms,healthy then more ticks,trigeminal neuralgia,b fog,Stage 4 Lyme w 10 coinfections. 30 days iv rochephin. Buhner+,90 day live foods,bowel then parasite cleanse,cacao,mg,b-12, enzymes,Vit c,vinegar fire cider. No sugar,wheat,dairy. Probiotics,uv therapy,magnets,dry brush,sauna,cold showers,walking,advaita,egoscue,emf free.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 6/14/2018 4:21 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 6/14/2018 4:29 PM (GMT -6)   
It’s Chuck Norris
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
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Date Joined Feb 2016
Total Posts : 1903
   Posted 6/26/2018 1:44 PM (GMT -6)   
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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 6/26/2018 2:34 PM (GMT -6)   
That's great you had a clear MRI and MRA (I can't remember the difference between the two)


I also had my mri of pit gland with contrast...

i think they would be looking very closely...and we have to trust there isn't one...if they didn't see one. After all, they're specifically LOOKING for one, right?

I also didn't have lesions...on my brain.

I don't think it's 'common' to have them...

Well, good news, all around, dacarte3. Wish you the best with your TMD/cranio-dental specialist.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 6/26/2018 3:46 PM (GMT -6)   
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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

The Dude Abides
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Date Joined May 2017
Total Posts : 1156
   Posted 6/26/2018 6:39 PM (GMT -6)   
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. smilewinkgrin

dacarte3
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Date Joined Feb 2016
Total Posts : 1903
   Posted 6/26/2018 7:39 PM (GMT -6)   
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. smilewinkgrin


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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 6/28/2018 6:53 PM (GMT -6)   
I had a less than satisfying consult with the TMD specialist today. I didn't get the gut feeling that he can help me. In his defense though, just verbally talking and making some visual observation he can only know so much about the situation. Taking x-rays in the next appointment. Hopefully that reveals more to them and we can make progress from there.

He noticed my muscles were bigger and tighter on the right side of face. He visually noticed the asymmetry. So he's projecting some appliance that "relaxes" jaw muscles is a good start. He made a point to state we should take it one step at a time and "fine tune" things, before he "starts moving things around in there, that may not be reversible if doesn't help or make things worse".

Sounds reasonable and logical but my gut feeling is already telling me that enough structure shift/collapse/derangement has happened that simply relaxing the muscles won't help much and moving forward with something that actually assists in moving things back into alignment is necessary. I really don't want to "waste" time doing something that wont help.

My unsatisfaction comes from the feeling I got from him that he probably believes I'm concerned from a vain, cosmetic perspective and that is rubbing me the wrong way a bit. But once again, in his defense, he doesn't know what things looked and felt like (with my jaw and head) before but I do. And my body "giving up" and collapsing relatively quickly isn't something you just see as "cosmetic" and ignore.

I may have to learn how to do the DIY protocol because my gut feeling is this isn't going to go in the right direction with this guy. It wont be too different then the "you are on your own" aspect that goes with almost everything lyme related.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 792
   Posted 7/22/2018 3:27 PM (GMT -6)   
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 7/22/2018 5:33 PM (GMT -6)   
Hoagie said...
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


I have thought about this a lot. Wondering about all the fear, the unknown, the pain....etc. it's like PTSD and I wonder if my brain has this constant cycle of despair and 'no hope'...the longer it goes on and I'm not in remission.

I have been tempted to do the Dynamic Neural retraining System.

You can get a package for $250.

/retrainingthebrain.com/instructional-dvd-series/
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33793
   Posted 7/22/2018 5:36 PM (GMT -6)   
Wondering how dacarte is doing lately.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 792
   Posted 7/22/2018 7:43 PM (GMT -6)   
Girlie said...
Hoagie said...
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


I have thought about this a lot. Wondering about all the fear, the unknown, the pain....etc. it's like PTSD and I wonder if my brain has this constant cycle of despair and 'no hope'...the longer it goes on and I'm not in remission.

I have been tempted to do the Dynamic Neural retraining System.

You can get a package for $250.

/retrainingthebrain.com/instructional-dvd-series/


I have thought about DNRS as well. Ive seen some amazing testimonials on it.

We gotta keep trying and researching. I assume some people just give up. But I believe there is a right way for everybody to achieve remission. To bad it's so difficult to find.
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