Second MRI to indicate intracranial hypertension

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k07
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   Posted 1/25/2018 9:02 AM (GMT -6)   
I received results from my second mri and it again says possible pseudotumor cerebri (intacranial hypertension). This time also showing minor dilation of optic nerve sheath, slight sagging of cerebellar tonsils, partial empty sella. I couldn’t get in to eye center until April. If syphillis or meningitis can cause this, I would assume lyme could to. Maybe even mold?

Also, I don’t seem to fit the typical profile for this - it says most women are overweight - I have been thin my entire life. And first line meds to use are basically diuretic to lose fluid - but I already pee too much!

Post Edited (k07) : 1/25/2018 9:36:56 AM (GMT-7)


Lapis_29
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   Posted 1/25/2018 10:51 AM (GMT -6)   
yes lyme can cause this 100%

I had many of these same symptoms and applying DMSO helped tremendously

I put some on my temples, behind and around my ears, base of the skull, and base of the spine. Relieved pressure in my head very quickly.

PeteZa
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   Posted 1/25/2018 11:14 AM (GMT -6)   
Your doctor should use the word idiopathic because you are thin. This should indicate to him that it is a result of something unknown.

I suspect lyme. Is this MRI done by a LLMD?

k07
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Date Joined Sep 2015
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   Posted 1/25/2018 11:45 AM (GMT -6)   
Peteza - last mri was in 2013 by neuro and he never even mentioned the finding - I read it on report. This latest mri is by a lyme literate functional medicine doc. The weird thing is my neuroquant software analysis of mri indicated mold and no lyme.

Thanks Lapis, I had read your thread on dmso. I do have it so will try on neck. I have been using for low back & hip.

It almost makes me wonder if my frequent urniation is actually a result of my body trying to get rid of fluid on its own. And if I separate symptoms out, the consistent ones could be the IIH and ones that have gotten somewhat better (although not completely gone) could be lyme and/or mold. Hard to know.

PeteZa
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   Posted 1/25/2018 11:57 AM (GMT -6)   
Wouldn't that be awesome if you body was trying to fix it all by making you tinkle!!!

I sure don't know much about this, but I really would be concerned also. I love functional medicine docs. I think they really look at the whole picture.

1000Daisies
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Total Posts : 2473
   Posted 1/25/2018 1:02 PM (GMT -6)   
k07, can you remind me on your testing? Were you the one who tested negative for lyme and was thinking maybe something else was going on? (I may be confusing you with somebody else!) [Yes, I know how unreliable lyme testing is...]

Just wondering what you are thinking nowadays are your main pathogens/issues????

FWIW - Kid#1 had frequent urination as a symptom (like multiple times per hour!) in the early days - before we even had any clue what was going on!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 1/25/2018 1:28 PM (GMT -6)   
Count me in as someone that dealt with the maddening frequent urination too! It was really bad in the beginning, but has gotten better for the most part.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Girlie
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Date Joined May 2014
Total Posts : 33852
   Posted 1/25/2018 2:09 PM (GMT -6)   
k07 said...
I received results from my second mri and it again says possible pseudotumor cerebri (intacranial hypertension). This time also showing minor dilation of optic nerve sheath, slight sagging of cerebellar tonsils, partial empty sella. I couldn’t get in to eye center until April. If syphillis or meningitis can cause this, I would assume lyme could to. Maybe even mold?

Also, I don’t seem to fit the typical profile for this - it says most women are overweight - I have been thin my entire life. And first line meds to use are basically diuretic to lose fluid - but I already pee too much!


k07 - Is this a 'regular' mri of your brain? Or was it dye-enhanced....or ?


Slightly sagging cerebral tonsils. Did they give you a 'number'?

RE: caused by lyme? In Suzy Cohen's Babesia symptom - list - she has intracranial hypertension on it. (It's mentioned with 'headaches'

/suzycohen.com/articles/lyme_babesia_treatment/

I can't remember - did you ever treat Babesia?
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2544
   Posted 1/25/2018 2:59 PM (GMT -6)   
Girlie said...
k07 said...
I received results from my second mri and it again says possible pseudotumor cerebri (intacranial hypertension). This time also showing minor dilation of optic nerve sheath, slight sagging of cerebellar tonsils, partial empty sella. I couldn’t get in to eye center until April. If syphillis or meningitis can cause this, I would assume lyme could to. Maybe even mold?

Also, I don’t seem to fit the typical profile for this - it says most women are overweight - I have been thin my entire life. And first line meds to use are basically diuretic to lose fluid - but I already pee too much!


k07 - Is this a 'regular' mri of your brain? Or was it dye-enhanced....or ?


Slightly sagging cerebral tonsils. Did they give you a 'number'?

RE: caused by lyme? In Suzy Cohen's Babesia symptom - list - she has intracranial hypertension on it. (It's mentioned with 'headaches'

/suzycohen.com/articles/lyme_babesia_treatment/

I can't remember - did you ever treat Babesia?


My first one was with contrast and this latest one no contrast. I trialed CSA & malarone. I sent report to llmd - will see what he says. They did not give a number on cerebral tonsils.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 1/25/2018 3:15 PM (GMT -6)   
k07 said...
Girlie said...
k07 said...
I received results from my second mri and it again says possible pseudotumor cerebri (intacranial hypertension). This time also showing minor dilation of optic nerve sheath, slight sagging of cerebellar tonsils, partial empty sella. I couldn’t get in to eye center until April. If syphillis or meningitis can cause this, I would assume lyme could to. Maybe even mold?

Also, I don’t seem to fit the typical profile for this - it says most women are overweight - I have been thin my entire life. And first line meds to use are basically diuretic to lose fluid - but I already pee too much!


k07 - Is this a 'regular' mri of your brain? Or was it dye-enhanced....or ?


Slightly sagging cerebral tonsils. Did they give you a 'number'?

RE: caused by lyme? In Suzy Cohen's Babesia symptom - list - she has intracranial hypertension on it. (It's mentioned with 'headaches'

/suzycohen.com/articles/lyme_babesia_treatment/

I can't remember - did you ever treat Babesia?


My first one was with contrast and this latest one no contrast. I trialed CSA & malarone. I sent report to llmd - will see what he says. They did not give a number on cerebral tonsils.


Generally speaking lower than "3" for cerebral tonsils is considered chiari. BUT, there is also something called Chiari "0".
It's whether or not the tonsils are in the way.

I read that an upright MRI should be done because when we're lying down, the tonsils aren't descending as much.

I've gone down that path...but have since filed that. Too many things to worry about with this darned disease.

Sometimes the more I 'dig' , the worse I feel....i end up with more questions. And no answers cry
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2544
   Posted 1/25/2018 3:48 PM (GMT -6)   
I did run across chiari when reading about IIH. My MRI report says this: "cerebellar tonsils are slightly low lying at the level of the foramen magnum." It wasn't mentioned on my first mri.

Did you have an mri that indicated this?

I've had head pressure and changes to my vision when I bend over since probably 2011. Around the same time as the humming tinnitus started. These were prior to my neuro symptoms in 2015.

I'm guessing at some point I may have to do a spinal tap to see what my pressure reads.

I'm worried if I have this, I was jumbling these symptoms up with the lyme ones and could be why I didn't get the response my doctor was expecting from abx. But then, lyme could have caused this so treatment should have made it better, one would think. I did find one post online where someone with IIH was going through the Shoemaker mold protocol and felt that VIP replacement was helpful. I will be doing that as long as my MARCoNs test comes back good in Feb.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2544
   Posted 1/25/2018 3:59 PM (GMT -6)   
1000Daisies said...
k07, can you remind me on your testing? Were you the one who tested negative for lyme and was thinking maybe something else was going on? (I may be confusing you with somebody else!) [Yes, I know how unreliable lyme testing is...]

Just wondering what you are thinking nowadays are your main pathogens/issues????

FWIW - Kid#1 had frequent urination as a symptom (like multiple times per hour!) in the early days - before we even had any clue what was going on!


I have no idea Daisies! I had IND from IGeneX, followed by a positive 31 epitope. Also, very high on the c6 ELISA. Totally negative through DNA Connexions. I do have a positive IGG for RMSF and did have one positive IGM for Brucella, and a low positive IGG for Bartonella. My doctor did say these low positives on the coinfections can be false positives.

I have a lot of the Shoemaker markers for mold. But my house tests fine and my urine only tested positive for gliotoxin - which can be aspergillus or candida. My neuro issues started after a bad reaction to monistat 1 - treating a yeast infection, which I hadn't had one of those in 15+ years.

I'm continuing on the Shoemaker protocol and also doing a yeast cleanse right now. I did have a strange event last week where I had 2 continuous nights of no night urination. That never happens for me - usually I go at least twice. I also did a dose of LDI (for borrelia only) during one of those days. I'm doing WAY too much at once right now so very hard to know if something is working. Pulling out all the stops because I'm coming up on my 3 year anniversary.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 1/25/2018 4:06 PM (GMT -6)   
k07 said...
I did run across chiari when reading about IIH. My MRI report says this: "cerebellar tonsils are slightly low lying at the level of the foramen magnum." It wasn't mentioned on my first mri.

Did you have an mri that indicated this?

I've had head pressure and changes to my vision when I bend over since probably 2011. Around the same time as the humming tinnitus started. These were prior to my neuro symptoms in 2015.

I'm guessing at some point I may have to do a spinal tap to see what my pressure reads.

I'm worried if I have this, I was jumbling these symptoms up with the lyme ones and could be why I didn't get the response my doctor was expecting from abx. But then, lyme could have caused this so treatment should have made it better, one would think. I did find one post online where someone with IIH was going through the Shoemaker mold protocol and felt that VIP replacement was helpful. I will be doing that as long as my MARCoNs test comes back good in Feb.


My MRI said my tonsils were descending "not more than 3mm" or something like that. (Which means no chiari to non-chiari literate Neurologists/Neurosurgeons)

But - something is causing your intracranial hypertension.

I became sick very suddenly...one night. I would think if I had chiari...it would have come on as a child/teen or young adult...not now...and not suddenly. That's what I keep telling myself..I had quick onset of so many symptoms...

I've had two MRIs of the brain. One was dye enhanced. It showed my pituitary stalk was deviated to the left with 'unknown significance'.

They weren't particularly looking for intracranial hypertension- but hope they'd 'see' it if it was there.

Your tests do indicate lyme - with the positive epitope test for band 31. Plus the RMSF, Brucella, and Bart.
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2544
   Posted 1/25/2018 4:26 PM (GMT -6)   
Yeah - just wonder which is causing symptoms though.

I did have an episode when I was 12ish where i lost my peripheral vision. Also had the pulsatile t in my 20’s which strangely went away when pregnant.

I keep telling myself one day this puzzle will make sense.
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