I've lurked here quite a bit but this is my first post. I'm not new to Lyme.
I have a history of progressively worsening vision problems which I am starting to believe are the result of increased intracranial pressure, which I'm GUESSING has been brought on by Lyme.
I have a confirmed Lyme diagnosis, both clinical and via a positive Igenex test in 2010.
My MRI in 2010 showed a squashed pituitary gland which doctors and radiologists at the time wrote off as an incidental finding. I however have come to believe that it was not incidental, and that the "empty sella" they noted is in fact the result of increased intracranial pressure.
I'm now working with a decent LLMD and will be seeing a pituitary specialist at a major hospital to get a "mainstream" opinion.
LLMD just ordered an MRI of my head with emphasis on pituitary and optic nerve chiasm. (He wants to do MRI with contrast but I've read such awful things about gadolinium that I think I'm going to refuse the contrast, but that's another story.)
Anyway I believe the CSF which is squashing my pituitary gland is also squashing my optic nerves or some other vision-related nerves or tissue in my head.
So, bottom line -- has anyone reversed "idiopathic" intracranial hypertension by treating Lyme?
I don't tolerate antibiotics well so am about to embark on a pretty aggressive natural protocol with herbs and garlic.
I just would love to hear from anyone who knows a thing or two about Lyme as it relates to increased pressure in the brain.
Of course, I especially would like to hear from anyone with IIH who has achieved remission, since so much of what I read says that it is usually chronic and lifelong.
I turn 29 in two days and want to start a family soon. I have a great career ahead of me as an artist and I am terrified that this stuff will make me go blind and keep me from realizing my dreams of being a mom and making art.
Thanks everyone!
Posts: 14 | From CA, PA, NY | Registered: Mar 2012
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry to hear you're struggling with this. I too thought for sure Psuedotumor Cerebri was my issue (along with several doctors). I have vision issues, severe head pressure, light sensitivity, nausea, etc.
I did not have your MRI findings though. I underwent a spinal tap in February....all normal. I couldn't believe it.
I'm not 100% sure if Lyme is my issue or not. I do know I did not tolerate DOxycycline one bit. It caused massive head pressure.
I certainly can't comment on the remission aspect as I'm not well and never have made any real progress with the Abx treatment I have taken before.
I wish you the best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im so sorry you are going thru this. i am in the process of refusing the contast part of the mri and my neuro is beginning to think i am crazy cuz i am not beig a good girl and doing what he says...but i still dont understand how it can be worth the risk...if what he sees will only make him order a LP or put me on ms meds...both of which i will refuse
i have not had head pressure but i have a lot of visual issues. noone has seen a problem with my optic nerve or eyes that can be related to lyme
i had a close friend with lyme who's main sx was head pressure. he did not respond well to lyme tx(abx) until he had many amalgans and root canals removed and surgery to remove dead and diseased bone under root canals.
after that he did respond to abx tx and has gained back much of his health
not sure if any of this will help. but i'm glad im not the only one refusing the gad. thanks for the support on that.
and i hope you figure out what to do. good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I had such head and neck pressure that I could barely stand up and could not walk very far. �It was �excrusiatingly painful. �The hospital diagnosed me with IIH (Idiopathic Intercranial Hypertension), the other name for Pseudo. �I had an opening pressure of 29.
IV Rocephin enabled me to walk again and I got to 95% after 2 weeks. �I started to slide backwards after 2 weeks with increased symptoms that I had not experienced before. �The head and neck pressures were coming back as well.
What worked to just about eliminate it was Doxycycline 300MG/day (2 pills at night and one in AM) and 500MG/day of Biaxin. �Initially I had increased head and neck pressure and felt worst for about 1-1 1/2 weeks. �Doxy is known to increase intercranial pressure. �
At first I thought it was not working and that I would get worst, but I decided to stick with it. �Into the second week and I had felt so much better and thereafter all my pressures were gone.
This is not to say that I got completely well, but at least my most debilitating symptom was gone. �Fast forward two months later where I ran out of Biaxin and the pressures started to gradually return. �There had also been a shortage of Biaxin at that time and it appears that both ABX's were needed for me to sustain reduced pressures.
Now I am on Doxy, Bactrim DS, and Tindamax. �I have slight pressures at times but nothing like it used to be. �By next month I will try to obtain more Biaxin and drop Bactrim DS.
I think Doxy, Biaxin and Tindamax or Flagyl are a very good and potent combo. �This should hit BB as well as coinfections nicely. �Add GSE to Eliminate and prevent biofilm build up, which I think has happened in my case.
Posts: 2094 | From NY | Registered: Oct 2011
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I think for the past year I've been in denial about lyme.
I was just so frustrated from not tolerating abx well, and then I got a little bit of improvement finally after a short course of flagyl and I just kind of checked out after that.
Like I took the improvement and ran with it and refused to look back, or acknowledge that I needed to keep treating.
So now, I'm under a lot of stress, very busy, and I'm crashing, and the old symptoms are returning... plus my eyes are still getting worse. So it's been a wake-up call.
I started Byron White A-L Complex and allicillin (can't tell if it's the same as allicin, but my doc gave it to me) yesterday. Interestingly, I slept well and did not have nausea this morning for the first time in a week or two.
I think the BWF made me feel strange. When I was falling asleep last night I had all over body twitches and some heart palps. I suspect the artemisia, but that's just a hunch.
I also felt kind of spaced out or something -- hard to explain. Anyway, I'll take it! Something is better than nothing for me, at this point.
About the gadolinium -- I agree that it's hard to muster up the courage to refuse some of these things, but the stories I'm reading about gad just creep me out, especially with the delayed reaction (problems show up a couple of months after the exposure).
They have also found gad deposited in brain tumors and ovaries I believe, and some people with supposedly healthy kidneys have tested as having astronomically high levels of gad in their blood 6 months post MRI.
Anyway I'm happy to hear that some people seem to be able to reduce intracranial pressure with lyme treatment...
The thought of spending my whole life on diamox, or having to have a shunt placed really scares me!
Posts: 14 | From CA, PA, NY | Registered: Mar 2012
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