Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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auniecoley 05/18/2011

Hi Everyone,
I've been going to acupuncture to help with my PTC. I absolutely love the woman I go to and she has helped me with a variety of supplements and ideas. Today before my treatment she told me that she had been at this conference for Lyme Disease and that she couldn't stop thinking of me.

I will back up and say I have the typical PTC/IH symptoms... chronic headaches, diziness, ringing in my ears, heightened sense of hearing, trouble coming up with words, clumsiness...etc I was just diagnosed in March, and I am on Diamox, Lasix, and Amyltriptiline.

She gave me a checklist of symptoms and I couldn't get over how many are the same with Lyme and PTC. I've had an MRI and CT scan with dye. The way they diagnosed me was my opening pressure was 370 on a spinal tap. That is the one thing this checklist said nothing about was spinal fluid pressure.

So long story even longer....I was wondering if anyone has been tested or has any info on it? How amazing would it be if we all just had Lyme and we could be on antibiotics and make our pain go away....a girl can dream right!

Thanks,
Nicole

deleted_user 05/18/2011

I was . It should be part of the initial work up when you are first diagnosed . They also test you for Folic acid deficiency , anemia and many other things . A lot of doctors skip it but I was informed from being in this forum and I demanded it ! You should too ! Good luck !

deleted_user 05/18/2011

I too have thought of this and mentioned it to my Doc and my Neuro :) And didn't really get a response..I also read that there are tests that read false negative also. Def something to think about!

deleted_user 05/18/2011

I went to the ER because my mom thought my symptoms were because of Lyme's (I live in the middle of a forest) so she made sure the doctor checked for that. The doctor's came back with a, "No" and the next day I was diagnosed with IH.

pris72 05/18/2011

I brought up lyme disease to my neuro, and he looked at me like I was nuts. He said I am in Ga, and I do not have to worry about lyme. Well I do live on 5 heavily wooded acres of land. I have a PPO, so I wonder if I can just make an appt. for a 2nd opinion without prior authorization from them? I am just about to that point.

deleted_user 05/19/2011

Do they automatically test you during the blood test? Oddly, my neighbor came over today and asked if I had been tested for Lyme Disease... That's crazy! Because my OP was normal and I'm not overweight they were wondering if I should get tested..

deleted_user 05/19/2011

I think it is supposed to be part of the initial work-up. I read that somewhere .

deleted_user 05/19/2011

Lyme Disease has several stages. The advanced stage, where it affects neurological function, *does* cause intracranial pressure along with many many many symptoms similar to IH.

When getting a spinal tap, they do test for Lyme along with many other things like meningitis and other infectious diseases (neuro probably just didn't mention it).

However, at the advanced stages there can be false negatives- even with the more advanced Western Blot test. To get more information/ a second opinion, you would really want to go to a Lyme-literate doctor, not just a regular doctor.

Very interesting, huh? I read about this a while ago (always trying to find a cure.. just me and my computer hahaha) and I thought about getting tested but never really had the energy for it (was in the middle of acupuncture and a million other alternative treatments!)

deleted_user 05/19/2011

I asked my 1st ophthalmologist to test for it & he thought i was crazy. I then insisted on the test & they finally gave in! It was negative :-( i too was hoping for an "easy" answer to why my 7 yr old has this.....

auniecoley 05/19/2011

The woman that told me about it said that the "Elisa" test that is most often is used gives 50% false negative readings, She told me if I was going to be tested to ask for the "Western Blot" test.

Like MC2010 said the best bet is to find a Dr. who is really familiar with Lyme Disease. My acupuncturist gave me the name of one Dr. that spends his time between Boston and New York. I emailed him to see if I could get tested, but I'm assuming this is going to be something insurance will fight.

I have a neuro and neuro opt. appt next month, so I'll bring it up to them...maybe I've already been tested??

Just wanted to share this info just in case it can help anybody out there!
Nicole

deleted_user 05/20/2011

Hi, my daughter has been tested via bloodwork and spinal fluid. Her neuro actually brought it up. He said he has learned to not underestimate lyme disease. He also told me testing the CSF is the best test for lyme. so becuase she needed a tap to bring down the pressure he always has it tested for stuff, including lyme, just in case something changes.

deleted_user 05/20/2011

I was tested for it. I came back positive for having antibodies against it. I was soooooooo excited because this would answer many of the other little things the PTC didn't answer. I then had the western blot done, This came back 'negative' - it only showed the IgG 41 band. It neeed to show 2-3 to be positive. If it were lymes I could trace it back to starting about 2 years, so I would be in the advanced stages... so back to square one for me.

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