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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Idiopathic intracranial hypertension (IIH),
aka benign intracranial hypertension (BIH)
aka pseudotumor cerebri (PTC),

Here is my story:
I was diagnosed with IIH on May 2011 and suffered it for 3 ½ weeks. My only symptom was stiff neck and headaches/head pounding, and blurry vision from time to time and I had been given Diamox for this. I also had difficulty breathing, jaw stiffness, and neck tightness from time to time and my heart would race. This would come and go in waves and be so unpredictable. All my blood work and CT, MRI, XRays came out normal. Only issue was slightly elevated cholesterol (176).

I had a feeling that I had Lyme, based upon the fact that so many people around where I live have it (with 7 houses around me producing 11 individuals with Lyme, and 2 who were bit but not symptoms YET. I am sure more to follow). Initially only the shortness of breath we had in common. Mind you that all the hospitals and doctors that I had visited did not think I had Lyme. I went to a Lyme Literate Medical Doctor (LLMD) and my test results came back negative. I had also seen some MINOR muscle twitches (about 1 or 2) about the time I received my test results back & mentioned this to the doc. I did not think they were muscle twitches at first, I thought it was a clog passing in an artery or vein. He decided to treat based upon symptoms (thankfully). The doc started me on IV Rocephin (2MG/day) and the very first time I received it (by late evening/night time) I felt so many involuntary muscle twitches ALL OVER MY BODY. I also felt my head/brain fluttering and trying to compensate for the head pressure. I fought the neck stiffness and head burns and decided to wait to take my next Diamox pill. I was able to take the pressure and the very next day of my IV dosage I felt that my head was more able to compensate for the pressure and I was finally able to stand up and walk to some degree. After two weeks of hell and the brain pressure battles and feeling like I am dying, I finally felt like myself going from the 2nd week and into the third week. The first week of IV treatment I also developed new symptoms:

-Small insect crawling on skin or coming into contact into a spider web feeling (nose, ears, limbs, head).
-More involuntary muscle twitches (small muscle contractions).
-Whole limbs (hands or feet) jerks or bolts. Thoracic jerks or bolts.
-Vibrations in the back of my head/neck, vibrations in the back of my thoracic (spinal column).
-Waves of exhaustion went away and I became more active and could drive again.

After 4 weeks of treatment more symptoms (but all along neck and head pressure relieved to where it was bearable). Some days better and others not as good, but nowhere near where I needed to take Diamox or could not walk or drive.
-Some joint discomfort (elbow, knee).
-Testicles become kind of sore
-Had some thoracic jolts and jolts that extended my spinal column into my thighs.
-Burning sensation on my calf once that lasted 2 seconds.
-Pains that would be in different places at different days and times. From pain in knee, to pain in forearm, pain under left or right chest, pain in rib. They would only last a few seconds and go away.

After 6 weeks and into the 7th:
-Started to develop jaw tightness and clicking of the jaw. But this would come and go in waves.
-Had more pains that lasted a few seconds that would come and go in various body parts.
-Involuntary muscle twitches.
-I started feeling more and more like myself. Slight head and neck pressure would come and go from time to time, but I had many good days and many good hours of feeling like my old self. The fact that this came and went, made me realize that this is a longer battle than what I thought it would be.

Things that you need to keep in mind and note:

-There are many more false negatives than false positives for Lyme, so you cannot use testing results reliably (IGb and Western Blot tests)

-Many of the people who have Lyme do not have the typically coined “Bullseye rash”. I included, as well as four others in my neighborhood alone.

-You can have Lyme for years before it shows any symptoms. You can develop symptoms and live with them for years before it is apparent to you that you have Lyme. Lyme produces so many of the human complications, all depending on the individual and where it hits the individual. Lyme itself is a spirochete that can pass from organ and tissue to anyplace in your body. It has no limits within your body and co-infections make the condition and penetration worst.

-Some ticks are so small, size of a poppy seed, and are VERY hard to detect on your body. It can crawl in a crevice such as your belly button, behind your ear, behind ears or on hair line. In your hair, between your toes…etc.

-You can get Lyme just by simply walking on your grass, getting your mail. Going to a concert, seeing fireworks display on the 4th of July in the park. A gust of wind can appear and blow one on to you from a grassy field or wooded area.

-Unfortunately the hospitals and general practice Medical Doctors don’t know enough about Lyme or they think they know (when in fact it is so much more complicated than what they actually know). So you will have to see a Lyme Literate Medical Doctor (LLMD) who has seen and studied cases for years. The best way to find one around your area is to look up a Lyme support group in your area and inquire within the support group. At times you might be able to find one via message boards or inquiring with a message board user that comes from your area.

-Treatment is with anti-biotics and is typically lengthy, anywhere from 1 month to a year and even years. All depending on how long you have had Lyme for.

-Lyme is also complicated in that not only can you become infected with the Lyme (Borrelia burgdorferi bacteria), but with other co-infections as well (Babesiosis, Bartonellosis, & Ehrlichiosis, as well as the potential to transmit viruses)

-Watch video clips on you tube from people who have Lyme and do a search for a movie called “Under Our Skin” which is a great documentary on Lyme. You can also see clips of that movie on you tube. Do PLENTY of research, since there is so much information and always new info to be acquired.

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