posted
I don't know what I have or if all my symptoms are related, but here it is:
Somewhere around 2005/2006 I started experiencing some unusual psychological symptoms best described as mania. I would feel extreme euphoria and sort of surrealness and intense energy. I kept telling myself this was not right and some wires were crossed up there, but it felt too good and it made life more interesting. I didn't think it could be a medical problem that could be tested or fixed. I had a hard time judging because I was on adderall for several years before that and was just off of it about 2 years at that point. Adderall made me depressed and anxious so I stopped it. Around this same time my neck started hurting at the base of the skull all the time and my vision started doing a weird thing where my field of vision "jitters" when looking at things at close distance. I was also hungry all the time. This lasted about 2 years or more
I also had a super bad upper respiratory infection that had me coughing and feeling horrible. It was probably the longest and strongest I ever had. Can't remember when. My ear got infected and a doctor had to scrape the blood out. I do remember I had just started allergy shots before I got the super long URI that lasted like 2 months off and on with bad congestion and had to stop when you get URI's and didn't start them up again.
Two years later suddenly one day the extra energy, euphoria and hunger stuff all went away and I gained like 30 pounds in a few weeks. I no longer had any super highs or even lows, I just felt normal and very even. I was single digit body fat and it was very strange. Around that time I started to get a weird sensation in my legs like ice water was pouring down them.
I stayed about the same for 2 years until my pain spread to my jaw and temples and shoulder blades and chest. When these symptoms flared up and spread one day I also developed tinnitus which has never gone away along with most of the other pain that spread.
I eventually figured out my dizziness and tinnitus and other pain was cause by trigger points and eventually found out there are people who treat that and saw a special message therapist for that. After a few treatments she gave me the business card of a doctor to test for underlying perpetuating factors. Some how he tested for Lyme disease with igenX and said I had it. I was skeptical and got a referral from lymedisease.org and showed my test to a doctor listed there.
I decided to try treatment and see what happened. I took bactrim, rifampin, minocycline and azithromycin. I was told I had Borrelia and Bartonela. About a month into the antibiotics I started to get sensations of ice flakes or cold rain drops falling all over my body. It was just like the sensation I had for a year from years before, but now all over my body. After two months it was really all over, it may have started in my legs. After 6 months of antibiotics and learning more about this lyme disease thing I decided people were not getting cured and the tests were not good enough to prove the cause and I was not feeling any better so I stopped. I had actually developed this strange neuropathy all over, so I didn't want to mess around. I was feeling hot and cold things all over. Ice and burning/stinging. At some point I got a constant burning in my feet and partial numbness. That lasted 3 weeks and thank goodness went away.
The neuropathy stuff lasted over a year, but slowly calmed down and went from all over to slowly the lower body and feet. After about 18 months it may have been all gone and I forgot about it when suddenly it game back all over again. I was about 10 days into an upper respiratory infection when it happened, not sure the cause. I then started to recover and it started to go away and about 6 months later I got another upper respiratory infection and about 10 days into it the symptoms came back all over again strong.
That is pretty much where I am now. I'm going to a neurologist and getting tests done. He tested for the standard auto-immune stuff which was negative and is alto doing evoked potential tests and EMG's again. My EMG and small fiber biopsy a few years ago was negative from Johns Hopkins and they discharged me saying it was probably some kind of immune mediated thing. None of the neurologists have ordered a brain MRI's yet since the neuropathy thing which has been going on for about 4 years.
I plan to get the new nano trap antigen test for Lyme disease when it comes out and any future FDA approved Lyme tests that I can rely on. I'm also considering some more advanced anti-body tests for gluten neuropathy. The celiac TTG test was negative.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Some of this is hard to read because it is in huge chunks, but from what I could see it sounds like I could have written most of it myself
LYME and co.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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