posted
Hello everyone, I am seeking a LLMD in Sussex county since my current Doctor doesn't seem to know much about lyme and I really think that i have it.
I began working at a camp this summer. Two weeks ago, I began having vertigo, where I would feel like I was on an elevator going up all the time. I feel it like waves going through my body..I had some other weird things happening- a weird feeling around my lips that I couldn't identify, pressure in my head and the feeling of just going crazy but not knowing why. It seemed that driving made my vertigo worse and that the more I spoke or worked, the worse I felt.I went to the Doc and he put me on prednisone and then again one week later to try again for a longer period. Each time I came off it, I felt horrible for a few days- so bad that I stayed home from work. Symtoms included puffy face and everything was swollen, in addition to the vertigo pretty bad. I was diagnosed with Benign Positional Vertigo.
The maneuver didn't work and a week later i still have vertigo and symptoms. I was refered to a ENT, who's PA first diagnosed me with BPV then he came in and said I didn't have constant eye nystagnus and I had migraine basilar. He gave me some horrible drugs for the migraine that did not work. I went back not understanding his diagnosis and treatment, that I had vertigo with these migraines, which I could only treat with meds but could only take 9 pills per month for symptoms. So the rest of the month I was to feel badly without meds? He said I could potentially have vertigo with migraine for a long time. I have this 24 7 and it gets worse with driving and other things, and so I am to believe before a few weeks ago, I never felt like this and now all of a sudden I have this vertigo mirgaine all the time that can't be treated? He said that people get this migraine off of a sudden and have vertigo as an aura with it and it could last a long time...He also told me I may have MS but told me people don't die right away. OMG, I left crying.
I follow up with regular Doc, who ordered blood tests, one was the lyme which came negative. He didn't think I had migraine and I told him the mirgaine meds didn't work. That Wed and Thurs I ate really poorly, lots of Doritos (weird, since vertigo began I eat them constantly) and had chills and muscle aches that went away the next am, then again the day night this happened. So weird.
So, I realize something- June 23rd I was bitten by something on my ear and it felt weird so I asked someone at work about it and told her that it felt weird. She looked and told me it was just a bite.
One month later, I develop these chills/fever... could it be hypomagnesmia? Could it be the monthly cycle of Lyme?
Next few nights I think more and notice that my symptoms get worse when it rains..
I began look up Lyme and realized i had some other symptoms- rib pain. I thought it was from the Prednisone water retention that made my skin hurt and feel swollen, but one night it was ONLY on my ribs and I remember palpating and saying to myself, it doesn't hurt anywhere else and this can't be water retention.
I also have eye twitching, brain fog and feel like i am going crazy, pressure in my head, swollen face, disoriented at times when the vertigo is bad, and now...
Since last week I have tremors when I put my hand in a specific way, it shakes. I have no idea whether its musclar or related to my joints, since those seem stiff as well. The other night I noticed my jaw was stiff. Today I notive my fingers get locked up and feel shaky when I curl my fingers and they feel stiff and overtied the more i use them. The tremors and shaky feeling that I get could have been there all along, but it's something that if I wasn't paying attn during movement, and plus I thought it was vertigo related, or it could have been a new monthly symptom with the aches.
So, Sat i call the oncall Doc- He puts my on Amox 500 mgs 3xs per day. Blood test comes out negative so my doc asks me to come in.
I go in with a list of symptoms with the info on the leg test and everything- he barely listened and just refered me to a Neurologist- said that the tremors can happen the more I think I am having them- they can get worse. Actually, last week i showed up to show him when they began, he sent out his nurse who told me prednisone, which I hadnt been on in a week, could cause this- thanks for paying attn Doc!
Anyhow, I now realize that the weird lip feeling i had was a tingling or sensitivity of the muscles in my face. SInce the vertigo began my face has felt funny- sort of droopy and really puffy. It has not looked normal since this all started and got worse with the prednisone and never went back to normal. I notice that when I try to smile, my face muscles twitch and it's harder to use the muscles. I don't have numbness or palsey or one sided weakness, but overall weakness or maybe its the muscle twitching that makes it feel week- not too sure.
I have also been obsessed with eating Doritos every day and while I am doing so, I have been worried lately about choking. now I realize it's probably due to the face weakness or maybe even a swallowing issue, although I am not sure if there is an actual swallowing weakness. After reading lyme symptoms, things seemed to make more sense- like with the rib pain and weird aches, it all makes more sense now...
the water retn, which may not be related hasn't gone done and I have had this before due to hormones, but its' worse now
Oh, the SOUND sensitivity. Oh my, it took me a while to pinpoint what exactly was driving me crazy but my Husband eating chips drove me so mad I yelled at him to stop it. I also notived an extreme hypersensitivity to anything that will make my jump- whther the phone ringing or just anything that may alert will startle me to the point that it goes right through my body!! I have also have the photo sensitivity, but sound it worse.
this makes sense why the more I worked and spoke the worse my head felt- it sound from my own voice and the other persons, the light from my PC and all the stimuli made me feel horrible and almost crazy- it would make me cringe and recoil. It felt like waves going through me- almost like the vertigo through my arms and body... so weird. I would need to go to bed after talking to the husband for like 20 mins on a bd night, and the only thing that would make me feel better was quiet.
Another weird symptom was a week ago, I told the hubby that i had the worse nigghtmare of my LIFE. THen I read ther Lyme symptoms and said that makes sense- the dream was just soooo horrible and real that it was something I sepficially mentioned.
I thought my heart beating faster was due to the prednisone, but since it continued afterwards, i now releaze it's another symptom that I did not have a month ago. It was so bad that my own heart kept me from sleeping, since it was pounding.. I have had this when I retain water but this dones;t seem to go away.
I also have had other symptoms like extreme anger and other weird things that i have done in the past weeks that weren't typical- one example was I wrote a thank you to my Doctor during a one day period when I felt a little better (coincidence which on the prednisone) and I forgot to sign my name and then I asked for another way of contacting him, since his secretaries never pick up the phone- and I thought nothing of it, and didn't care how I looked and just did it.... it was just out of character. Now this along with my extreme anger with things could also be stress and pms related too, but it seemed like it also fit...
I have had stuttering and problems thinking, forgetting things that just happened that I am refering to, forgetting simple words like "distance" to describe point a to point b, have a hard time getting words out... These too could be normal monthly forgetting that I am more conscious of, but definately the brain fog and feeling of just being disoriented is something noticable. It's almost like my mouth wont move fast enough- whether tha't because of a brain problem or just a joint and muscle movement problem , I don't know. Maybe that is it and the memory stuff is normal monthly forgetting... I don't know.
So, now since my Doc pretty much gave up on my and has no idea what I have, I have done lots of research and really think I have Lyme...
I would love to hear some opinions, whether any of you have had this experience, or similiar symptoms... even though I know you all are not medical doctors... and would love to get a good doctor that will listen to me and know I am not making this all up... I really need to get better... Thank you all for listening!
Posts: 319 | From nj | Registered: Jul 2008
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
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Check your private messages (click on the flashing envelope)
I've had LOTS of the same symptoms that you're experiencing! It's not 'normal forgetting'...it's Lyme Disease. At least that's what it was for me.
[ 31. July 2008, 09:34 PM: Message edited by: mbroderick ]
Posts: 2097 | From PA | Registered: Jan 2004
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cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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The text of Lauri's post has been broken down for easier reading at her thread in the medical forum:
posted
also looking for dr in Sussex county NJ willing to travel somewhat for right dr.any suggestions on testing I can get done from my regular dr? HAd tick bit 13 years a go was treated at the time but for the last 3 years bad anxiety depression body pains arthritis, mitral vlve regurg diagnosis, asthma and a cycling type situation that i was convinced was pms/pmdd. Any help appreciated
Posts: 2 | From sussex cty, NJ | Registered: Aug 2008
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