Hello everyone, I have just begun having symptoms a few weeks ago and want to make sure I know all the info there is to know, since I have been reading so much about treatment. Here is part of the post I put in the seeking doctor forum, but wanted to duplicate post to get some opinions/advice. I know you are not mds and know this is all just opinion and I apologize if I didn't follow all the rules for posting. I will read them after this to make sure I don't hurt anyone's eyes.
My story:
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! --------------------------------------------------------------------------------
Posted by sixgoofykids (Member # 11141) on :
As you know, since you posted on seeking doctors, you need an LLMD ASAP!
Yes, I've had many weird symptoms. Funny you bring up Doritos ... I've always hated them ... but I ate cheese curls incessantly!!!!! I switched to the "Natural" ones so I wasn't getting as many chemicals, LOL. I've since stopped .... I never thought of it as a Lyme symptom!
I've had the anger, sounds sensitivity, light sensitivity, GI issues, confusion, etc. You found a place where you will feel "normal." LOL
You might stop by Lyme Chat tonight ... we start at 8PM. The link is posted under medical question.
Posted by webmeg (Member # 13647) on :
Wow - you have a lot going on. It so sounds like Lyme and possibly co-infections.
The droopy face is maybe Bells Palsey which can be caused by lyme. It's classics. As are all your symptoms.
The lip sensations, tremors, etc etc can all be caused by lyme.
Amoxicillin is not a bad start - it works for women but not for men with Lyme. Worked well for me this spring.
It's going to take more than a few weeks of antibiotics to get you fixed up, however. And your regular doctor will probably not be supportive unless he's very lyme literate.
Use this forum to search for a LLMD (lyme doc) in your area. People will recommend some for you. It's really the way to go because the cure is often not "standard meds or doses" and you need a doctor that really understands this bacteria and how to get rid of it.
Sounds like you are fairly early in your illness so recovery will not be so bad - it's those of us that had subtle symptoms for years undiagnosed that are the tough cases. Don't get discouraged with what you read here, some people are sadly very sick, mostly because their doctors didn't know what they had. But you know better. So be your own advocate and seek the right treatment fast. Ignore anyone who tells you Lyme is treated easily with a couple weeks of abx.
For good testing, you'll have to be off antibiotics a couple weeks, but you'll want to get tested for Lyme by your regular or new LLMD by IGeneX labs - it's the only one to use for a Western Blot if you want an accurate result.
Oh, and keep in mind that when you start a med like amoxicillin, you will kill off some lyme and feel WORSE before you feel better. You may get new symptoms or worsening existing symptoms. It's all part of the recovery process.
It's good that you found this forum.
Regards,
webmeg
Posted by sixgoofykids (Member # 11141) on :
Sorry to sidetrack ... why does amoxy not work for men? It was something my LLMD suggested that my 18 year old son take when he got bitten this summer .... he's a landscaper so can't take doxy.
Posted by laurisabelle222 (Member # 16591) on :
Thanks for responding, it helps so much to even have an idea of why this is happening and to have a plan helps too.
To add to my symptoms, one other I didn't mention is the alcohol hangover- I actually called my Doc after I only have 2 gs of wine and felt really really badly the next day- it was so weird so I called my Doc- he thought nothing of it then I began reading about Lyme and it's a real symptom!!
I also have eye nastugmus- I look one way and my eye jerks back and forth, as will my hand and fingers at times- usually when i am shaky in my hands, the eyes are too. I also get vertigo worse when my eyes not just shake, but move to other directions- I can't read well because of this.
So, with the Amox, any idea of how this will go- like when I should expect my symptoms to go away? I know when it's first started there will be worseing of symptoms, but what should I expect?
Is it that I will feel really badly some days when I am stressed during the treatment time (what is the treatment time by the way typically?) and on good days its better, but overall the bad and good symptoms will get overall less intense and less frequent? Is that what I should expect?
What can I do for the horrible head pressure, vertigo, shakyness? I am afraid to take any over the counters but know benadril was recommended here..
Oh, I also noticed my IC is worse too!
Thanks so much for all the listening!!!!
Posted by laurisabelle222 (Member # 16591) on :
Oh and my spelling has gotten really bad- look at my spelling errors!
Oh, and I feel like I stutter and slur my worse all the time!!!
Posted by Keebler (Member # 12673) on :
-
I went back to try to read some more from your post.
you said " . . . due to the prednisone . . ."
It sounds like you discontinued that but if not, it is important to note that can make a lot of your symptoms worse if you have lyme. And it can take a long time for your body to return to normal after its use.
If you are still on that, do not stop cold turkey, and if you are on it, hopefully, we can offer you enough guidance until you can see a LLMD.
I'm sorry that I can't more fully comment of your post right now.
Later.
zzzzz
-
Posted by Keebler (Member # 12673) on :
-
Laurisabelle,
so that you need not worry with it, I went ahead and broke this up for easier reading. More people will be able to reply that way.
=======================================
laurisabelle222
Original post:
Hello everyone, I have just begun having symptoms a few weeks ago and want to make sure I know all the info there is to know, since I have been reading so much about treatment.
Here is part of the post I put in the seeking doctor forum, but wanted to duplicate post to get some opinions/advice.
I know you are not mds and know this is all just opinion and I apologize if I didn't follow all the rules for posting. I will read them after this to make sure I don't hurt anyone's eyes.
My story:
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 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
==========
(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!
-
[ 01. August 2008, 11:13 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
-
I see from the "seeking doctors" forum that you have two PMs waiting for you. Hope you have a good lead.
I will post a series of articles and links. I am far too tired to address your letter, but it is clear as a bell that you need to be evaluated by a LLMD ASAP.
In the meantime, take the best care of yourself as you can. Others may have practical advice, too.
Best of luck.
-----------
Please look through the NEWBIE thread by treepatrol and another one by BettyG. You'll find much there.
-----------
Posted by Keebler (Member # 12673) on :
-
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here due to space limits. Still, any LLMD you would see would know how to assess/treat if co-infections are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
See The ILADS Guidelines for the management of Lyme disease - - 2/3 down the page for you to download
- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)
You can read more about it here and see customer reviews.
----------------------
You would also want to see the books by Schaller detailing Babesia and Bartonella. You can just cross search terms with name at Amazon.
--
Posted by BOEJR (Member # 1734) on :
Hi Lauri,
Run don't wait to find a LLMD you need to be dx and tx ASAP.
You may have co infections (tremors) such as bartonella. You will need to find a doc that knows how to treat lyme.
Also, lyme is a clinical diagnosis some labs are better than others at diagnosing but none the less a LLMD can dx you based on your symptoms as well.
Kind Regards,
Julia
Posted by Laurie (Member # 159) on :
I am surprised that so many symptoms came on so fast after the June 23rd bite, so I wonder if it was that bite or an earlier one -- because with me, it took about 10 years for a lot of these symptoms, so identical to yours (and to so many others with LD), to develop. Anyway, you're just screamin' neurological LD in my layperson's opinion (a sadly educated layperson, but nonetheless). I'm very glad you found LymeNet and have posted to this board. I also have to admit that I zeroed in on your post because of your user name. My name's Laurie Isabella. For what it's worth!!