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» LymeNet Flash » Questions and Discussion » Medical Questions » newly dx, my story

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Author Topic: newly dx, my story
strive4mores
Junior Member
Member # 9920

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hello all,
glad i found this board. i'm 34 years old from maine and have been recently diagnosed with lyme. i'm a sahm with four boys, 8,6,4,2, (no girls and i'm done, lol). my diagnosis probably started early june when weird things started happening to my body.

i go to a doctor once year (the girly one) and other than that. i never go, no need to. but i remember early june finding a few black dog ticks on me, no big deal, common around here then i remember picking off a scab on my leg, that was actually kind of hard to pick off, a black little poppyseed kind of scab, looked like a mole....next day i notic the area looked like i had a mosquito bite around that area. again no big deal.

i guess the first sign for me, was i was doing kickboxing one day and my right eye started to get blurry (everything for some strange reason is right side for me) i didn't think much of it. then the veritgo started, then the neck creaks and squishyness followed, blurry vision and a hard time focusing each time i woke up in the morning. and eye pain. well time to go to the opathamologist, vision perfect, no need for glasses. okay it's just in my head

well then i started feelin like i was walking funny, not noticeably but walking to one side and kind of in a fog, okay must be ear infection, let's see what happens. my ears felt full and popped easy. but i let it go, too much to do. then had an asthma attack, used for son's nebulizer and felt better

well strangely enough these symptoms continued and then a few times i felt like the right side of my body would go absolutely flaccid for a few minutes and i was starting to get really anxious at night, thinking ohy my god what if i wake up paralyzed and then i started to have some palpitations. it happened again when i felt my fingers freeze. my husband took me to the e.r. and they did tests to rule out a stroke, heart attack, nothing found. i was suffering from a urinary infection, so they gave me cipro. i started to feel really awful, and my leg and arm went weak again, body was tingling, eye pain, face was tingling and burning sensation up my spine to my arms and fingers......and then a few days later i felt really good.

then my back started hurting and i thought i pinched or slipped something, went to pcp she tested me for lyme but said based on symptoms she was putting me on doxy 400mg twice a day for lyme and wanted me to see neuro just in case. went to neuro doesn't think it's ms, which i didn't even think since my symptoms change every second, at least, had eeg, mri of head, neck, spine. then she said go to eng for vertigo test....horrrible i thought okay i failed, i passed, so next step is a lumbar puncture but i continue on doxy until i go to neuro again int wo week. now in addition to the fatigue, which is unbelievable and no energy, my breasts hurt as do my ribs, my arms just kill me and i get hip pain and bilateral knee pain. of course my hands and ankles hurt now too.

so here i am, thinking i'd be a perfect fit to your community.....it's amazing what you can brush aside as "hormones, getting older" etc. i did also have so much bloodwork that i'm spinning, if someone says lack of b12 or thryoid again, i'm coming to scarem.

lori

Posts: 1 | From maine | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
sarahinnewyork
LymeNet Contributor
Member # 7179

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Hi Lori,


Welcome! I wish it were under different circumstances-

I have found this site to be a fantastic support, an informative place to learn about lyme, research treatment options and the political realities of being a lyme patient!

It's the strangest thing isn't it? Some of the symptoms you described were very familiar to me...I knew that there was something seriously wrong when I felt that I was always walking into walls! I also had breast pain early on- can't be sure, but I think that it's the lymphatic system ridding the body of all the dying critters- so rejoice in that!

Everyone seems to find something that works for them through trial and error mostly- I would personally recommend doing some allery tests on various antibiotics- I went on Biaxin at one point and felt awful on it only to find out later that I was somewhat allergic to it

Bicillin LA was fantastic although I hear that it's getting hard to find. I used a pharmacy in East Hampton and had no problem getting it- although it costs a small fortune!

I start the day with plain yogurt mixed with my own muesli ( ground flax, unsweetened coconut, organic rolled oats, barley, wheatgerm, cinnamon etc)and I also take probiotics throughout the day- knock on wood, I've had no obvious yeast issues!

Lori, I could go on for ages about Lyme- but it's all here on lymenet- use the search function and if you find someone you really are impressed by you can even search their posts!

( lots of good brains here all working together to help us get better! )

Let us know how your treatment goes-

best of health, Sarah
( I'm no Doc- just my opinions)

Posts: 119 | From new york, NY, USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Carol B
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Hi Lori- I'm not one of the "Good Brains", I'm one of the "Lyme Brains" as in malfunctions from time to time. Anyway, your story is all too familiar.

I just started treatment myself in April 2006-hopefully in time I will have some real experience , strength and hope to share-for now I am toughing it out day to day and following Doctor's orders- for the most part.

Sounds like you are on the right track-that's a good dose of Doxy to be on-hope you can get to an LLMD. My neurologist seems to know very little about Lyme- I go to see him for anti-convulsants. I was diagnosed with complex partial seizures just prior to being diagnosed with Lyme.

My last appointment with him (yesterday) he said once the LLMD felt my Lyme was under control-if that's possible-we could consider weaning me off the seizure meds-so he must feel there is a connection there.

I'm sort of rambling here- really just wanted to say hi and welcome to Lymenet.

Carol

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Lymetoo
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Member # 743

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Please forego the lumbar puncture if you can. It is only about 20% effective in dxing Lyme.

It can be used to rule out MS or other such things...but you sound LYMIE to me!!!

Hope you're on the way to finding a good LLMD??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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quote:
Originally posted by strive4mores:
hello all, glad i found this board.

i'm 34 years old from maine and have been recently diagnosed with lyme. i'm a sahm with four boys, 8,6,4,2, (no girls and i'm done, lol).

my diagnosis probably started early june when weird things started happening to my body.

i go to a doctor once year (the girly one) and other than that. i never go, no need to. but i remember early june finding a few black dog ticks on me, no big deal, common around here then i remember picking off a scab on my leg, that was actually kind of hard to pick off, a black little poppyseed kind of scab, looked like a mole....next day i notic the area looked like i had a mosquito bite around that area. again no big deal.

i guess the first sign for me, was i was doing kickboxing one day and my right eye started to get blurry (everything for some strange reason is right side for me) i didn't think much of it.

then the veritgo started, then the neck creaks and squishyness followed, blurry vision and a hard time focusing each time i woke up in the morning. and eye pain. well time to go to the opathamologist, vision perfect, no need for glasses. okay it's just in my head

well then i started feelin like i was walking funny, not noticeably but walking to one side and kind of in a fog, okay must be ear infection, let's see what happens.

my ears felt full and popped easy. but i let it go, too much to do. then had an asthma attack, used for son's nebulizer and felt better

well strangely enough these symptoms continued and then a few times i felt like the right side of my body would go absolutely flaccid for a few minutes

and i was starting to get really anxious at night, thinking ohy my god what if i wake up paralyzed and then i started to have some palpitations.

it happened again when i felt my fingers freeze. my husband took me to the e.r. and they did tests to rule out a stroke, heart attack, nothing found.

i was suffering from a urinary infection, so they gave me cipro.

i started to feel really awful, and my leg and arm went weak again, body was tingling, eye pain, face was tingling and burning sensation up my spine to my arms and fingers......and then a few days later i felt really good.

then my back started hurting and i thought i pinched or slipped something, went to pcp she tested me for lyme but said based on symptoms s
he was putting me on doxy 400mg twice a day for lyme and wanted me to see neuro just in case.

went to neuro doesn't think it's ms, which i didn't even think since my symptoms change every second, at least, had eeg, mri of head, neck, spine.

then she said go to eng for vertigo test....horrrible i thought okay i failed, i passed,

so next step is a lumbar puncture but i continue on doxy until i go to neuro again int wo week.

now in addition to the fatigue, which is unbelievable and no energy, my breasts hurt as do my ribs, my arms just kill me and i get hip pain and bilateral knee pain. of course my hands and ankles hurt now too.

so here i am, thinking i'd be a perfect fit to your community.....it's amazing what you can brush aside as "hormones, getting older" etc. i did also have so much bloodwork that i'm spinning, if someone says lack of b12 or thryoid again, i'm coming to scarem.

lori

welcome Lori to the board. If I did not send you my newbie's links/advise, 15 pages; please pm, private message me...2 people standing together and ask for it.

I can see 5 new people's names only and send; some sneak thru the cracks when I come here twice a day.

Print off Dr. Burrascano's 2005 lyme treatment guidelines found in TREEPTROL'S NEWBIE LINKS.
Bettyg [Big Grin]

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DanP
LymeNet Contributor
Member # 7501

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Hi lori,

I'm from Maine originally. Don't know where I picked up my Lyme, there or here in NY. But I'm pretty sure I've had it for over 20 years.

I have a very good LLMD in Maine. Yes, I travel to Maine to see him. And two of my siblings see him too, believe it or not. So there's more argument right there for the Maine connection instead of NY.

If you want a good LLMD in Maine, contact me off list.

DanP

Posts: 277 | From NY | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
mindy
Member
Member # 8837

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Hi Lori

Welcome!

I am from Maine too. I sent you a pm. Please let me know if I can be of any help to you...with doctors, support groups and/or moral support. Feel free to pm me anytime.

I have only been diagnosed since May. So I am still learning to live with this disease and all the ups and downs that happen.

Hope to hear from you soon.

Mindy

Posts: 12 | From Maine | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
tic chick
LymeNet Contributor
Member # 9156

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Welcome Lori,

Sent you a PM.

Same story with me.......but, I am getting older (not much really) and had a throid problem ! [spinning smile]

tic

--------------------
Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton

Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome!

Posts: 309 | From S.E. Mass | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804

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Sorry you are going through so much.

You need a llmd (lyme literate dr).

And I understand how you can brush aside symptoms - My freshman year in college my finger joints were in so much pain I couldn't straighten them.

and I thought well ya know in another year or so I will be 20 - so I must just be getting old. Now I am almost 30 and its somewhat amusing.

Just in case you didn't know - When one has lyme and takes abx one can have a herx reaction.

During a herx current symptoms can intensify and/or old symptoms can reappear and/or new symptoms may manifest.

Also You can get burnt quickly and badly from sun exposure while on doxy.


Welcome [hi]

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

Posts: 3860 | From nj,usa | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512

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I have to agree with Lymetoo - forego the lumbar puncture for the time being. It will always be there as an optional test down the road, if needed.

I just think your moeny and efforts would serve you better by investigating the Lyme/ co-infection aspect via other avenues at this point.

You sure sound like a Lymie to me......

Tracy

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

Posts: 2966 | From Colorado | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
Carol B
Unregistered


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I refused the lumbar puncture-suggested by docs other than my LLMD. My LLmd does not feel there is a need for one-and I agree!
Carol

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