posted
I don't know anyone who has had Lyme, and I'm not really sure what to expect here... I was diagnosed about three weeks ago. I was fine until one morning I couldn't muster the energy to walk or speak. I had been having night sweats a lot prior to, but had no idea why, then this one morning, I couln't walk, I was having horrible hot flashes, my vision was delayed and my peripheral vision was strange. I also had what I've heard been called "brain fog."
I went to the emergency room, was prescribed doxy, and within 72 hours the fog was relatively lifted and I could muster up enough energy to walk to the kitchen.
Weeks later, I have thought I was significantly better several times, and then bam, right back where I started.
I'm not sure I trust my doctor whocontinued my doxy prescrip, and in one week I will have no health insurance due to the fact that I'm between jobs.
I'm sort of at a loss for what I should do or what I should expect. Is this normal, the ups and sowns? My doctor said that it was a bit suspicious and tested me for Hotchkins. But from what I'm reading tonight, it's what happens.
Another question is if I remember getting a tick bite about three months ago, and I treated the Lyme within the first two months, than is it normal to have neurological symptoms like vision probs and brain fog?
-------------------- marti Posts: 4 | From New Canaan, CT | Registered: Aug 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome!
Ups and downs are normal. It's part of it ... some days are good, some bad.
I would suggest getting to a Lyme Literate MD (LLMD) as soon as you can.
How much doxy are you taking? It should be 300-400 mg per day for Lyme treatment.
Keep reading! You will learn a lot here. Also check out www.ilads.org.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
***Another question is if I remember getting a tick bite about three months ago, and I treated the Lyme within the first two months, than is it normal to have neurological symptoms like vision probs and brain fog?***
Yes, if you were not treated with a high enough dosage of doxy and/or for a long enough period of time.
Please begin your search for a LLMD....a lyme literate MD.
I'd be willing to bet that half of your neighbors either have had Lyme or know someone who has. CT is swarming with it.
I'm so sorry you're losing your insurance. That's not good....but most LLMD's don't take insurance anyway.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
bettyg
Unregistered
posted
welcome marti to the board! you'll find educational info galore here as well as moral support when you need it.
i see you are a teacher; we've got many on here who had to leave their jobs.
i'm sending you a private message, pm, with my 62 pages of newbie link, advise, symptoms, tests, disability, much more including PREPARING FOR YOUR 1ST LLMD/LYME LITERATE MD VISIT, and TREEPATROL'S archive of over 1000 links of good lyme info.
also look for the links on needy meds, etc. to see if you fall into programs like that are in all in one area for you.
conn. has MANY LLMDS; so hopefully you won't have far to travel like us midwesterners do; we have no full-time chronic LLMDs in our state and perhaps 1-3 at most.
you can find my pm on left side below HELLO by flashing light or in my profile. glad you found us; we'll help you.
knowledge is power, so read, read, and read after posting for a LLMD IN YOUR STATE IN SEEKING DR. show the largest city nearest you in topic title plus state. then add 3-4 more in body text that start with those CLOSEST TO YOU.
IP: Logged |
posted
Thank you both so much for the tips, and the ear... I'm definitely worried that I'm not getting the right treatment. The three doctores I've talked to have had three different agendas.
This sucks. I just started a new job...my dream job and not able to give it my all. To make matters worde, I'm getting married in one month and I don't know if it's going to be "a good day" or "one of those bad days."
Is GERD a common symptom? I have been having problems with it for almost a year.
-------------------- marti Posts: 4 | From New Canaan, CT | Registered: Aug 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hi ya marti,
yep, what i called "gerd" i now realize was lyme.
i had it so bad my throat would literally close up and i couldn't breathe!! also felt like i couldn't swallow, big lump in throat.
hated it!!!
stay on those antibiotics. don't let anybody tell you a couple of weeks is good enough.
i had about two weeks of doxy immediately after being bitten in 2005. now look at me -- full blown chronic...
hang in there and find a good LLMD.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
quote:Originally posted by randibear: hi ya marti,
yep, what i called "gerd" i now realize was lyme.
i had it so bad my throat would literally close up and i couldn't breathe!! also felt like i couldn't swallow, big lump in throat.
hated it!!!
stay on those antibiotics. don't let anybody tell you a couple of weeks is good enough.
i had about two weeks of doxy immediately after being bitten in 2005. now look at me -- full blown chronic...
hang in there and find a good LLMD.
Great info here. Like marti, i was bitten in May and had first sympoms in lat June. Was treated with 100mg twice a day of doxy for 35 days. I've been off it for 10 days and the symptoms are coming back.
A few quick questions
1. When/how does Lyme become chronic?
2. When should you stop antibiotics in such an early stage? I was bitten 2/12 - 3 moonths ago.
3. Has anyone with the neurological symptoms experienced a wave of symptoms including urinay/bladder?
Thanks in advance
Posts: 13 | From NJ | Registered: Aug 2007
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
TonyB76, First off here double up on your doseage. Get more if need be,,,100 twice a day wont cut it. Go tell your duck you NEED 400-500 a day minimum, now!! There ARE ways of doing just THAT,,
Find a LLMD and get there as soon as humanly possible!! You may well have co-infections that the doxy wont cure either,,,read UP on co-infections!!
Your clock IS "ticking",,,dont let the alarm ring!!!
Now to the MAIN poster,,,Marti,,,
What ever you do,,,STAY on Cobra between jobs. A couple ER visits will wipe out your wedding funds!!
good luck on your wedding,, but how far is a GOOD LLMD from YOU!!?? Get there quickly,
Would the families understand IF you postponed the wedding?? Might cost alot but IF your REALLY REALLY sick,,how is that going to happen!!???
On the other hand,,,read Merrygirls posts about fear of going on vacation,,,what a NICE time she had there actually,,,and how little she was down for it!!
It may inspre you to going thru with the HUGE plans,,,maybe medicate and rest a bit more when possible.
Do your folks support and understand how 'sick' you are for now?? Does your fiancee realize same?? He should also understand that you can and will get well again too!!
It is a 'scary' time for you,,,no doubt,,,hang in there and stop back for MORE support,,thats what we do best!!! Thanks for posting--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME MARTI!*)*)!! *!)*!)!)*!)*)!*!)!
***1. When/how does Lyme become chronic?
TOO soon, darnit!!! TOO soon. We have a local who got tx after only 3 days who went chornic- she is still on abx 10 years later. There is a genetic predisposition to do badly- HLADR4 But most people treated that soon would go into full remission- most people!!!
****2. When should you stop antibiotics in such an early stage? I was bitten 2/12 - 3 moonths ago.
DOn't you DARE stop until you are better or you will never get better!!!!!!!!!!!!!!! Get better!
*********3. Has anyone with the neurological symptoms experienced a wave of symptoms including urinay/bladder?
YES very common, I had incontinence and also cystitis. NORMAL now thank goodness!!!
Welcome to the board-*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
quote:Originally posted by CaliforniaLyme: WELCOME MARTI!*)*)!! *!)*!)!)*!)*)!*!)!
TOO soon, darnit!!! TOO soon. We have a local who got tx after only 3 days who went chornic- she is still on abx 10 years later. There is a genetic predisposition to do badly- HLADR4 But most people treated that soon would go into full remission- most people!!!
DOn't you DARE stop until you are better or you will never get better!!!!!!!!!!!!!!! Get better!
YES very common, I had incontinence and also cystitis. NORMAL now thank goodness!!!
Welcome to the board-*)!!
Thanks, Cali Lyme.
What is the threashold to becoming chronic? I am still confused when you say time is ticking. Also chronic lyme - sounds like many success stories here with some reoccuring symptoms.
Amazing that the id docs wold have you think that 21 dsays would do it.
Thanks for all the info...
Again anyone reading this know any good lyme docs in NJ area please fwd or post.
Why cant names of docs be posted on here?
Posts: 13 | From NJ | Registered: Aug 2007
| IP: Logged |
quote:Originally posted by just don: TonyB76, First off here double up on your doseage. Get more if need be,,,100 twice a day wont cut it. Go tell your duck you NEED 400-500 a day minimum, now!! There ARE ways of doing just THAT,,
Find a LLMD and get there as soon as humanly possible!! You may well have co-infections that the doxy wont cure either,,,read UP on co-infections!!
Your clock IS "ticking",,,dont let the alarm ring!!!
Now to the MAIN poster,,,Marti,,,
Thanks, Don.
I am very confused and a bit alarmed by the 'clock is ticking comments and what that really means?
I was tested for the co-infections babesia and the other one E (something) both neg.
If I started the doxy back up do you think it would work or the Lyme be resistant?
Posts: 13 | From NJ | Registered: Aug 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It means the longer you have it untreated, the more a chance of it becoming chronic.
I would definately go back on the higher dosage of doxy to hold you until you get to an LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
Printer-friendly view of this topic