I have been reading through this website for about one month. Thank you to everyone who has helped me to become closer in a diagnosis. I have an appt with a LLMD in May and hopefully he can answer my question, do I have Lyme or not... I have to be honest reading through these posts have made be very anxious it seems like noone is getting better, feeling worse on treatment. Can I hear some stories of people who have had success with treatment. I would also like to know how your symptoms started, for how long and how long did you have to go on treatment and what side effects did you have. I know it is alot to ask but I need to be fully educated when I go see my LLMD to ask the right questions. I don't think I have had Lyme for too long but symptoms started in the Summer of 05. So does that mean my treatment won't be as awful as some I have read. I do have neurological symptoms though, pain, burning, tingling, numbness in different parts of my body. Thanks for everything.
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I've had Lyme for at least 47 yrs. After 4 yrs of treatment, I'm doing very well.....can't complain too much! I run around town like a crazy person! [well, ok...maybe I was already crazy! ]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
As others said, many people who get better don't come and post as often. Or, if they post, they offer advice and you may not realize they are better.
Although I'm not 100% better, the difference from when I started treatment is incredible.
Timing and treatment is different for everybody. I had lyme for 17 years before I was diagnosed. I had a comparatively mild case for having it for so long. But it was still there.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
bettyg
Unregistered
posted
Breaking this up for us neuro lymies to read/comprehend. Please hit enter often and double space between paragraphs ok..thanks!
Also, please be SPECIFIC in your subject line so people know what you are talking about. Those that have those things wrong, will jump in & respond. Others will scroll by to what pertains to issues they want to learn/reply too.
You can still edit/pencil icon your subject line to read "need info on length of treatment & time you've had, side effects, & symptoms".
quote:Originally posted by kxpetre:
Hi, I have been reading through this website for about one month. Thank you to everyone who has helped me to become closer in a diagnosis.
I have an appt with a LLMD in May and hopefully he can answer my question, do I have Lyme or not...
I have to be honest reading through these posts have made be very anxious it seems like no one is getting better, feeling worse on treatment.
Can I hear some stories of people who have had success with treatment.
I would also like to know:
. how your symptoms started, . for how long, . and how long did you have to go on treatment . and what side effects did you have.
I know it is alot to ask but I need to be fully educated when I go see my LLMD to ask the right questions.
I don't think I have had Lyme for too long but symptoms started in the Summer of 05. So does that mean my treatment won't be as awful as some I have read.
I do have neurological symptoms though, pain, burning, tingling, numbness in different parts of my body. Thanks for everything.
Petrie, someone else has a post very similar to what you have posted above that you want info on. Please read the topic titles only on the next 4-6 FULL SCREENS. You'll be able to get many people's replies from reading it ok.
IP: Logged |
posted
read Polly Murray's conclusion in A Widening Circle -- shows how her family healed...
i have heard others feel better too...
everyone think positive for each other -- and push the politics! go for the $$$ for research too...and keep talking --
we are Polly's Widening Circle as well....
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
| IP: Logged |
WildCondor
Unregistered
posted
Most of the people who got well are off the computer living their life, so you wont see the posts. I'm much better than I was when i first came here. My story's on my site. Were you bitten in Summer 05? have you gotten no treatment yet? Waiting another 2 months is a long time if you have already gone so long without treatment. let us know more. i know you have to wait to see a LLMD, but usually you can get started on something and have the tests ready when you get there. Type up your health history, your symptoms, any meds you are on or have tried, FAX your new doctor and see if they will order tests(co-infections) for you before you go to the office, saves time, and everytyhing will be ready at your first appointment. Hope that helps!
IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm still relatively new to Lyme treatment, but I also wanted to weigh-in on this topic.
I was undiagnosed for at least 10 years, probably quite a bit longer. I started antibiotic treatment in June.
When I finally began antibiotics and supplements, I would have rated my capacity at about an 18% out of 100. Little by little, I've gotten slowly better.
Like Cave, I've also got Bartonella and started treating that a month ago. The new treatment has resulted in some of the old "going backwards before you go forward" movement that I had been told to expect.
Even so, I now feel I'm at about 65%.
While that's a long way from well, it's light-years away from where I started.
One of the things I really suggest is keeping track of your symptoms between now and your LLMD appt. There's a good chart at the Lyme Disease Assn of SE PA website:
posted
In response to WildCondor I do not remember ever being bit by a tick and never got a rash. My symptoms started in August 05. All tests, two titers negative and one WesternBlot by LabCorp (not all bands done) was only positive for IgG 41. Regular doctor does not think Lyme. I am going to talk to her again about treatment but I doubt she will start me on anything with negative blood tests.
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
| IP: Logged |
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi Kx,
Sick 8 years w/ 1yr 3mo on treatment. Feeling waaaayyy better!!!!
I am not on the computer as much becuase I'm trying to work and make money.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
If you go back,even a year, you will find alot of the people have gotten better and moved on.
A good way to search here is to go back and find and read the sucess stories.
posted
Hi, Like any other illness we are all diff. Depending on your co-infections,Age, length time mis-dx-ed. Some can go into remission, lets take MS, probable link, can goe into remission. After seeing, working with 100`s of FM patients rarely a remission. CFIDS, appears can go into remission. Heart, some live fine lives, others bedridden others die. All these think can be linked to the mycoplasma that I believe is root of all, like a tree branches off in Diff. directions. So does cancer. Many types, time found much to do. It can go or move anywhere...RIGHT.
No diff. with us. I have seen the older & more co-infections, appear to get worse on or of treatment. I may be it can`t seem to get through high testosterone levels. Even more effective than any antibiotic, that chetes eventually have breakfast,lunch & dinner off of, actually wait for it. Why so many antibiotic changes. So many variables, NO diff. than any other disease. What may work for 1 does not the other.
Also how ill you are???? Kerry Take care Hope you are 1 of the lucky Ones...
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
| 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!
![[Big Grin]](biggrin.gif)
[well, ok...maybe I was already crazy! ![[Razz]](tongue.gif)
]![[Smile]](smile.gif)
![[Wink]](wink.gif)
Like any other illness we are all diff. Depending on your co-infections,Age, length time mis-dx-ed.![[group hug]](graemlins/grouphug.gif)
Kerry Take care Hope you are 1 of the lucky Ones...
Printer-friendly view of this topic