When I first started reading these boards in the fall of 2002, my biggest question was "can I ever get rid of this?" Nobody would give me a straight answer.
I heard lots of vague responses like "people who get well don't post anymore." I didn't believe it because despite months of searching I couldn't find even one person who was "cured."
I stopped all medication at the end of May 2003 and believe that I have gotten rid of Lyme.
I do still wonder if its coming back every time I feel tired or worn down or if I have an ache or pain, but realistically these are not Lyme symptoms and fall into the category of "I am just being paranoid," which admittedly many people with Lyme are told anyway, but in my case I believe it to be the truth at this stage.
I will probably wonder if it is coming back for the rest of my life. That's ok with me. Lyme has given me a more acute awareness of my own health that has had many positive effects.
For those interested, my website is still up and running and now has over 10,000 hits!
http://www.matthewgoss.org/lyme.html
Matt
Thanks for posting Matthew. I will go to your site and read.
I sure hope you stay healthy the rest of your life.
Just curious. Now that you have your health back I am wondering if you are living life any differently than before you got lyme disease?
[This message has been edited by kam (edited 11 August 2004).]
congrats!!!!! i was just wondering if you could be so kind as to list your symptoms. i went on your website, but i wanted to know what yours were, did you have visual, or dizziness, or pressure in your head?
i hate those symptoms, just want to know if some day they might be gone.
thanks debi
I also had difficulty with short term memory and basic math skills.
And sometimes I would have trouble getting my eyes to focus, like when you haven't had sleep for two days and are forcing yourself to stay awake, only I was sleeping 12 to 14 hours a day at the time.
All of this is gone and I am living my life normally as I did before getting Lyme...I've even gone back to some of the bad habits I had before Lyme that I had quit when I was sick.
Matt
and thanks much for posting this
i hate those symptoms, just want to know if some day they might be gone.
Debi,
I have/had the visual.....it does seem to be improving. I just read a forward in a workbook I am hoping to read. It was only 2 pages, but I was excited about being able to read it. I still am not able to pick up a book and read anytime but I am seeing improvement.
The dizziness I had off and on while going to college in the 90's before I knew I had lyme disease.
It went away for many years and then came back. I just had a day or so where I could not move or talk, etc as the pain and dizziness caused me to throw up. I hadn't had this since I started treatment last year.
I had it more often before treatment in the 2001/2002 years. I think treatment is also helping with this.
RE: the pressure in the head. I noticed the biggest difference when I started rocephin.
I am still trying to figure out this one. My latest theory is that it is the same as mobiity. I need to figure out what my limits are and stick to them so I can have a little mobility each day.
Whereas with the brain...I am wondering if it goes into overload when I go beyond my limits with it.
I just don't know what my limits are at this time. I know this is not all the cause of that pressure in the head, but I am wondering is it some of it.
For ex: I have learned that on good days I can walk 10 min in the am and 10 min in the pm.
But, if I go for 20 min at one time....I will not be able to walk at all for the next few days. Strange but true.
Same with the power chair. If I limit myself to an hour instead of pushing it to 3 hours when I am able....I am hoping to be able to be out and about daily instead of for 3 hours one day and down for several days.
Now, if I can just figure out what my limit is on brain actiivity.
I have always wanted a balance life but this is not quite what i had in mind.
I also wanted a covertible, but a power chair was not what I had in mind for wheels!
The bottom line is that I am seeing improvement with treatment and I do have hope.
Keep enjoying it.Great to hear and nice of you to drop in and give us all a glimmer of hope.
Take care,Sue from Downunder.
I also have gotten rid of my Lyme (actually - "put it into remission/can't really remove chronic Lyme from your body completely) three times. In other words, I have had 3 "one year periods" in the last 5 years where I was off meds.
AND FOR THOSE OF YOU WAITING TO EXPERIENCE "NO LYME" - I describe the mental/psychological state as a feeling like I have "never experieced before". I am so acutely aware when my Lyme is gone because I actually feel just "way too happy" - for no reason at all......... a euphoric feeling..
You have to have this nasty disease to appreciate your true self - when it is gone.
(Mine has unfortuneately come back three times from stress/lack of sleep, etc) This can be avoided by never going without enough sleep on a continual basis, eat properly, keep exercising, take vitamins and nutritional supplements. At least that is what I have found to be true....
GOOD LUCK EVERYONE. ONCE YOU EXPERIENCE THIS - IT IS GREAT!
quote:
Originally posted by Lymelighter:
Matt, glad to hear from you after so long. Which treatment/abx do you feel helped you the most?
Sorry for the late response, but I only check my email about once a month these days.
Do the whole shebang. I can't say what worked and what didn't. I was taking so many things at one time it was hard to tell. All I know is that I covered all my bases, and when the dust settled it was gone.
Matt
I wondered were you diagnosed with co-infections and did you take treatment for them?
many thanks
Emma
http://www.wendyslymefund.co.uk
Take good care of you!
Lymster
quote:
Originally posted by suki444:
Hi Matthew
Thanks for coming back to tell us of your success! I have read your website before and did wonder how you were doing.I wondered were you diagnosed with co-infections and did you take treatment for them?
many thanks
Emma
http://www.wendyslymefund.co.uk
I tested negative for Ehrlichia and Babesia. I knew the doxy I took would have eliminated Ehrlichia. But since I know that there are at least 12 strains of Babesia and you can only test for 2 of them, and that 2/3 of people with Lyme have Babesia too, I decided to treat for it just in case.
I did Dr Zhang's treatment for Babesia mainly because of the Artemesia which is recommended by the World Health Organization for treatment of Malaria (which is similar to Babesia). 100% of those infected with Malaria are cured with Artemesia, which is a higher success rate than synthetic drugs, which are also more expensive.
I also took Trimethoprim-Sulfamethoxazole (Bactrim/Septra) along with it because they say that 89% of those including this with Babesia treatment are cured of it while many others relapse.
Matt
You have a great website which is written in layman's language. It was a source of inspiration and information when i first became sick. I often direct newbies to it. You might want to add Samento to your herb list. I and many others here have found it very useful.
I have been in that terrible mental prision that you refer too, but am now in total remission for over a year. It's important for people here to remember that most do recover, only a very small percentage become chronic. Trust us!
Jack
quote:
Originally posted by matthewgoss:
I tested negative for Ehrlichia and Babesia....... But since I know that there are at least 12 strains of Babesia and you can only test for 2 of them, and that 2/3 of people with Lyme have Babesia too, I decided to treat for it just in case.
Very smart!Too bad more people don't do this. It would save alot of grief!
Congratulations, matthew!!!
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oops!
Lymetutu
I've noticed lately how many familiar names have gone away from LymeNet and so many new ones come onboard.
It is great to hear from you and to hear how well you are doing.
My LLMD is weaning me down from two Spectracef a day to one. I've been feeling pretty great now for six weeks. We will kick it back up if the pain returns.
When I reach that one year mark, I'll say that I'm in remission.
Dr. B. once said that he (himself) has to continue to get enough rest, exercise and eat correctly in order to keep his Lyme in remission.
Best of health to you!
Nancy