posted
How do you know if you're getting sicker with lyme disease or if you're a herxing?
thanks for your time. jamie
Posts: 5 | From SF | Registered: Sep 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Well, I'm not as knowledgable as others but I'll tell my personal experiences.
I was warned my my LLMD that because I was diagnosed MS for 15 years prior to finding out lyme induced I may get worse for a time. Maybe even paralyzed for a time came with the warning. I had to be fully aware of the risks to be a better patient.
When I start a new protocal of abxs, I herx. Get worse for a short time, maybe a week or so. I was told as long as it's not a adverse reaction to the meds to stick with it, otherwise I could be "stuck" with that. (Forgot what doctor called that phenomenon)
So far I've only gone paralyzed twice during the treatments and both times were results of high fever due to viral infections. Thank goodness only lasted for a few hours (during fevers). As the fever dropped control came and I could move.
There were times when I thought I was getting worse with neurological spasms, twitches,optic neuritis, pain,headaches, nauseaus,etc.
Usually after a month of the new protocal, I always managed to improve and overall improve on each protocal.
Now two years in treatment, the herxes are much less severe, only last a day or two of feeling crappy but able to function.
When I look back I've the best I've been in 20years. I was off the abxs again recently for a month (just started back last week) and slipped back to closely prior treatment troubles. Didn't know how I could even have lived like that before.
One has to look back not by weeks but by months. I am fortunate that my LLMD treats aggressively but also will start slow to judge body's reaction. At first I felt I lived at his office, had to go there every month, phone calls to check in too. Now I'm so much more sure of my body's reaction, I can tell if something is wrong.
Big thing is to "follow the rules" of the treatment. Probiotics, nutrition, supplements, med schedule, blood work, anything to help gauge responses.
You know your body but the doctor knows through experiences what "normal herx type" reactions are or are not. Got to work together.
Local support groups and this board are very helpful. I learn from all who post. When I was a little anxious about my health or reactions I looked here to read other's experiences.
Hope this helps.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I'm not sure?? Good question someone here can help I know it!!
Heres a lift for you
^^^^UP^^^^
Joyce
Posts: 34 | From MASS | Registered: Sep 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening Jamie,
Welcome to LymeNet!
I am not sure how much you have learned about Lyme but there is a link for New Members with MUCH information for you. If you will scroll down to Page 3, there is a section with links about herxing which covers basic questions.
As explained above, herxing is different for each of us...and actually, a lucky few never really herx! It is most commonly described as an increase in new or existing symptoms as the bacteria dies.
Most find that they will herx on a cycle of about 28 days. This has to do with the reproductive time period of the bacteria. If you are female, you may also find that herxing coincides with your period eventually.
What you are looking for, is a cycle of good and bad days.
Now, if you have continual bad days- this may be another matter best discussed with your LLMD. Extended herxes are just too hard on the body, and meds may need to be adjusted. If you feel as if it is the disease itself progressing, then also...meds may need to be adjusted or changed.
Hope this helps a bit. Please let us know if you have more questions, OK?
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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