Very sorry overlyme You have had a long journey.
We will ever be recognized in the medical field and be able to stop sufferering in silence? We are the BEST patients, we will try anything to get well. We show up on time, follow doctor's orders, pay out of pocket, travel long distances, take notes, become educated about our prognosis(s) and know we are in this for the long haul.
And we continue to have hope.ðŸ’š
My neuro symptoms diminished by 75% after 4 months of aggressive multiple antibiotic protocol. But after numerous relapses (after stopping antibiotics), the standard go-to meds don't work as well anymore.
I have been on professional grade herbals for almost a year. Noticable improvement at first but overtime they too don't work as well. I have been rotating new herbs and am staying stable except for Neuro brain issues, which are getting worse.
I really think we need spect/pet and thermography scans of our brains. Football players get these routinely. They aren't covered by insurances except for certain conditions. What these tests will show is that there might be frontal lobe inflammation/damage. New tools, fresh set of eyes, new strategies.
I have had those symptoms before. I really feel for you. Sometimes, I even felt like I was turning into a spiral, so that when I walked I was concerned that my foot would come down in a funny way and trip me.
Rifampin, with it's companion med, was prescribed a couple of weeks ago. I've stopped taking it, because I felt worse right away. I tried going down to every other day, but it's taking longer than that to feel better.
The symptoms for me are worse fatigue, loss of appetite, achiness, periodic pain in the gut, and I've been feeling glum which isn't like me. I'll be asking for a liver function test this week.
Also, I have a feeling of something not being right. We are the world's expert on our own health situation, and sometimes there are no words to express what bothers us.
If you make just one change at a time, and take note of any pertinent information, it will help. This is a complicated illness, and we take so many different products, it's sometimes hard to keep track of it all. It's a challenge to know if you are having a herx reaction or not.
I actually logged on today to search "rifampin" to learn more about it's effect on Lyme disease patients. I'd like to see if it's benefited others.
Posts: 486 | From New Mexico, USA | Registered: May 2007
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Does anyone with feel so ill all the time. I have strong neuro symptoms and jt/tendon pain also. But I don't know why I feel so ill constantly.
Posts: 475 | From southern new jersey | Registered: May 2003
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