Hieveryone: Well went to the Dr this weekend, and I am discouraged don't know what to think. I think he is an excellant doctor and really trust his opinion. I have been on abx for 5 months now and he was worried that I am not better. I have improved in some ways, like no more numbness and tingling , my hearing has returned , but I have far more pain for some reason. I had gotten MRI results that showed 2 lesions in my brain, I told him, and he told me that while it is highly suggestive of Lyme it may also be MS, so he is still going to treat me for Lyme so he put me on Ketek and said if there is no improvement in 6 weeks or so he may begin to think I have MS.
I don't know what to think now, I hope so much for this Ketek to work , but so far Biaxin and flagyl have not really taken away all symptoms, I have mentioned I did not get up to full dose on them as they made me quite sick, so if you don't get up to full dose how can you get better? I don't know, this is so trying, and discouraging, I have listened to so many people here who take quite some time to get better sometimes having to try many different antibiotics.
I guess he feels 5-6 months should see more improvement, he should know he is an expert in this, I am wondering if people would like to let me know how long it is taking for you to see improvement, and how long do you feel you have had Lyme? I would think that the longer you've had it the longer the treatment. Compared to others here mine is relatively short , I have read so many cases where people have had it for many years. I guess I am searching for a comparison form anyone out there who has had a similar experience.
Thanks
------------------ Thank you MrsSAM
Posted by treepatrol (Member # 4117) on :
I went longer than 6months at one time before I even started to see any improvement in joint pain I think it was around the 8 month mark. And that was just in one of the njoints get some antiinflamitories added to help the process .
Posted by Troup Brazelton (Member # 6297) on :
Who would argue with your doctor, but if you have been showing signs of getting better while on abx, why think of quitting? MS is not a positive dx anyway, just a guess or the doc would have already made that dx. If you read these boards enough, you will find people who have been of abx for years before all symptoms go away. Sometimes changing the abx or adding mepron helps, if that hasn't been done. Miniocycline(sp) has been effective in controlling brain leisions.
Don't give up, it sounds like you are on the right track.
Posted by mlkeen (Member # 1260) on :
It took months for me to see improvement too.
A month of mepron made a huge differance. I tested negitive for babs, but our llmd like to treat everyone. Apparently mepron is broad spectrum and will kill all sorts of creatures.
Discovering nutritional problems and correcting them has helped too.
Posted by Lymeblue (Member # 6897) on :
quiet sick on low dose for me means that you might have a large load of spirochetes. Ketek is very good..try to handle the full dose. What about co-infections...this is the first cause of no improvement after initial lyme treatment......I just don't understand the pressure and the rush from this Dr. to diagnose you with MS...... I took, biaxin and flagyl and still with symptoms instead of thinking MS my Dr. tested for:babesia, which I was treated with Mepron but was sick still...instead of MS again, now his treating bartonella even though my test have been negative....MS is the last thing to diagnose ..if "MS" exists as itself....
Posted by Biting Back (Member # 6018) on :
Try not to get too discouraged. The fact that you've seen any improvement in your symptoms is promising.
I've had LD for 22 yrs. and was diagnosed last year. I've taken antibiotics that didn't seem to help me very much, while others helped enormously.
While we all have lyme disease and take antibiotics, our symptoms vary as do our reactions/non-reactions to various antibiotics.
Try to hang in there. It's really tough to be patient while we wait to get better . . . but time is all we have.
Posted by Monica (Member # 224) on :
You have seen improvement -- I don't understand the rush to see what? a cure? in six weeks or six months. It could take six years. I have been on and off abx since 1997.
I agree you need to address possible co-infections or explore other antibiotics.
Don't panic and don't give up. Giving up is NOT an option.
Posted by MrsSAM (Member # 7079) on :
HI everyone: Thanks so much for all you words of wisdom, it helps. I am going to try the Ketek and hope for some more improvement soon. I guess he decided to say MS becasue of the white lesions on the brain.
Thanks again MrsSAM
------------------ Thank you MrsSAM
Posted by janet thomas (Member # 7122) on :
After 6 months seeing a well known LLMD (ILADS board member in NJ) I went to another well known LLMD (ILADS board member in NY) for a second opinion.
So glad I did. He upped my ketek fromm 400 to 800. I am slowly adding in Nystatin. Maybe Bicillin to be added. I received 3 cleansing supplements. And lots of new blood tests. And a urine toxic metal test. And saliva cortisol level test.
I had 2 bad days and today feel decent. Maybe a yeast die off?
I like to have a broad base of knowedge.
Any other doctors you could consult?
How does your system of medicine function in Canada-can you select your doctor?