I read a post today that said if you get worse while being treated, the disease is progressing despite the abx. This person said you should not get worse before you get better if you are taking the right amounts of abx. My doc said that was to be expected
I'm worried because there is only one ILADS doctor in Utah and I can't go searching all over for another. The economy has made sure of that. The poster said if you are getting worse you need to find another doctor. My doc says she is ILADS trained and has treated many Lyme patients into remission.
Here's my treatment, please comment if you think I'm taking the wrong things. I would like to know.
This is all so confusing. I wish something was for sure.
Posted by sixgoofykids (Member # 11141) on :
I took 7500 mg amoxy daily .... 2500 mg three times per day. I also took it with probenecid to keep it in my system longer. You might get a peak level amoxy blood test to see if you're taking enough.
Also, Plaquenil helps the zith to work better on the Lyme.
I think it's unusual to take doxy and amoxy together. They both work on the same form of the spirochete. Maybe your LLMD is going after coinfections with the doxy, but that would seem to make the amoxy unnecessary.
I'd suggest reading the Dr. B guidelines over and over, especially the part about the abx, to be sure you're doing all the right things. I've read them several times myself.
Posted by TerryK (Member # 8552) on :
The majority of lyme patients do get worse. The worsening of symptoms is due to die off of borrelia and possibly babesia and release of heavy metals. These toxins are toxic to the system and cause all kinds of symptoms.
Some people can remove the toxins reasonably well while others have genetics that make it harder for them.
The degree of illness one experiences from treatment depends on bacterial load, genetics, life style ect..
I have both methylation cycle issues and the HLA pattern that is thought to indicate that I don't make sufficient antibodies to remove the toxins effciently.
I also take drainage remedies. I learned about all of this through my ILADS LLMD. These are special homeopathic and/or herbal remedies that help your body drain toxins.
I also work on binding heavy metals and I did genetic testing for methylation cycle issues and take the appropriate supplements for my issues.
There is a lot of information in the archives here about these issues.
It simply is untrue that one should not get worse. I wish it were true but that is not the experience of most people.
I am not a doctor, don't know your history and really can't make an informed comment on your meds but it is not unusual to be on a number of medications at one time.
Terry I'm not a doctor
Posted by bwillis (Member # 18811) on :
I have them nearly memorized.
I've asked and asked about the amoxi and doxy, my LLD says this will hit everything including a suspected co infection. She says she thinks its the best combo for what she thinks I have. I can't get my only prescriptions so I have to do what she says kinda.
My main question is still should you feel better on treatment like this one poster said or worse, if the treatment is working. I don't want to waste time being sicker if its the wrong thing.
Posted by bettyg (Member # 6147) on :
hi willis, we understand; neither did we.
all i can say is on my OWN experiences here ...
1st llmd had me on pulsed abx, doxy & biaxin for 20 months adding in benecar too & at end FLAGYL which herxed me big time.
i called his office leaving detailed message about herx symptoms; he didn't call back; i emailed him, and he didn't email back. i herxed entire time and my right arm felt like a punching bag; 24/7 PAIN big time.
went looking for 2nd llmd & ended up out of state. this dr. was into supplements...22 to be exact. they gave me huge fatigue; sleeping pills i couldn't take so she wasted $100 on bottles not even opened that she wouldn't take back. got much worse.
after 22 supplements; back on regular meds; FATIGUE HUGE.
cpap has now been HELPING me since jan. 09; i see improvements FINALLY.
so bottom line; i went downhill on both treatment plans; i do feel like spirochete were being killed in my body of 35 yrs. then w/lyme.
Posted by sixgoofykids (Member # 11141) on :
You should feel worse on a new med, and have flare ups, but overall you should start to get better. You might feel worse in the beginning, but as time goes on, you should see improvement.
I'd still ask about peak level testing for amoxy. I felt BAD the WHOLE five months I was on amoxy.