I am in treatment for a little more than a month. We started on Doxy 200 mg daily, increased to Doxy 400 mg daily. Added Levaquin 500 mg 5 days/week (which insurance is now denying). When I have my remission period (when I simply feel bad, not like im dying) I am to take Flagyl 500mg 2 x daily until I have my "dying" period, at which point I am to resume Doxy 400 mg daily. Does this make sense? I feel that my LLMD may be undertreating me. The LLMD does not have much experience, so I am concerned. What do people who have had success with antibiotics think?
I am also taking many supplements etc...
In his guidelines, Dr. B writes about IV ABX - is this the ultimate? Are orals not the best route to go?
If you've had success with ABX, did you build them up gradually, did you rotate them and pulse them? MY LLMD says its good to pulse to confuse the lyme, is this really true?
Would appreciate all feedback....:-)
Posted by Lymetoo (Member # 743) on :
Some doctors do pulse, others do not.
You may find it hard to know when the "remission" period is. I know I just felt horrible for 18-24 months.
Not everyone has to have IV. Some can get well without it. I did, but it took a long time. But then again, I had had it a LONG time. Took 4 yrs to get well.
But I am THERE!
I'll let others chime in, as I am signing off for the evening. Hope you get the help you need!
Posted by GretaM (Member # 40917) on :
Hi,
Doxy gets rid of 90% of spirochetes in the blood. But it doubles the amount of cyst forms.
Flagyl, or Tinidazole (Tindimax), kills all forms of the lyme. But Flagyl and Tindimax, to a lesser degree, are hard on the body, liver and kidneys, so that is why they are pulsed.
Doxy is also good for some coinfections.
I started with 400mg daily Doxy, for one month. I think the idea was to reduce the spirochete load, get rid of RMSF.
After a month I started Tindimax, pulsing one week on, one week off.
I had a doxy burn with the sun, so my doc switched me to Mino.
I then was given Biaxin. I took Biaxin, Mino and Tindi.
Then I had diareaha,stopped mino and biaxin and continued with Tindimax, full time, double dose.
After the c diff tests came back negative, I returned to mino, tinidazole pulsing and cryptolepsis.
I feel better not taking the biaxin. I don't feel like it did much for me except give me diareha.
I think your doc is making sure you don't herx so badly.
I am relieved not to be doing IV. Mino really helps me.
Posted by GretaM (Member # 40917) on :
Your doctor sounds pretty good so far, IMO.
Probably seeing how you react to neurotoxins from die off, treating the dominant coinfection, and making sure you don't overwhelm your detox pathways by doing too much too soon.
I felt the same way, (wanted to blast the infections with abx, and wondering why my doc was conservatively treating), until starting cryptolepsis. I already feel improvement by treating babesia.
Now I am so grateful my doc is making sure I don't get worse before getting better. Now I feel it's more about finding the right treatment for the right infection, rather than blasting the infections (and my body).
Hang in there, be patient, with your doc and yourself.
Many best wishes Posted by kgg (Member # 5867) on :
Since you are just starting treatment, I would think this is a good approach. Warning, there are those who will disagree. But, this is a good way to find out how you react to treatment. Some people tolerate higher doses and some require baby doses, we are all different.
If after a while you don't feel like you are getting better this way, talk with your health care provider. But I personally like pulsing.
Posted by sutherngrl (Member # 16270) on :
I got over Lyme by taking low dose Doxycycline for several years; I took it everyday. This was after trying other antibiotics prior to. I have been off all meds for 10 months. I now think I have an underlying infection that needs attention; possibly something other than tick borne; but the Lyme is gone due to Doxy.
SG
Posted by karawhite (Member # 41374) on :
sutherngrl - I am quite a novice to this, but doesn't the doxy just hide the bacteria in cyst form? can it truly eradicate lyme?
Posted by faithful777 (Member # 22872) on :
Many can do fine with orals. I did not do well with pulsing but many do okay.
I never took doxy at all during my treatment.
Remission by my LLMD's definition, is two months of little or no symptoms. I am there with no symptoms and my husband is just about there. He has gone 6 weeks with no symptoms and is about to get off abx.
I have been off abx for 4 weeks and am doing fine. I don't feel sick at all. Working on getting my stamina back to where I was before I got sick. I am seeing improvements in that every week.
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