new here with some questions

[madstone]

hello

i have been lurking around for a long time but finally am posting since i have some questions and hoped to get some feedback here.

i have been sick for a number of years and after seeing more than 30 drs, i am in treatment with an LLMD for lyme and coinfections--most recently with zithro & artemisinin for babesia.  i am seronegative for babesia & bartonella and most recent results showed IND bands 39 & 41 on IgM, and IgG was band 31 ++, band 41+, and IND band 39.  previous igenex results showed very high rickettsia titers, but they are gone after treatment with doxycycline.

my main question stems from the reactions i have had to the zithromax and artemisinin.  i started off taking zithro 2x/day, every day for a couple weeks and had some herxing, then added in the artemisinin after 2 weeks.  the artemisinin made my symptoms go completely, over the top crazy.  i was in so much pain, had searing headaches, twitches, muscle weakness, etc.

my LLMD told me to stop the meds for a couple of weeks until i was back to baseline, so i did.  i started to feel a little less scary, so i then started only 1 zithromax/day and 1 artemisinin and things went nuts again.  i felt like i was going to die.

my LLMD then suggested i go off for another week and resume taking 1 zithromax for 7 days, adding 1 artemisinin for the last 3 days, every other week.  i did this for one week and started feeling horrible again, and during my week off, i recovered a bit, but now after 2 weeks, i have not gone back to baseline, and have been too scared to go back on again.

i go see my dr. next week, but wanted to ask if anyone else has had this experience where the herx didn't dial back after stopping the medication again.  

it's really hard and really scary as my symptoms are becoming disabling.

any thoughts or feedback would be most appreciated.

thank you.

[JackieCalifornia]

A suggestion:  quietly find another Lyme doc for a second opinion.

Lyme is still the wild wild west, with much still being figured out and discovered.  Each doc has a favored way to treat using various meds -- there is no one-size-fits-all when it comes to Lyme and its co-infections.

Given your level of concern and the reactions you have had, I would, in your shoes, get a second opinion from another Lyme doc.  Take all copies of your tests to date.  Your relationship with your Lyme doc, whoever it is, will go on for months, not weeks.  My treatment for Lyme and a co-infection was almost a year ... and worth every penny and every minute.

Let us know how we can help.  Take care, and keep us posted!

[madstone]

Thank you for the feedback.  My LLMD said this was "pulsing" the meds and she was worried the herxing would generate too much inflammation in my brain so she was dialing back and moving forward in this fashion to protect me.  She was pretty concerned about how severely I was responding to the medications, though said the herx was diagnostic and showed were were at least on the right path.  After all these years of twisting in the wind, I have to say that is encouraging.

I do understand the potential for creating resistant über bugs with this process, and wonder if I should just push through like you suggested, mojogal.  It has felt so scary though.  I almost had my husband take me to the hospital a couple of weeks ago because I was in so much pain, but knew they wouldn't know what the heck to do with me except try to give me antidepressants or something.

I phoned the LLMD's office yesterday and am now using cholestyramine to absorb some of the toxins caused by the die off, but that medication presents its own spectrum of problems.  I hope it helps.  I will start the zithromax & artemisinin again Thursday.  Please wish me luck.

Like I said, I got next week and will discuss the details and present my symptom journal.  

Thank you all, again.

[mojogal]

I belong to a large Lyme community on facebook and have seen people who just go through the bad herxes without dialing back. It eventually stops. There are others who cut back on the medication with better results. The starting and stopping isn't getting you any where you may just need different meds. Ditto what everyone said above.

[JackieCalifornia]

Ditto bob's comments about why your doc would do the on-again-off-again approach -- you might ask the doc about modifying the meds, since they are pushing you too far too fast, it seems.  Be sure the doc understands the magnitude of the side effects ... some docs don't realize there are patients who really don't exaggerate the side effects, so speak up and make sure he gets the point.  If he won't listen, then consider finding another doc.  

[nutrinut_bob]

Sounds to me like a classic case of the microvermin adapting to the medications during your time off them.  I am no doctor, but from a microbiological standpoint, I just cannot fathom why any physician would try  this on again off again approach.  You're far from the only person here that I see going through this.