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No progress for 2.5 yrs. what should I ask my LLDR?

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Posted 2/6/2019 10:05 PM (GMT 0)
I have an appointment with my Dr in Belgium next month. We have been doing everything right, abx, herbals, diet, probiotics, biofilm breakers etc.
And have had all tests under the sun.

tested positive with armin labs and I remember hiking in the mountains in Massachusetts 15 years ago.
tested negative for all known co-infections.

zero progress however. still herxing from the nutra medix products(banderol/samento/cumanda).

at a loss at this stage. what should i ask my Dr.?
Posted 2/6/2019 10:08 PM (GMT 0)
Have you tried IV antibiotics? I’m still not 100% but IV helped me get back to functioning at least!
Posted 2/6/2019 10:14 PM (GMT 0)
Here are a few questions I would probably ask:

1. Can you explain why you feel this is (or, was) the correct treatment plan?
2. Will you please explain my lack of progress?
3. What evidence-based plan will you use to move me forward?
Posted 2/6/2019 10:21 PM (GMT 0)

Irishlymie said...
I have an appointment with my Dr in Belgium next month. We have been doing everything right, abx, herbals, diet, probiotics, biofilm breakers etc.
And have had all tests under the sun.

tested positive with armin labs and I remember hiking in the mountains in Massachusetts 15 years ago.
tested negative for all known co-infections.

zero progress however. still herxing from the nutra medix products(banderol/samento/cumanda).

at a loss at this stage. what should i ask my Dr.?

i have a few questions:

Are you seeing a Dr. M from Belgium?

What have you been on re: abx? Have you done any anti-malarials- specifically Mepron or Malarone?
And...have you taken Rifampin or Rifabutin for suspected Bart?

Do you experience herxing?
Posted 2/6/2019 10:30 PM (GMT 0)

Vodka, Cran with Lyme said...
Have you tried IV antibiotics? I’m still not 100% but IV helped me get back to functioning at least!

I haven't tried it. I think my dr has used it on other patients, he is in Belgium and I am in Ireland however so logistically difficult. also would be very hard to persuade Irish Dr. to go along with it. thanks though
Posted 2/7/2019 12:05 AM (GMT 0)

The Dude Abides said...
Here are a few questions I would probably ask:

1. Can you explain why you feel this is (or, was) the correct treatment plan?
2. Will you please explain my lack of progress?
3. What evidence-based plan will you use to move me forward?

these are a good place to start. there is a language barrier that makes it hard for in depth discussions
Posted 2/7/2019 2:50 AM (GMT 0)

Girlie said...

Irishlymie said...
I have an appointment with my Dr in Belgium next month. We have been doing everything right, abx, herbals, diet, probiotics, biofilm breakers etc.
And have had all tests under the sun.

tested positive with armin labs and I remember hiking in the mountains in Massachusetts 15 years ago.
tested negative for all known co-infections.

zero progress however. still herxing from the nutra medix products(banderol/samento/cumanda).

at a loss at this stage. what should i ask my Dr.?

i have a few questions:

Are you seeing a Dr. M from Belgium?

What have you been on re: abx? Have you done any anti-malarials- specifically Mepron or Malarone?
And...have you taken Rifampin or Rifabutin for suspected Bart?

Do you experience herxing?

1. dr k dm?

2. I didn't keep track of all the abx, there' been so many. started with doxycylyine, on dalacin at the moment. I should get a list from my dr.
don't think I did any anti malarials, did 3 months of anti virals though.

3. still herxing from both herbals and abx, I would score it about 6.5/10 in terms of discomfort /pain.

thanks
Posted 2/7/2019 3:29 AM (GMT 0)

Irishlymie said...



1. dr k dm?

2. I didn't keep track of all the abx, there' been so many. started with doxycylyine, on dalacin at the moment. I should get a list from my dr.
don't think I did any anti malarials, did 3 months of anti virals though.

3. still herxing from both herbals and abx, I would score it about 6.5/10 in terms of discomfort /pain.

thanks

Yes, Dr. K D M is who I was referring to. A prior forum moderator was seeing him and really liked him.

Ive not heard of dalacin before - what class is it...?

It might be worth investigating/trying anti-malarials - Mepron would be a good one to see how you react.

Also have you ever taken Rifampin or Rifabutin for bartonella? Another one to try.
Posted 2/7/2019 5:59 AM (GMT 0)
Have you tested for mold and heavy metals?

I did those tests after reading that they often are the reason for people who do long treatments with no progress.
I had both + very low iodine levels.
Posted 2/7/2019 7:28 AM (GMT 0)

Deep_sleep said...
Have you tested for mold and heavy metals?

I did those tests after reading that they often are the reason for people who do long treatments with no progress.
I had both + very low iodine levels.


Yes - but I would first do a trial of meds for the other two B's first. Borrelia rarely comes alone...usually with one or both of the other two (Babs and Bart)
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