Daffodil
Senior Member
- Messages
- 5,875
hi all. i went to belgium and on march 3rd, saw KDM for the 4th time. i also went to buy immunoglobulin for subQ infusion. i also purchased arcoxia, which is the anti inflammatory KDM likes to use.
the appointment itself went OK. he is VERY busy at the belgium clinic so i went through my list of questions quickly and he provided short answers.
i told him i had had some feeling of initial improvements with the ceftin+clarithromycin combo but it did not last. i also told him 2 months into this regimen, i had 10 days of 60% less brain fog, which felt like a miracle (the fog came back after this).
i asked if i could take antibiotics and digestive enzymes at the same time. he said yes.
i asked what he thought about fecal transplants. he didnt disparage them but also didnt recommend them for me. i think his team is doing a lot of research in the area of gut microbes/CFS/lyme and when things are unpublished, it is difficult to get too much info.
he said he had 2 patients who had fecal transplant due to C Diff infections and did improve for a while.
now that my 1,25-dehydroxyvitamin D has normalized, i asked if i could take vit D supplements since my 25-hydroxyvitamin D is a little low. he said yes.
i asked if he thought IV Vitamin C might help me. he said it doesn't stay in the system very long. i took that to mean that i shouldn't bother with it.
i asked about my perpetually high CD8. on the last visit, he told me this viral. i asked if we should address this, since the last EBV test was negative. in response, he ordered CMV and HHV6 (i think) testing (i have been getting these antibody tests for almost 10 years and they have never really indicated much).
i asked about enterovirus but i cannot remember what he said lol sorry
i asked about the nystatin nasal spray that i heard dr. brewer is using and i don't think he knew about it.
i told him that despite my sticking to the diet pretty well, i have not been able to give up tea with milk even after 2 yrs of trying. he said as long as my general diet is healthy, it is OK.
i asked if i could try the supplement zinc-carnosine (it is supposed to help leaky gut from my readings). he said yes.
i asked...if the disease is being caused by intracellular bacteria, why does this bacteria not show up on next generation sequencing of tissue (which his team did)? he said the sequencing was not deep enough.
i said that i did not feel that the tasectan was doing anything in preventing antibiotic-related diarrhea and he said i could stop taking it.
i asked, given the extent of my illness (over 21 years) and age (44), what my prognosis is. he said that long term, the prognosis is good.
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while i was in belgium, i asked to get IVIG. i believe i got 10 grams, which i was told would last 1 month.
the trip proved to be hellish, with a lot of logistical problems surrounding the immunoglobulin i went to purchase. there was a lot of crying and even an emergency wheelchair at the airport!. a lot of pastry-eating too lol...i expected to be in bed about 2 weeks after i got back, but thanks to the IVIG, i was out to buy groceries 2 days after my return!
the IVIG seems to have helped my energy levels but strangely, has made my brain fog and lymph node aching worse.
-----
KDM told me to continue on the same antibiotics. since i had been on them for 4 months already, and knowing that KDM changes the regimen every few months to avoid gut flora problems, i double-checked to see if this wasn't an oversight; it wasn't. i assume this has something to do with my telling him i had the 10-day period with much less brain fog.
the appointment itself went OK. he is VERY busy at the belgium clinic so i went through my list of questions quickly and he provided short answers.
i told him i had had some feeling of initial improvements with the ceftin+clarithromycin combo but it did not last. i also told him 2 months into this regimen, i had 10 days of 60% less brain fog, which felt like a miracle (the fog came back after this).
i asked if i could take antibiotics and digestive enzymes at the same time. he said yes.
i asked what he thought about fecal transplants. he didnt disparage them but also didnt recommend them for me. i think his team is doing a lot of research in the area of gut microbes/CFS/lyme and when things are unpublished, it is difficult to get too much info.
he said he had 2 patients who had fecal transplant due to C Diff infections and did improve for a while.
now that my 1,25-dehydroxyvitamin D has normalized, i asked if i could take vit D supplements since my 25-hydroxyvitamin D is a little low. he said yes.
i asked if he thought IV Vitamin C might help me. he said it doesn't stay in the system very long. i took that to mean that i shouldn't bother with it.
i asked about my perpetually high CD8. on the last visit, he told me this viral. i asked if we should address this, since the last EBV test was negative. in response, he ordered CMV and HHV6 (i think) testing (i have been getting these antibody tests for almost 10 years and they have never really indicated much).
i asked about enterovirus but i cannot remember what he said lol sorry
i asked about the nystatin nasal spray that i heard dr. brewer is using and i don't think he knew about it.
i told him that despite my sticking to the diet pretty well, i have not been able to give up tea with milk even after 2 yrs of trying. he said as long as my general diet is healthy, it is OK.
i asked if i could try the supplement zinc-carnosine (it is supposed to help leaky gut from my readings). he said yes.
i asked...if the disease is being caused by intracellular bacteria, why does this bacteria not show up on next generation sequencing of tissue (which his team did)? he said the sequencing was not deep enough.
i said that i did not feel that the tasectan was doing anything in preventing antibiotic-related diarrhea and he said i could stop taking it.
i asked, given the extent of my illness (over 21 years) and age (44), what my prognosis is. he said that long term, the prognosis is good.
-----
while i was in belgium, i asked to get IVIG. i believe i got 10 grams, which i was told would last 1 month.
the trip proved to be hellish, with a lot of logistical problems surrounding the immunoglobulin i went to purchase. there was a lot of crying and even an emergency wheelchair at the airport!. a lot of pastry-eating too lol...i expected to be in bed about 2 weeks after i got back, but thanks to the IVIG, i was out to buy groceries 2 days after my return!
the IVIG seems to have helped my energy levels but strangely, has made my brain fog and lymph node aching worse.
-----
KDM told me to continue on the same antibiotics. since i had been on them for 4 months already, and knowing that KDM changes the regimen every few months to avoid gut flora problems, i double-checked to see if this wasn't an oversight; it wasn't. i assume this has something to do with my telling him i had the 10-day period with much less brain fog.
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