My first appointment with KDM

[Gingergrrl]

@RML It was great to hear your update and I am hoping that you can get the info that you need re: how to take the antibiotics. Valentijn's idea was great re: checking if there is a manufacturers name on the pill bottles or package. Also, and not sure if you mentioned this, but can you call KDM's clinic and ask for instructions? Even if he did not know which antibiotic he was going to use at the consult, now that he has decided, they should be able to give you some guidance or instructions. Best wishes!

 

[justy]

Hi RML, thanks for all the updates - been wondering how you where!

I am on the same two abx as you as first line of treatment. I was told clarithromycin for two weeks then add doxy. I know that Val takes her Doxy on an empty stomach, but the packet actually says to eat WITH a meal and large glass of water. Doxy is renowned for stomach upstets and also idigestion - I take mine with a banana or large slice of toast for breakfast. Like Val it is causing head/neuro issues after only two days - head swimming and woozy feeling, but ive tried taking it on an empty stomach and it was not nice. You need to get it down with a lot of water as if it stickc in throat can cause ulceration of oesophageous - alright once in stomache though.

Sorry for typos, trying to get dinner. Havent added in my C yet - decided to take Doxy first and only on half dose as I have some breathing issues that I wanted to hit first and my GP agreed.

 

[Valentijn]

I know that Val takes her Doxy on an empty stomach, but the packet actually says to eat WITH a meal and large glass of water.

They say that to deal with stomach upset ... but it's doing that by reducing the absorption of doxycycline somewhat.

I don't get any stomach upset at all, just neurological motion sickness. Hence no food + laying down with my eyes closed works so much better for me than taking it with food.

 

[justy]

My packet of Clarithromycin says can be take before, after or with food. My GP advised me to take any supplements like iron or magnesium etc a few hours away from abx. If you take remedies for indigestion you cant take some of them with these abx - my GP advised to take Omeprazole two hours after abx.

 

[justy]

http://www.medicines.org.uk/emc/medicine/18078

http://www.medicines.org.uk/emc/PIL.25849.latest.pdf

 

[Little Bluestem]

Wow, has it been 3 months! I am glad to hear that your treatment is progressing.

 

[RML]

I have been on the orals now for about a week and half or so. So far not much reaction to it really, I mean no nausea and motion sickness or neurological stuff like that.

My gut issues have worsened a little again though. Which seems nearly fixed over last 5 months of treating it. So kinda frustrating to feel it's going backwards on it. It is not major reaction like before , only slight bloating issues again and constipation kicked in again.
I guess I should be glad not to be having a worse reaction. But actually not having any herx reaction either , which worries me. I don't want to feel crappy obviously but perhaps they are not working for me if there is no reaction.

I have been taking them with meals, I hope that won't effect absorption too much. But tried empty stomach, and while I didn't have severe reaction either did make me my stomach a little crampy gripping pain.

My regurgitation issue, which settled and went away for 2 months on pre-treatment, but came back while on IV's. It was a little more intense for a day or two when started. I think I remember the first day or two, when taking a Vsl later in day, it did repeat worse than usual for first swallow or two of it. But since then it's been ok.

I am still planning to email the clinic, and ask for some proper suggestions or plan on taking them. I still feel I am muddling through it. I might change how and when I take them, next week. I am thinking I am not taking them properly. Of course, I don't want the nausea or motion sickness or herx's but don't want to be wasting them by doing it incorrectly either.

 

[RML]

I don't think I mentioned the testing I got done earlier. Besides the basic blood tests and I think they are liver function tests, he is also re-doing cytokines panel again,and also Prostagladin serum test, which wasn't raised before! And Babesia FISH test. I think the redlabs lot should cost about E350. I don't know prices of bloods and liver ones.

Still waiting on invoice but no hurry on that!

Costs are mounting fast!!!! I think just the 2 months meds following on from IV experience cost about E750 ish.

Also, our landlady/ host while staying in Brussels, has not returned our deposit either. She said she would do it over weekend after we left on Thursday, now it's over 2 weeks later. I emailed her yesterday hoping to prompt her but my Mum is in panic thinking she is trying to do us!

It would come in handy too as we need to book our flights and accommodation for next appointment in December. And can't afford them!!!!

So either I will go on my own, to half the cost, but don't think that will work as I can't hear a damn thing and I need to know what is going on so need someone there.

I did briefly consider doing a phone consult instead , or at least my Mum taking it. But then realised maybe he will want to re-test properly after 5 months treatment? And he also mentioned a new treatment last time that he is trying to organise from America, but never stated it would be starting and organised by next appointment. I'd rather not miss it in case though.

So still planning on going, but hoping flights will come down in price, or else go into Charleroi as it's cheaper and also find somewhere cheaper than Eurovolley. The closeness is ideal, but 90euros a night is far too much.

It will be a 4-5 weeks wait til results come in and I guess the next appointment time will fly by too. So much waiting, I am too impatient.

 

[Little Bluestem]

I did briefly consider doing a phone consult instead , or at least my Mum taking it. But then realised maybe he will want to re-test properly after 5 months treatment?

You could call/e-mail and ask if he wanted to see you in person or if a phone consult would be OK.

 

[RML]

Thank you @Little Bluestem I am going to email the clinic later on about the oral abx so will ask about that too.

 

[Valentijn]

@RML - Food does interfere with the absorption of Doxycycline, and anything with minerals such as calcium, magnesium, etc (dairy, supplements, fortified food) taken around the same time will bind the doxy and prevent it from being absorbed.

It sounds like food intake doesn't matter for clarithromycin. It just delays absorption a bit, but the same amount gets in. Nonetheless, I take mine on an empty stomach to be on the safe side