My first appointment with KDM

[RML]

Thanks Joan, I was able to get some online, but not all. I hope your boy gets to see him soon and gets the help he needs to improve.

 

[JoanDublin]

@Ambrosia_angel There are 2 two places that look at fatigue /M.E so I will also check if they do I.V's.

Do you mind me asking you where are these places in Ireland that look at fatigue/ME? I haven't been able to find any myself but maybe I'm not looking in the right places?

 

[RML]

To be honest, flying there is extreme and not my choice of doing it, but it was decided and booked etc while I was still sleeping in. But it is not my only issue needing sorting or having difficulty with, if it was the only one I could devote more time or think of a better way.
I am also trying to sort getting I.V's here at home, finding a G.P to take it on, or finding accomodation near clinic in Belgium, and others. A lot of my enquiries are finding dead ends, or zero responses, or vague answers. So it is all very frustrating. I am near giving up on Iv's here, and just heading to his clinic instead.

Also been in touch with the Lyme people here and such lovely, helpful bunch. One lady lives near me and popped in for a chat the other day to tell me about her experiences getting treatment. So nice to see and hear from someone better, makes me feel less hopeless. (Had been in a pretty big down in the dumps mood since my last vist and getting results)

I have two appointments tomorrow, and trying to decide which to cancel. One is for a infectious disease specialist that my aunt organised but have since heard from that lady I mentioned that with other patients, worse than me, he only gave orals and for short time. So I doubt he will be on board with my proposed plan. I don't want to waste my energy on a trip into town, or more money, for nothing.
The other appointment is to go back to my audiologist, and get my hearing aids re-tuned again. But I have only been out of the house once since my last visit, so don't know what to say to her, I am not getting a full experience or range of sounds stuck at home.

So too much stuff to juggle and not enough wellness in me to do it all.

@JoanDublin I have sent you a message!

 

[RML]

Got all my stuff for pre-treatment today, both by flight and post. Sipping on some Vsl right now, bit gross but I'll get use to it.
Fridge is jam packed with packages and need to find some press to put rest away safely. It seems a huge amount to get through in a day, let alone 3 months! And the cost of it, just realised now the total amount - madness! it better make me better or at least make some difference.

 

[Valentijn]

Got all my stuff for pre-treatment today, both by flight and post. Sipping on some Vsl right now, bit gross but I'll get use to it.
Fridge is jam packed with packages and need to find some press to put rest away safely. It seems a huge amount to get through in a day, let alone 3 months! And the cost of it, just realised now the total amount - madness! it better make me better or at least make some difference.

Heh, I like the taste of the VSL .... mmmm, bacterias

We're now using our top shelf in the refrigerator for medical stuff, since we have to keep my ceftriaxone IV packs in there. But my fiance contributes a bit with his insulin stuff

The only big expense we have is the 4ME. But it's still cheaper than the other sources, and it does seem to help me a good bit with cognitive functioning.

 

[JoanDublin]

Got all my stuff for pre-treatment today, both by flight and post. Sipping on some Vsl right now, bit gross but I'll get use to it.
Fridge is jam packed with packages and need to find some press to put rest away safely. It seems a huge amount to get through in a day, let alone 3 months! And the cost of it, just realised now the total amount - madness! it better make me better or at least make some difference.

The very best of luck with the treatment. Fair play to you. You got it together despite all the stresses and barriers. I sincerely hope that this is a turning point for you.

 

[xks201]

I haven't personally seen anyone with Lyme cured of it. My girlfriend's mother has it and she refuses to get on hormone therapy even though she had a hysterectomy or thoroughly check other hormones or run tests such as genova one or spectracell nutrient analysis. I think that it is one of those diseases where you need all the data you can get on strengthening your body because from what I have seen antibiotics alone usually don't work. Many of us carry around toxic bacteria but our bodies have adequate hormone levels and nutrition to not let it multiply too fast - though I would imagine that most people that have it have it for life just like most any bacteria really. Unless the immune system starts working an antibiotic is never going to kill 100% of bacteria. Hormones and vitamin levels control the immune system. Hopefully your mom does get reimbursed for all of this because it is my humble opinion that as weak as you probably are antibiotic therapy is not going to be a cure. I hope I am wrong because you have done a ton of research on yourself and others here.

I seriously hope Kenny did not just stop testing hormones and nutrition levels at a lyme diagnosis.

 

[RML]

@Valentijn Is that what is in it ? bacteria? I added a splash of OJ to the water with it this morning, tasted a bit better. It's not awful, just a bit funky or something, and I think I will get used to it and not notice it soon.

I really need to do some research on each on, I have no clue which is for what symptom etc.

Is it ok to post my pre-treatment plan here? I mean I don't want to be giving away his secrets or what he does, way too many creepy anti-recovery people out there looking to get at those who actually do 'do' what their profession entails - shocking thing called treat the disease!

@xks201 By nutrition levels, do u mean food intolerance and fructose/lactose testing? I got them done with him, I think most patients do. I can't remember if he did hormone testing on me, but I did get it from my GP as well as extensive vitamain/mineral level testing done, which I brought with me to show him so he does have a record of it.

 

[Valentijn]

@Valentijn Is that what is in it ? bacteria? I added a splash of OJ to the water with it this morning, tasted a bit better. It's not awful, just a bit funky or something, and I think I will get used to it and not notice it soon.

VSL is probiotics, which are the nice bacteria we want in our tummies It's especially good take it when antibiotics are part of the treatment plan, to make sure the good stuff stays and the bad stuff can't take over. For some of us, it's especially essential due to low or null levels of bifidobacteria, etc.

4ME is also known as Nexavir or Kutapressin or Hepapressin. It's supposed to be an immune modulator, which doesn't mean a lot to me, but I do have noticeably better cognitive function when taking it, so what the hell And it sounds like it might have anti-viral properties or something.

 

[RML]

Ok that is good, I'm at the null bifidobacteria stage too, and desperate to change it.

I'm not on 4ME and I could def do with some better cogitive functioning

Different plans for different people though

 

[xks201]

I would think taking antibiotics and probiotics at the same time would basically cancel out the effects of one another. lol

And a hormone panel is needed @RML

 

[xrunner]

Not at all if you take them a few hours apart. This will help prevent any potential damage to your gut from taking long courses of abx

 

[Daffodil]

my gut must be really messed up cuz VSL gives me diarrhea and so do other powerful probiotics

 

[RML]

I have been feeling really good energy wise for about a week or more now. Feels so good to be actually be able to do some things again. I have not felt this good since I had that big downward slump in Mid-January and never came out of. Perhaps even the week before that as well, but was having constant headaches becoming migrainey that week, was dragging me down and irritating me.

All my pre-treatment bits arrived by Thursday so I've been on it 2 days now. It was good timing too as on Thursday my stomach swelled right up big time. The 2 days before it had been a bit dodgy so should have guessed this was coming.
Not had these bad gut issues this bad in so long now (must start doing the Kefir again, I'm sure it was helping), but anyway I had a Frappucino on Tuesday and been eating a lot of Quorn again lately, which I stopped cos I suspected it was affecting my stomach before. So my belly looks about 6 months pregnant and feel I'm gonna explode, so good timing to get some treatment.

The Lipoceautical L-Glutathione came by post and it is a teeny tiny bottle, no way gonna last me long enough. I should have ordered more but I didn't calculate it properly, my head was melted that day. It will probably only last me a month. Pity since P&P cost E18 and tax E12, I was hoping to get it all in one go!

The Rivotril - I wasn't sure what it was for, so I googled it - for epilepsy, so I was still confused, looked into it a bit more and found it can used as a sleeping aid also. So this did make sense, as I had asked for sleeping tablets to help me but didn't see it listed on script so was a bit annoyed, but figured it out now.

I take 8 drops of it - bright blue stuff so looks odd. It burned a bit (more like a tingle really, on lips, tongue and throat) so am now putting into a glass and adding a teaspoon of water to help. Hope this is ok, and doesn't dilute it too much or whatever.

The instructions on all of them on how to take them are a bit vague, and those that do come with an info sheet are in dutch or french. May try Google translate tomorrow to work out what info I'm missing.

This morning taking the Readisorb I got confused (and maybe sleepy dopey brain) I took it straight from teaspoon, not diluted in water at all, and Oh God what an awful taste, real nasty. Was guzzling down my tea and OJ to get rid of it from mouth. Need to get on top of all these, properly understand them, so many, and all different!

My Mum is a bit confused about how to go about the B12 Jabs - need to look into this more and google translate as well. She will not be starting them til next week anyway.

As for the 2L of water, I've been measuring it out in a jug to make sure I am getting enough. But it is working out not much more than I usually drink anyway, maybe a glass or so more. (My constant gasping thirst and dry mouth and need to always be drinking is one of my most irritating symptoms.)

From the pharmacy in Brussels airport, we ordered the 3 months supply all in one go, but seem to be 9 ampoules (?) short for B12, this was miscalculated on their part and offered to send it on to us. But said we will collect it ourselves in August when over there. I should have enough to last til then.

I am really glad to have all this sorted now. I was really worried about all that getting through customs and security, even online pharmacy stuff. Would it all be taken on us, loss of all that hundreds and efforts in journey etc. Also, worried about keeping VSL cold , so when step dad arrived at airport checked with pharmacy it was ready to go and then returned at 7 before closing time so was kept refrigerated most of the time. He also brought freezer bags and ice containers to keep it cool as well, but afraid it be an issue at security might be regarded as liquid? So put them in the hold even though it gets hot there.

All these worries probably makes me seem a crazy paranoid. But lately everything seems to be a barrier at every step, nothing is easy as it should be, so getting extra cautious and paranoid expectations.

I am late starting this pre-treatment now, for various reasons. Will this effect when I can start IV's ? Push it back further? Or can I continue with this lot and still start IVs on August 4th.?

And on a bright side, my step dad brought back a box of the most gorgeous Belgian choc truffles. So yummy. Me and my mum checked some out when we were there, but we are so cautious with money especially now with so many expenses, and wouldn't splurge on some, but my step dad is a spendaholic/shopaholic. At least a nice treat on top of all constant meds!

 

[Valentijn]

I am late starting this pre-treatment now, for various reasons. Will this effect when I can start IV's ? Push it back further? Or can I continue with this lot and still start IVs on August 4th.?

I'd suggest keeping your August 4th appointment, since you'll probably just starting getting IV things set up then, instead of starting actual IVs on that date (unless you plan to do all of your IV in Belgium).

 

[NHjane]

my gut must be really messed up cuz VSL gives me diarrhea and so do other powerful probiotics

Likewise.. at first KDM said Stop taking them, but when gut was a bit healed (from Mesalomine (Pentassa)) started them again. Still cause diarrhea but plugging forward bec will need them once on abx

 

[RML]

my gut must be really messed up cuz VSL gives me diarrhea and so do other powerful probiotics

How long were you taking it for before it affected you?

I have only taken 5 or 6 sachets now so far. Since my stomach bloated and swelled up, been severely constipated. So be glad of any way shifting it outta me, even diarrhea at this point!

Not sure to take my usual stuff to get things moving, but just wait it out for new gut stuff to start working or doing something.

 

[Sushi]

How long were you taking it for before it affected you?

I have only taken 5 or 6 sachets now so far. Since my stomach bloated and swelled up, been severely constipated. So be glad of any way shifting it outta me, even diarrhea at this point!

Not sure to take my usual stuff to get things moving, but just wait it out for new gut stuff to start working or doing something.

We are supposed to take VSL 3 at night--seems to work best then.

Sushi

 

[RML]

I'd suggest keeping your August 4th appointment, since you'll probably just starting getting IV things set up then, instead of starting actual IVs on that date (unless you plan to do all of your IV in Belgium).

I will be, the infectious disease guy I'm going to see, I keep getting mixed messages about. I was meant to see him last week, but cancelled til next , to think it over a bit more. The general consensus on him is that he only believes in orals and then just for 4 weeks, even patients worse than me. They all say he won't like foreign tests and will want to do his own as procedural thing, and def won't like following another doctors protocol. Others say he has on odd occasion given IV's for neurolyme for 4-6 weeks. And that he is best option for treatment of some form in this country anyway.

Firstly I def don't want more tests, had enough of them, I feel what is point of only a few wks treatment - won't make me better. Or perhaps I should take a few weeks here and get rest at Himmunitas. But if I have to go to Brussels anyway, why not get it all done there, and stop stressing me out jumping through hoops and begging for treatment.

 

[RML]

Ok Sushi, mine said to take it twice a day, so was taking it around early afternoon and hour or so after dinner.

Maybe I'll develop a better plan or schedule for it all, after a few days at it, will know what works best for me.