My first appointment with KDM

[NHjane]

Good point, @Little Bluestem. However she's in our health plan so it should only cost $25, and she's very nearby, so it feels easier to go talk in person. Thank you for the suggestion though.

 

[RML]

Guess what arrived finally - that invoice I never got! I chased it up a bit at the time, then got confused and assumed I must have paid it on the day at the clinic and imagined Jan telling me it would arrive by post lol. I just paying things that first day in a blur and can't find any of the receipts etc so guessed this happened. Have not thought of it in ages. Next thing it arrives, 3 months later!

Buhner's book that I ordered arrived, and (if I ever get it off my Mum), will look through it. Feel a little lost with all this Lyme stuff, was clued up on ME for so long on that, clueless on this new development. Need some info fast.

Got some Kefir made again and enjoying it yesterday and some right now too, so that always helps with m bloating/bowel issues.

It sounds silly but it is only last week, I properly looked through the paperwork KDM posted on to me. When they arrived a few weeks back, I was too zombie like to understand the reports that day, or even read through them properly, just glanced at them. So now I can read it better noticed a few things. Firstly, he had me down as photographer not radiographer student, which gave me lil laugh. Then noticed he recommended I get a colonoscopy (sounds fun!), this wasn't mentioned in meeting with him so was a bit of a shock really. So I had a GP visit yesterday to get a referral for it. Hopefully I can arrange it before Belgium.

 

[Valentijn]

@RML - Have you tried another B12 shot yet?

 

[Sushi]

Firstly, he had me down as photographer not radiographer student, which gave me lil laugh. Then noticed he recommended I get a colonoscopy (sounds fun!) so had a GP visit yesterday to get a referral for it. Hopefully I can arrange it before Belgium.

I suspect he uses voice recognition software for his reports and perhaps, due to his unique accent, occasionally odd things pop up--my guess is voice recognition software not "recognizing!"

And yes, colonoscopies are loads of fun--as fun as a diet of jello and clear liquids, consumed between trip to the.....

Sushi

 

[RML]

@RML - Have you tried another B12 shot yet?

Yes, and trying to not think on these nasty things!
Tried the leg instead of hip, hurt even worse. Had a bruise this time but and inch away from site of jab (odd) and kept hurting when taking the stairs for rest of day.

There I was thinking I was all grown up and mature these days about blood tests and jabs - nope big fat baby again. Howling - hurts like hell! I could be doing sound effects for One Born Every Minute seriously!

Trying to persuade my mother to reduce it to twice a week instead of 3. 3 times a week comes round way too fast!

My mum is even cancelled her holiday to France to stay here and torture me with them Wish she wouldn't, for my sake, and for hers (she needs a break,totally stressed out of her mind, mainly cos of me)

I don't know why B12 anyway? Cos I'm not low in it, mid range in references. I did before have 5 jabs of it, obv much lower dose and didn't do anything for me besides bring up level from low to mid range.

 

[RML]

@Sushi That makes sense about voice recognition alright. I am also gonna try source some Lidocaine like you suggested the other day, thanks.

 

[RML]

Another thing about the report I was reading that I found interesting was the exercise stress test results. I would really like more about this to properly understand it all.

I read it in a short summary in his report. But my mum said there was a separate sheet for ex stress test, explaining it in fuller detail, just like lab results were attached not just in report.

Is this true?

We can't find it now, I don't ever remember seeing this, only reading it in his report. But my mum is convinced we had extra attachment sheet. And she is mega stressing and raging that it got lost at the consultant meeting last week, cos he was messing around with our report and lab pages, and muddling them up and took some off to photocopy. we didn't see this happening so don't know if it got lost then, or maybe my mum is wrong it was never there anyway.

 

[Dane]

You can get a waterbased vit B which is said to be a lot less painful. Far from all pharmacies have it though, but it might be worth to ask around.

 

[Valentijn]

@RML - The CPET exercise results are summarized in the front summary bit under "Exercise Testing". The additional page with some graphs and a chart is primarily for lung function (Spirometry).

The important bits are the "ECG" line at the top and "The VO2max was ... XX,X ml.min-1kg-1." "RQ" value is also somewhat important, as is heart rate at exhaustion, as those values demonstrate maximal effort.

 

[maryb]

You may be better off with the small insulin needles and .5ml of B12. These are obtainable from the local pharmacies in the UK. They're not allowed to sell the larger amounts that KdM prescribes but will substitute a months supply (NICE) = 4 x .5ml on an original prescription.
These needles can be used by yourself, think elderly diabetics? Okay your B12 intake will be less but you can probably get away with having the stronger injections 1 x a week or even a fortnight?

I also do magnesium with the .5ml needles. The substance stings but the needle bit is usually easy enough.

Its no good if it hurts so much, well that's what I think anyway.

 

[RML]

Thanks for that @Valentijn - really helps put my mind at ease. I had seen the bit in the summary report alright, and the attachment with spirometry. I find it all very fascinating, not that I understand alot of it though really. When I get a chance, I research it or maybe get a book on it, so can really know what is going on with my body.

I think my mum just got confused. There seem to be doubles and triples of most of the paperwork, of the results, and of the test list etc and info for first visit. things have been hectic since got back from second trip so have not organised them into ordered piles. Easy to lose something or even think you have.

@maryb Not sure what to do really. it is only part of pre-treatment causing me problems and I did want to try follow his plan as much as possible and trust that he has his reasons. I just don't know why the B12 at this point. Maybe I will ask him when I see him next.

 

[ahimsa]

You may be better off with the small insulin needles and .5ml of B12.

@RML, I used to give myself B-12 shots many years ago. I can't remember exactly when, some time in the early 1990s? So it's been about 20 years.

I'm chiming in now because of what Mary said about the needles. I also used the small insulin needles. I bought packages of needles at a pharmacy (back in the days when you had to buy things from a store, in person, LOL!). And I bought small B-12 vials from a naturopathic doctor (ND).

I gave myself shots in the thigh (quadriceps, in the top part of the thigh that makes up your lap) and it never hurt me much at all. So maybe what Mary says using smaller needles and smaller dosage would help you? Oh, and injecting the B-12 fairly slowly is also helpful.

By the way, I did this for about 2 years, maybe longer, but I never saw much of a positive effect. Definitely no extra energy.

I think the shots may have reduce my fasciculations (muscle twitches) but that's all I ever noticed. I kept on doing the shots for so long because I was hoping that they were doing something positive for me that I simply could not detect. (there was a lot of wishful/desperate thinking going on back then...) The shots had no negative side effects, and definitely were not painful, or I would have stopped doing them.

Of course, since the time when I was doing B-12 shots there have been all sorts of different issues having to do with the type of B-12, the amount, and so on. I don't know anything about that at all. I just wanted to comment on the needle size and the pain issue. I hope you find something that works for you.

PS. I should add that the B-12 was definitely getting into my bloodstream. A blood test that I had during that time showed a *really high* level of B-12, so much that it actually worried one of my doctors (the neurologist, I think?) until I explained that I was taking B-12 shots.

 

[Kati]

You may be better off with the small insulin needles and .5ml of B12. These are obtainable from the local pharmacies in the UK. They're not allowed to sell the larger amounts that KdM prescribes but will substitute a months supply (NICE) = 4 x .5ml on an original prescription.
These needles can be used by yourself, think elderly diabetics? Okay your B12 intake will be less but you can probably get away with having the stronger injections 1 x a week or even a fortnight?

I also do magnesium with the .5ml needles. The substance stings but the needle bit is usually easy enough.

Its no good if it hurts so much, well that's what I think anyway.

Insulin needles are not adequate because they are delivering B-12 in the wrong compartment. B-12 needs to be injected in the muscle, not in the sub cutaneous (fat) area.

That is why intra-muscular needles are longer, so it reaches your muscle.

Also the insulin needles may be too narrow gauge for the viscosity of the B-12 (but I am not sure about that one).

 

[Hanna]

And what about the compounded B12 transdermal creams?
According to parents from autistic children (they won't cooperate with IM injections), it fairly works...

 

[Valentijn]

And what about the compounded B12 transdermal creams?
According to parents from autistic children (they won't cooperate with IM injections), it fairly works...

I doubt B12 gets much skin absorption, if any. Has there been any real research into it?

 

[Hanna]

I don't know. It is no science, but I recall Dr Myhill's patients did some measurements... but perhaps I may be wrong and it was about transdermal magnesium? Still anecdotal though.

 

[Kati]

I am bypassing the injections all together and doing sub-lingual methyl B-12

 

[justy]

I don't understand why not sub cut injections - I have done these in the past with insulin needles. It didn't hurt. it was easy. it raised my levels substantially. Will KDM allow this if he wants me to do B12 again?

 

[RML]

I am bypassing the injections all together and doing sub-lingual methyl B-12

I had been doing B12 sub ligually for quite a while before my trip, would much rather continue it instead

I don't understand why not sub cut injections - I have done these in the past with insulin needles. It didn't hurt. it was easy. it raised my levels substantially. Will KDM allow this if he wants me to do B12 again?

Justy I had B12 sub cut before as well, only 5 though, recommended by neurologists after found not MS, and assumed my problems were lack of B12 . I had no problem with them whatever so ever. So gladly have it that way either.

I'm assuming KDM has his reasons for doing it his way over these methods. I do really need to find a different solution or better way of going about it. Had 3rd yesterday and quickly developing paranoia and phobia of it all. I am like my dog when she sees her bath and the evil yellow gloves being dragged out of shed, so hides in kennel. I don't fit in her little kennel though, so tried locking myself in bathroom as my Mum came upstairs with her tray of trauma.

I was wondering would emla cream help, but surely that would only work on the actually 'sharp scratch' bit, which I'm fine with, just the after effects once it's all inside me.

Also considering a heat pack (or should it be ice pack) to use in the half hour after to help pain go down quicker. Not sure it would work.

 

[Valentijn]

Also considering a heat pack (or should it be ice pack) to use in the half hour after to help pain go down quicker. Not sure it would work.

An ice pack would be the more helpful option, since it reduces swelling.