KDM clinic appointment Monday

[heapsreal]

Bugger.
is it possible to do phone or online consult and get some testing done? ?

Try not to belt yourself up, your right in that you wouldn't get a cure on the first consult.

try to rest up and then organize another plan of attack.

Good luck,

 

[Gingergrrl]

@justy I am so sorry to hear what happened but it was absolutely not a "complete fail" as you labeled it. It was an amazing attempt by an amazing person to do everything in your power to get better for you and your family. It sounded like a very strenuous trip involving many different parts and there is no way I could have done this either.

I have a few logistical questions-

First, what is Eurostar? Is this a train? Is there any way that you can do a direct flight from Wales to Belgium without all the different legs of the trip? If you had a wheelchair at both airports would flying be possible? I know it might be cost prohibitive but I was wondering if it was logistically possible from a health perspective?

Second, if flying is out, is there any way to stretch out the journey so it is not all in one day? Meaning can you plan to stay longer with your mom before embarking on the second part of the journey?

I don't think you have lost more ground and if you had forced yourself to push through, you may have gotten more ill than resting at your mom's and figuring out a new plan of attack.

But I totally understand the sadness and disappointment and would be feeling the exact same way if the situation were reversed. Is it possible to do what @Daffodil recommended and get the IVIG to take home to administer or is it too dangerous to do outside of a doctor's supervision?

Sending you a big HUG

 

[msf]

Hi Justy,

I'm sorry to hear that. I can totally understand how it could be too much - I live on the South Coast, and have only been ill for a year, and apart from one trip to Brussels to see KDM I haven't been anywhere, not even to London. For the first six months I didn't even make it to Brighton, which is half an hour away by train!

Hope you find a way to get some treatment.

Mark

 

[Hanna]

I am so sorry for you Justy and fully understand what you have been through. I just can't travel for the same reason. My last attempt was in 2007.

But...I succeeded in deciding Hubby this year to fly and see a doc for me - as my country is totally deprived from anyone. It wasn't easy, as even a first visit would not be possible and most of the MDs won't agree to cooperate (I think the fact he is a MD also helped, but you are already in touch with KDM). But he made it in May, took all the info with him ...and now I have a treatment I can do from home. That's also a solution.

Noise, light, sound but also high EMF exposure like in central stations, airports and so on are a no-no for some of us. I begin to shake then I go through a crisis which is like epilepsy with facial palsy if someone doesn't help me quit the spot and getting to a better place. Beeing alone in a wheelchair in such a position is a pure nightmare.

I would ask KDM what can be done from home, order the meds, find an alternative way to have the IVIG for example etc... in order to get better and be able in the near future to fly to Brussels and complete treatment.

Take care!!!

 

[maryb]

Glad to hear you're back home and able to rest justy. The Brussels trip is a nightmare really I have to say, One time I stayed 1 night in a hotel the south of the UK, after wearying 6hr drive, Eurostar the following day, (2 min taxi from hotel) that night hotel stay in Brussels, the next day my appointment and back to the UK late afternoon, then another night in the south of the UK before driving home the next day. So 3 nights in hotels for a 15min appointment and some blood tests!! 4 days away from home.Crazy isn't it.

 

[Apple]

Sorry to hear you didn't make it to Belgium, Justy.

KDM is on my list of future doctors to see. But, like you, the long journey is a huge issue. So we were throwing around the idea of possibly hiring a motorhome or reaching out to someone who has one, so I could just lie in the bed with the curtains closed the entire way. Would that be a possibility for you? Obviously not the cheapest or easiest method of getting there.. but an idea, perhaps?

I hope you find a way. <3

 

[NilaJones]

Big hugs to you, justy. It's incredibly frustrating, isn't it?

I saw KDM for the first time a few weeks ago. He is a very nice guy and, of course, very smart and knowledgeable. But this was the first time in 6 years I was well enough to travel.

Have you been talking or emailing with Charlotte, or his other staff people? The ones I have met have been extremely nice and understanding.

 

[bertiedog]

@justy So sorry to hear your news, you must be feeling very down at the moment but I do hope you will soon feel better over not going this time.

I am not giving advice but wondered if you had thought about trying herbal tinctures to help your immune system? I have been doing the Cowden protocol or at least a modified version of it for 3 months now and I am tolerating everything fine and I even think my IM is slightly stronger. Also I have been taking just 1 mg Low Dose Naltrexone for 5 months now and I find this helpful too.

I don't have a doctor to work with me so I am on my own regarding any treatment.

Love Pamx

 

[justy]

@Gingergrrl - just wanted to say that yes Eurostar is a train that goes under the English channel. I cant fly because I have a serious phobia and also it is still a long drive to England to get on a plane and all the attendant difficulties with being in open, loud, bright, smelly public spaces. thanks for your thoughts tho!

@bertiedog - I am planning on some kind of herbals treatments for the next few months at least. I need to strengthen my immune system and get inflammation down and work on calming the nervous system I think. I worked with a very good herbalist for the first three years of my relapse and she helped me - very slowly, but it did help a lot. She is coming for a home visit next week (I cant get out at all now without crashing)

Then I have phone apt with LDM and will ask for advice re getting me stronger for travel next year maybe. Then next thing is apt at Breakspear in late Feb (hoping I can travel to London by then...) and see if they can do the IVIG and perhaps some iv abx there?

In the meantime I still have the apt with the toxicologist to discuss and test for drug issues as I don't seem to be able to tolerate anything anymore... 3 possible allergic reactions to three different abx. Severe adverse reaction to only 10mg of prednisolone this week, then yesterday severe reaction to low dose of curcumin (also had very severe reaction to an SSRI anti D 6 years ago - just one dose) and the other day I started itching all over after eating some food from a take away (pad thai) that has never happened to me before!

Arrgghhhhhhh!! I feel exhausted just looking at my new plan which s supposed to be me backing off and resting - lol.

 

[Valentijn]

@justy - have you ever tried eye masks and/or ear plugs or ear muffs when in bright and busy places? It might feel socially awkward, but at least you wouldn't be able to see anyone giving you weird looks

 

[Revel]

@Valentijn, I find the sensory overload of being in motion so unbearable at times that I have even contemplated wearing my old pony's driving bridle with the blinkers to limit my peripheral vision!

I reckon your suggestions would be far more socially acceptable !!

 

[xrunner]

Hi @justy,
I've just read through your ordeal and feel sorry for you but I admire the poise with which you seem to take everything in. Hopefully some of the people you're going to see will help sort things out a bit.
It's probably not any consolation but in my case not even three months into my Lyme treatment I developed mcs and had to put everything on hold for several months as I tended to react to any possible treatment. Thanks God that went gradually away but I then had to battle over and over with other setbacks. It seemed as if any treatment that was starting to help then brought with it something else to block my recovery.
All I wanted to say is that with a bit of persistence and good medical advice it's possible for us to get to a better state of health although it does never seem very straightforward and easy.

I also read about your app. at Breakspear. Having been there myself, I know that what they're particularly good at is testing for allergies, sensitivities and mcs-like reactions. Like the reactions you're describing to various medications. Then they can put together an antigen vaccine (info on their website) for your needs that can desensitise from whatever is triggering your reactions in the first place e.g. foods, smells, supplements, medications etc.

If you find your sensitivities tend to increase you may want to look into this because there may be something that you don't suspect that may be upsetting your immune system and cause a cascade effect, removing that may also help with other symptoms with no apparent connection.
Best wishes

 

[andre79]

@justy i hope you are feeling better now. Don't be sad because you missed the appointment, maybe it wasn't the right time. Now, just rest to gather some strenght and eventually you will be able to go. You already did it, so it's a matter of time. Most important thing, don't be hard on yourself. What you are doing already, seeking for treatment, is truly heroic.

 

[Gingergrrl]

What you are doing already, seeking for treatment, is truly heroic.

@andre79 Very beautifully said, Andre, and that we are all fighting for each other, and continuing to seek treatment, and not giving up with each set back, is truly heroic.

 

[andre79]

I feel exactly the same @Gingergrrl and you actually never know how strong you are until this kind of illness hit you. Turns out that we are all fighters and i admire every single one of you, specially the ones that have had this for long time and don't give up.

 

[maryb]

Hi @justy
thought I'd add my tale so you don't feel alone Had an appointment in London to consult about getting my amalgams removed, booked hotel, dentist, B/spear for a blood test (always useful if you're passing!). Just had to cancel the lot, (luckily at no cost) as feeling so rubbish, the pain from the head pressure is off the scale, its keeping me awake during the night so not getting any sleep. Does it ever end? Hope you're feeling a bit better from resting.

 

[justy]

Hi @justy
thought I'd add my tale so you don't feel alone Had an appointment in London to consult about getting my amalgams removed, booked hotel, dentist, B/spear for a blood test (always useful if you're passing!). Just had to cancel the lot, (luckily at no cost) as feeling so rubbish, the pain from the head pressure is off the scale, its keeping me awake during the night so not getting any sleep. Does it ever end? Hope you're feeling a bit better from resting.

So, so sorry to hear this. It just doesn't seem fair does it? I send you some gentle thoughts to help the head. How is the B/S treatment going? I have thought about amalgams but just too sick to contemplate. I have had very healthy friends get very sick while they did this.

At the moment I am working with a local medical herbalist - she cam eot see me at home yesterday and says we can work on anti-inflammatory and immune support to try to get me well enough to travel to Breakspear in Feb, so that they can perhaps get me well enough to travel o Belgium again...

Its the very long game isn't it? I keep reading and hearing stories pf people with chornic Lyme who get better so I feel I have to keep trying. My herbalist thinks im too ill to think about killing anything just yet.

I REALLY HOPE YOU START TO FEEL STRONGER AGAIN SOON (sorry caps lock, but I really meant that, so maybe appropriate to rise my voice slightly)

 

[maryb]

Thanks @justy I appreciate your positive thoughts. I'm not on anything at present, too ill to contemplate taking stuff. Struggling just to get through each day really. Hope the herbalist comes up with something, inflammation is a biggie so if you can get that down I'm sure you will feel better, oh I lied I took some high dose ginger this morning, it has worked for me in the past, maybe this time too, fingers crossed.

I actually thought about going to A & E with the pain in my head on Sunday night and then thought, nah, what will they give me Tramadol or the like, so I just suffered on, as we do.

 

[Revel]

@maryb, sorry to hear your plans have been derailed because you're feeling so poorly.

You were probably right to avoid NHS A&E. My GP sent me to A&E earlier this year when my migraine had continued unabated for more than a week. He phoned ahead to arrange an immediate CT scan. I waited for several hours under those awful fluorescent lights before I was seen by a doctor, who refused the scan. I was then led out into a little-used corridor and told to stay put . . .and there I sat.

I was found 5 hours later, slumped across two chairs. As I was so dehydrated, they had to admit me (which I had been trying to avoid). I did eventually get the CT scan, but the head pressure had begun to disperse at this stage, so the image that my GP had hoped to capture was lost.

Oh, and did you know that regular headaches/migraines aren't associated with ME or POTS? And POTS "is to do with the heart" and couldn't possibly cause symptoms elsewhere in the body? The A&E doctor re-educated me!

I do hope you feel well enough soon, @maryb, to try again. We are the kings and queens of perseverance!

 

[maryb]

@Revel
the nightmare of hospital experiences go on and on don't they. It just seems as if they are all of the same mind, we want to be ill..........it makes me want to swear it really does.
I've had a few situations like you describe, I was the one with the towel over my head as I couldn't stand the awful overhead lights, oh and I was the one who kept getting out of bed to close the curtains because of the same thing, the nurses kept marching up the ward and throwing them back. Non compliant patient, I can laugh now. I refused to get out of bed and sit in a chair for the doctors ward round. All this head pressure is terrible, I had an MRI scan and despite being in agony at the time of it the neurologist just said nothing showed.