KDM clinic appointment Monday

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duncan

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Justy, if I recall correctly, you also struggle with Lyme and Bartonella. I wonder if they've checked you for Babesia? Just with your respiratory symptoms...

Anyway, will he be doing anything specifically for Lyme & Company? If you've already spoken to this, I apologize. I am just curious what happens when ME/CFS clinicians bump up against Lyme. Just so you know, Enlander is my ME physician, and he wanted to treat me for both.
 
justy

justy

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duncan said:
Justy, if I recall correctly, you also struggle with Lyme and Bartonella. I wonder if they've checked you for Babesia? Just with your respiratory symptoms...

Anyway, will he be doing anything specifically for Lyme & Company? If you've already spoken to this, I apologize. I am just curious what happens when ME/CFS clinicians bump up against Lyme. Just so you know, Enlander is my ME physician, and he wanted to treat me for both.
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Havent been tested for Babs, but I do have Cpn. KDM is big on treating Lyme and co infections. He offers oral abx, iv abx and herbals as well as other treatments. I am starting with ivig as he thinks my immune system is really struggling with all the infections - I also have some autoantibodies so the ivig may help this as well.

I was meant to start with oral abx, but have problems with all 3 I have tried so far...

Glad you are seeing Enlander, he would have been my other choice as he does SKYPE consults and visits London to see patients.
 
justy

justy

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complete fail. Made it as far as checking in at Eurostar terminal - shaking by the time I got out the car then assaulted by the noise, lights, crowds, smells etc. Sat shaking, twitching and crying in my wheelchair in departures and soon realised that I am not well enough to go.

5 hour car journey to get that far and now at my mums in west London for the night and home again tomorrow. Perversely I am jut not well enough to go to Belgium to have treatment... feeling pretty despondent and very worn out tonight. So sad I couldn't make it, but I realise that getting there, doing a whole day at the clinic and then coming all the way home again on Tuesday was too much.

Its not as if KDM was going to give me a magic pill tomorrow to make me all better - itinvolves once a month trips like this and could make me much worse. Scared to lose any more ground. Looking forward to going home tomorrow...
 
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Helen

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Dear Justy,
So sorry to hear about how hard this was for you. I wish it could be possible to get the IVIG somewhere closer to you, or at least I.M. injections with gamma globuline to start with. A big hug
 
maryb

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@justy
what can I say..so sorry to hear that. You know sometimes these things are just beyond us, but no-one can ever accuse us of not trying. Rest up when you get home, tomorrow is another day.
 
Sushi

Sushi

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Also so sorry but glad you stopped the trip in London rather than continuing and feeling worse. Also glad that you were near your Mum's place. But nothing like home when you are ill.

Best wishes and :hug:'s,
Sushi
 
Revel

Revel

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How frustrating for you @justy :(. Hope the journey home tomorrow is more comfortable for you than today's travel experience.
 
U

Undisclosed

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justy said:
complete fail. Made it as far as checking in at Eurostar terminal - shaking by the time I got out the car then assaulted by the noise, lights, crowds, smells etc. Sat shaking, twitching and crying in my wheelchair in departures and soon realised that I am not well enough to go.

5 hour car journey to get that far and now at my mums in west London for the night and home again tomorrow. Perversely I am jut not well enough to go to Belgium to have treatment... feeling pretty despondent and very worn out tonight. So sad I couldn't make it, but I realise that getting there, doing a whole day at the clinic and then coming all the way home again on Tuesday was too much.

Its not as if KDM was going to give me a magic pill tomorrow to make me all better - itinvolves once a month trips like this and could make me much worse. Scared to lose any more ground. Looking forward to going home tomorrow...
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Hi Justy, my heart goes out to you. I understand the assault by noise, lights, crowds, smells etc. My life has been made miserable and at times totally unbearable. I am sorry it didn't work out. Many many many hugs from me. I was hoping so much that you would get there to get treatment. Don't give up. It will happen. :hug::hug::hug:
 
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