Update: I finished the 7 days doxy, the prednisolone and no change whatsoever. My lungs feel inflamed and here am I at 3 am puffing Ventolin and listening to Belleruth Naparstek..bless her🌷
So tomorrow I am plucking courage and going over to the Chinese Academy to see the Principal so they decided, Professor Ke. He also works in collaboration with Nhs Hospitals in London.
Because between the never ending year of chest infections, the withdrawal symptoms of tapering down to Hydrocortisone from Prednisone I feel I need help while I am here.
So yesterday I wrote to endocrinologist at the Rare disease centre in Lyons and said ok do you have a contact at the pain clinic you recommended.
He sends me the pain clinic’s link. Like deal with it girl.
So I do, I phoned and of course the secretary said for a first consultation we need a full medical letter.
Well it was obvious..
So I wrote back to him and said I was sorry to burden him further but could he ask his medical secretary to forward my lung and endocrinology file to the neurological hospital. And I copied Professeur Cottin from the LAM clinic.
They are all on the same spot!
So the lady had said she wanted my details faxed! I mean who uses fax these days. But we tried 3 times it said their box was full.
So by that time it was lunchtime, 2 hours had gone by, I rushed to the FedEx office and posted it.
And I thought of what we have to do to carry on sometimes, the bureaucracy we have to overcome and then picked up my phone and got an appointment at the Chinese Academy. Acupuncture usually helps. It will cost me of course but I can’t/won’t stay feeling sorry for myself.
Worse was I had also written that I thought I had kidney problems, problems passing water with the adrenal glands insufficiency or was it the tapering down but my ankles were swollen as well, so I thought I have water retention.
He just answered I can assure you it is not the tapering down nor the adrenal glands insufficiency. Not putting you in the right direction! Great help!
All keeping to their little domaine..
Still the pain clinic in Lyons looks very comprehensive, link for our French speakers:
Hi Fran you are certainly getting the run around, hope you get some answers soon. I love the picture can't wait for it snow snow here. Have a lovely day,take care😊love Bernadette xx
How many days did you have? He gave me 100mg for 14 days but told me to only take 7 days. I usually have 200mg a day..
My specialist had told me previously if it doesn’t work get something else but I can’t face going back to the hospital in the midst of that flu epidemic and I’m
ready to try something else..I have had so many antibiotics this year..
What is your problem with Ventolin? Because I think Im getting used to that as well! I have to take 4 puffs instead of 2 puffs so I did and my oxygen sunk even further from 93 to 91! Had a cup of herbal tea, read and fell asleep again sitting up!
Anyway I’ll see what this Chinese doctor has to offer today..
Thanks Annie 😊 No I’m no physician and don’t want to be 😃
I am a patient, I think I know my own body, well I knew, but it is too complex nowadays and I certainly don’t have the medical answers. However I am expecting them to give me the service. 😉
Dear Fran, I understand exactly what you’re going through.....A has little or nothing to do with B so you end up jumping through hoops and going round in circles! Soooo very frustrating! Feeling dizzy yet?
I do hope you feel better soon and the Chinese Academy can help.
Thinking of you. Thanks for the snow photo. Brrrrr.
I hope I have found my answers..well I did trek to the other end of London in Highgate and I found this wise man who asked to look at my tongue and took a picture of it 😃 with his ipad. And what a dry and thirsty tongue I knew I had. He looks at my nails and skin and what dry skin I have. And I told him about my dry eyes.
Anyway I had all that since I have started treatment in the last two years I have never felt as poorly to the point I was more and more breathless, puffy, hardly can walk and now having trouble to go to the loo. As I wrote to the Endocrinologist is there something wrong because I am ready to go to A&E!
I said for a while I thought I had a problem with my kydneys. It was killing me. Thought it was my hip. LAM can affect your kydneys.
However I didn’t know it was the root of the problem in Chinese Medicine I thought it was a consequence of steroids intake.
So one day at a time..
He said something water in your body is too sticky we have to get it flowing again, and steroids are good for pain but they made the problem worse.
Buenas Dias Carino, Thankfully London is being kind with the weather, Imagine running around in the Snow, (Nice Pic) and Very Cold temperatures. I do hope the Chinese Remedy works for you Fran. You have certainly tried all and relaying your Knowledge to us has been most welcome. Keep Happy as always Fran, Hope you are pain Free very Soon. Stop and Breatheeeee. Manana es Otra Dia. Besos Carino. xxx
Jeez Fran, what you're having to endure, all the running around, just to get what should be offered to you in the first place. I know what you are experiencing - not your condition obvs - but the way they parcel us into bits then we are left having to make the connections ourselves. At least the acupuncture people shouldnt do that - you should get a more holistic approach there and I really hope the pain recedes. Take care Fran, love Jean xx (beautiful pic!)
It wasn’t acupuncture after all. I didn’t know what to expect actually. It was a proper Chinese medicine consultation with a week’s treatment. I’m seeing next week again.
Beautiful photo. ⛄Oh Fran I feel for you, you must be fed up. I hope the Chinese remedy works for you. Trying to snow here and its bitterly cold ❄ best wishes 🤗 😍 love Majt xx
• in reply to
Hi Majt, Not too bad in London, sunny at least but you need the extra layers 😉😃
Somehow my happy friend i think acupuncture will work for you in the pain control dept,you are more into alternative type therapy and with an open mind where as i would mentally reject such stuff and am set in my ways and even if it doesn't i do hope they have an on site Chinese restaurant with delicious asian food prepared properly and not like the sticky sweet slop we get from our local takeaway.🇨🇳🐼🐲
Stay warm my happy friend...............Ski's and Scruff's xx
Update: it is a kidney problem
New diet
Stop sugar
1 coffee am
No other caffeine
Less dairy
No fatty food
Olive oil/rapeseed oil ok
More rice
No wheat
No spice
No raw food
2 litres
Tablets with warm water
1/2 h after meal
So Chinese medicines to take, no interaction with conventional medicines.
The meds did upset the body balance. Water in my body got sticky Im all swollen and puffed up.
He will cure me of adrenal glands disease. It will to reduce cysts growth
Hello again, Fran 💕 I think I understand this list better than I thought (see pm) though it pulls you in yet another direction to try to help solve things.
If you’re puffed up and swollen, certainly suggests kidney problem, temporarily at least. I do hope these suggestions work for you. Maybe better than dehydrating water tablets......heck, anything’s better than more pills....diet route much better.
You’re having a right old time seeking solutions. I really do admire your energy. Mine seems to be in short supply since the pre-Christmas codeine backlash. Though it might be psychological stress....there are a few things going on in my head! Just a few! 😂🤣
I await the outcome of this phase of your treatment. Wishing you the very best of luck, dear Fran 💕 Love xx Penny 🧚♀️🍀🌷
PS I had a look at your link to the pain clinic in Lyons....sounds hopefully comprehensive. Another step for you?! xx
Hi. I am exhausted just reading what you have had to do just to get an appointment. I also loved the picture. I used to love walking on fresh snow (would get up early just to do it). Hope it all gets sorted out for you soon.
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Flowers..
Bad News 
Steroid weaning.
