@Sundancer and @NotThisGuy . Thank you! I really don't know why I haven't thought about that solution. And thanks sundancer for your offer. That's really nice that you would do that!!! But then there shouldn't be a problem to buy Thorne ourselves.
Now very severe HELP
- Thread starter Martin aka paused||M.E.
- Start date
jesse's mom
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God bless everyone helping Martin.
Martin, I read one of your earlier posts as to your mental health being good in light of our illness.
Sometimes it just takes a long time... just to come back.
This life is a spiral to me, instead of a flat linear line.
It can seem we are stagnant, when the spiral is definitely moving...a tiny, tiny bit,
Martin, I read one of your earlier posts as to your mental health being good in light of our illness.
Sometimes it just takes a long time... just to come back.
This life is a spiral to me, instead of a flat linear line.
It can seem we are stagnant, when the spiral is definitely moving...a tiny, tiny bit,
Don't know where Thorne's would be available from the EU. But https://www.healthmonthly.co.uk/index.php usually has the widest range of US supplements. Only problem is they use local postal service, which sometimes needs patience. Other good resources is http://swansoneurope.com/ and https://www.lifeextensioneurope.com/. The later is quite expensive if not used during one of the frequent special sales. For bulk powders I use https://www.bulkpowders.de/ or http://myprotein.de/. Not much other choices for a Europeans otherwise, maybe http://www.supersmart.com/ (mostly very expensive but very large range) and https://www.naturesbest.co.uk/.
From Austria we are allowed to order from the states. However, it is very unpredictable what gets confiscated and fined due to be accused of illegal medicine imports. Customs just seems to google if there is an ingredient found also in a prescription med. I had that problem already with TMG, ALA, silimarin and nattokinase. So that can be very unpredictable route..
From Austria we are allowed to order from the states. However, it is very unpredictable what gets confiscated and fined due to be accused of illegal medicine imports. Customs just seems to google if there is an ingredient found also in a prescription med. I had that problem already with TMG, ALA, silimarin and nattokinase. So that can be very unpredictable route..
I feel so awful to hear that Marin hasn't improved. I know precisely how he feels right now. Makes me want to weep. He's not alone though... at least he is not alone.
I fluctuated around the state he is currently in for 18 months before i started on LDN. That was Summer 2016. It really helped sooth my neurological sensitivity. I haven't really ever managed to get out of bed, but I can do a remarkable amount of mental activity, including a full day's work on the computer. I am learning software development and recently started a business.
Actually just in the past few weeks I have started to feel better independently of the LDN, and I have been standing up a bit and even taking some tentative steps after being bedridden almost continuously since late 2014. I think it may be due to the Perrin Technique, whose explanation as to the cause of ME fits my atypical condition like a glove.
I don't know if LDN will help Martin. I really, really hope it does. What I do know is that my condition was and is incredibly stubborn, but there is always hope of a way forward.
I fluctuated around the state he is currently in for 18 months before i started on LDN. That was Summer 2016. It really helped sooth my neurological sensitivity. I haven't really ever managed to get out of bed, but I can do a remarkable amount of mental activity, including a full day's work on the computer. I am learning software development and recently started a business.
Actually just in the past few weeks I have started to feel better independently of the LDN, and I have been standing up a bit and even taking some tentative steps after being bedridden almost continuously since late 2014. I think it may be due to the Perrin Technique, whose explanation as to the cause of ME fits my atypical condition like a glove.
I don't know if LDN will help Martin. I really, really hope it does. What I do know is that my condition was and is incredibly stubborn, but there is always hope of a way forward.
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Countrygirl
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@Cheesus I think it sounds as if you have the makings of a new thread below as I am sure people would be interested in your comment that I have bolded.
Congratulations on your business venture by the way. I hope it will succeed................I think you will ensure that it does.
[QUOTE="Cheesus, post: 975661, member: 10670"
Actually just in the past few weeks I have started to feel better independently of the LDN, and I have been standing up a bit and even taking some tentative steps after being bedridden almost continuously since late 2014. I think it may be due to the Perrin Technique, whose explanation as to the cause of ME fits my atypical condition like a glove.
[/QUOTE]
Congratulations on your business venture by the way. I hope it will succeed................I think you will ensure that it does.
[QUOTE="Cheesus, post: 975661, member: 10670"
Actually just in the past few weeks I have started to feel better independently of the LDN, and I have been standing up a bit and even taking some tentative steps after being bedridden almost continuously since late 2014. I think it may be due to the Perrin Technique, whose explanation as to the cause of ME fits my atypical condition like a glove.
[/QUOTE]
@Countrygirl I will make an update if substantive change materialises. Everything now is a bit tentative and might disappear.
Countrygirl
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Gondwanaland
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ebay.de has some thorne supps, idk if the prices are reasonable though
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Have you done a saliva test to check for Adrenal Fatigue? Im no where nearas bad as you but ive just crashed pretty bad and fear im headed down the same path.
jesse's mom
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Been crashing myself. Shouldn't be up and online right now.
I just have Martin gently on my mind.
This illness is no fun and then sometimes it gets worse.
Martin is a special man and it strikes me; The beauty of people caring from him.
in so many different ways...
My mother, who's in her '70's made me a casserole today, so thankful.
I just have Martin gently on my mind.
This illness is no fun and then sometimes it gets worse.
Martin is a special man and it strikes me; The beauty of people caring from him.
in so many different ways...
My mother, who's in her '70's made me a casserole today, so thankful.
Only a saliva test for the daily cortisol. Another headword for the list that has to been discussed with his doc.
Try to avoid to think about such a path. Somebody in this forum also told us that rest doesn't only come from outside but also from inside. I think that is really important although it is hard to implement. I wish the best that things will improve the next days.
Basically, nothing essential has improved for Martin. With the help of beta-blockers his POTS could be improved. In addition, his day-night rhythm has normalized in recent days.
Prof. Scheibenbogen answered. She suggested 1L saline (implemented, was not positive on the first day), cortisone (apparently she found the cortisol level more problematic than the lab / family doctor and it increases blood volume), azithromycin 500 mg 3x / week for 6 weeks as mild anti-inflammatory therapy (I have not heard of it before) and lactobacilli, carnitine 3 g daily and ribose 10-15 g daily
Hope it shows an uptrend.
Prof. Scheibenbogen has written that there are studies on azithromycin, carnitine and ribose. Does anyone know the studies?
Martin asks, what do you think of these therapies?
Thank you all, also in the name of Martin!
Michael
Prof. Scheibenbogen answered. She suggested 1L saline (implemented, was not positive on the first day), cortisone (apparently she found the cortisol level more problematic than the lab / family doctor and it increases blood volume), azithromycin 500 mg 3x / week for 6 weeks as mild anti-inflammatory therapy (I have not heard of it before) and lactobacilli, carnitine 3 g daily and ribose 10-15 g daily
Hope it shows an uptrend.
Prof. Scheibenbogen has written that there are studies on azithromycin, carnitine and ribose. Does anyone know the studies?
Martin asks, what do you think of these therapies?
Thank you all, also in the name of Martin!
Michael
MEPatient345
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Martin and Michael,
Antibiotics can lower inflammation and some people might improve, but they also can be difficult to take, and make symptoms worse for others. How did he do on them? I don’t know about the trial she mentioned.
Has he improved at all? I tried d ribose, probiotics and multiple supplements when I was that sick.. nothing helped me. Time helps and I believe it helps to try and move the body as much as is tolerable, sit up when possible, stretch legs and lower back. The only medications that help my symptoms are ativan for sleep, and codeine for headaches and also calming nervous system, sometimes making me feel better.
I wish I could offer more advice, but there is no good solution..
Mary
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Here are some studies re azithromycin, carnitine and d-ribose:
https://www.hindawi.com/journals/mi/2012/636157/
http://me-pedia.org/wiki/L-carnitine
http://www.meassociation.org.uk/201...s-and-fibromyalgia-with-d-ribose-4-july-2012/
I don't have any experience with azithromycin for anti-inflammatory purposes, but both carnitine and d-ribose have improved my functioning and I believe both are really worth trying. For the l-carnitine I took 2000 mg a day on an empty stomach and after a week or 10 days I noticed my energy improving. For d-ribose, I take 10 - 15 grams a day, and I initially noticed an improvement in energy I think within 2 or 3 days, it happened quite quickly.
There is no improvement at all regarding Martins condition After 4 weeks we stopped azithromycin, carnitine and d-ribose. Nothing has changed in the last weeks. The communication is on a minimum (Martin has a button to press which is linked to a bell and then he only writes down a letter or a short word to let his parents know what do to). Tomorrow we start the second try with LDN but now starting with 0,1 mg. 1 mg was far too much for him. I think the fact that he is totally bedbound makes him more sensitive for meds.
His testresults are on the way to other clinics. One clinic is for special illnesses. Hopefully somebody there has another idea what to do.
After 4 weeks we stopped azithromycin, carnitine and d-ribose. Nothing has changed in the last weeks. The communication is on a minimum (Martin has a button to press which is linked to a bell and then he only writes down a letter or a short word to let his parents know what do to). Tomorrow we start the second try with LDN but now starting with 0,1 mg. 1 mg was far too much for him. I think the fact that he is totally bedbound makes him more sensitive for meds.His testresults are on the way to other clinics. One clinic is for special illnesses. Hopefully somebody there has another idea what to do.
Lisa108
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Do you mean the ZusE in Marburg? I remember reading an article about it which did sound very good (although the waiting list for this center was said to be immensely long).
The head of the center was compared to Dr. House... (but a nice one).
As for the communication: I did work as a physiotherapist with disabled children. Some of them were not able to speak. So they were provided with a 'talker' (voice output device). It looks like a tablet with buttons on it. On every button is a symbol, if you press the button a voice says the word (or whole sentences).
If Martin is too sound sensitive, then maybe a 'communication folder' (or a chart with symbols illustrating his 'most wanted' items and activities) that Martin just has to point at would help? It's easy to 'DIY', because the internet is full of pictures, symbols, illustrations...
I so much hope that he will find help soon! Best wishes!
@Lisa108 yes, I was talking about Marburg. We hope that some contacts can speed up the process.
Thanks for the idea with the communication folder, but Martin is also very light sensitive. I am not really sure if it's the best to rest totally and do nothing (as @Silencio pointed out that he should move as much as he tolerates), but he even doesn't want to change the angle of the mattress and preferes to be horizontal all the time. So it's the easiest way for him just to write down a letter.
Thanks for the idea with the communication folder, but Martin is also very light sensitive. I am not really sure if it's the best to rest totally and do nothing (as @Silencio pointed out that he should move as much as he tolerates), but he even doesn't want to change the angle of the mattress and preferes to be horizontal all the time. So it's the easiest way for him just to write down a letter.
MEPatient345
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Oh my god, poor Martin. I can imagine how scared that he and you all must feel right now. I’m glad he has you and his parents there for him.
If he needs to be totally horizontal then he obv cannot tolerate moving or being upright at all right now.
I’m so sorry for all you and he are going through.. sending hugs and my best wishes that he gets some answers from this new clinic.
If he needs to be totally horizontal then he obv cannot tolerate moving or being upright at all right now.
I’m so sorry for all you and he are going through.. sending hugs and my best wishes that he gets some answers from this new clinic.
MEPatient345
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Just to add: LDN is very potent, I had side effects at .1 to .25mg (chest pain, more fatigue, depressed feeling). I tried a one day on, one day off, schedule, instead of every day. But, after 5 months it had don’t nothing but make me sicker. If I were you, I wouldn’t “push though” on LDN for too long as so many people on forums encourage. If it makes him worse at the lower dose or alternate day schedule, just stop. I don’t think either that LDN has been effective in many very severe patients, from what I’ve read.