CFS symptoms

Hi David,

I am day 6 of being great.

My TCM is off to China for 4 weeks. Good in a way as it help me discover what has helped me, the triple vitamin treatment, or the TCM gear/acupuncture etc.

Worked in the garden etc after being lifeless for weeks.Even managed beers during football.

It one long learning process this.

Good luck and lets help each other!

 

Hey greg, great news. Yes let's help each other figure this thing out.

I'm back today for my TCM. Still feel like an idiot for blowing more energy than i should have Wednsday. But as i said my 'bad day' i am noticing as nowhere near as bad. So i have to really take encouragement from that. Not back doing triathlons, lol, but a step in the right direction. My end goal is to get back to where i was pre sickness. Nothing less.

Hi David,

Never had this, but a myraid of other symptoms.

I think it brings different secondary sypmtons from person to person.

 

Yep, I'm having problems with eyes. Don't know whether or not this is CFS related. I'm having swelling in my retina, and my eyes are watery. I'm wondering if the CFS has affected my optic nerve. 

Thanks Greg.

Hey Jackie interesting you mention the optic nerve. When i saw an optician a few months ago as i was concerned about my eyes back then he took a special photograph on my eye and it showd a very large optic nerve. He was like 'woaw' when he viewed the picture.

But he didn't think anything to worry about, but i think it is another clue.

Hey Greg, you might want to check out an older BBC documentary on youtube 'the science of acupuncture' IT WORKS=FACT ! Seems especially well suited to people with ME.

hi david,

how are you going now,

i had a great spell of 7 days, total energy. It dissapeared on sunday, wrecked since.

May be coincidental with my TCM going back to china, havent had a session since tuesday last week.

Seen immunologist on monday, prescribed amitryptiline.

Wont start it until TCM comes back and will re-evaluate then again.

What a head melter.

forgot to mention, CFS screen from Genova will be due back next week.

Also, going to order the drmyhill one.

Throwing everything at this.

Hi Greg, well i just had my 10th session of acupuncture, can't say i am close to be cured, improved yes but only slightly. Spent a total of £500 on the TCM this month. I've decided to do one more month, so expecting BIG improvements, if not then i cannot continue as the cost/benefit is just not worth it. Another TCM doctor i saw said the same thing, that my organs have aged. I do feel old so maybe they are right. I'll need to look up amitryptiline. What is your immune system status, mine from the get go have consistently shown low end WBC neutrophils 1.7 and total WBC 3.6-4. I know this is not always the case with every CFS sufferer. Everything else is normal. So stay in touch mate for sure. Had a so so day, feeling deflated in some ways that the TCM has not proven to be as good as i hoped. I slithered upt oTesco to get some shopping and put a bet on for the footy, but i do feel pretty crap. Still waddling about thinking how the hell did i used to be a 1.15 half mrathoner and decent triathlete. Feeling like a dead battery. I've got over £200 of the very best supplements coming soon, if there is a breakthrough with anything i will surely scream about it.

Let me know how the immunologist appointment goes. I'll likely be referred to immunology after i finish with the haemotologists next month. I sent away a private enterovirus screen which looks to see if i had been exposed to some viruses like cocksackie A+B. Not a cure but a co-ordinate, i do believe there is this one label for CFS but not everyone has came into it the same way and not everyone will have the same way out. At the moment i am just looking for something to give me a boost. I am truly shocked in many ways that despite my naturopathic training i have yet found something that works. Although i have the heavy duty stuff arriving shortly and have not exhausted my 'arsenal.' But it's taking me much further than i thought possible. This is a terrible affliction.

Hi david,

Be prepared for set backs and false dawns. I've had loads of them. Last week I was playing golf and everything. This week can hardly walk to the end of the street, I can go from one end of the scale to the other and cant get the trigger.

My WBC is 5.1 and Neutroplis is 3.5, yours is low @1.7, did your GP not give you something to get it higher, or maybe there is no meds for that.

Whats your email address, I' send you the randox report I have, and if you might want to do one in future, its costs £1000 but it does EVERTHING in your bloodwork.

Hi David,

It was Monday past (23rd) in belfast, had to do it private for £80, NHS wait list 18 months.

Had a 1/2 hour appointment with him, really interesting. He went straight to the idea of the amiltripline to sort it. He has around 35 people with CFS currently, the amil cures >50% of them he reckons. The other half he "suggested" are of the phycological condition, that maybe think they have CFS, the cry for help type.

Now, if your like me the thought of a anti-depresssant use is startling considering excellent mental health. He said its used in such low doses its really for deep and meaningful rest, you wont even feel it.

I'm holding off on the amiltrip until I get the CFS screen results from Genova, god sakes I've battled it for 7 months now another few weeks not really matter.

I think CFS is certainly not one infection or disease, just an umbrella term ,me and you might be suffering from different things that both end up in fatigue.

Immunologist officially diagnosed me with CFS, although its a diagnosis i sorta reluctant to accept as I do get good periods, so i just need to get the good days unlocked permanently. It is a nightmare.

Greg: Low-dose antidepressants are given to regulate the immune system in CFS/ME. They're not for depression at low doses. But they don't work for everyone. Not because of psychological issues, as your doctor suggested. But because everyone is different and different meds/supplements work for different people. That's one of the confounding aspects of this disease. And for all of you guys who've had CFS/ME for a few months--there's every chance you'll recover, even without treatment. That isn't to say you shouldn't pursue treatment. Just that if your treatment isn't working, take heart. You may still get better.

Thanks for that Greg. It's a nightmare allright. Looks like today i'll be housebound. Body from the neck down feels completely lifeless. I'm greatfult to be able to walk about the house. Yeah aint it amazing how fast you can get things done when you have money to throw around. I'm not against drug use in our situations. I would use it as a last resort, i'm trying a few other things at the moment. Interesting amil cures 50%. You know i have often thought how much of this is in my head, but today for instance, fck me, this aint in my head. I'm sure i have anxiety and some depression but this is normal given my circumstances at 34 !!!! Keep me posted with regards to your Genova test. I'll let you know how all mine go. I have the kit ready to go myself. I feel my body needs a boost, perhaps immune system needs a jumpstart, definetely feels like that so drugs could definetely play a part. I wake up every morning thinking right am i better ? and then i move around and think Jesus, NO. My only trigger for a bad day is if i do too much, i notice my body cannot handle alot of stress, emotionally it is very poor, physically slightly better as if i really summon the will i can run/walk for one hour and feel better mentally after but during i know i am unwell. I suffer more if i have to be around people that didn't know me, and think i am ok, then i have to explain but i just can't be bothered any more. I am curious, have you or anyone else that is reading tried getting drunk ? I've not and don't advocate doing so but i am also curious as to how different alcohol effects us versus when we were normal ? Anyway... the saga continues.

Oh Jackie, 6 months into this for me and i loved reading your post.

THANKS !! I know this is true and to cultivate patience. I know one guy locally in the running club, one of the coaches, super fit runner 32m 10k etc and he got M.E and it took his just over one year, but he did recover fully and is back runnning to his best again. So i have to remember these things. There is also another lady i used to see at the swimming pool, she also recovered, it took her 2 years. i miss the body i used to be in.

Hi jackie

Where did you get that intel about the anti depressant having impact on immune system.

Anything I read suggested its supposed to support sleep function.

I agree everyone is different and its really trial and error.

David: No, it is NOT in your head. Of course, you knew that. As for depression and anxiety, I've heard from scores of people with both. My specialist feels there could be a lot of primary emotional issues because of what this illness does to the brain. Then of course there's secondary emotional issues resulting from having to deal with this. There is no shame in feeling anxious or depressed. We have so much s**t to deal with, it would be a miracle to have no emotional reaction. As far as alcohol--way way not recommended, according to my research and doctors I've talked to. No on caffeine (including coffee and chocolate, for instance), sugar, or alcohol. Lots of protein recommended. During my first months with CFS/ME, eating protein was critical.

Greg: I got the intel from the specialist at UCLA who diagnosed me and gave me the doxepin. Remember, I took it in a very low dose (37 1/2 mg). Only at a much higher dose is it used as an antidepressant. My doctor did mention that an added benefit (in addition to modulating the immune system) was that it helped sleep. So I took it before going to bed.

Thanks, extra bad this morning ! Fck me ! I feel like this old man at 105 who's got hours to live. My heart feels so weak.

Hey, David:  Hang in there. You can use your marathon training to good effect with CFS/ME. When you're running a marathon, don't you have to pace yourself to have energy left at the end? And do you maybe avoid big energy spurts at the beginning so you won't run out of steam later on? So this illness is like running a marathon. I think you've even said so yourself in an earlier post. I think it's great the way you're exploring all kinds of stuff. OK, so deer placenta may not be my thing, but it's good to think out of the box.

Thanks Jackie, very positive as usual, we all need more positivity in our lives. I see this illness exactly like running a marathon. I managed a 40 minute run walk this morning, i do this most Sundays nearby on the local country part trails, the air is so fresh and clean, there is trees and streams. It's a good place to be. I know people emphasise rest, and yes it is important but complete rest all the time week in week out cannot be good for you. I did potentially feel stronger this morning than previous and last night was the first night since i became ill i managed to sleep for 8 hours straight. My heart is still weak and my eyes feel fatigued. I'm becoming convined in my case the TCM theory of life essence depletion is accurate. I have this deer placenta to try and some other formulas. Hoepfully the next week or two i will truly think YES i am recovering. Whatever it takes, i'm going to get there, be back triathlon training stronger and WISER than ever !!!!!!