I consider myself back to normal

[*GG*]

This is more like where I am at, so 4 miles sounds pretty good to me.

I had a crash in Fall 2009, fell into a depression. Had to push myself to walk 1/2 mile to beach. But did it, took it easy for a year. Didn't ride my bike the next summer. But did get back to exercising and dealing with the exacerbated symptoms.

Have Fibromyalgia as well. So would do PT for the pain, and over 3 years ago, joined the gym to try to strengthen those weak muscles i had. Joining the gym for a year was cheaper than PT for a month.

Slowly increased things at the gym with weights, gotten stronger over these years. Feel good about that for a guy in his 40s. Do cardio at the gym when there is not an activity I can do due to weather or time of day.

GG

 

[jess100]

Not sure if it will actually help, and if it did, would it be a short term fix like so many of us get. The other reason would be if I have to get it at Dr Kaufman's office it would be too much physically for me to fly there regularly. I'm worse now than I was 11 months ago when I went to see him. If I can get it at my local hospital I might entertain the idea.

You are worse than you were when you saw Kaufman? Do you know what's causing that?

 

[jess100]

great to hear you found that magic combo which worked for you (though with being sick only a few years it is quite possible that a remission would of happened anyway, Dr Cheney talks about remission in ME and many of us including myself have had that experience).



I think members jumped on that but would have to rest after 4 mile thing you saying as being normal .....as though a healthy person may not choose to be walking that far, most healthy normal people easily could do if they had to without being wiped out and needing to rest after. I remember we did further then that, a hike up and down hills, without a break in junior high school and we didnt rest after, or a day big shopping trip around the city I'd do more then that and then go home and do all the normal household things . Of cause if someone is aging or if obese, one would then expect the person to maybe need rest after that far and it would be normal in that situation to need to rest.

I think you're right about this. They choose not to , but would not be wiped out by it. I should also add that there is likely some lack of conditioning from being so inactive for years. For sure I have to build some endurance.....It's only been about 6 months.

retired and after 60 needing to rest after that distance, probably wouldnt be uncommon so it sounds like you are doing well and possibly back to normal . (we've heard many say they are fully recovered but often they havent and just have dropped expectations of what is normal and what isnt as most like to believe they are fully recovered.. hence another reason why all the questions you got over this and that walk).

I agree that I have dropped expectations about what is normal..... I used to be very active. I guess I'm also grateful for just being able to function.

I hope you manage to stay well as many of us who have had remissions have got sick again (I caught a common virus going around and that gave me ME/CFS back). You'll always need to take care esp if you are ever sick when you may be more vulnerable of getting this all back.

Thanks for that warning -I will need to keep that in my mind.

best wishes
tania

thank you for sharing. I dont think I've heard of many retirees recovering. It usually seems to be the younger ones which recover more often.

I think I recovered because I never actually had CFS/ME. My belief is that I had viruses and tick-borne illnesses which (if I understand all this) are a clear, diagnosable illnesses as opposed to CFS/ME which is such a mystery. If I have misunderstood this I'm sure someone will correct me.

 

[jess100]

I was quite a big walker when well, I probably walked 50 miles every single week of the year, so my longer walks of 9 to 12 miles walks were like a walk in the park.
I was down to less than 1/2 a mile 8 years ago.

I'm in my fifties now, and agree that very few people walk that far, for me my walking ability isn't a particularly good indicator of my health when compared to an average fifty something man.

I can cover an accurate 4 miles in under an hour, but I'm only able to walk that far in the winter when it's colder. I still need to rest for a large part of the day and have at least 11 hours sleep every night.

That is an excellent pace. The 4 miles takes us about 1.5 hours if we are focused. Do you consider yourself sick with CFS/ME ?

 

[purrsian]

I think I recovered because I never actually had CFS/ME. My belief is that I had viruses and tick-borne illnesses which (if I understand all this) are a clear, diagnosable illnesses as opposed to CFS/ME which is such a mystery. If I have misunderstood this I'm sure someone will correct me.

I think this is the difficult thing about all these illnesses - many of us are diagnosed with CFS/ME because they can't figure out what's wrong, but I think there are a number of different diseases involved that just produce similar symptoms. It makes it hard for accurate and relevant results in scientific studies. With so many possible causes of our illnesses, it's wonderfully that you've found something to help you, hopefully permanently! Over the next few years, keep in mind that you may not be quite 100% yet (although I'm sure you feel 200% compared to how you were!), so you don't push yourself too hard and cause a relapse.

I've come to the conclusion that if ever I improve, that I will think about myself as someone with a disease like diabetes. You can manage it with lifestyle changes and/or drugs and you can become completely asymptomatic, but you've always got diabetes. I say this not in a depressive "oh I'll always be sick" way, but in an attempt to prevent being blindsided should I worsen again, and to help encourage myself to maintain the lifestyle/drug treatments that helped me to become asymptomatic. Anyway, it may be something to think about for the next few months to years, while you're body may still be fragile from the damage of the viruses.

And congrats on your current state of health!

 

[5150]

HI everyone,
I want to give an update because I'm well. It would be really great if I wasn't attacked for saying that I'm well.
______________________________________________
Very pleased that you have made some sort of "recovery", and are feeling well. I hope it continues to stay like that, and that you will get even Better !

 

[taniaaust1]

I think I recovered because I never actually had CFS/ME. My belief is that I had viruses and tick-borne illnesses which (if I understand all this) are a clear, diagnosable illnesses as opposed to CFS/ME which is such a mystery. If I have misunderstood this I'm sure someone will correct me.

maybe it would be a good idea to get the heading changed to something like "wrongly diagnosed but now recovered" as everyone who reads this will think you had actual ME/cfs but you dont believe you did.

thanks for the clarification

 

[Artstu]

That is an excellent pace. The 4 miles takes us about 1.5 hours if we are focused. Do you consider yourself sick with CFS/ME ?

I have all the symptoms required for a diagnosis, so yes I believe that is my illness. I know two other sufferers who manage similar amounts of physical exercise to me.

 

[Keela Too]

I've come to the conclusion that if ever I improve, that I will think about myself as someone with a disease like diabetes. You can manage it with lifestyle changes and/or drugs and you can become completely asymptomatic, but you've always got diabetes.

Yes!

I am currently doing a lot better than last year - however I won't use the word "recovered" because I am still of quite a delicate disposition, and in no way anywhere near my former healthy self. I'm enjoying the freedoms my current state allows me, but am realistic about needing to look after the gains I have been given. xx

 

[Daffodil]

@jess100 congratulations!

i dont think your story sounds unplausible at all ...Dr. DeMeirleir also finds Lyme/cofinections in a mjority of his patients and addresses all the other stuff you mentioned too (viral, gut, etc.). I have been seeing him for a long while now and have gone from bedridden to 40% better (but still far from being able to work, sadly). However, I was sick 20 years before I began to see him. You were sick for only 3....so all of this makes sense to me!

Did you have any neurological / cognitive issues that resolved as well?

I would consider 4 miles pretty good, depending on fitness level.

The key is that you were treated early on, I think.

I had no idea Dr. Kaufman was so good. Good to know.

Dr. Lerner I think took Valtex his whole life to stay welll. I think Famcyclovir would be a pretty safe drug to take ...just drink lots of water
xo
Daffodil

 

[Skippa]

I think I recovered because I never actually had CFS/ME. My belief is that I had viruses and tick-borne illnesses which (if I understand all this) are a clear, diagnosable illnesses as opposed to CFS/ME which is such a mystery. If I have misunderstood this I'm sure someone will correct me.

Congrats!

I think the attacking happens when someone posts I had ME/CFS without a doubt and by exercising, juicing, praying, eating healthy, sleeping properly, clicking my heals 3 times I not only recovered but I'm better than before... and you all should get off your ass and do that too! Think positive people!

Thanks for sharing your story and good luck to you!

 

[Tammy]

I think I recovered because I never actually had CFS/ME. My belief is that I had viruses and tick-borne illnesses which (if I understand all this) are a clear, diagnosable illnesses as opposed to CFS/ME which is such a mystery

Don't sell yourself short! Many people (I am one of them) think that Viruses are the root cause of CFS.

I am so happy for you............thanks for sharing!

 

[Chieftain]

All that to say that around Feb 2016 I was able to stay awake all day, and was able to walk around Mexico without having to go back to bed, but some days I didn't do very much. By April I was walking a lot more. Now I'm able to walk a few miles (around 4) and although I need to rest after that, I'm not wiped out or dizzy and feeling drugged like I was.

First of all, congrats. I'm feeling much better too nowadays and it's nice to know that I'm not the only one! Talk about reverse sympathy haha

You mentioned you were able to walk around Mexico and do a lot. What part of Mexico were you in, and where do you currently live?

 

[valentinelynx]

The other reason would be if I have to get it at Dr Kaufman's office it would be too much physically for me to fly there regularly.

Dr Kaufman does phone consultations after you see him initially. I have to fly to see him, too. I've seen him 3 times since I started seeing him a year ago and the first 2 were within 2 weeks. If he doesn't need to see you (can do the work remotely by phone) he seems to be happy to not put you through the trouble of travel.

 

[Apple]

Congratulations @jess100 I'm really happy for you

 

[Jenny TipsforME]

Congratulations @jess100! I can only walk a few metres so I'm sufficiently impressed by the 4 miles!

My belief is that I had viruses and tick-borne illnesses

So you think you still had the active initial infection which was treated and now you're back to your normal?

Most ME starts with a measurable virus (or other trigger) but that is generally considered the trigger rather than the illness itself. I had clear glandular fever/mono/EBV with a blood test evidencing it was active, later when going through the ME diagnostic process they said they could see I'd had it previously but it wasn't currently active. Of course the NHS testing is poor, so I could have infections they haven't tested for too.

The recent metabolic/microbiome studies seem to indicate that the initial trigger switches the body into a different normal homeostasis (perhaps originally this is wise as a protective action?) and this is ME - not the infection itself.

If treating the infections themselves cleared up your symptoms, I suspect you're right that it was a misdiagnosis that you had. There will be many people like you unfortunately, probably with treatable infections. So frustrating!