If You Could Do it All Over Again What Would You Would Do Differently?

[Folk]

From Twitter:

Jane Skeates ‏@EJS1958 13h13 hours ago
@CortJohnson @TweetTipsforME If I knew then what I know now, rest more/sooner before permanent damage was done. Too late now!

From Twitter:

Permanent damage? I always shake when I hear that. What is permanent and how to know that?

Chris Willis ‏@_chris_willis 15h15 hours ago
@CortJohnson @TweetTipsforME Find the best doctor first instead of last. He's a slippery sucker.

The problem is: Which one is the best doctor? Dr. De Meirleir promisses the world, but all his patients that I talked to are screwed for more than a year taking massive antibiotics hehe. Yet, people still say he is the best way to go. But hey, there's no denial he has been saying stuff for a long time that are being proved just now, and he focuses on the gut, and I also believe that the problems lies in the gut. (well at least he used to. All his patients now that I talked have been found lyme or coinfections... I don't realy buy that)

I've recently e-mailed OMI with my story and asked them to pass it to Dr. Kaufman if possible to see if it's worth a trip to USA (I'm in Brazil). In less than a week he answered me so kindly. He read it all and said he think yes they can help me and I should go.
So that was the last nail to the cofin. I decided Kaufman is the way to go. Plus I'm interested in Rituximab and I guess that's on of the only places they aply it (or the only one...)

But still how to know who's the best doctor? hehe

 

[Cort]

Kaufman is an interesting dude! He treated HIV/AIDS patients for years and but then needed a real challenge - so he moved to ME/CFS. I think you're in good hands! Good luck and please let us know how it went.

 

[Zapped]

<<Permanent damage? I always shake when I hear that. What is permanent and how to know that?>>

When you've had this DD for x-years and you see others from afar who have
moved on up (in some way) and you're still doing the same old thing - looking for
feel- better-isms.

...And a good doctor, like a good lawyer may be an oxymoron=~&

 

[Cort]

<<Permanent damage? I always shake when I hear that. What is permanent and how to know that?>>

When you've had this DD for x-years and you see others from afar who have
moved on up (in some way) and you're still doing the same old thing - looking for
feel- better-isms.

...And a good doctor, like a good lawyer may be an oxymoron=~&

You know Mike Dessin went from emaciated - concentration camp style - unable to tolerate virtually any stimuli - unable to hardly talk to people - to working out in about 6 months. You would have thought he would have never made it back but he's basically completely healthy now.

 

[Cort]

• Facebook responses
  
  I'd have regular massages, acupuncture, and buy a lot of seafoods and definitely organic meat, as well as vegetables.
  Like · Reply · 4 · 11 hrs
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  Tammie Wohlers Page of course....disability pay isn't enough to live on, let alone try costly treatments that might help, pay for assistance with household chores and errands, other things that wear us out, etc
  Like · Reply · 4 · 22 hrs
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  Elena Leon-Lamarche No. The pain is going to be the same.
  Like · Reply · 1 · 16 hrs
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  Cheryl Gibson It would help me pay for the Ampligen or Rituximab I need. Ampligen is now $60k per year as the company is doing cost recovery from the studies.
  Like · Reply · 1 hr

 

[Cort]

• More Facebook Responses
  
  Darlene Miles Bateman Yes. If I could afford to travel out of state where there is a doctor that believes fibro is real and knows how to treat it, I believe my quality of life would improve.
  Like · Reply · 2 · 23 hrs
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  Carol Esposito Yes it would help because I am on SSD and really stressed out about money. Financial stress does not help me. Also, if I had extra money, I could try more supplements and other alternative txt. And I could hire people to do things I can't do easily lik...See More
  Like · Reply · 2 · 13 hrs
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  Lindy Harris Banks Absolutely! Disability payments don't even allow me to eat healthy foods after paying for accomodation, let alone see good doctors, have tests and treatments that are not free, try supplements or any alternative treatments. I don't have money to do anything social, which adds to the isolation. Financial stress really adds to the illness burden.
  Like · Reply · 2 · 8 hrs
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  Angel Mesagno I've done many alternative therapies that have made me much better. I would do some stem cell treatments if I had more money
  Like · Reply · 2 · 15 hrs
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  Cintia Gonzálvez It would do for sure in my case. Gonna check
  Like · Reply · 1 · 23 hrs
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  Susan Dibben Kennedy And my comment to Marcia (see below) I also live in Florida and I have begged to get into Dr. Klimas trials for years. I do know she has had great success using her drug program. But, I do know of a man who relocated from the mid-west who had the money to stay for a year and be treated. All, went well as he thought when he went back home and his symptoms returned! You cannot get these drugs after the trials are over! So, all that money out the window and he's back to where he was in the beginning! Go figure!!!
  Like · Reply · 1 · 16 hrs
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[Cort]

Yet More Facebook Responses

• Marcia Morrison Yes. I'm relatively fortunate, that I've been able to travel to Florida once a year for the past few years to be seen at Dr Klimas's Neuroimmune Institute at NSU. But if money were no object, as they say, I'd hire help to clean and cook and do errands,...See More
  
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  Anne Cavanaugh I think having more money would help to pay for some assistance when needed. A 5% improvement. Like driving long distances. Or having someone to prepare food for me. Long term security. I think there would be a small improvement in health if I could t...See More
  Like · Reply · 1 · 6 hrs
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[Zapped]

You know Mike Dessin went from emaciated - concentration camp style - unable to tolerate virtually any stimuli - unable to hardly talk to people - to working out in about 6 months. You would have thought he would have never made it back but he's basically completely healthy now.

I'm not aware this kind of progress was even possible! (My otherwise cynicism, above, was bit tongue and cheek.)
I haven't given up the ghost - still chugging OTC's and a few rxs... .

I have been through umpteen doctors over the years who 'wanted to learn about CFS' but had no protocol's... .
After so many empty experiences I went DIY, already having become me the reluctant researcher. I've not seen such an optimistic tale reported anywhere.

Is his story and/or protocol posted somewhere; do you know the W's and How of such progress? Is his doctor a
national name? I believe I would pay (or make a 'contribution') to learn the details... .

 

[Cort]

I'm not aware this kind of progress was even possible! (My otherwise cynicism, above, was bit tongue and cheek.)
I haven't given up the ghost - still chugging OTC's and a few rxs... .

I have been through umpteen doctors over the years who 'wanted to learn about CFS' but had no protocol's... .
After so many empty experiences I went DIY, already having become me the reluctant researcher. I've not seen such an optimistic tale reported anywhere.

Is his story and/or protocol posted somewhere; do you know the W's and How of such progress? Is his doctor a
national name? I believe I would pay (or make a 'contribution') to learn the details... .

Unfortunately his doctor used VERY unusual means. We brought several patients to him and he wasn't able to duplicate Mike's progress. Mike remains one of the most debilitated patients I've ever seen recover. There are some others - they'll be coming up in the recovery stories section.

 

[Strike me lucky]

If i could go back in a time machine i would go back to 2002 when i got chickenpox and i would have a large supply of antivirals/famvir to give to the younger me.

 

[Freda]

I would have had a VO2 max test; start wearing a heart rate monitor; measure heart rate variability when I first started to suspect ME/CFS. I suspect I would have picked it up early at the stage where I just wasn't getting over the flu and for some weird reason I felt bad the day after swimming and walking before I had to quit work.
Start Dr. Nancy Klimas safe exercise program i.e. replace activities given up with lying down ones to retain mucsle tone...
Cut out sugars, gluten, preservatives.
Doctors visits- wear heart rate monitor so Dr. can see the high resting heart rate; take heart rate/blood pressure changes on lying/standing for a couple of weeks and photos of feet showing blood pooling for doctor.

 

[Zapped]

Unfortunately his doctor used VERY unusual means... - they'll be coming up in the recovery stories section.

Hmm, sounds like style of the now retired, ailing Dr. Jay Goldstein, considered radical in
the '90's ('Betrayal by the Brain'), who is only now getting accolades for trying (and succeeding)
to help many PWCs, but to what degree and how long sustained ?

'Hope to see more as you indicated!

 

[justME]

I hope this byte of explanation is clear and related to your request. Cheers.

whoops I didn't get an email or I would've answered sooner, probably have to change a setting somewhere..

thanks for the link and your point of view, I asked because I think one of these fellows entered and left my system leaving quite the metabolic hassle

 

[LondonPots]

1. Emphatically I would not have wasted over £100k trying to create a self-employment life for myself (over and over again, each time relapsing) to provide an income when I couldn't work full time.
2. I wouldn't have persisted in believing it was temporary, thinking I could continue living/spending as I had been; I would have downsized massively both in expenditure and efforts to work/contribute.
3. I think I might have planned better regarding my house - I had to sell it because of mounting debt, and now I doubt I'll ever get on London's RIDICULOUS housing ladder again.
4. I would have removed all the utterly exhausting negative people from my life earlier (I'm a bit of a 'rescuer')
5. I guess I would have gone Paleo/no grains earlier - though I still don't know if that has actually changed anything in me.
6. I would have adopted a low-histamine diet right off.
7. I'd like to say I'd have found a good doctor sooner, but I still haven't found one (in UK), so...

Of course, most of this is a bit meta: if I'd been in a fit state to plan, downsize etc I'd have been doing it. If I did this all again I'd still not be in a fit state to do these splendid things. Perhaps that's what's needed for CFS/ME sufferers - planning & downsizing help.

 

[Zapped]

... I think one of these fellows entered and left my system leaving quite the metabolic hassle

Have you considered longer term self-treatment via herbal/supplements, eg as outlined In Dr.. Stephen Buhner's current books 'Herbal Antiibiotics' or 'Herbal Antivitals?'' (Texts or ebooks on Amazon.)

At my stage I'm willing to try the long shots, even crushed rock soup and pine cones if I can find evidence it works! IAE, He offers more compelling reasoning and even gives buying sources, most of whom seem to know him.)

I began a combination of sorts (Buhner's) a couple of months ago. It's too soon to
give feedback except to say no unpleasant side effects to date (I hope...
except tastes - like they need flushing

 

[justME]

think your brainfog missed the "and left" with regular abx and antivirals so alternative that I can't even mention it here (well maybe one; homeopathic snake venom) so no crushed rocks for me! I will check out the books though, sounds interesting, once I can properly read again

so for you it's lyme?

 

[Tina]

I would do what many have already stated, take this illness more seriously from the beginning. I had my first round of illness in May 2007 and my husband deployed in July 2007 for 18 months. I made the decision to stay in Washington State and care for our 5 and 6 year olds on my own even though my family was in Louisiana. Then I was struck in a life altering way in June of 2008. If I could go back in time I would have moved back to Louisiana where all of my family was so that they could have helped me. Instead of nurturing myself, I just pushed through and continued to do damage to myself.

Although if I could go back in time I would change that decision, I don't beat myself up over it. At every moment I felt I was making the best choice that I could. You don't know what you don't know. I had always been athletic and healthy and of course I assumed I would get better. Wrong. (At least for now. I am still prayerful that some treatments will become available soon!)

 

[San Diego]

I love this topic. It makes me wonder, though, how many of us had the brain function to actually make wise choices early in our disease? In addition to severe brain fog, I had a full dose of denial going on, which wasn't helped by doctors who didn't take me seriously.

In addition, I was completely overwhelmed by what I found online. It took me several years to feel like I have a grasp on available treatments and outcomes. It took nearly as long to shake my denial - denial which certainly didn't help friends and family understand the severity of my condition.

I think there would be a career opening for CFS patient advocates. I would have paid a *lot* of money to have someone knowledgeable direct me to the good docs, and take care of the steps in that process that I was just too sick to do.

YES!!!

Upon diagnosis of many life-altering diseases, patients are assigned an advocate to negotiate the overwhelming trajectory of their disease. Early in any disease process, and especially in disease like ME/CFS/etc which affect brain functioning, few patient can successfully help themselves in the manner necessary.

Imagine if you'd had an advocate who:

1. was up-to-date on treatment options and educated you on such
2. helped you make informed decisions based on facts rather than google
3. acted as a liaison to your insurance company
4. sought out financial assistance
5. helped navigate your disability claim
6. educated your family and caregivers
7. understood and conveyed the seriousness of the disease and it's potential (probable?) outcomes

My brain dysfunction made it nearly impossible for me to make the simplest of decisions, let alone what doctor to hire or what treatments to try. I blew thru way too much money trying ridiculous things and supplements that only padded the pockets of my doctors as I watched my life circle the drain.

My family and I needed an advocate. We still do.

 

[Zapped]

[QUOTE="... so alternative that I can't even mention it here (well maybe one; homeopathic snake venom) so no crushed rocks for me! I will check out the books though, sounds interesting, once I can properly read again...
so for you it's lyme?[/QUOTE]

Please indulge my clarification: Lyme or Slime, or CFS, ME, or SEID...ad nauseum (after all the years of political
jockeying). IAE my symptoms are consistent +/- with most other PWC's. For me, Progressive Systemic Atrophy is what I have experienced (when asked); this is factual.

My point about self treatment using herbals (vitamins, minerals, herbs, et all) is to find the equivalent (or near) effects
from natural elements (compounds) to treat oneself without having to use a $@?&$ doctor! Admittedly, it is experimenting
and takes some work but it is readily accessible (not quantum physics) and based on valid published research, eg similar to the following otherwise obscure (to ME) study:

Quercetin supplementation is effective in improving mitochondrial dysfunctions induced by 3-nitropropionic acid: implications in Huntington's disease.
Biochim Biophys Acta. 2013; 1832(3):421-30 (ISSN: 0006-3002)
Sandhir R; Mehrotra A
Department of Biochemistry, Panjab University, Chandigarh, India. sandhir@pu.ac.in

One extrapolates the good stuff (from the research) and synthesizes how it might apply to ones' own condition(s); assesses the risks and then runs for the roses (all the while trying to avoid the 'snake oils' - which are indeed in the cards).

Since I lean towards a viral mediated ongoing mitochondrial dysfunction I search out trials with correlations appropriate for my symptoms. For example, from the above maybe Quercitin would be a stretch but just may work (and does for some symptoms). Then, search out 10 more studies peripheral to other symptoms, which generates a protocol to use - unproven but with possibilities [versus otherwise not known nor available therapies (or doing more along the lines of what has been reported by others, repeatedly ineffectual; yet it's human nature to think it may work 'in my case.')]

Again, at my stage (statiscally), even if my progression is linear, never mind algebraic or geometric I will be on the other side of the grass by the time any mainstream protocol is nailed down and 'scientifically' approved. And it's
beyond the pale to think medical doctors would (or could) undertake such an approach on an individual basis.

Wait, and die. Try...stretch...and maybe... .

 

[J.A.]

I love this topic. It makes me wonder, though, how many of us had the brain function to actually make wise choices early in our disease? In addition to severe brain fog, I had a full dose of denial going on, which wasn't helped by doctors who didn't take me seriously.

In addition, I was completely overwhelmed by what I found online. It took me several years to feel like I have a grasp on available treatments and outcomes. It took nearly as long to shake my denial - denial which certainly didn't help friends and family understand the severity of my condition.



YES!!!

Upon diagnosis of many life-altering diseases, patients are assigned an advocate to negotiate the overwhelming trajectory of their disease. Early in any disease process, and especially in disease like ME/CFS/etc which affect brain functioning, few patient can successfully help themselves in the manner necessary.

Imagine if you'd had an advocate who:

1. was up-to-date on treatment options and educated you on such
2. helped you make informed decisions based on facts rather than google
3. acted as a liaison to your insurance company
4. sought out financial assistance
5. helped navigate your disability claim
6. educated your family and caregivers
7. understood and conveyed the seriousness of the disease and it's potential (probable?) outcomes

My brain dysfunction made it nearly impossible for me to make the simplest of decisions, let alone what doctor to hire or what treatments to try. I blew thru way too much money trying ridiculous things and supplements that only padded the pockets of my doctors as I watched my life circle the drain.

My family and I needed an advocate. We still do.

Awesome answer! We all need a knowledgeable advocate.