EECP Treatment is Very Helpful/My Daughter Helped Alot

[janeeleanor]

Just a quick post to let you know about a treatment that I have been trying for the past five months.
It is called EECP and is most commonly used with patients who have had a heart attack or are suffering from angina, but it has been found quite recently to be effective for those of us with cfids.

What to expect:

The treatment is non-invasive. You lie on a bed and have what looks like large blood pressure cuffs attached to your legs and across your hips. The machine then inflates these cuffs at regular intervals when your heart is at rest (between beats), this is the time your heart usually gets its oxygen supply and the machine has a number of sensors to check your heart rate and oxygenation levels. Most sessions last for an hour or 45 minutes and can be done once a week for cfids. The whole process feels a little strange at first but after a few sessions you get used to it. I actually fall into a light sleep during my sessions!

Effectiveness:

As I said, I have been doing this treatment for 5 months and I have to admit to being extremely skeptical at first. I have been through so many treatments, years of IVs, antibiotics, anti-virals etc etc with limited effect.
After about a month on the EECP, I began to notice improved sleep and increased daytime energy levels. I dismissed it as a fluke at first but the effects continued and, as I had started no other new treatments in the same time period, I eventually realized that the EECP was responsible for the improvement in my condition.
This assumption was proven when I took a three week EECP break during the summer. By the beginning of the third week many of the old familiar cfids symptoms were beginning to return in full force: increased fatigue after exercise, general lack of energy and sluggishness, brain fog etc. After re-starting the EECP machine these symptoms eventually subsided.

Where to get treatment:

EECP is quite a new technology and isn't widely available across the country, although it is worth checking with all of your local cfids specialists.

I get my EECP treatments at the office of Dr Enlander in NYC.

Recommendation:

I personally recommend trying out EECP therapy to see if it works for you. Obviously you have to consult with your doctor first and make sure that you don't have any conditions that would preclude you from using the machine, but it is a therapy I would strongly recommend fellow cfids sufferers to try. As I said, it's available for those of you in commutable distance of the NYC area at Dr Enlander's office and may be available in other parts of the country also.

Other treatments:

Here's a quick rundown of my other main treatments:

-- Methylation protocol (Dr Enlander)
-- Candida protocol
-- AHCC Gold immune supplement-- this is another treatment I strongly recommend, especially for those of you who have low NK cell function. It has been a lifesaver for me. I don't see any doctors out there recommending it but I have seen through blood testing that it has increased my NK cell count by 50%. I should probably write another post on this alone, it is that effective!

Disclaimer:

I have no financial interest in the EECP treatment protocol, Dr Enlander's practice or in the supplement AHCC Gold.

I hope you find this information helpful and pass it along to other cfids sufferers -- we need all the help we can get!

Best to all of you,

Jane

 

[caledonia]

Can you tell us your percent of improvement based on Bell's disability scale?

 

[ukxmrv]

Hi Jane,

I'm glad you brought this up as I didn't know it was offered as a treatment anywhere medical with a real name.

In the late 80's and early 90's I could get something vaugely like this as a "beauty" treatment at clinics in the UK. They offered it as "spaceboots" and I found it very helpful. The "boots" were used with me being horizontal in some places and vertical in others. They only went up my legs to my hips. Some went only to the top of the legs. They filled with air and compressed the legs and hips.

A few years ago I was lucky enough to buy a version from a catalogue. It really helps with circulation problems. Obviously the proper version in the doctors office is probably far, far better and more powerful.

 

[Cloud]

Very interesting....I hope you continue to improve and post on your progress. Thanks for sharing on this.

I did the AHCC 10 years ago when it first hit center stage. It didn't do a thing for me symptomatically...not sure about NK cell count because back then I couldn't get a doc to do those labs. I have noticed that my response to things change over time.....so, maybe it's worth another try. I hope you do start a thread on this since you've had such a great response. I cannot take immune stimulants, but certain modulators are helpful. The best I have found to date is Modu-Care (plant sterols).

 

[Diva55]

This sounds intriguing. I looked up a UK site and found this video at a private clinic.

Not sure if I would be strong enough for the treatment as it looks a little uncomfortable. Although they're talking about treatment for Angina they do suggest 35 sessions!

http://www.eecp.org.uk/eecp_videos.html

 

[Hope123]

These are venous compression devices -- very commonly used to prevent blood clots in some hospitalized patients.

A less complicated version would be venous compression stockings except stockings still rely on the muscles of your legs during movement to provide
increased blood flow. Compression stockings are suggested for POTS and since POTS is common in CFS, I would think that the devices help CFS potentially by helping at least with POTS.

An interesting point from Dr. Peter Rowe's handouts on POTS is it doesn't just manifest as dizziness and lightheadedness but also fatigue, brain fog, etc.

 

[citybug]

Thank you. I was wondering if that was safe. Do you know if it's covered by Medicare, or how much the co-pay is?

 

[janeeleanor]

Hi all,

Thanks for the comments and questions.

citybug: It is covered by my insurance and I'm fairly sure it's covered by medicare. If you have a doctor in your area that has the machine you can call and find out, or if you live in the NYC area, you can give Dr Enlander a call and ask.

Diva55: It feels a little strange at first, maybe slightly uncomfortable but if you start out slowly you adjust quickly. I wouldn't be worried about trying it, especially if you're cleared by a doc to use it, you can always do 30 minutes the first time and work your way up -- that's what I did and now I fall asleep on it!

@Cloud: I will start a thread on AHCC as soon as I can, I agree it would be good to put that out there as I discovered it on my own and no doctor I've seen has ever heard of it. I'm curious, did you take AHCC or AHCC Gold? Both exist and the AHCC Gold is the product I reference in the thread. The products are made by the same company but regular AHCC is nowhere near as powerful...btw: iherb has the cheapest prices on it right now if you're thinking of giving it another shot.

ukxmrv: That's really interesting! It sounds like a primitive version of the EECP machine for sure. I wonder if you'll be able to use the EECP machine in the UK? I know that its primary medical use is for heart problems and that using it as a treatment for cfids is "off-label" but maybe you could find a doc that would do it...I was born and raised in the UK so hoping you can access the EECP there too!

caledonia: I don't use the Bell's Disability scale, although I did just take a look online when I saw your post, but I think the categories are too broadly defined. I have been "functional" for the past couple of years, meaning I can work part-time in a (non-strenuous) job as long as I get plenty of sleep and have low stress. I can "sometimes" exercise without feeling post-exertional malaise. I sleep fairly poorly and wake up fatigued and feel fatigued most days.

Since doing the EECP I would say that I am able to sleep better and I wake up feeling less exhausted; I can do more during the day, probably about 20-25% more, and I generally have more energy and less brain fog. Thanks to the economy, I am now in the process of applying for full time jobs for the first time in seven years so we'll see what happens when I begin a regular 40-hour work-week but I will try to keep you all posted. And, I am hopeful...

I think I answered everyone's posts but if not, apologies...I don't usually post on forums but thought that this information would be useful and hopefully help some of you out there...

Best,

Jane

 

[Nielk]

I also tried this EECP treatment with Dr. Enlander.
But, unfortunately have not been well enough to continue going in. The travel from my house is very exhausting.
I tried it twice and can attest to the fact that it is not uncomfortable and they monitor you very closely to make sure everything
is going fine,. (blood pressure, heart rate etc..)
I only tried it twice so I can't comment on results.
I wish i was well enough to travel in to get more sessions.

 

[janeeleanor]

I also tried this EECP treatment with Dr. Enlander.
But, unfortunately have not been well enough to continue going in. The travel from my house is very exhausting.
I tried it twice and can attest to the fact that it is not uncomfortable and they monitor you very closely to make sure everything
is going fine,. (blood pressure, heart rate etc..)
I only tried it twice so I can't comment on results.
I wish i was well enough to travel in to get more sessions.

I hope you feel better soon and are able to re-start the treatment -- I know how it feels to be so sick that you can't get around, that was me six/seven years ago...
Wishing you the best and hoping that you find the right treatment.
Best,
Jane

 

[Nielk]

Thanks Jane

 

[David]

My Daughter's Improvement from CFS

I like to offer a glimmer of hope for CFS patients.

My daughter who is now 15 years of age, came down with CFS 5 years ago. Like many sufferers of CFS she was misdiagnosed with numerous other diseases and herded from one doctor to another. She finally received the diagnosis of CFS from one the most respected Pediatric Rheumatoid Specialist in the country. Unfortunately he provided no treatment and no guidance. This may sound familiar. Her cognitive ability, her energy were seriously compromised as well doing the basics such as walking and dressing herself. She slowly was able to go to school though with many absences or leaving early and of course her course work suffered and being in a competitive academic environment did little for her self esteem.

Luckily we found Dr. Derek Enlander,of NYC a little over 2 years ago. After doing exhaustive blood work and a exhaustive examination, he concluded that she did indeed have CFS. He has been building up her immune system with a variety of supplements.

But the two most important factors to her improved health, I would say is the course of LDN (low dose Naltrexone) which she has been on now for a year and a half. This drug has given her greater energy, and less pain. And the other is EECP treatment which was first developed for heart patients who could not stand the rigors of vigorous exercise.

She started the EECP back in Late May, since then her energy level is up, her blood pressure is almost normal, her pressure prior to this was extremely low, her cognitive abilities have an 100 fold increase. Having met her teachers for Parent teacher conferences recently, each one noticed her ability to concentrate, openly discuss things in class, retain what was just taught and most importantly doing A work in most of her classes, with the lowest grade being B. I can't begin to tell you what difference this is from just a year ago. The difference is night and day and for a father who has watched his daughter suffer and struggle for the last five years, I can't begin to tell you what this means for me, my wife and of course my daughter.

I will preface my excitement knowing that this is not a cure and she still has a long road ahead, but for the first time in years I can say that her improvement is exponentially greater than anytime since the onset of her illness.

 

[clive powney]

David,

This is brilliant news and I can only dream of how you must feel. I hope the improvement continues and your daughter can live as good a life as possible.

 

[ukxmrv]

David,

So pleased to hear about your daughter. Another of Dr Enlander's patients posted a week or so about her own improvements with EECP. I'll see if I can find the link and add that here.

Here it is

http://www.forums.aboutmecfs.org/sh...Treatment-is-Very-Helpful&p=129928#post129928

 

[alice1]

Fantastic news about your daughter.
Wishing her continued progress.!!

 

[Wayne]

Hey David,

Thank you very much for your post. I'm going to visit my Osteopathic physician this afternoon, and I plan to give a copy of yours and Jane's post about her own EECP experience to him. Perhaps he will know if this is available locally here in southern Oregon.

Congratulations on your persistence in looking for and finding something that helped your daughter so significantly. I'm sure it feels like a huge blessing in your family.

All the Best, Wayne

 

[aquariusgirl]

hi
I'm glad your daughter is improving.
a couple of questions: did Dr Enlander prescribe the LDN? what dose does yr daughter take?
what tests does Dr Enlander use to monitor results on LDN?

thank you.

 

[Cort]

Congratulations! I had never heard of EECP before and I wish your daughter continued success Thanks for spreading the word on a promising new treatment.

I merged the threads together by the way.

 

[Wayne]

Bumping this up for those who may have missed this. Could be very significant for some PWCs.

Regards, Wayne

 

[willow]

Hi,

For people in the UK I used this at a beauty salon. They told me the origianl purpose was to improve circulation for heart patinets but they used it for lymph drainage and to reduce fluid retention in tissues.

You can choose the pressure and I think the interval of compression, so it doesn't have to be uncomortable, to me it felt a bit odd but ok.

I reacll it was fairly inexpensive, tho can't remember the precise price, say around 20 a session in today's money.

I tried it 3 times. The 1st I spent almost the entire next day on the loo, barely able to get a drink of water, though I felt great afterwards. The
2nd and 3rd times I didn't notice much, though I think I may have felt a bit hyped and decided against a 4th session. I live elsewhere now and have previosuly looked for another salon offering this but not in a committed, no stone unturned way.