IV fluids for treating Myalgic Encephalomyelitis

How IV fluids help me

Over the last few years I have been talking about how intravenous (IV) fluids help me. This has led to a number of questions that I will try to answer here.  

I am in the U.S., so some of what I discuss here won’t apply to people from other countries.  I also include information that will apply to anyone considering getting IVs.

Why do I need IV fluids?

I have had sudden onset myalgic encephalomyelitis since August 1989.  As is common in ME, I have all the symptoms of reduced blood volume as described in the International Consensus Primer (ICP) on page 6:

“low circulating erythrocyte volume (~ 70% of normal).  Vascular abnormalities suggest there is insufficient circulating blood volume in the brain when in an upright position, and blood may pool in the extremities.”

The ICP recommends the following in the non-pharmaceutical section under Energy Metabolism and Ion Transportation (page 18):

“volume expansion: • quality sea salt with adequate water intake”

I have been doing increased fluids with salt (and other electrolytes) for decades with varying success.  As my baseline dropped in the last 10 years, oral fluids with electrolytes have not been sufficient to maintain my limited baseline to function standing up.

In the pharmaceutical section under Energy Metabolism and Ion Transportation on page 18 of the ICP IV fluids are recommended.

“volume expansion: sodium chloride – IV normal saline…”

I appreciate the ICP includes a number of useful treatment recommendations for many of the symptoms I experience because of ME.  I wish more doctors would rely on this primer written by experts in the biology of ME.

Getting IV fluids with my heated blanket.

What Improvements Have I Experienced?

Low blood volume causes a wide range of symptoms.  I was not aware that some of the symptoms I have dealt with over the years were a direct result of low blood volume until IV fluids improved those symptoms.  

Standing Up To POTS (a nonprofit organization in Ohio) discusses IV fluids HERE.  In that article they list the following symptoms are caused by low blood volume.

Symptoms of hypovolemic shock:

• Anxiety

• Blue lips/fingernails

• Chest pain

• Confusion

• Dizziness

• Loss of consciousness

• Low blood pressure

• Low or no urine output

• Profuse sweating

• Shallow breathing

• Tachycardia

• Weak pulse

I have noticed the following symptoms improve after getting IV fluids.

• Being able to stand without feeling more ill

• Improved cognition

• Improved digestion

• Better sleep

• Improved mood (my husband can attest to that one)

• Alleviates some of my post-exertional neuroimmune exhaustion

• Reduced heart rate

• Improved heart rate variability

• Feeling less toxic

Caveat

I am aware that not everyone with ME experiences benefits from IV fluids.  I do quite a few other things that help me manage my symptoms.  This is not a cure.  I am still very ill and mostly homebound. I need my husband to manage a great deal of our daily lives and support me in many daily tasks.

The benefits do not last.  This is not a once and done benefit.  During the times I did not have access to IV fluids, I saw a return to a lower baseline and the return of symptoms alleviated by IV fluids.

What am I currently doing?

I get IV fluids once a week now.  This requires me to be driven to an infusion center in a neighboring town.  It takes about 45 minutes to get there, an hour for infusion and a 45 minute trip home.  This level of activity would be far outside my activity envelope if I was not getting IV fluids.  Without someone to drive me, I would not have access to these fluids.  I suspect I would have more benefits if I was able to get these infusions at home.

When did I start getting IV fluids?

I originally got IV fluids during emergency room visits in the first years of being sick - in the 1990s.  I saw how beneficial they were but because we lived over an hour away from a hospital, we did this very seldom.  I also saw benefit when I got IV fluids for medical procedures.

In 2014 I was seen by a good EP cardiologist who diagnosed me with postural orthostatic tachycardia syndrome (POTS).  At that time I was prescribed Corlanor to slow down my heart rate and advised to drink plenty of salty fluids to keep my low blood volume up into a more normal range.  

In 2016 I moved to a new area and my new doctor offered IV fluids to help me manage the two hour trip to his office.  It was clear these IV fluids significantly improved my ability to stand and raised my baseline.  The main benefits originally only lasted a few days, but the impact on my life was significant.  At that time I would get IV fluids about once a month then moved up to once every three weeks as I found a closer infusion center.

After moving to our current location a few years ago, my new doctor continued the IV fluids at my office visits.  He saw the impact they had and highly recommended I get them much more often.  He pointed out that an added benefit to increasing blood volume with IV fluids is that “the solution to pollution is dilution”. 

Since onset in 1989, I have felt toxic.  I use antioxidants to help offset the oxidative stress.  I wrote about that HERE.  The IV fluids definitely take away some of the toxic feeling, so I agree with him on that point.

Unfortunately, my Dr is in another area of the state and not able to order IV fluids at a local infusion clinic.  The only option left to me was to go to a commercial hydration business.  These health spa type businesses have popped up all over the U.S.  The costs vary greatly.  It is worth shopping around.

Affording IV Fluids

I have insurance through my husband’s work.  This is a mainstream U.S. insurance company.  I get IV fluids covered because I have a POTS diagnosis.  My ME diagnosis does not help me get insurance coverage for IV fluids.

Insurance coverage for IV fluids has been an ongoing challenge.  When I get them at my Drs’ office, they are billed as an add-on at the visit.  So I had to pay my copay to see the doctor plus the add-on of the IV fluids.  The trip was far too long (~2 hours) to do on a regular basis.

The private hydration place in the town near me offered me a basic rate and provided a bill so I could submit that to my insurance company.  Getting reimbursement for part of the cost from my insurance company has been a nightmare!  The manual billing section of my insurance company is riddled with errors causing many inaccurate denials and varying reimbursement rates.  I wrote about that HERE.

The next option was to find a local electrophysiologist (EP) cardiologist who could order them so I could be seen at a place my insurance preferred.  It took months to get to a regular cardiologist and then an EP cardiologist.  I explained about EP cardiologists in my article HERE.

Both of these doctors were excellent to work with (which was a pleasant surprise).  Unfortunately, the system this EP cardiologist was affiliated with meant infusions were done at the hospital.  After a couple visits we found the cost was more than the commercial hydration center and there was a higher risk to my health due to going through a hospital to get to the infusion center.

After some research I learned that there is another infusion center in the area that is much more affordable, but I needed a doctor from that medical system willing to see me and prescribe the IV fluids.  It feels like a bit of a miracle that not only did I find a doctor willing to see me, she was fully understanding of the situation and ordered the weekly IV fluids without hesitation.

So in the last few weeks I have been getting IV fluids weekly at a pleasant IV infusion center and it is mostly covered by my insurance.  But getting to this point was a ridiculously complicated maze for something that I need in order to help me cope with the debilitating disease ME.

Why I do IV Fluids Without a Port?

A port is an implanted device placed under the skin (usually on the chest).  For people who get frequent IVs this is sometimes done for ease of access to put fluid or medication into veins.  Because I have veins that are easy to access, there has been no issue with getting regular IV fluids.  At one time I was told a port would be required if I wanted weekly IV fluids. I now know that is not true.

In my case there are significant risks of infection from a port.  As is commonly recognized in people with ME, my immune system is dysfunctional.  I struggle to prevent or recover from bacterial infections.  I also do not tolerate any kind of invasive medical procedure well.  These issues make getting a port a high risk.

Tips for Getting the Most out of IV Fluids

The environment matters.  I am negatively affected by bright lights, loud sound, and noxious odors.  I am also not able to regulate my body temperature very well.  So in order to minimize the payback I do the following:

• Wear sunglasses and ask for the light above me to be turned off.

• Use various sound dampening items.  I have sound reducing headphones and Loop earplugs.

• Wear a quality N95 mask.  Not only does this reduce risk of catching a virus, it also reduces my exposure to harmful odors.

• Bring a heating blanket.  Fluids are NOT body temperature.  If I am lucky the fluids are at room temperature which is probably about 70 degrees F.  I have become so chilled from IV fluids that I am shaking.  I think using a heated blanket has the added benefit of helping the veins in my extremities absorb more fluids.  If I don’t do this, it seems my body doesn’t absorb much of the fluids and I pee them out almost as fast as I take them in.

What I Would Like to See

I think this treatment option should be an approved FDA treatment for myalgic encephalomyelitis.  If it was recognized that people with ME need IV fluids, it would be made widely available to people with ME.  I also think this should be made available in our homes!  There are many with ME who cannot travel on a regular basis.

I think we need research done to prove this is an effective treatment.  I think there are enough objective biological measures that would show improvements gained with regular IV fluids.

A 2017 study, Effects of intermittent intravenous saline infusions in patients with medication—refractory postural tachycardia syndrome, done on 57 people with POTS showed the following:

"Intermittent IV infusions of saline dramatically reduce symptoms and improve quality of life in patients suffering from POTS."

It is important that the dysautonomia doctors who are prescribing this treatment understand that people with ME have specific needs.  We cannot exercise and often cannot even do basic daily tasks without going outside our energy production window.  Plus we often do not tolerate the same medications or procedures as most of their other dysautonomia patients.

ME is a distinct, recognizable disease.  I think with proper education, many of us would have access to treatments like IV fluids that would improve our quality of life.  Research will bring more answers, but there is a lot doctors can help us with while we wait.

Colleen

SOURCES

1. The National Library of Canada Cataloguing-in-Publication Data: Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners. ISBN 978-0-9739335-3-6
   

2. Ruzieh, M., Baugh, A., Dasa, O. et al. Effects of intermittent intravenous saline infusions in patients with medication—refractory postural tachycardia syndrome. J Interv Card Electrophysiol 48, 255–260 (2017). https://doi.org/10.1007/s10840-017-0225-y

Information provided here or in comments is not to be considered medical advice