Lyndonville News-IV fluids

[Guest guest]

Well, the below definetely qualifies as a new experimental treatment.

I wonder if it is the water or the salt or both that is helping some.

Mike C (what is a PICC line or Mediport?)

Web Site: www.SBell.com

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INTRAVENOUS FLUID AS A TREATMENT

FOR ME/CFS

Introduction

The newsletter today is my first discussion of intravenous saline as

a treatment agent for ME/CFS. I have now been using this treatment

for nearly six years and wish to share my thoughts. While I plan to

be open, honest and even blunt about this treatment, I will not

compromise the confidentiality of the patients treated. I have

nothing to sell, and I am not encouraging this treatment as it has

not been rigorously tested. However, I do not think I am witnessing

a placebo response, and all things considered, it is the most

effective treatment for severe ME/CFS that I have found in my 21

years of looking. But it has serious drawbacks and risks.

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Background

My first exposure to this treatment was nearly twenty years ago when

a patient I knew was seeing a nutritional MD and receiving vitamins

in intravenous fluids. This patient reported that she would get

a " lift " for a day or so after the treatment. But taking huge doses

of vitamins orally did not give her the same response.

A few years later came the intravenous gamma globulin trials, and

some people had a temporary response after the IVIG. But at a

thousand dollars a treatment this could not be continued. I wondered

why the IVIG worked better than intramuscular injections.

Infection with an antibiotic-sensitive bacteria was always a hot

topic and I undertook a trial with three weeks of high dose

intravenous antibiotics. Patients had an improvement during the

treatment which was assumed to be due to the antibiotic. Some people

had a reaction called a " Herxheimer " reaction consisting of chills,

fever and shaking that was assumed to be an allergic reaction to

killed microorganisms in the blood stream. More on that later.

First Trials

The first patient to use this treatment had a very severe case of

ME/CFS; she had been disabled for years and bed-ridden for nearly

two years. She had been having nearly constant syncope and pre-

syncope and had been admitted to a first rate hospital for nearly

six weeks. They then concluded that these were " pseudo-seizures " and

that she was a fruitcake and sent her home without a follow-up

appointment.

I knew her and her family well and we had lengthy discussions about

a trial of intravenous saline to increase her circulating blood

volume which we had measured to be low. She agreed and with the

first bag of saline the " pseudo-seizures " stopped and did not

return. At three months of daily infusions of 1 liter of normal

saline, she was able to be up and around the house for several hours

a day. At six months of treatment she was able to volunteer at her

church for three hours a day. At one year of infusions she returned

to full time work and has remained working for nearly five years.

She has had the severe complications of this treatment. On four

occasions she has had an infection of the indwelling catheter (PICC

line or Mediport), and on each occasion the line was surgically

removed and treatment was started with antibiotics. She remained

without the IV fluids for several weeks and on each occasion she

would slide down toward her previously disabled state. She has

elected to continue the IV saline despite the serious infection

risks as she can lead a nearly normal life with the indwelling

catheter.

There are several important things to consider: 1) the IV saline has

not cured anything, it has merely improved the orthostatic

intolerance and fatigue, pain, and other symptoms; 2) with the

saline infusions she can work full time and lead a nearly normal

life; 3) with the saline infusions she has severe blood stream

infections that require urgent removal of the intravenous line and

high dose antibiotics; 4) she feels that the risks and drawbacks of

the treatment are justified by the improved activity and decreased

symptom intensity.

Results to Date

Over the past six years approximately twenty five other patients

have had placement of PICC line or Mediport and daily normal saline

infusions. Three patients could not tolerate the IV fluids because

it made them feel more ill, and the fluids were stopped after

several days. Three other patients used the IV saline for three

months and then discontinued it because there was no benefit. It

caused no harm, but it was just not doing any good. So overall, six

of twenty-five (24%) did not respond, and 19 of twenty five (76%)

have felt better with this treatment.

Two patients have had a line infection and have elected not to

resume the fluids because of the risks. Both have said that the IV

saline made them feel significantly better. Five or six other

patients have had line infections but have resumed the saline

treatment because they feel better and are willing to assume the

infection risk. Some patients have returned to work, most have not,

but all patients continuing the treatment have an improved quality

of life.

It can be assumed that everyone with an indwelling IV line (PICC

line) will have an infection sooner or later. A rough estimate is an

infection rate of 20% per line per year. Usually a PICC line is

placed for short term administration of antibiotics or chemotherapy

for cancer. The line is changed every six weeks, but there is no

data available for normal saline infusions. Because the blood

vessels are not injured by the saline, the six week rule does not

make sense and some patients have done well long term (over a year)

without an infection. The key is to pull the line at the first sign

of an infection and not wait, in hopes of saving the line.

It does not seem to matter how fast or slow the fluids are run in,

everyone seems to develop their own preferences. A physician once

called me and said the results were even better when albumin was

added to the saline, but I have not tried that. I tried once weekly

saline by a peripheral line but the results were one half a good day

and six and a half bad days per week. No one has elected to stay

with this approach. No one will believe that this treatment works

until several double blind studies are run. But it is not possible

to do a double blind study because you cannot have fake (placebo)

intravenous line and saline. What an irony – after all these years

the results are better with the usual placebo, normal saline!

I have no idea of why this treatment works. At first I thought it

was because of correcting the low circulating blood volume, but we

have been able to correct that with other measures (dDAVP) without

the same results. Whatever the saline is doing, it should be

possible to reproduce the effects without intravenous fluids if we

only knew the mechanism.

As for the " Herxheimer " reaction, the last patient started on the

saline had these reactions without the antibiotics. Therefore it

could not be that the body was reacting to dead microorganisms

unless the saline somehow drown them. She is continuing the fluids

because she is improving and described the reactions this way:

" As a CFS patient, I recently received a PICC line and administered

my first IV infusion. Initially, I infused 1,000 cc's of normal

saline from 12:00 until 4:00 p.m. My day was uneventful until 10:00

p.m. when for 15 minutes I was overcome with intense nausea and hot

flashes. An overall feeling of sickness swept over me. The nausea

and hot flashes subsided over a period of two hours. I then

experienced a general feeling of sickness and mild nausea that

continued throughout the night. I slept fitfully. Determined not to

be discouraged and to try my utmost to make this treatment work, I

resumed my infusion the next day. "

In conclusion, I feel that this treatment approach is a valid area

of research, and urge researchers to attempt to understand the

mechanism that appears to underlie this approach. I would be

interested to hear from any clinicians/researchers concerning their

experience with IV saline.

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