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Dr. David Bell on "Intravenous Fluid as a Treatment for ME/CFS"

  [ 1408 votes ]   [ 5 Comments ]
By Dr. David S. Bell, MD, FAAP • www.ProHealth.com • November 29, 2006


Reproduced with permission from the November 1, 2006 issue of the Lyndonville News.* Dr. Bell is a widely published, internationally known expert on adult and pediatric ME/CFS, practicing in Lyndonville, New York.

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.

Background
My first exposure to this treatment was nearly 20 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 25 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, 6 of 25 (24%) did not respond, and 19 of 25 (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) [desmopressin acetate, used to decrease urine production] 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 drowned 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.

Disclaimer
Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

_______

* Reproduced with permission of the author from the Lyndonville News, Volume 3, Number 2, November 1, 2006. ©Copyright 2006. David S. Bell. All Rights Reserved. Lyndonville News provides “Information and Support for the ME/CFS/FM Community.” To subscribe, go to http:www.DavidSBell.com/DSBJoin.htm. E-mail subscription is free, while the hard copy sent by mail involves a fee.

Note: This information has not been reviewed by the FDA. It is not meant to diagnose, treat, cure, or prevent any disease. It is very important that you never make a change in your health support program without reviewing and discussing it collaboratively with your professional healthcare team.



Please Discuss This Article:   Post a Comment 

RE: Intravenous Fluid
Posted by: TNMissy1
May 9, 2007
I find this very interesting! As a child aged 3-7, I would have periods about every 3 months when I would get sick to my stomach and dehydrated. My parents would take me to the emergency room for an IV, and miraculously within a day or so I was as good as new! I'm now 49 and was diagnosed with fibromyalgia syndrome at age 28.
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Dr. David Bell on "Intravenous Fluid as a Treatment for ME/CFS"
Posted by: SerenaEdwards
May 25, 2007
We used lasix for quite a long time after desmopressin was a failure. Then we switched to sodium bicarbonate trying to get the acidosis under control. The situation improved so much that I stopped the lasix altogether.

I would have 2 concerns about the IV saline. One, I am chronically ill from environmental mold exposure - mycotoxicosis. So I'm not going to do anything that would subject me to taking even more antibiotics (which are mycotoxins).

But I had another thought about that negative reaction. I had to stop using oxygen because I couldn't tolerate the off-gassing from the tubing. Even months later, it would bother me. (The sensitivity tracks very closely to new mold exposures. I'm not dx'd as MCS, strictly speaking.) I don't go into the plastics section in stores. I get sick if I eat off of soft plastic dishes now. So I'm thinking, hey...is that saline in a plastic drip bag? I'm pretty sure it doesn't matter how hypoallergenic the manufacturer says it is, because this isn't an allergy...and "hypoallergenic" doesn't mean NO ONE will react to it. If someone will, it would almost certainly be some of us!

 


Iv user
Posted by: cfsannie2
Oct 18, 2007
I've been dx since 1995, sick since 1994 and several yeaRs after getting sick (and having numerous trips to the ER and/or hospital stays) my husband noticed that I always looked better after getting iv saline......he told doctors this but none listened.....FINALLY one did and we started doing iv treatments at home (had a good friend who was a nurse and would come to the house and 'hook me up').....I was able to do things that I hadn't done in years ..... without pay back!!!! And for the first time had hope.....then my insurance company got involved and refused to pay for any of it.....my nurse friend moved and we couldn't find anyone to do the IV so we talked to the doctor about trying to get the insurance company to cover home nursing....no way....too expensive...no medical reason.....we were willing to pay for the saline ourselves and would have tried to pay for the nurse but couldn't get approval......so finally gave up.....and still, even now, everytime I go to the ER for one of my migraines, the first thing my dh asks for is to have an iv ....... even before the pain meds......and always, the next day or two, I am better.....except for the migraine problems...... To anyone who can get their doctors to read this article, I believe it is well worth trying!!! It was years AFTER we knew the effects that we found Dr. Bell's article....we already knew the plus side of iv treatment and were so excited to see a Doctor actually documenting it! :)
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reply to dr. bell's newsletter on IV fluid treatment
Posted by: cmwaterjunkie
May 29, 2010
hello, I just read your comment to Dr.Bell's 2006 newsletter on IV fluid as a treatment for ME/CFS. I was shocked! For 10 years I have started to think I was the only one experincing this anomily! well, I dont know offically if I have ME/CFS, but I have been in and out of hospitals, ER'S, and have had 6 back surgeries and a thoroplasty since I was 15 years old. So I have been dealing with all kinds of pain. Thats how I started noticing a change in me after IV fluids were administered. sure I noticed how much better I appeared, which was a plus, but it never lasted very long. My issue was that the IV fluids seemed to temporarily cure all kinds of issues I was having. Like extreme thirst, excessive sweating, heart palpatations, extreme fatigue,and so much more I don't have time to go into. For 10 years I have been to over 12 different doctors trying to explain how IV fluids was the only thing I was certain made me feel better (for a while anyways). But time after time of blood and urine labs and complete blood panels and specialist...everything came back normal. After a while my dr. started pushing antidepressants on me saying it was all in my head. So, I stopped telling my story, and whenever my symptoms got bad enough, I would just go to the ER and say I was dehydrated. I would be given fluids and of course by labs were always normal. but I didn't care. I thought this system would work for me. Unfortunatly, now my symptoms are getting worse and frequent. I cannot afford to go to the ER every week! And no Dr. can find anything wrong with me. I cry about it almost every day now. then, I found this journal blog of Dr. Bell and your comment blog. It was so exciting for me. I finally felt like I had my first lead to getting help. Is there any information you can give me that might help? Please reply. I am desperate. Help me...

 


Saline
Posted by: salineadvocate
Nov 16, 2007
I have had CFS for 19 years. Dx with orthostatic intolerance for the past 10 years. Tried pharmaceuticals for the OI but the side effects were unbearable. I have now been doing weekly IV saline infusions of 1L for 9 years. No indwelling catheter, just a small needle prick each week. When infections are really bad, or I must take antibiotics I infuse twice weekly. The saline is what keeps me going. It allows me to have a life. When I stop the saline, my body shuts down, pain becomes unbearable and I am back in bed. It has NOT cured me of anything (I still get sick all the time) but it has allowed me to function and have a better quality of life. Over the years MANY doctors have rolled their eyes when I explain that this treatment works. They insist that oral water and salt would do the same thing. For me, it doesn't (have tried oral hydration solutions, increasing salt etc...). I am so thankful that Dr. Bell has been honest in stating that he has seen it provide improvement and admits that the reason it works remains elusive. I hope that someday soon there will be an understanding of the mechanism of why this treatment helps. It is a shame that such a simple treatment could provide relief to a plethora of sufferers, but is dismissed as invalid by most doctors.
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