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Iron Man: A Young Person's POTS ME/CFS Recovery Story Pt. I

  [ 8 votes ]   [ 3 Comments ]
By Cort Johnson • www.ProHealth.com • August 31, 2016


Iron Man: A Young Person's POTS ME/CFS Recovery Story Pt. I. Image courtesy pixabay
Image courtesy pixabay
Reprinted with the kind permission of Cort Johnson and Health Rising.

By Cort Johnson

Infection Fells Teenager
 
In August 2014, a formerly very healthy and active 13 year old named Jack Schlanger entered the realm of the chronically ill. His story began with three days of high fever followed by eight days of lower-grade fever and extreme fatigue/malaise. About two weeks later he began experiencing nausea and loss of appetite, and had a massively swollen lymph gland. The skin was peeling off his hands and feet.
 
A myriad of blood tests followed, almost all of which were normal, except for some mild abnormalities in his red blood cells, hemoglobin and hematocrit tests, and high platelet, monocyte, and high eosinophil counts.
 
An infectious disease specialist believed Jack was suffering from a coxsackie or similar virus, and he was treated with the antiviral medication Zovirax for a week, followed by a 10-day course of Amoxicillin.
 
During September Jack experienced illness flares which left him pale, lethargic, without an appetite, and with stomach pain at roughly 3-5 day intervals.
 
ENT and infectious disease specialists ordered ultrasounds which revealed two large lymph nodes the size of golf balls. More blood work was done, all of which came back normal except for the puzzling low hemoglobin and hematocrit levels, and a few immune tests.
 
By now Jack has been tested seven times for mononucleosis, twice for Lyme disease and several times for herpes and other viruses. Plus he's had his lymph nodes biopsied for lymphoma & other lymph node diseases. All the tests have come back normal.
 
Jack improved after one of his enlarged lymph nodes was removed, but then relapsed, and after missing too many classes was finally pulled from school. He was now being home tutored.
 
In Nov. Jack was referred to a specialist in adolescent medicine who diagnosed him with post-viral fatigue syndrome. (After Jack hit the six month mark in February, he's diagnosed with chronic fatigue syndrome (ME/CFS)). Thankfully, he was not referred to psychiatric care, but his parents are informed that nothing further can be done. By now Jack is experiencing near constant stomach pain.
 
Four Diagnoses
 
When more blood tests, trips to specialists and another biopsy didn't pan out Jack's parents were at a loss until a week at the Rochester Mayo Clinic in March left Jack with four diagnoses:
  1. POTS (Postural Orthostatic Tachycardia Syndrome) (53 beats per minute increase upon standing) - POTS occurs when one's heart races during standing

  2. iron deficiency

  3. mild neutropenia

  4. gastric erosion.

Jack was put on metoprolol 25mg twice daily, iron supplements (vitron C – 1 tablet=65mg iron – once daily), & prilosec (once daily) for his gut issues. He was told to take in as much salt as possible, drink 3-4 liters of liquid per day, start cognitive behavioral therapy (once a week), slowly ramp up his exercise program (goal = 30 min of exercise plus 30 min other activity per day) and try to find a way to attend school. The head of his bed was raised 4-5 degrees to help him with sleep.
 
From March through May Jack very slowly improved. He gained a couple of pounds, his stomach pains - his worst complaint - are reduced a bit, and he's sleeping a bit better. He's able to attend two classes at day at school, and is doing five minutes of exercise in the morning and 15-20 minutes of walking and jogging on treadmill in the afternoon. He is still bothered by exercise induced fatigue and other symptoms.
 
Despite being on iron supplements for nine weeks Jack's blood ferritin levels (20 ng/ml) are, however, unchanged in May and his neutrophil and WBC levels remain low. When all Jack's pediatrician can do is to recommend more iron tablets a day, the Schlanger's are at a standstill.
 
Iron Man
 
"The body has no way to compensate during strenuous exercise for the loss of oxygen carrying capacity in such cases, which in turn may explain the extreme fatigue and exercise intolerance in POTS." ~Jarjour and Jarjour
 
In July, 2015 Jack met with a hematologist who put him on prescription oral iron tablets and told him to take them with orange juice and in between meals which contain dairy products and eggs. His ferritin levels jumped up fifty percent to 30 ng/ml over the next four weeks and Jack improved.
 
In the fall he was able to attend four classes a day, but despite months of graduated exercise training (GET) he was still unable to participate in sports.
 
In September, in an attempt to increase his iron levels, Jack began Venofer iron sucrose infusions. His first infusion bounced his ferritin levels to 47, and after the next one they're at 93. Jack could immediately tell the difference; he was not well but he was starting to play some hockey and he was not getting sick after exercise.
 
(The Schlanger's considered Fereheme infusions, which they had heard had great results in some POTS patients but went with the Venofer infusions because of possible side effects.)
 
Since Jack began the infusions (he's had 7 in about 9 months) his serum ferritin levels averaged 66 mg/mL. Note that Jack's iron levels are now far above what most doctors would consider that he needs.
 
Jack's first big breakthrough came when he finally was able to get more iron into his system. His levels had gotten up to 30 ug/uL - well above the action point in medicine - but he needed more. The iron infusions alone got Jack to about 80%. He was able to make it through 75% of his normal school day and was regularly doing light exercise without feeling any post-exertional malaise.
 
Why might iron be so helpful for Jack? Iron is a critical factor in aerobic energy production - our main means of producing energy. Oxygen is carried to our tissues by hemoglobin which is dependent upon iron. Low iron levels, then, reduce the amount of oxygen that gets delivered to the mitochondria. It's no wonder that anemia is often (but not always) associated with fatigue.
 
Achieving optimal iron levels has been shown in various studies to improve aerobic ability, endurance, muscle fatigability and restless leg syndrome, as well as cognition including memory, verbal learning and other facets of cognitive functioning.
 
What Are Your Ferritin Levels?
 
Jack's iron issues were initially missed because his ferritin, hemoglobin and hemocrit levels were never more than low "normal". It wasn't until he met with the POTS specialists at the Mayo Clinic that iron entered into his health equation.
 
That, of course, brings up the question - what is a healthy serum ferritin level? Jack's experience suggest that normal iron levels in one person might be too low for another.
 
That actually makes some sense given the huge range of iron levels found in humans. Medicine.net defines normal blood ferritin levels for males (12-300 ng/ml) and females (12-150 ng/ml). WebMD's normal ferritin levels are a bit higher (men 18-270 ng/ml, women 18-160 ng/ml), but they note that "a value that falls outside the normal values listed here may still be normal for you or your lab". 
 
The American Family Physician (AFP) website, on the other hand, states that "patients with a serum ferritin concentration less than 25 ng per mL (25 mcg per L) have a very high probability of being iron deficient".
 
The situation is confused by the fact that inflammation or infection can elevate ferritin levels. If chronic inflammation is present, the AFP states that "iron deficiency anemia is likely when the ferritin level is less than 50 ng per mL". In fact, if inflammation is present, the AFP believes that iron deficiency can only be excluded when ferritin levels are greater than or equal to 100 ng per mL (224.70 pmol per L).
 
Being female may add another layer to the issue. A study found that women seeing a doctor for fatigue who had seemingly normal ferritin and hemoglobin levels benefited greatly from iron supplementation. In a multi-centre, parallel, randomized controlled, closed-label, observer-blinded trial they were given oral ferrous sulfate (80 mg of elemental iron daily; n = 102) or placebo (n = 96) for 12 weeks.
 
The women on the iron supplements decreased their fatigue by 50% - a statistically significant amount compared to placebo. The authors proposed that women experiencing unexplained prolonged fatigue may be iron deficient if their ferritin values are below 50 ?g/L, even when their hemoglobin values are normal (above 12.0 g/dL.). They noted that even though ferritin and other measures were in the normal range, the iron supplements increased the women's rate of red blood cell production.
 
We don't know the ferritin inflection point for Jack - the level at which ferritin really made a difference for him - but note that 30 ug/ml was not enough. It wasn't until sucrose iron infusions boosted his ferritin levels above 50 that he really noticed a difference.
 
Jack apparently needs considerably more ferritin than his sister (30 ug/mL) to stay healthy. His ferritin levels are now (50's to 100 ug/mL) are similar to his mother's (80 ug/mL). 
 
Jack's low white blood counts (WBC) (3.5 thous/mcl) and neutrophils (absolute -1092) had been an ongoing concern as well, but they rebounded after Jack began the iron infusions. They were normal for five months but then dropped several times into the low range during the last five months Jack has been near healthy suggesting that low WBC's and neutrophils were not the issue for Jack. 
 
Questions
 
Unfortunately nobody knows whether infections, growth spurts or other factors are kicking off low iron stores - and POTS - in Jack and other adolescents, or if their low iron levels preceded the onset of their POTS. 
 
Nor is it clear why Jack and some other POTS patients have difficulty absorb oral iron tablets. Jack's parents reported that a Dallas hematologist, Dr Birenbaum, who uses Feraham iron infusions, clams that most of his POTS and cancer patients do not absorb oral iron well.
 
Low Normal Ferritin Levels?
 
What to do if you have ferritin levels below, say, 50 ug/uL and you are experiencing fatigue, stomach problems and other issues? Perhaps do what Jack did. Try oral iron tablets and then get your blood ferritin levels checked again.
 
If they haven't gone up perhaps consider trying a sucrose or other iron infusion. The results in Jack's case were obvious - he quickly felt better.
 
Taking Iron
 
Because the absorption of elemental iron is enhanced by an acidic gastric environment taking ascorbic acid (Vitamin C) with iron can help. Foods rich in tannates such as tea, or phytates such as bran and cereal, or pH raising drugs such as antacids, histamine H2 blockers and proton pump inhibitors should be avoided.
 
Jack's doctor had him taken iron with orange juice and to avoid meals with eggs and dairy. Iron taken on an empty stomach is absorbed best, but can cause gastrointestinal upset and constipation. For people who can't break down the coating on iron tablets liquid iron may be best.
 
Iron Deficiency, Autonomic Nervous System Issues and POTS 
 
Questions concerning the relationship between iron deficiency, orthostatic intolerance and autonomic nervous system dysfunction are not new. Despite growing evidence that iron deficiency commonly occurs in POTS, iron supplementation is rarely mentioned as a possible treatment. Jane Brody's excellent New York Times Piece on POTS, for instance, does not mention it. Outside of its use with erythropoietin it's not mentioned in DINET's excellent POTS treatment page, in Dysautonomia International's treatment overview.
 
Back in 1994 Biaggioni (who has done work on ME/CFS) found that anemia was common in people who had low blood pressure upon standing (orthostatic hypotension). A very small study the next year also found that autonomic failure was highly associated with anemia and orthostatic intolerance.
 
CFS_Woman_Exhausted.jpg Jajour and Jajour found that 50% of adolescent POTS patients compared to 14% of adolescents in the population at large had low "iron storage" levels (SF < 25 ug/L). Twenty-five percent of adolescent girls were deemed to have iron deficiency (SF< 12ug/L) compared to 9% of the population at large. Almost half of the young males in the small study were deemed to have anemia. This same group found low iron storage in adolescents with neurally mediated syncope or fainting.
 
A larger Mayo Clinic study (n=188) examined adoolescents with fatigue and/or orthostatic intolerance. The study participants, 75% of whom were female, commonly experienced dizziness upon standing (84%), fatigue (71%), headaches (63%), and nausea (54%). It defined iron deficiency as serum ferritin 12 Kg/L, and low iron storage as serum ferritin 25 Kg/L. Hypovitaminosis D was defined as=25-hydroxyvitamin D levels of e 20 ng/mL.)
 
Almost 70% of the participants were found to have postural orthostatic tachycardia syndrome (POTS). Sixty-nine percent either had iron insufficiency or low iron stores. Increased heart rates were not associated with low iron but low vitamin D levels were.
 
People with iron deficient anemia also tend to have reduced heart rate variability and increased sympathetic nervous system activity. (A similar kind reduced HRV is also found in FM and chronic fatigue syndrome (ME/CFS).
 
A Mayo clinical trial examining the efficacy of iron sucrose infusions in POTS patients with non-anemic iron deficiency slated to end in December of this year. It should, if successful, add iron to the list of generally accepted treatments for POTS.
 
Causes
 
Several hypotheses have been put forth to attempt to explain the correlation between lowered iron storage levels and orthostatic intolerance. They include altered blood viscosity, red blood cell deformation and hypoxia associated mitochondrial dysfunction (all of which have been suggested in ME/CFS).
 
Another possibility is abnormal metabolism of the neurotransmitters (catecholamines) used in the autonomic nervous system. Some researchers believe POTS patients with greatly increased sympathetic nervous system activation (hyperadrenergic POTS) might have the biggest iron storage issues of all.
 
The Nitric Oxide Connection
 
Jajour and Jajour speculated that reduced iron stores could increase the levels of nitric oxide (NO) present. Because the endothelial cells lining the blood vessels release NO to open up or dilate the blood vessels, increased NO may be contributing to POTS. Increased NO levels, in fact, have been found in POTS.
 
Interestingly, iron deficiency anemia has been associated with increased NO metabolite levels as well. Hemoglobin, it turns out, is the main scavenger of nitric oxide, and is apparently why fainting is another possible consequence of anemia. Indeed, one research group has linked reduced ferritin levels with "neural mediated syncope" or fainting.
 
Interestingly, the salt craving common in ME/CFS and POTS could derive from salt's ability to reduce endothelial NO levels.
 
The single largest reservoir of blood in our bodies is found in our abdomen. Julian Stewart, who has been studying POTS and ME/CFS for years, believes that either the presence of anemia or reduced iron stores causes increased nitric oxide production, blood vessel dilation and blood pooling in the abdominal area first. Abdominal or "splanchnic" blood pooling has been found in POTS. 
 
Conclusions
 
Jack's flu-like onset and his symptoms were typical pretty for a POTS patient. He was lucky to go to a center (Mayo Clinic) which correctly diagnosed his low normal iron levels as iron deficiency. When oral iron failed to bump up his iron levels sufficiently, Jack's parents turned to iron sucrose infusions. Once Jack started those his energy increased dramatically, his stomach problems calmed down, and he was able to return to school and engage in light workouts without suffering from post-exertional malaise.
 
The kicker with Jack's case is that Jack's sister and mother, and his mother's sister and nephew all test very much like Jack, but all are healthy. They all experience tachycardia upon standing, and they all have poor venous return (their heart isn't getting as much blood as normal). Jack's sister plays three sports, though, and his mother is a CrossFIt instructor.
 
The one difference found thus far is that their ferritin levels are higher than Jacks were. Unfortunately, we don't know if the Jack's flu triggered a collapse of his ferritin levels or if they were low before. The significant number of people who would test positive for POTS on a tilt table test yet have no symptoms at all, however, suggests that an important factor is missing from a POTS diagnosis. Could low ferritin levels be that factor?
 
Jack is back to 80 or 85% functioning, but he's not well yet; he's not the athletic young man he was before he became ill, and he's not engaging in competitive sports. We'll see that Jack will regain his health, but he'll have to use a controversial method to do it.
 
Stay tuned for that in Iron Man Part II: A Young Man Recovers from POTS.




About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.





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Article Comments Post a Comment

Daughter with CFS
Posted by: Maggie0422
Sep 5, 2016
My daughters case sounds so similar to Jacks. My daughter Olivia was diagnosed with EBV by infectious disease specialist after four months of the other doctors not finding anything but fatigue and low grade fever persisted. Then the EBV did not subside and other symptoms arose, it actually started attacking her immune system and she was diagnosed with CFS and then POTS. Almost a year went by, and she continued to just struggle through her POTS got better with treatment but something else was still underlying and she was struggling to keep up with schoolwork even on homebound school. So we went to the Mayo in Rochester and found that her cortisol was low. They repeated the test again and again and after we came home her endocrinologist here did an ACTH test. Ends up her adrenal glands were not functioning correctly or hardly at all and we were sent immediately for MRI of pitautary which found an enlargement of the pituatary gland. So she started steroid treatment for four months. Also she had previously been diagnosed with Graves' disease due to her thyroid levels and history in family. Since her steroid treatment she finally started to feel better and was able to complete high school and graduate on time. But it took three years of her life and it is still something we have to monitor.
Reply Reply

Mayo Clinic informaton
Posted by: many turtles
Sep 22, 2016
I have been diagnosed with EBV, CFS/ME/Fibromyalgia since 1994. As I have aged various other issues have arisen; POTS, LUPUS, Crohn's Disease, etc., etc. Inflammation, almost constant pain that moves around the body, severe fatigue and cognitivee challenges (FIBRO FOG)continue to be severe enough that, for the majority of time, I remain house bound.

I would very much appreciate any information you may have as to how to approach, apply and ultimately become tested/treated by the Mayo Clinic, in New Your. I do have what I consider to be very good insurance. My issue would be putting the pieces together so that I might be considered a candidate for treatment.
I live in California and perhaps there are similar clinics that are geographically closer. Where might I find this type of information? It is challenge for me to type for any length of time, and like right now, extremely difficult to process complex information or reports, etc. Any information you would kindly share or any options you may suggest would be greatly appreciated. Thank you Iron Man for your courage and Thank YOU Cort for making sure we all have the latest and most trustworthy information about ME/CFS/POTS....Bless you and thank you in advance for your assistance. Sincerely, Pam Roome'
Reply Reply

POTS Treatment using biofeedback
Posted by: WellBren
Dec 13, 2016
Some people seem to be having success using a combination of biofeedback, diet, and exercise to manage their POTS symptoms. From what I have read though, the results really depend on how the program is styled and the amount of effort the patient can put into following the program. There's a place in Dallas called The POTS Treatment Center that offers a treatment program including these elements.
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