Miscellaneous Topics & Eosinophilia-Myalgia Syndrome

Author's Comments: Of the 33 persons who responded to this survey, 32 are female. So, I had fewer male respondents than in the past for various reasons (didn't read email in time to respond, no longer on my list, etc.). Most respondents are in their 50s and 60s, with probably a few more in their 50s. A handful of respondents are in their 70s, and the oldest respondent is in her upper 70s. I don't know the age of the youngest person; however, there are a handful of persons in their 40s who replied. Types of cases range from stable and less seriously sick to moderately impacted by EMS to severely impacted by EMS; thus, all types of persons with EMS are represented. Some persons take almost no medications and others take many medications in order to function at all. Many of the persons are retired, but a fair number are still working or trying to work, at least part-time. Some do voluntary work in their communities. There are also respondents who are totally disabled. A wide spectrum of "types" of persons with EMS responded to the survey.

Have you been diagnosed with any type of cancer in the last 10 years? Please include skin cancers.

YES: 6 persons

Types of Cancer:

Breast Cancer: 3 persons

(one diagnosed Feb. 2005; another in 2004; another in 1997)

Uterine Cancer: 1 person

(diagnosed 2003 - person also developed breast cancer the next year)

Various Skin Cancer Types: 3 persons

(2 not specified as to type; 1 specified as basal cell carcinoma 10 years ago; another person has not had skin cancer but had a pre-melanoma mole removed in 2000)

Author's Observations: Since three of the six persons reported skin cancers, I really can't tell much from this survey about cancer and EMS. The sampling of persons was simply not large enough to tell us whether or not people with EMS are developing cancer at a higher rate than the average expected for the population. I have read before in the book published of the 1991 Tryptophan Hearings in Congress that bladder cancer was associated with animals fed tryptophan, but I don't know if that is true of humans who have used tryptophan. I've also read in that same publication (and elsewhere, I think) that breast cancer, some people believe, may be associated with EMS, but I don't have any data to confirm that belief. There is an article written by Dr. Luis Espinoza, an EMS expert, who cites a rare cancer associated with EMS; yet, when I looked into the matter, I found that one, or at the most two people, of all those with EMS had developed thisrare cancer. It is listed among longterm complications of EMS on the NEMSN Web site for those who are interested in seeing the name of the cancer. I will put a link to NEMSN at the end of this article. I will also give the name of the Hearings Booklet. Look for ** at the end.


NO: 25 persons

UNSURE: 2 persons

Person 1: "Lobular Carcinoma in Situ; This is really a marker for cancer rather than actual cancer; actinic keratosis, possible precursor to squamous cell carcinoma; 1993 LCIS; 2004 Ak diagnosis").

Person 2: "They are still checking this out. I have a strange kind of anemia which requires a bone marrow biopsy which hopefully will be done very soon."

Have you been diagnosed with anemia (of any type) in the past five (5) years? If you answer yes, please indicate the type if you know. If you answer yes, please indicate if the anemia has resolved. One reason for asking this question is because anemia often occurs at a higher rate in persons with autoimmune diseases.

NO: 27 persons

YES: 5 persons

Type of Anemia:

Unknown Type: 2 persons

Person 1: "Just low red and white" [blood counts]
Person 2: Second person wrote she needs a bone marrow biopsy soon and has "a strange kind of anemia."

Iron Deficiency and Vitamin B 12: 1 person

Iron Deficiency: 2 persons

Person 1: "Following knee replacement surgery"
Person 2: Resolved "with an iron supplement"

Resolved: 3 persons

Not resolved: 2 persons

UNSURE: 1 person

Author's Observations: About 15% of respondents have had or have Anemia of some type. Although this may not seem like a large number, I am certain it is higher than the norm for the general population. Also, since most women with EMS are over age 50 now or post-menopausal, the usual causes of anemia for younger women are not as likely to apply. One person did report anemia after surgery and that makes sense. It does also appear that a few of the people have some kind of blood disorder(s) that are difficult to manage and involve irregularities of the red cells or both white and red blood cells. I think the lesson is that people with EMS need to get regular blood tests, and if their doctors do not order them, patients should press for blood tests on a regular basis.

Have you had a recurrence of eosinophilia in the past 2-3 years?

NO: 19 persons

YES: 6 persons

Eosinophilia in past 2-3 years: 6 of 33 persons or 18%

Author's Observations: This seems significant. I really didn't expect that many persons to have had a return of eosinophilia or to have a sustained or ongoing eosinophilia. Of course, many things can cause eosinophilia besides EMS, such as allergy season or other allergies, reactions to medications, and other diseases. But, it does seem that the majority of the six persons had/have an eosinophilia that is somehow related to EMS. I've known persons in the past with EMS who spiked a high eosinophil count once in a while after it had returned to normal, and so I think there could be a subset of persons with EMS who are prone to these occasional spikes or higher counts. At the same time, I realize that many persons in the population who do not have EMS may also have periodic elevated eosinophils due to allergies or reactions to medications, etc. It's hard to know what to make of eosinophilia in persons with EMS except it needs investigation and treatment if necessary.

Level of Eosinophil Count if known:

Person 1: [Not known]
Person 2: 13,000
Person 3: [Not known]
Person 4: [Not known]
Person 5: "Doctors call it 'moderate' without giving a percentage. My count is currently around 1000 to 1500."
Person 6: "Oncologist says 'yes' I have eosinophilia; rheumatologist says 'no' I don't have eosinophilia. Level may be more normal than not, but symptoms worse."

Did you require treatment and with what?

Person 1: "No."
Person 2: "Hospitalized...nothing done but blood tests and saline I.V."
Person 3:"....Prednisone for 3-4 days."
Person 4: "Steroids."
Person 5: "We are still discussing this because I cannot take Prednisone or any type of it."
Person 6: [No specific answer given.]

Is your eosinophil level normal now?

Person 1: "Yes, as far as I know."
Person 2: "No."
Person 3: "Yes."
Person 4: "Yes."
Person 5: [no answer; obviously, the level is not normal yet, however.]
Person 6: "Level may be more normal than not, but symptoms worse." [Note: person has abnormal white and red blood counts.]

If you always have an elevated eosinophil count, write YES, and about the level if you know.

Person 1: [N/A]
Person 2: [No response to question, so not sure if person always has an elevated count.]
Person 3: [N/A]
Person 4: [N/A]
Person 5: "Yes, for the last several years, about the level I gave above (1000-1500)."
Person 6: [No specific reply; as this patient noted, her two main treating physicians don't even agree whether or not to call what she has eosinophilia due to the unusual nature of her blood disorder(s).]

UNSURE: 8 persons

Author's Observation: Of the respondents, several wrote that they answered "unsure" because they have not had a blood test for eosinophilia in the past several years and are not sure. One person simply wrote, "never checked." I am truly surprised that some doctors are apparently not checking EMS patients for eosinophil counts on a regular basis. I think I once heard an expert on EMS state that everyone with EMS should have the eosinophil count checked at least once a year; however, I hasten to remind all that I am not a medical doctor and am only reporting what I heard.

Have you been diagnosed with hypothyroid disease (hypothyroidism) at any time since getting EMS?

NO: 21 persons

One person wrote: "No, but I am at the lowest normal."
Another person wrote: "No, but they keep wondering about it."

YES: 7 persons

Author's Observation: This is 21% of respondents which seems significant to me. If you add the 4 people with pre-existing hypothyroidism diagnoses, then 11 of the respondents have hypothyroid disease. That makes 33% (one-third) of total respondents who have hypothyroid disease, pre-existing or post-EMS.

Is your condition being successfully treated?

Person 1: "Don't know if it's successful."
Person 2: "Yes."
Person 3: "Had Grave's Disease (Hyperthyroid), received radio-iodine treatment after developing Agranulocytosis from PTU (anti-thyroid med). Was put into hypothyroid as a result. Am currently stable and healthy."
Person 4: "Treated....I don't know how successfully."
Person 5: "Drs. think so; I'm not so sure."
Person 6: "Yes."
Person 7: "No."

DIAGNOSED WITH HYPOTHYROID DISEASE PRE-EMS: 4 persons

Person 1: "Had Hashimoto's Disease prior to EMS."
Person 2: "Yes, but this was diagnosed a few years before being diagnosed with EMS."
Person 3: "Had hypothyroid before EMS."
Person 4: "No [I was not diagnosed since getting EMS]. I was diagnosed with hypothyroid disease about 1971, when 20 years old."

Is your condition being successfully treated?

Person 1: "Yes."
Person 2: "Yes."
Person 3: "Yes."
Person 4: No Response - not clear if patient is being treated or not at this time or what their status is with regard to hypothyroid disease now.

UNSURE: 1 person

Have you been diagnosed with Osteoporosis (not pre-osteoporosis) in the past 10 years?

NO: 23 persons

One person wrote: "No, but I am overdue for a bone density test."

Another person wrote: "No, I've forced myself to get a tremendous amount of weight bearing exercise over the years and my bone density test last year came out very dense. Then I broke my arm in June 2006; it was so dense it broke cleanly and went into my hand. I had to have two operations, and I had a tremendous amount of soft tissue injury, which is still extremely painful at times, at the end of March 2006."

YES: 9 persons

Author's Observations: This is 27% of the total respondents which seems significant to me considering that only 33 persons replied. I would make an educated guess that if hundreds of persons were queried, that the percentage would hold around this number or even go higher for several reasons: 1) More than 75% of people with EMS are women, and we know that more women get osteoporosis; 2) The majority of women with EMS are now post-menopausal or past age 50, so we know that bone density is likely decreasing in many in this age group; 3) Since many persons used steroids earlier on in EMS, and some still use steroids regularly or off and on, that would negatively influence the outcome, causing possible increased numbers with osteoporosis. 4) Because many with EMS are not able to get enough of the right kind of exercise and some cannot get any real exercise, this is going to negatively affect the number who get osteoporosis. 5) Chronically ill persons often do not eat a good diet because they don't feel well enough to cook nutritious meals, so that would negatively affect the outcome for some. And there would be the other factors that are the same for any group such as size of bones and heredity, diet throughout life, exercise throughout life, usage of estrogen or HRT for long periods of time, and other factors.

Is your condition being successfully treated?

Person 1: "Yes."
Person 2: "Recently diagnosed; treatment recently begun."
Person 3: "Yes."
Person 4: "Yes."
Person 5: "Being treated; don't know how successfully." Person also said they were diagnosed "mid-1990s."
Person 6: "No."
Person 7: "Trying, but not successful as yet."
Person 8: "No."
Person 9: "Yes."

(Optional to answer): Are you underweight?

Person 1: "No."
Person 2: "No!"
Person 3: "No."
Person 4: "No."
Person 5: "No."
Person 6: "No."
Person 7: "Yes."
Person 8: (No answer)
Person 9: "No."

A person who does not have osteoporosis wrote after this question: "I answered no [does not have osteoporosis], but I am underweight and my doctors don't like my BMI - I do. It has nothing to do with osteoporosis."


(Optional to answer): Do your doctors know the cause of the osteoporosis?

Person 1: "No."
Person 2: "Wasn't aware there could be different causes, so never questioned doctor regarding them."
Person 3: "Heredity and taking steroids for nine (9) years."
Person 4: (No answer)
Person 5: "Possible causes: some hereditary factor; over treatment for hypothyroid. Unwise to take estrogen because of LCIS; steroid use (during EMS treatment)."
Person 6: (No answer)
Person 7: "No, think all the typical things [causes]."
Person 8: "Heredity... my mother had it."
Person 9: "I'm still on prednisone."

UNSURE: 1 person

During numbing for dental work, have you ever had a reaction to the drug Septocaine? If you have not required numbing for dental work, please write N/A or Not Applicable.

Author's Note: I included this question because I had received mail from my personal Web site from a person with EMS-like symptoms who insisted that those symptoms had something to do with this drug. Since she wrote an interesting story and was an educated person, I thought I would include the question in the Survey to see if any persons with EMS had experienced problems with this drug of any kind. I didn't tell the persons queried why I had included this question. From the answers, it seems to me that most people have tolerated their dental work well or fairly well. It is true that many with EMS have trouble getting numb enough for certain types of dental work, but only one person mentioned that problem. I honestly don't think that most people ask dentists what drug is being used for numbing. It would seem that only if there is a reaction does the person definitely recall the name of the drug Septocaine, and only two persons of 33 really seemed to know the name of this drug. My conclusion is that it does not seem very likely that Septocaine causes EMS symptoms to worsen or causes EMS relapses. It would be wise, however, for persons having dental work requiring numbing to ask beforehand what drug(s) will be used and to tell the dentist of any past reactions with anesthesia, other relevant allergies, heart problems, asthma, other lung problems, etc. That is just common sense to me.

N/A (Not Applicable): 3 persons (who've not had dental work requiring numbing)

NO: 24 persons

Person 1: "I have had no reactions to numbing medications, but I don't know what drugs I have been given for numbing."

Person 3: "I do not know if it was ever used but I have had not problems."

Person 12: "I do need extra numbing - dentist said I have extra nerves in the face?"

Person 15: "Don't know what was used, but I had no reaction."

Person 22: "No, I have only one filling in my mouth put in around 1975."

Person 23: "I don't know if they've used that on me, but I've had no problems with dental work."

Person 24: "Just the usual numbing."

YES: 2 persons

Person 1: "Yes, nausea and light headed."

Person 2: "My blood pressure drops, and I have very slow breathing. They have had to come and give me oxygen. It still happens when I have dental work. They try and do very little work at one time - many short appointments."

UNSURE: 4 persons

Person 1: "I lost all of my teeth, except four front, bottom ones, at the onset of EMS."

Have you used statin drugs to lower cholesterol in the past five (5) years?

Author's Note: The reason for including this question is that some with EMS have told me via email that usage of statin drugs has increased pain to the extent they could not tolerate the drugs. Others have said they have much pain when on statins, but they can't tell for sure whether the statins are increasing their pain. I've heard a lot of comments about statin drugs from people with EMS and wanted to get some of their experiences on the record.

NO: 20 persons

Person 1: "No, I was not willing to take it because I did not want increased muscle pain."
Person 3: "I eat oatmeal every day to control cholesterol."
Person 16: "No, and I will not, since my mother had a horrible reaction that damaged her permanently."
Person 18: "Statins or niacin (drug form) have been offered, but I have refused. I've heard too much that is bad about statins from those with EMS. Also, one of my siblings has tried several statins and cannot tolerate any of them as he gets cardiac reactions. So I am using a special diet I have worked out and so far it is helping."

YES: 9 persons

Did you develop increased muscle pain from using a statin?

Person 1: "Unsure - muscle pain never consistent in location or intensity."
Person 2: "Unsure, but I don't think so."
Person 3: "No."
Person 4: "Yes."
Person 5: "Yes."
Person 6: "Yes."
Person 7: "Yes!"
Person 8: "No."
Person 9: [Although the person did not write "yes" - it's clear he had increased muscle pain for a while. See the next part below under Person 9.]

If you developed increased muscle pain, did you continue using the statin or did you stop using the statin?

Person 1: "Yes." (meaning she continued using the statin)
Person 2: (no answer)
Person 3: (N/A as the person reported no increase in pain)
Person 4: "Yes. I quit using it after I realized it was causing depression, then I quit."
Person 5: "Stopped." [using the statin]
Person 6: "Stopped it."
Person 7: "I stopped when I finally figured out what was happening. It almost killed me. I was on them for 5 months! My doctor says she has notes in her file that she told me to stop them immediately if I had muscle pain, but I don't remember her telling me that or being very definitive about it...." (She then went on to say that all this happened about 2 years ago and that she felt as though she'd entered a "black hole" at one point. Pain was excruciating, and a psychiatrist friend told her on a Saturday to stop and to call her doctor on Monday.)

"I'm now doing acupuncture and taking huge quantities of medicinal cinnamon and a special Wu Qui drink at night because my cholesterol level went up to 313 after I got off the statins. I haven't had the level checked yet because I'm afraid...." (She comments that she had been much more physically active prior to using the statin drug and says that maybe she will die of the high cholesterol "causing heart disease before EMS side effects can get me.")
Person 8: (N/A as the person reported no increase in pain)
Person 9: "Yes...... Doctor changed to a less expensive brand from Zocor a few years ago, and myalgia increased. There was a myalgia side effect in the literature. Went back to Zocor after a few weeks." (And the assumption is that the problem was resolved by this change, from what he has written.)


N/A: 2 persons

Person 1: (Person wrote N/A. I take this to mean they have not had high cholesterol, but I'm not sure.)

Person 2: (No answer given to question on statin usage - Person did not answer this question at all. I think they either accidentally skipped it or have not used statins, but forgot to write "No." If I had noticed this omission sooner, I would have contacted the person for a clarification, but I didn't notice it.)

UNSURE: 1 person

(I take this to mean the person is not sure if they have tried a statin in the past 5 years.)

UNABLE TO USE BECAUSE OF PREVIOUS EXPERIENCE: 1 person

"I am unable to take statins because they raise my liver enzymes abnormally high." (I don't know if the person has used a statin drug in the past five years or not, since they did not answer the question in a way that would tell me that. They wrote the above, so I know that at some time, whether 10 years ago, or more recently, it was determined that statins are inappropriate for them to use.)

Author's Observations: I think this is a touchy question for people with EMS because some persons were more emotional or emphatic with answers than with other questions. Because one of the listed side effects of statins is increased muscle pain, some persons can't tell if their perceived increased pain is due to the statin, EMS, or some other cause. Remember that some of these people are up in years now and have multiple diagnoses, not just EMS and one or two others. If you have osteoarthritis and EMS or Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthitis and EMS, AND take a statin - it might be difficult to discern if increased muscle pain is due to the statin. Plus, you are thinking you have got to lower the cholesterol, so you may just endure the increased pain. That is what some persons may be doing. It's hard to know, and doctors and patients may easily opt to stick it out unless liver enzymes become quite abnormal, for instance. Also, it's clear that some with EMS have already made up their minds that no matter what, they will never use statins because of the bad experiences of other relatives or others they know, or from fear that statins may raise muscle pain. I found it interesting that a couple of persons stated, either outright or implied, that statins may contribute to depression or cause depression. And don't forget the lesson of the person who was put on the cheaper statin: Maybe the brand name might be okay, but the generic might not. Or maybe one brand of statin might cause pain while another might not.

**National EMS Network, Inc. (NEMSN) - You can read the article on the Articles Page by Dr. Luis Espinoza that mentions a rare cancer.

**Booklet from 1991 Congressional Hearings

Title: FDA's Regulation of the Dietary Supplement L-Tryptophan, HEARING before the HUMAN RESOURCES AND INTERGOVERNMENTAL RELATIONS SUBCOMMITTEE of the COMMITTEE ON GOVERNMENT OPERATIONS, HOUSE OF REPRESENTATIVES, One Hundred Second Congress, First Session, JULY 18, 1991; Printed for the use of the Committee on Government Operations; U.S. Government Printing Office, Washington: 1992; For sale by the U.S. Government Printing Office, Superintendent of Documents, Congressional Sales Office, Washington, D.C. 20402; ISBN 0-16-038309-9

NOTE: You may be able to find a used or old copy at Amazon.com....I don't think the U.S. Gov't Printing Office sells them now.

E-mail Faith Rumph: faith_rumph@yahoo.com

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