Doctors

It is important for a CFS/ME patient to have a sympathetic doctor - a doctor who knows something about this disease. Often it is good to have a number of doctors. But first it is important to have one doctor who is willing to be flexible in treatments, and willing to sign requisitions for testing. Additionally, a patient might want to have a good allergist, or a doctor who knows something about gut dysbiosis - and another one who knows something about thyroid and adrenal problems. The list goes on. This Patient Advocate believes that finding and keeping a supportive doctor is difficult. Most doctors have never heard of CFS/ME, and if they have, they are disbelieving. The same holds true for lyme disease patients. It is really important to find help. This CFS/ME illness exists beyond most doctor’s learning - and beyond their experience. This PA has talked to many doctors and many of them are mute when you tell them the situation - and we know for sure that doctors are not usually at a loss for words. Finding good doctors is a major problem for the patient with CFS/ME.

There are a number of doctors who will deal with CFS patients, or who even specialize in this illness. They are willing to spend long hours with the patient. Most doctors are willing to spend ten minutes with a patient. Such a formula does not work with this illness. Instead the CFS doctor has to be more like a 19th century doctor. The CFS doctor works with symptoms, tests - and mostly with trial and error. Without a good doctor the CFS patient is at a great disadvantage.

If the patient is ambulatory, he or she can travel to a CFS doctor. In NYC, there are a number of known CFS doctors: Susan Levine, Derek Enlander, Leo Galland and others. People can say different things about each of these doctors - and they do- but each of them will wrestle with this disease – and that is admirable. In CA, there are doctors such at Hortoff, Chia, and Montoya. Cheney is in North Carolina, Shoemaker in MD, Patricia Salvato in Texas, Guyer in Indiana, Vrchota in MN, and Lerner in MI. There are others in the UK, Australia, NZ, and Belgium. This is not a complete list.

In general, these doctors are expensive. Sometimes insurance will cover costs of the physician and the tests. At other times, insurance, whether private or Medicare, will not touch these expenses. It is a running battle to get any refund. Most testing and treatment possibilities are seen as “experimental”. No one knows what causes this disease. There is no recognized pathology, no clear diagnoses and certainly no confirmed treatment. Consequently it always comes as a surprise when Medicare or private insurance will reimburse something. Their choices seem almost whimsical. There is no logic to any financial relief for this disease. Obamacare, in whatever form, will not make a dent in the problem of CFS/ME expenses. It is a difficult situation to get one’s mind around, but the patient (and the PA) are on their own here. Economics determines what tests and treatment are undertaken. CFS/ME is a very expensive disease.

The situation for a housebound CFS patient is more dire. This Patient Advocate is not aware of any doctors who will make home visits. Certainly in MN, with its managed care, home visits are off the table. It is difficult to get anyone with knowledge of this illness to come into the home. de Meirleir, based in Brussels, will make home visits in Norway and Australia. Ironically he is the best possibility to come to MN. He is interested in going where the action is. Others do not bother, and only see CFS patients who can struggle to their office. Of course, these doctors are afraid of having their licenses revoked for one reason or another. This is not an idle threat.

Various doctors offer phone consultations. These are less medical diagnostics, and more educational sessions designed to discuss possibilities. These phone consults, which are expensive, allow the patient or the PA to learn the specific options of treatment. Much of this treatment is general in nature, involving acupuncture, supplements, diet changes, resting and pacing programs, thyroid dosing or balancing gut ecology. It is like the 19th century - try this, try that. This instruction can be woven in with more specific diagnostic recommendations that will come from a doctor close at hand.

The PA, over time, has kept his eyes and ears open for doctors who might be helpful. Some doctors are more available that others. For instance recently this PA tried to contact Dr. A. Martin Lerner. The PA had heard of Dr. Lerner and his practice for a number of years. Dr. Lerner, an elderly gentleman, has the most experience in antiviral treatment for CFS. Dr. Lerner himself had CFS, and treated it with antivirals. The PA has seen Dr. Lerner give presentations in London in May 2008 and in Baltimore in June 2008. The PA wrote Dr. Lerner seeking a consultation with him at his office. Dr. Lerner replied, saying that this would not be possible. Eventually Dr. Lerner will produce a treatment DVD for other doctors and the PA will keep an eye out for this.

Other doctors will talk to the PA on the phone and in this way the PA will seek guidance - as the options are so limited. These conversations are not so much to get answers, but to confirm the direction of treatment. The PA is like a doctor’s assistant, or a fancy delivery boy, gathering information to present to his own patient’s doctor. In this fashion, the PA has bi- monthly phone consultations with one CFS specialist, phone consults or visits with his daughter’s physicians every few months, and educational phone consults with various thyroid specialists. These phone consults are helpful in setting direction for home treatment. However they are not a substitute for getting to a doctor’s office. If the patient is homebound the possibilities are limited.

In this way and others, the Patient Advocate will operate in the world between the chronically ill patient and the medical professional. The PA might talk to doctors, nurses and other medical personnel. The PA does many mundane things like ordering supplies, providing food and money, orders tests, follows up on tests, looks for interpretations of test results, looks for additional testing operations, and looks for additional monies to pay for this situation.

The PA will seek out contact with CFS doctors. In this regard the PA scours the field and identifies the more important or more knowledgeable physicians or researchers. The field of CFS is sufficiently small that the average PA will have no problem learning the ropes. This particular PA has struck up relationships with various people. The circumstances vary from situation to situation. The PA has established a telephone relation with a well-known CFS doctor. This doctor is open to phone consultation, which is very expensive. This doctor knows about the disease and various treatment modalities. He is cautious in his approach in using anti-virals. The PA has been talking to him regularly since August of 2007. The PA went to his office in June 2008 and will do so again.

This Patient Advocate travels to UK for the annual conference in London. During this trip he arranges for consultations with various CFS experts. These conversations, along with the cutting edge information in the conference itself, gives the PA a sufficient amount of actionable information in one area or another. In preparation for these visits, the PA arranges and copies the necessary test results. These must be arranged in a legible form. It is necessary to make selections based on what the PA thinks might be essential for a particular doctor to look at, in order to make some suggestions. The PA is looking to establish a relation with various doctors who have seen a great deal of this disease. The PA is looking for information and advice in various areas: viral treatments, gut dysbiosis, thyroid regulation, diet and exercise, sleep, and so forth.

So far, the Patient Advocate has been presenting the nitty-gritty of the life of a PA. The picture that he presents demonstrates that this occupation takes time – lots of time. It also takes lots of money. We have seen that the patient is incapacitated and cannot support herself in any way at all. We have seen that the patient lives in another city, a thousand miles away. All this costs money. What about food? What about supplements? Who pays for the heat? Where does the money come from to pay the doctor? It has been reported that an hour conversation with a good doctor costs $535, or a conversation with the thyroid specialist - $4.50 a minute. Who pays for this stuff? Where does them money come from? What about medicine, what about the phlebotomist? Surely insurance covers these expenses. Surely the PA and the patient don’t have to pay everything out of pocket? Who could afford such things? It is unthinkable. Certainly the government should help pay for this? No, the government does not pay a cent. No, insurance will also not pay a cent. You are on your own. Choices have to be made. These choices can have great consequence for the patient.

Disbelief

I got a call from a friend of a friend today. This person has a 26 year old girlfriend who has recently become sick. The couple was on a vacation in Tuscany when the gal got sick. Her chief complaint is migrating multiple joint pain and stiffness. She also has fatigue in the early part of the day, and light sensitivity. She has had two unspecified Lyme tests, one positive, one negative. Based on this, a doctor at a clinic started the patient on an antibiotic. Another doctor diagnosed Lupus and took the patient off the antibiotic, as antibiotics are counter-indicated in Lupus. The fellow was looking for some advice. All this was strange and mystifying to him and he did not know what to do. His friend Danny arranged for him to talk to me.

I remember when I too was in disbelief, but I dropped it pretty fast and decided to learn what I could about Lyme disease, CFS, ME and other strange diseases. I recommended to this fellow that he start reading about Lyme disease and find a good LLMD. None of these diseases are benign phenomenas -but Lyme is in a special category. You have a window of time in which to get a good clinical diagnoses and get treatment. Lyme disease can be treated by a good physician. It is necessary to go to a good physician who knows something about the disease. I suggested Dr. Daniel Cameron in Mt. Kisco, NY. There are many other in the surrounding states.

My job, under these circumstances, is to deliver a message. I realize that I cut right down to the fundamental issue and what I say comes across as pretty strong and perhaps harsh. I worry about this, about appearing "insane", but what I worry about more is the disbelief factor, which only guarantees years of deep and unabiding misery.

I had another friend this summer who got Lyme disease. His doctor put him in the hospital thinking that he had a blood clot. Hearing his symptoms, I told my friend that he had Lyme disease and to find a good doctor. A few months later he now is in contact with a good doctor, but it took time, as no one in modern life can believe the circumstances surrounding this disease and its treatment and complications.

Advice to a friend

What I can say is this, and I am very clear on my idea here because my life has been altered by my daughter's situation.(I am not complaining.) I think that the chronically ill patient has to attend to their illness full time, as though it were a brain tumor or a serious heart defect. I think treating the illness has to be put number one in the life of the patient, and any other position is taken at the patient's peril. I know this from experience. This disease can get much worse and then it can be life altering. A fellow at the CFS conference in Reno this spring told me this: "CFS is not the worst of the diseases but it is the cruelest". CFS robs the patient without the patient even knowing it. The patient can never quite grasp what is happening, and stands on the edge of a precipice but does not know it. The patient feels they are half well and getting better, while mostly they are in a stasis situation sitting on the edge of a sharp and deep precipice. The most unlikely thing will send them into the abyss. It is totally impossible for the patient to see this, and to see what is coming, or to see how serious this, is and to put it number one in life. The patient soldiers on, marching along to oblivion. I had a instinct with my daughter at the very beginning that this was something dangerous, but the half speed nature of it disallows the patient to believe it. This is one of the great cruelties of the disease - that it does not announce itself in a way that is believable and does not give sufficient warning, like a brain tumor does. But the consequences can be the same. This disease has the capacity to be life altering in all cases. Not all cases go this way, but there is no way to know how messed up your brain and immune system really are.

On more thing: don't expect anything from Obama and his bureaucrats - just like you wouldn't expect anything from Bush and his bureaucrats. You are on your own here. Don't expect much support from family and friends. They too have troubled processing this information. Even well-meaning folk cannot believe this disease. As far as they are concerned the patient is removed from the game of life. The CFS/ME patient is a non-player in the game of life. This is one of the harsh realities that the patient and the Patient Advocate have to deal with.

Thyroid again

Information about treating thyroid in the CFS/ME patient can be confusing. Perhaps the PA will be told that the treatment needs to be temporary, while at the next moment he is told that it is for the lifetime of the patient. Perhaps the PA will read that the hormone therapy will lose its effectiveness over time and there will be a back-siding, while at another time he will be told that the patient's need for thyroid hormone will diminish over time. These are radically different pieces of information and yet they are both there for consideration. It is confusing isn't it? Certainly one consistent idea it that the adrenals need to be supported when doing thyroid hormone replacement. This area of adrenal support is another nightmare, as it is difficult to measure adrenal function and so many doctors do not even believe in adrenal fatigue. There is no way to know which adrenal support is doing it's job and how well. Speculation is at its highest in this area of treatment. For instance my daughter takes a flash frozen live cell product from Douglas Labs, which is supposed to support the adrenals and help them heal. It is a very expensive product and there is no measurable or felt evidence that it provides any support.

Different thyroid hormones and their combinations have different and subtle effects and need to be balanced carefully. Most people with thyroid problems and CFS use Armour Thyroid, a desiccated natural product. However there are many exceptions and some used synthetics and synthetic combinations and others use Cytomel, either in low dose or high dose, depending on the situation. Sometimes a patient can be allergic or have a sensitivity to a thyroid or adrenal medication and get an uncomfortable feeling using it. At other times a hormone might not feel like it is doing any good, and the amount need to be raised. Raising the thyroid hormone to the optimal level is another tricky business. It is a delicate balance to find the zone where the thyroid is doing the most good and yet it is not provoking additional problems, like hyper feelings. It can take some time to get to the optimal level, and feel confident that the patient is really getting the maximum benefit of the treatment. The titrating up of the hormone is a trial and error process that is not without a welter of confusions, counter-indications and misdirections. For instance there are two additionally complicating situations: thyroid hormone resistance and reverse t3 syndrome. Both can be regulated by switching from Armour thyroid to straight t3 - either partially or completely. Any change is thyroid hormone therapy is fraught with ambiguity and a sense of precariousness. Testing of free t3 and free t4 along with antibodies and ferritin levels can give a modicum of direction, but nothing in which you really have complete confidence. There are objective targets to aim at in terms of hormone levels in the blood, but that tells you very little about what is actually in the tissue. For various reasons it is often difficult to raise the free t3 into the upper half of the normal range. This can be for various reasons, and for no reason. Certain thyroid/CFS doctors will discount the tests or ignore them completely, going strictly on patient improvement. If the patient feels better, if the patient's hypothyroid symptoms are diminishing, this is good. If the patient is hyper, this is bad - like that. Some doctors say that thyroid hormone is completely safe for the patient, others say that thyroid hormone therapy can cause osteoporosis and a host of other things. The Patient Advocate has to figure this out on his own. The bottom line in thyroid replacement therapy is that the patient or the Patient Advocate has to educate themselves on the risks and benefits of the treatment and learn all the ins and outs of therapy and work closely with a doctor. This really means that the patient has to use a doctor to guide the patient's own treatment. This is not as radical as in sounds. Every successfully managed type 1 diabetic in the world knows the most about his or her situation and makes all the major medical decisions, working with a good doctor. If the patient relies completely on a doctor in these complex self-managing situations, the patient will end up in the soup.

Gut dysbiosis

As my patient rests in her room there are a number of things that can be done for her. This does not include brain scans or sleep studies. The time for doing these things has passed. We missed our opportunity with these items, for better or worse. These tests should have been done when the patient could move around a bit. It is a lesson to be learned for others. Pay attention to this disease when you have the chance. Thinking it will go away on its own is wishful thinking. The patient has to get involved. All patients who improve from this disease get involved in their own betterment. Betterment will not come on its own, and it will not come to those who are not able to get involved. This disease is not for the faint of heart.

There are clear areas where the Patient Advocate and the housebound patient can work together. Many tests are available – blood, urine, saliva and stool samples – and can to be done in the home. In this regard we live in a quite amazing age. The problem with these tests is that they are deemed experimental and are not reimbursable in most instances - and don’t count on Obamacare to take care of this. Obamacare will pass over CFS/ME.

I have spoken elsewhere of the importance of assessing the thyroid, and regulating it, if it is determined to be necessary. It is best to work with a good doctor here. I have spoken about the importance of eating an organic diet, low carb, with modest animal protein and plenty of fresh vegetable. Drinking the right water is important. Attention has to be put on everything that the patient puts in her mouth. Don’t expect to hear much about this from a doctor. A few doctors – de Meirleir or Dr. Rae – work with a nutritionist. Many doctors are real squishy on diet and the Patient Advocate is on his own here. Fortunately there is a huge amount of information on the internet, although much of it is controversial. Sleep is another very important variable that can be dealt with in the home. It is important to find out if sleep apnea is present. Sleep apnea has a treatment.

Another very important area to look at is the gut. Many CFS patients have gut dybiosis or leaky gut. This is a situation where molecules pass through the wall and provoke an immune response. This is a situation where pathogens in the gut create havoc, producing excess d-lactate or hydrogen sulfide. It is very helpful to read Leo Galland’s article on leaky gut. http://mdheal.org/leakygut.htm Dr. Teitelbaum also is very good on the subject as is the CFS/ME doc, Dr. Kenny de Meirleir, who is seen as a strong advocate of the involvement of gut dysbiosis in CFS/ME.

The gut is an immense area containing 70% of the immune system. Supposedly if the intestines are laid out flat the surface they are as large as a football field. You can believe this or not. The intestines are a bit like modern day Iraq or Afghanistan, a place where contending forces are at work, where real battles between the forces of good and bad are taking place.

All this activity in the gut is complex and intertwined, often in ways that are not completely understood today. However much work is being done in this area and the connection between various diseases and problems in the gut is being accepted more widely. Ideas that only a few years ago were seen as being kooky are gaining a foothold in standard practice. Years ago, in a different set of health issues, this Patient Advocate read a book by Oliver Sachs called Migraine. Oliver Sachs is a truly fantastic person. This PA was surprised by the connection that was drawn between the gut and the brain in migraine disorders. At the time, it seemed like such a strange idea. The brain is heralded as a complex and important organ, but the intestines do not have the same panache, at least not in modern times. It is all so messy. It was seen as quite different in ancient times up through the nineteenth century. On a humorous notes I remember that fantastic scene in Moliere’s Imaginary Invalid, where the doctor carefully stirs his patients’ diarrhea with his finger, holds it up, and then tastes it.

Diet has an important influence on gut ecology. Everything that the patient puts into her mouth has to be scrutinized. In order to try to determine what is best for the patient, a food allergies test from Genovas can be done. This will tell what foods provoke allergic reaction in the patient - and these foods can be diminished or eliminated. Various allergy clinics deal with food allergies. My patient has been tested extensively for reactions to mold and foods a number of years ago with an allergist, Dr. George K. in Lacrosse, WI. Dr. George K is an excellent doctor, thorough and caring, among the very best imaginable.

Gut dysbiosis can be examined with various tests. Primarily among them are tests done by Genovas. These involve taking several challenge items and measuring the results through a urine test. An Immunobilan test is offered by Redlabs. This test that measures certain IgAs and IgMs. These reading indicate whether provocations exist in the blood, through leaky gut, or whether there is pathogenic activity within the gut itself. Once problems are identified they can be treated. A very simple home test for excess production of hydrogen sulfide has recently been developed. Whether this will have any bearing on treatment remains to be seen. There is some speculation that high levels of enterococcus and streptococcus produce an excess of H2S, and this in turn unleashes a cascade of symptoms. Treatments are currently being proposed for the problem, once it is identified.

The backbone of testing the gut in the CFS/ME patient is the CDSA. This test is offered by several labs, and they differ slightly one from another. Genovas test has been around for a number of years and was recently expanded to a more comprehensive test. Metametrix introduced a test a few years ago using DNA sampling and claims to get the most accurate results. The Metametrix test is called the GI Effects test and measures a host of elements. It is also a relatively patient friendly test. A test also is offered by Diagnostechs called the Expanded Digestive Health panel. This test can be procured on the internet without a doctor’s prescription. Finally there is a Microbial test available from R.E.D. labs in Belgium that directly measures streptococcus and enterococcus.

These tests look at a number of key elements of the gut: potential pathogens, good and bad bacterium, candida, and parasites. Any number of these items can be responsible for destabilizing the intestines and causing dysfunctions of the immune system. Treatments are available for a number of items. Parasites can be killed. Candida can be pushed back with an antifungal - diflucan or nystatin. The relief from candida often is temporary, as some patients, like my daughter, have a high sensitivity to candida. Candida is always a threat to come back. In my patient’s case, treatment with Dyflucan or nystatin brought no noticeable benefit. However the benefit to some can be quite dramatic, once the overgrowth of candida is killed.

In the case of Candida, diet plays a key role. The patient has to eat a diet that starves the suckers. Sugar and anything relating to sugar is the primary culprit here. The patient has to be in the mood to give up “a lot” in order to get the gut in order. Major and continuing dietary changes are necessary. Many folks do not want to make these changes, even though improvements can be seen in those who tighten up their diets.

Many CFS patients eliminate dairy, wheat, sugar, caffeine, alcohol, flour, high carbohydrates, fructose, and nuts in order to get the gut under control. Any potential aggravating source is eliminated. Others will eliminate particulars that have a specific deleterious effect on them. Dr. Myhill recommends eating a Stone Age diet.

Once gut problems are identified, they can be dealt with, either with short-term antibiotics, diet, antifungals, antiparasitics and the introduction of good bacteria, i.e., probiotics.

Probiotics.
In the gut ecology of the CFS patient, the bad guys are seen as winning. Whether this is the cause or an effect of the disease pathology, no one knows. However a number of doctors and researchers now believe that autoimmune diseases originate in the gut- and to defeat these diseases one has to start in the gut. Much of the cutting edge work in Autism involves diet, food allergies and gut ecology.

In this intestinal battle, bad bacteria gets the upper hand. This situation can be with or without overt symptoms. The patient must take step to reverse this situation, and move the gut ecology to a more harmonious balance. The primary tool in the battle, beyond those already mentioned, are Probiotics, Probiotics are good bacteria, found in yogurt and other foods. They also come in supplement form, and in a large variety of combinations. Consuming probiotics is seen as a direct way of balancing the good bacteria with the bad. Probiotics include lactobacillus and bifidobacterium, of different species and in different combinations.

Various probiotics are seen as being good. These include Culturelle, Klaire products, VSL#3, Mutaflor (shipped from Germany), Align, and a host of others. Recently there has been a heightened awareness of lactobacillus that create d-lactate. Excess d-lactate, along with excess H2S, is seen as a marker for increased symptoms. CFS patients are looking for probiotics that do not promote d-lactate.

Good bacteria has to both be introduced into the gut and also allowed to colonize there. Some probiotics just go right through the system. Various elements prohibit the colonization process from taking place and this has to be dealt with. Repeated stool testing can gauge efficacy of the administered probiotics. Probiotics are an amazing subject about which there is much to read. A great deal research is going on at the present time looking for association between particular probiotics and specific diseases, ranging from cancer to schizophrenia. http://qualitycounts.com/fplacto.html

coQ10

This Patient Advocate has been reading about co-Q-10 recently. So many of these CFS topics come in and out of focus, almost on a rotational basis. There are so many shifting elements to this disease. (Recently Dr. Paul Cheney gave the impression that taking coQ10 might be counterproductive. This was after years of using it on CFS patients.)

My daughter's coQ10 levels were low in a Biolab test in November 2008. Was the coQ low because the specimen was degraded on the long flight across the Atlantic Ocean? Is this test accurate? Do the results have any relevance? Is there a treatment? There is some evidence that supplementing with coQ10 can raise the levels in the tissue of people who are deficient in coQ10. Is my patient not taking the right kind of coQ or the right amount?

This PA gets the sense that coQ10 is important for a variety of functions, particularly mitochondrial and brain function. Dr. Myhill believes that higher coQ10 blood levels are helpful to mitochondrial function.

What is a good coQ10? The PA learns in reading that there are two types of coQ - ubiquinol and ubiqinone. Each are touted as the real deal.

Information is available online. Here is a recent article with Dr. Judy:
http://www.alternativehealthjournal.com/article/ubiquinol_and_ubiquinone_what_s_the_difference_and_why_should_we_care/2740

Dr. Stephen Sinatra promotes the use of coQ10 in combination with the carnitines, d-Ribose and magnesium.

A good place to start reading is:
http://lpi.oregonstate.edu/infocenter/othernuts/coq10/

The PA reads about the various versions of coQ and lands on two that his patient will use in an effort to raise her blood levels of co-Q. The first is a capsule ubiquinone called CoQMax CF, by Xymogen, and the second is Liquid QH™
Liposomal Ubiquinol CoQ10.

Coincidentally a study just came out in July 2009 from Dr. Maes observing that coQ in low in CFS patients: MAES M.:July, 2009. Co-enzyme Q10 deficiency in myalgic encephalomyelitis

It was helpful to this Patient Advocate to read this study and this study substantiates the idea that going further down this line could be beneficial.

Now the Patient Advocate will find out about testing for coQ10.

Typical days in PA and MN

What is the average morning of a patient advocate? Well, the PA will get up and start his day like everyone else. He will have his coffee. Rather than start on his regular day, his old life’s concerns, he will launch into the newer aspect of his personality- the Patient Advocate identity. Most likely, early in the morning he will get on the internet and noodle around for a few hours. This involves reading various sites and following up on various items, almost at random. It is not possible to miss a day of doing this. Much of the important information is accumulated over time, and the ability to realize any meaning does not necessarily come from the particulars - but from the particulars as they accumulate over time and as they build. The PA might pick up an item about garlic as a killer of pathogens one morning and following this thread out into the large field of the internet might or might not reinforce or yield some information that can be registered and recorded. Often the patient advocate will spend time writing notes or writing instructions to the patient. The PA might check his list of items and seek out appointments with doctors or copy and organize test records. Or the PA might make plans for future tests or read about the tests themselves and what benefit they might or might not bring. This kind of activity will go on for several hours in the morning and come to an end half way through the PA’s day. There is no school to which you can go to learn to be a PA. There is no test to take to determine if you have the requisite qualities to be a PA. No license, state or federal, is necessary to pursue the career as a PA. Who assesses the job efficiency of a PA? Perhaps there is a state agency that overseas the work of a PA, makes sure the proper forms are filled out, the taxes are paid?. Perhaps this same agency assesses fines in the case of a PA overstepping the proscribed limits of behavior? No, no such thing exists. You might still want to know how the job of a PA is assessed. Surely there must be someone who can judge the quality of this job – surely some committee can be formed and at least a self-assessment test filled out by the PA. No, this does not happen - but you still might here a PA in a café saying, “I feel good about myself and I think that I do a good job” But is that sufficient? You decide.

And notes of one day, among many, from Minneapolis:

A day, or part of a day
For instance yesterday I got up and went to coffee and read the paper for a few minutes. I had scheduled the phlebotomist to come slightly after 2. I had to confirm with this gal that she was coming. I had to wait to do this to make sure I didn't get a call from my daughter indicating that she herself was going to cancel. When the later morning arrived I got the drift that my daughter was going to be able to do this, as she had not called me. On the phone with the phlebotomist I had to go over the test that were on the requisition sheet. There were various questions as to which blood vials to use. Some tests, like the G6PD assay need to have a lavender top, also known as a purple top, with EDTA in it, a kind of preservative. Each test takes a different kind of vial and a different amount, say 3ml or 5ml. Earlier in the day I had gone over this on the internet, looking up the various configurations so that I got them right and so the phlebotomist got them right. About this time my phone was running out of batteries as it is near broken, so I had to head for a coffee shop so I could plug in my phone and make sure I can make and receive calls. After getting things straight with the phlebotomist I drove over to Clinic 1c at F. Hospital about ten minutes away and picked up the signed requisition from Dr. T's nurse. I had written her an email last week and they said they had it at the front desk of 1C. When I got there they had trouble finding it, but, as it was so important, I was persistent and they got ahold of it and off I went. So now I had the necessary requisition in my hand, which I was too late arriving in MN on Friday to pick up and now I had things straight with the phlebotomist and it looked as if the patient was going to be able to do this blood draw. I was scheduled to meet the phlebotomist outside of my daughter's house at shortly after two, as it is important that we not schedule these blood draws to interfere with her boyfriend's naps that take place between 12:30-2. We had a number of other tests to do at the same time and these each involve reading direction, arranging again for the correct vials - some need to be partially refrigerated and others need to be spun - like that. The forms all needs to be filled out and the billing arranged correctly and the doctor’s signatures gathered, all of which or most of which I did before. This time one test kit went to NJ and I had to call the lab to make sure about details of the requisition and the mailing and the payment. This particular test is fedexed overnight so I went down to find the FedEx central shipment place in South St Paul. I was really going there to check on another shipment to UK, which is more fractious. I previously had ordered these insulated boxes, as the sample need to go at ambient temperature and can't be frozen or heated up too much. FedEx has all sorts of rules about shipments, especially overseas with medical products and you need a triple form commercial invoice as well as the regular international waybill filled out. So I wanted to go to the source and make sure that this was going to be right, since I had gone to two other FedEx stores and gotten different stories in each one, including that they could not do these shipments at all. All this was at the end of a few months emailing and work to get this particular test done in UK and as I read my email yesterday morning early I found that the nice fellow at Biolab UK had written finally that the particular test that I wanted could not be shipped to Biolab any more but had to be shipped to Acumen. So I had to go back and change my entire invoice and run back to FedEx to make copies again and since my cell phone either was out of batteries or I was unfamiliar with the overseas calling, particularly the expense, I drove in hurry back to a friend's to make a few calls to UK. I went into her place and her dog, which had eaten a whole bunch of lamb bones two days earlier had thrown up all over the place. So I was cleaning this up as I was making several fruitless calls to UK, but finally got through to someone who told me what to do, or at least I think what to do. About this time I was gaining confidence after losing confidence and things seemed to be coming together although I did notice that the Acumen lab in Devon UK does have a P.O. box number, and I knew that FedEx does not deliver to P.O. boxes. So it was back to my daughter's house where I waited outside for the phlebotomist and she arrived right on time. This phlebotomist is a really good and helpful Christian soul. I had to go over with her again about a bunch of details as one of these tests has a special UK vial that needs to be filled and other details that I needed to get her. The blood draw was done successfully and I got my particular vials and my particular boxes and forms and I was off to FedEx. The patient sent out the other test kit supposedly and the phlebotomist took her stuff to M. Hospital lab, which usually is routine. I of course had a terrific struggle back at the central FedEx place in spite of having been there earlier in the day. This time is was a different and unhelpful woman, but I finally got the forms and vials and packing and plastic bag and instruction letter and requisition form together and packed correctly and off it went. I now know this particular routine- and I have no idea if it will really get to the lab it is heading for. At this point it was 3 and I am sorry but I have leave now. Sorry. Incidentally do not take the end of this writing episode to indicate that my day as a PA was over. It continued on, that day and the following days in MN and then back in Philly and NY.

Much of the time of the PA will be taken up with routine tasks. For instance just now the PA went to a college bookstore and purchased a binder and dividers for the test results that will be sent to Dr. de Meirleir. The PA will craft a letter, long enough to get across the essentials, short enough to be readable by de Meirleir, should he chose to read it. This is not the first time that the PA has crafted such a letter. He has done it on numerous occasions. The PA is never convinced that the doctor ever looked at the introductory letter or any of the tests. However the PA is not convinced that this is a necessary part of the equation. So the PA buys the proper folder and goes on to the office to use the college Xerox machine to copy the tests that he has chosen to send on. Fortunately for the PA he has a copier which he can use free of charge. He also has a fax machine that also is free for his use. Many faxes of tests results over many years time have come through this machine. After copying the tests, the PA continues on his bike and organizes the folder, and then the PA records his views and activities on this journal. During this entire time the PA gets the sense of having done a task and having done a task pretty well. The PA has the routine down and all that it takes to implement the routine is a little time and money. This goes on every day. The PA has his tasks every day, and the list of things to do stretches out into the future.

Testing

Testing is the bread and butter of CFS investigation. While some believe that testing is useless and trial and error is the answer, this Patient Advocate believes in testing. This PA is in line with the approach of the sponsor of beatcfsandfms.com. This PA believes that the key to unraveling the disease is through extensive and repeated testing - and then a judicious trial and error. It can probe different areas and give direction, if not for now, for later.

For instance, my daughter does “regular” testing that includes CMP, CBC, thyroid panel with antibodies, iron panel with ferritin, A1C, vitamin D, and liver panel. Additionally my patient often does Coxsackie B, SED rate, CRP and EBV antibodies. A few of these tests are sent to special labs. For instance the Cox-B and EBV antibodies are sent to ARUP in Salt Lake City to do tests recommended by Dr. John Chia and Dr. A. Martin Lerner, respectively.

The following paragraphs are taken from notes made over a period of years. They include repetitions. Much of this task of being a Patient Advocate involves repetition.

Recently my patient has repeated a few key tests Redlabs (now know as VIP labs), in Reno, NV. Redlabs is an extension of Dr. De Meirleir’s operation in Belgium, and they provide a key service for CFS patients in America. They primarily test for RnaseL Elastase, Immunobilan, and metals sensitivity (HELP or Melissa). This is the only lab that provides such testing in the US.

My patient is housebound so a phlebotomist comes into her home to draw blood. The patient and the PA go carefully over the test instructions. The package is sent overnight to Redlabs. My job is to keep after the shipment. Sending overnight blood samples is not without problems.

The Patient Advocate calls Redlabs to find out if they have received the sample in a timely fashion. It is important that the blood sample arrived within 24 hours. In this case, after leaving several unanswered messages, the PA learns that the vials had arrived and that the work on them had started. The results will be faxed to the doctor in two weeks time. The PA duly notes this and phones back in two weeks. The NK cell and Immunobilan have been sent to the doctor. The RnaseL will take a few more days and it is suggested that the PA phone back on Friday. Meanwhile the PA goes after the doctor’s office and again has to deal with a machine. The PA wonders if anyone will pick up the message and certainly the PA has no confidence that they will call him back. Often calls to an office machine go unanswered. The job of the Patient Advocate is to keep after these offices to fax the test results.

The PA must be aggressive and be willing to irritate people with polite assistance. A particular lab might identify you as a PA and try to shut you down immediately. They are used to talking to the top dog. They don’t like little dogs. However there is information that they are allowed to release. The PA has to keep after them. Leaving messages is for the birds. They will not be returned. You just have to keep calling.

Once you identify that the tests are in a particular office, and once you get to talk to a real person, then you try to get them to fax the items to a particular number. Sometimes this goes smoothly, but often it does not go smoothly. Perhaps I am in NY doing another job that is parallel to the PA job: raising money to pay for this “research” and treatment. In NY I do not have a fax machine. Perhaps this is an oversight. Perhaps I should have purchased a mobile fax machine to carry around with me. Instead I have the fax sent to a corner store. I walk down and talk to them, telling them that I am expecting a fax. Often, when I drop by later, it still has not arrived. This can be for any number of reasons, as you can imagine. At other times I am in MN. Here too I do not have a fax machine. In MN I use my office away from home, the local Kinko. Sometimes the fax shows up, at other times, no. The majority of time I am in Haverford PA and I use the fax machine at the local college. Gail H. is very helpful with informing me of an incoming fax. The other gal, while polite, has slight interest. I have formed a friendship with Gail H, that allows her to help me out. Needless to say I pay the college nothing for the use of their fax machines, thinking instead that it is a professional service provided to me for my “academic research”.

Among many other things, the Patient Advocate will follow up with various labs to find out when the tests are complete. You might ask why is this necessary? I will tell you. It is necessary in order to get to the next stage: hassling the doctor’s offices for the results. If you did not follow up in an aggressive manner, you would never, ever, get the results. And let us remember that these tests are not cheap. The recent Redlabs work is going to cost around $1200, and the chances of insurance reimbursement are zero. Both private insurance companies and Medicare are allergic to paying for CFS/ME. This is not surprising as the United States Government medical wing, the CDC, cannot come to grips with CFS/ME. To them it doesn’t exist.

This test will confirm an elevation of RnaseL, as well as equivocal NK cell function. Additionally my patient did a repeat Immunobilan test to determine IgA and IgM for gut dysbiosis and leaky gut. The tests are done to get an angle on the viral end of things

Different situations require different solutions. Oftentimes the solutions are complicated and detailed and confusing. For instance the PA might want to get a certain blood test or two done on the patient. On the surface this might seem to be a simple task. However, it is far from being simple; it is a nightmare. The patient in this case is homebound. The patient’s case in itself is precarious. The lifeline to drawing blood is a phlebotomist from a local private services. At the beginning, the phlebotomist charged us $50 for a draw. Later she increased it to $80 for special times. Now it is $80 for all times. The phlebotomist used to have a fax, but that no longer works. Instead the phlebotomist has a cell phone that she answers when she feels like it. Often the PA does not hear back from the phlebotomist for a week. The appointment with the phlebotomist is apt to be canceled by either side. Perhaps the patient does not feel up to the draw; perhaps the appointment interferes with the patient’s boyfriend’s nap; perhaps the phlebotomist herself is sick or has taken a fall. Are you beginning to get the picture? Let me draw it out further for you. The PA lives in Philadelphia. The patient lives in St. Paul MN. There is one thousand miles between these two cities. It is a three-day drive, or a three-hour plane ride. Plane tickets need to be secured by the PA so that he can be present for the blood draw. In other words, the PA is not overly excited about spending five hundred dollars and spending a number of days MN in order to have the blood draw not take place. I can hear you now asking the obvious question. Why is it necessary that the PA be present at the blood draw?

That is a good question. Usually it is not necessary. Usually the phlebotomist takes the samples to M. Hospital, where they are processed. However this current set of tests is not the routine to M. Lab. This set of tests go to Quest in New Brighton, MN and needs a delivery boy. The Patient Advocate becomes the deliver boy. On a certain Monday I meet the phlebotomist outside of the patients’ apartment. It will be sunny, raining or snowing. Who knows? After the draw the PA will scurry up to Quest Diagnostics to give the samples to Nurse L. Quest is in New Brighton, twelve minutes away. The PA has scoped out the Quest location and knows how to get there (even though he is from Philadelphia), but will need to check for highway construction. The blood has to get there in 15 minutes. Nurse L. has helped me with these tests before. Nurse L. is a great helper, one of the best. I have called Nurse L. many times, just as I did over a year ago. I remember then riding my bike down near the river in St. Paul and hearing my cell phone; I stopped my bike at the side of the road and tried to pull it out in time to get the call. It was Nurse L. returning a call, and everything was working out, the blood was on its way to CA.

This was the second or third time that these labs go to Focus Labs in CA. The first time they were sent to the wrong lab in CA and that was a useless enterprise. This PA was interested in getting results from the lab used by Dr. Montoya.

Just this last week there have been a number of calls and emails going back and forth between Nurse L. and the Patient Advocate. Nurse L. wants to make sure that everything works out. Nurse L. informs me that she needs the doctor’s requisition ahead of time, and also the specific test information so that she can fill out the forms and have everything ready to get in the overnight mail to Focus Lab in CA. Nurse L, nor anyone at Quest has ever done these tests, so this is a new one for them I faxed Dr, T and Dr. G, hoping that one of them will come through. So far I heard from Dr. G and sent that along to nurse L. Nurse L is set. Dr. T has not responded. I think she is getting less and less interested in this case. Hopefully the patient will get better - so that she can get another doctor, a doctor who is a little more responsive and human. Everyone has their problems, but Dr. T is like Dr. Gaschet. She is afraid of the sight of blood. Anyway nurse L is set now. The phlebotomist can come at the proper time. The phlebotomist knows what vials are necessary and the PA know where Quest lab, so this test has a good chance of getting to Focus Lab in CA in good shape. The preparation takes time. Information is difficult to come by and the PA must nose it out. A few people might be slow on the uptake so the PA needs to be a little bit pushy. What is the alternative? I am paying over $500 for a ticket to MN - so this needs to happen.

You might want to ask what is this test? This time we are doing Focus lab test number 2340 – Chronic Fatigue Panel III. A certain amount of research as well as phone calls determines that this is the test to do. It includes EBV EA, EBV IgG, EBV IgM, HHV6 IgM, IgG, CMV IgG, IgM, Coxsackie B, Interferon Alpha and NK cell activity. We recently did NK cell through Redlabs - so this test is a backup of that. It is like you cannot get enough information on these items. Either that - or none of it is worth anything. Which is it? One year ago we did the EBV and HHV6 tests. Focus is the lab used by Dr. Montoya - and they tend to get higher titers than other labs. With these results the PA can make comparisons, and Dr. G can make decisions about going forward with antivirals. So that is one of the tests that we are doing. Are you interested in hearing about another one? This is fascinating isn’t it? One to the problems with being a PA is that the PA cannot get enough of this stuff. I am glad that you feel the same and want to hear more. Here it is:

In a previous paragraph I have spoken about the blood work that needs to be done and the arrangements that this process takes. Scheduling the phlebotomist is pretty easy. It is important to get a good phlebotomist, as this makes a big difference. I suppose now that you are asking, what is the big deal. The person just takes blood, what is so hard about that? Well I can tell you that it makes a big difference. Phlebotomy, like many things, is a special skill. The phlebotomist needs to be able to establish a bond of trust with the patient and reassure that patient that all is going to be well. For instance we already know that taking blood out of a patient is a stressor. In this disease almost anything is a stressor. The fact that this phlebotomist has established the trust of the patient and draws blood very easily and well is worth its weight in gold. We have a terrific phlebotomist, the strongest link in the chain.

Also the PA must press on with testing and various programs. It is the nature of the disease that not many options are viable. Very few therapies bring results, and often they are not noticeable. Very few tests shed much light on the situation, although it is possible to get a slight angle on one particular aspect or another. The bottom line though is an expensive form of disappointment.

At other times, the PA must force the situation to do tests that in their very nature can bring upset with the results. Take for instance the Translocator Protein test from Acumen labs in the UK. This test on my patient yields very depressing and discouraging results. It indicates, to the degree that it can be believed, that the functioning of the mitochondria is very poor. Certainly the condition of the patient is reflected in this test. What the exact cause is or the exact treatment is, no one knows. What is clear is that something is remedially messed up. Certain parts of this negative result are more curable than others and can be measured again.

Recently we have undertaken to repeat this test. The hope is that various parameters have improved with treatment. The symptoms of the patient meanwhile have been on a slight upward tick. As with other tests, perhaps an improvement can be sensed. On the other hand, there is no guarantee of improvement in any parameter, and the picture also might be drawn the same or worse. In a way, it seems preferable to not repeat this test and just hope for the best. However, believing that the truth holds hope, the PA forces the situation, spends the additional $1000 plus $250 expedited FedEx shipment in order to get more information -in hopes of being able to draw a more perfect picture. Certainly one would want proof that basic parameters are better - SOD, CoQ, magnesium, B12 and thyroid. Spinning off these improvements along with other therapies, one would hope that time itself would aid in the healing. So the Patient Advocate has anxieties here, about doing these tests and about fielding the results. Doing these tests disturbs the life and sleep of the PA. Just the filling out of the forms and the drawing and shipment is a big problem. Imagine finally getting the report back, and trying to sift through the results. It certainly is possible to discount the entire enterprise and hope for the best, in spite of the results.

But what about doing this test, this set of mitochondrial tests in the UK. How does it happen? How can you get blood samples from here to the UK and have legible work done on them? As usual arranging for this test takes a great deal of research, as well as a great deal of communication with folks in the UK. My patient was one of the very first USA persons to do this test in the UK. My patient has a very hip PA.

The Patient Advocate will read the results of this first test, almost two years ago now. The results made for disturbed reading not only because they were difficult to understand (the idea of the mitochondria itself is incomprehensible to the PA), but also for the problems that they announced. Two years later, the PA still reads through the detailed analysis trying to make heads or tails of this essentially very bad news. And this is only the first test. The second test was done almost a year later, and was more specific and stranger in its negativity. The upshot is that the PA wonders how much damage has been done here and is any of it correctable? The PA understands that this test goes into one disturbing area of CFS, but perhaps not an essential one. The subject is disputed. Other CFS doctors emphasize other tests. Only a small fraction of CFS patients get this mitochondrial test done. The real implication of the test is unknown. However, with this in mind, the PA is looking for two things in repeating this test. The first is confirmation of the initial results. The PA knows that tests are tests and they do need to be substantiated. The second thing that the PA is looking for is improvement in a few areas, indicating that these therapies are making inroads into the pathology of the disease. On the one hand, the PA does not want to look, or the other, the PA does want to look – dismissal, fear and hope sit side by side on this one.

Most of the other test items of CFS are vague and offer the hope or possibility of getting around something. This mitochondrial test is frightening in its specificity, and in the possibility of no change or a worsening of the test results or a broadening, without any significant dent being place on the pathological entity. Still the emphasis has to be placed on the possibility that sections and subsections can be identified and dealt with.

The PA must arrange for test kits to be sent to the patient. These might be from Vitamin Diagnostics, Diagnos-techs, Viracor, Metametrix, Genovas, LabCorp, Acumen, Biolab, Redlabs Belgium or other labs. The PA must arrange for requisitions from doctor’s for tests. The PA must chase down test results. The patient can do various tests directly. Often they are recorded online. Often the situation does not work very well and the PA must make an effort to try to retrieve the test results. At times this process can take days or weeks.

The PA has to keep all variables in mind. The PA must pour over test results and think about the implications. For instance just today the PA has been examining a test result from about a month ago. The PA looked at this test result when it came in, copied the sheets and sent them to the various doctors. At times the PA might be able to get an interpretation of them, but more often the PA is on his own, and he must nose out by himself what these tests mean. Often it is clear-cut. It is obvious when a selective IgA deficiency shows up, particularly when it is not the first time. Viral titers are another thing. The quest for a viral involvement goes on and on, with contradictory interpretations. Things come and go like in an inkblot drawing. Everything is shifting, nothing is clear. For instance take the instance of Coxsackie B. What to do with this? Does my patient have coxsackie b involvement or not. Does my patient have lyme disease involvement or not? It is difficult to tell.

Recently the patient has had a series of blood tests done. These tests are both routine and specialized. The routine tests go off to various places including ARUP labs in Salt Lake City, Utah where EBV and Coxsackie B panels are done. The EBV panel is a special kit by The PA writes up the request for the physician and faxes it to her office. In time the signed requisition ends up at the patient’s home. The patient arranges for the phlebotomist and the blood is drawn. Off it goes to various labs. In time the PA will have to go after these results. Otherwise the PA will never see them. They will just disappear into a drawer. For instance it has now been two weeks since the blood has been drawn, and there is no sign of the routine part of these tests. This part of the tests takes a few days to process. Sometimes the results are mailed to the patient’s home. At other times they have to be extracted from the physician’s office. This is the way that it is done in MN.

The other set of tests are sent to Redlabs (now VIP labs) in Reno and are reported back to a different physician. The same problem presents itself. How does one get ahold of the results? Getting the tests done themselves also takes effort. Part of the problem is that it is the Patient Advocate’s idea to have these specialized tests done. Therefore it falls upon him to get the test kits, then to have the doctor sign and fax the requisition and to make sure that the blood gets to the lab in a timely fashion - and that the lab is clear on the correct tests to be done. This all takes a great deal of time and many different phone calls, as both offices, the doctor’s office and the lab office, are partially dysfunctional. Then there is the problem of having to retrieve the results from the doctor’s office. And then there is the problem of determining what, if anything, the test results might mean.

Certain things have changed since the last Translocator Protein test of one year ago. In the first place the patient is now taking a regular dose of thyroid. A year ago this was not true. In January or February 2008 my patient got on 120 mg of Armour. In the more recent Translocator Protein test we would look for an elevation of the low levels of cristae. Low levels of cristae are associated with poor thyroid function. That could be one positive step. We have another test that indicates a higher ATP over the last year. Perhaps this test also would show betterment in ATP production? What we can make of the DNA fluorescence binding, who knows or God knows? We might look for decrease in calcium at the outer Mito membrane. At the same time as beginning Armour, my patient started the methylation protocol. Already it has shown some benefit and will continue to do so. It might help regulate this high calcium. The increase in glutathione, indicated in the Vitamin Diagnostics test, also might be helpful in getting some of these substances off the Translocator Protein function. My patient now uses nickel free cookware, so maybe the nickel will come down, and also she is doing the FIR sauna. My patient also takes a detox cocktail and the methylation protocol and Yasko protocol is seen as a detox element. We will see also whether the potassium or zinc will get better also. Getting rid of the nickel will be important. So we shall see.

It turns out that the more recent test for mitochondrial function has improved. Indeed the cristae have improved, the nickel and pbbs are gone, the ATP is functioning better and other parameters are improved. The use of the FIR sauna, the avoidance of stainless steel, the Myhill energetics, the methylation supplements, all seem to have helped to bring improvement. The question is, when will the fatigue lift?

We live in a quite amazing age, one where many sophisticated tests can be done out of the home. These do not include important tests like Echo tests, or SPECT scans, or sleep studies. It is important to do these items is the patient can get to a hospital. Once the patient becomes too sick to go out, this avenue is cut off. It is an important argument to press forward when the patient is half sick and get what information is possible. It is not a great idea to sit around and wait. This disease can get worse, and often does, in spite of rumors that it does not worsen, or is not a progressive disease. Those patients who do not give this disease its proper respect will pay the consequences. You must do things when you can. If you do not do this, the patient paints themselves in a corner.

My patient also regular does tests that measure gut ecology. These can be done through Metametrix’ GI Effects test or Genova’s CDSA or Redlabs Belgium’s microbial stool analysis. Various pathogens, parasites, candida and a host of other items can be done. These can be very important tests as can saliva tests from Diagnostechs measuring cortisol or blood tests from Vitamin Diagnostics measuring methylation, ATP and NADPH. Primary home tests can be done with organic acids and amino acids from various labs. These tests provide important information on various urinary metabolites both for diagnostic work and for tracking.

An amazing little test is the Immuknow test from Viracor which measures ATP, and is used mostly for transplant patients, to monitor treatment. Dr. Ablashi told me about this test, which is used by a few CFS patients.

There are other important tests, and you can nose them out.

The Patient Advocate and the patient have an array of home tests from which to draw. Collectively these tests provide valuable information that circles around the edges of this illness, the center of which remains unknown. In approaching this kind of testing do not expect much help from either Medicare or private insurance. Occasionally they will make a mistake and give a reimbursement, but I don’t count on it. Instead I put my mind to where I can get money to pay for these tests.