At times stories emerge of individuals gaining betterment from one particular treatment. For instance MATN recovered from her illness with a strict and thorough change in her diet. She embraced a Stone Age diet and seriously restricted what she ate. Her testimony is quite convincing and you can read about her success on the Prohealth board. Barrowinnovations reported great improvement with treating gut dysbiosis and identifying gut pathologies through diagnostic stool samples. This was a big breakthrough for her.
While both diet and gut ecology are important elements, it is the rare individual who can get betterment through one treatment. Dr. Cheney states unequivocally that diet changes cannot cure CFS/ME. He does however believe that diet is a factor that needs to be addressed, and he has his recommendations on his new Cheney research site, available for a fee at cheneyresearch.com
Dr. Myhill also has her recommendations about food available at her website, drmyhill.co.uk. She also has a host of other recommendations on this site. Dr. Terry Wahls in Iowa , who has stabilized and reversed her own MS, has various dietary recommendations in her book Minding your Mitochondria. Dr. Wahls is careful about making generalized claims for her recommendations, stating only that these dietary changes were on benefit to her. However, her startling story makes one sit up and pay attention. Dr Wahls is trying to do some clinical trials involving her diet, but so far has been unsuccessful in getting this going.
Gut dysbiosis is an interesting problem. Doctors like de Meirleir or Bested and Logan see gut dysbiosis as being a central part of treatment. Others, like Dr. Leo Galland, have made a long time connection between chronic illness and gut health.
Gut ecology is best viewed with the matrix of contemporary Afghanistan in mind. It is a complex, difficult and longstanding struggle between competing systems or ideologies. It is the good guys and the bad guys. Tipping the balance towards the good is a difficult and lengthy endeavor. It takes hard work. Progress can be made and then backsliding can occur and the problem has to be addressed again.
Candida is a good example. My daughter has high candida antibodies. In other words she is sensitive to candida. She takes antigen drops for candida. Frontline treatment of candida involve diflucan and nystatin. These drugs are very successful in killing candida. Sometimes patients get real betterment at this point. For one sensitive to candida, the fix can be temporary and the candida can persistent. In other words it can come back.
Something additional needs to be done to keep candida in check. This most obviously involves dietary changes that starve the candida. Sugar and simple carbohydrates need to be avoided. The diet is quite strict. Often certain fruits and fruit juices need to be cut out. One can search out anti-candida diets - but they are generally what Dr. Cheney or Dr. Myhill or Dr de Meirleir propose – low to moderate protein, low carbs, high vegetable diets.
Testing for candida and other forms of gut dysbiosis can be done through a complete diagnostic stool samples – tests that are easily done out of the home. They can be ordered through Metametrix, Genovas, Redlabs, BE, and Diagnostechs. Rich van Konynenburg recommends the Diagnostechs test. Each test has something to offer. Some are easier to do than others. Follow-up tests can gauge progress. Other tests that provide reliable markers for gut dysbiosis and candida activity are the organic acids test and the amino acids test. This Patient Advocate uses Great Plains for the OAT and Doctors Data for the Amino Acids. These tests can be used to measure deficiencies and also to track progress. The PA has learned, with the help of others, principally Rich van Konynenburg, how to interpret or “read” these tests. Another useful test for tracking Hydrogen Sulfide production in the urine is available through Prohealth.
Probiotics are seen as a linchpin in gut ecology. Probiotics are the good guys and they settle in and contest with the bad guys - or at least they try to. In CFS/ME it is difficult to get the probiotics to colonize or stick in the gut. Measurements of good bacteria remain low in spite of heavy probiotic supplementation. Various things, either endemic to the illness, or unknown items, conspire against the colonization of good bacteria. The good bacteria gets swept out of the gut either the result of immune dysfunction or the cause of immune dysfunction.
Some probiotics are seen as better than others. Different doctors or researchers have different ideas about probiotics. Probiotics have become more widely studied in the past 15 years and are generally surfacing as having general and specific health benefits. Many claims of probiotic benefits are made but few are substantiated. More testing and trials of Probiotics are going on at the present time. The NYTimes had an article on Probiotics in the Science section on Tuesday September 29, 2009.
One can look at gut motility as a problem of good bacteria sticking. One can look at small intestinal bacterial overgrowth (SBIO) as a source of difficulties. Certainly one can rotate probiotics - and see if some work better than others. The New York Times article mentioned several well-tested (in specific situations) probiotics. These include lactobacillus GG or Culturelle, and Align, a bifidobacterium infantis 35624. Both are seen as potentially helpful in CFS/ME, and both are available in drugstores throughout the United States. Mutaflor, a probiotic Nissel1917, is available from Germany and is recommended by both de Meirleir and Cheney. de Meirleir and Cheney are in very close contact with their respective treatment programs and have a lot of overlap. This PA would imagine more cooperation in the near future, as both these doctors want to make some headway with this disease.
This PA would also recommend Custom Probiotics formula without d-lactate. The previously mentioned probiotics along with Custom Probiotics all are without d-lactate. Recent information leans towards using Probiotics without d-lactate. This PA recently read of a Probiotic that is being developed to inhibit Oxalates in the gut. Yakult is another probiotic viewed favorably by the CFS/ME community. Unfortunately Yakult is a milk product and has sugar in it. L. casei Shirota is seen as a very beneficial probiotic and hopefully it will emerge in another form.
There is a nice little blog entry that talks about probiotics.
This Patient Advocate has a model in his head for trying to deal with this disease. His idea is that dealing with CFS/ME is like building a table. You need to get the legs firmly attached. The table needs to be able to stand up and take some weight. The legs of the table vary in character and number, but the patient has to get all the legs firmly planted in order to move on with more sophisticated and targeted treatments. Get the table strong and you can pile things on it. In this PA’s case the legs for his table is thyroid/adrenal, resting and pacing, gut ecology, and diet. Once these situations are stabilized - which is not so easy - the immune system will strengthen, and further treatment, like live cell or anti-virals can be added. Doing it the other way around is a mistake. This approach is closely connected to Dr. Dale Guyer’s treatment of CFS/ME. It also intersects with many other practitioners' ideas.
Whether gut dysbiosis is cause or a result of CFS/ME is not known at this time. In either case most people familiar with this illness believe that it needs to be treated. Dr. Cheney has said that none of his treatment will work until the gut is straightened out. This is the general consensus, and a Patient Advocate or patient would be well serve to take note of this advice.
Tuesday, September 29, 2009
Wednesday, September 23, 2009
Dr. Derek Enlander
Dr. Derek Enlander has a practice in New York City. His office is in midtown NY, on 69th and Fifth Avenue. Dr. Enlander has been treating CFS for many years. Originally hailing from Belfast, Ireland, Dr.Enlander got sidetracked into CFS/ME in the early 1990’s, trying to solve a fatigue problem of a childhood friend with ME. Many doctors and researchers get entangled in this CFS/ME field through chance. They either have (or have had) the disease themselves, or have tried to help a friend or relative. Many years later, Dr. Enlander is seen as one of the top CFS doctors in the world.
Dr. Enlander is a very bright, kind and thorough doctor who has a great deal of experience with CFS/ME. Before he devoted himself to the field of ME, he studied the relationship of Epstein Barr virus to cancer. He came to New York as Assistant Professor of Medicine at Columbia University, and then served as Associate Director of Nuclear Medicine at New York University (NYU). He is now in private practice with extensive professional connections in the field, especially in Israel, the UK, Ireland and Europe. Dr. Enlander serves as Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York.
Dr. Enlander takes a detailed history and does a full physical for new patients. He orders a complete set of tests, done through Quest or Focus labs. His evaluation of the patient is then made.
His treatment protocol revolves around a chance encounter in the 1990’s with Kutapressin. In a Texas study Kutapressin, a peptide from pig livers, was found to bring benefit to a number of CFS patients. Dr. Enlander tested the compound with a variety of additional substances and was able to increase the efficacy of Kutapressin. Enlander says that 67% of his patients show improvement on his combination weekly injections. These injections are not a cure. These combo IM injections include Hepapressin (Kutapressin is no longer produced by Schwartz Pharmacy), cynacobalamin, glutathione, Calphosan, magnesium sulfate, folic acid and trace minerals. He also uses several other products, principally Immunoprop, Immunoplus, and Electrolyte made by Immunoprop Pharmacy. Dr. Enlander also uses Low Dose Naltrexone.
Dr. Enlander is seen as a kind and compassionate doctor. In reality he is reserved and can even by seen as shy. However, once he starts speaking people listen very carefully. I have seen him gives presentations on several occasions. There is nothing flashy about his lectures, but he presents a convincing authority and delivers diagnostic information without alot of flourishes.
Dr. Enlander is heavily involved in research for ME/CFS. He works closely with various other CFS doctors and researchers, including Dr. de Meirleir and Dr. Jonathan Kerr. He is currently doing a study with de Meirleir on Nexavir suppositories. He also communicates with Dr. Jose Montoya - as Dr. Enlander has a particular interest in antiviral treatment, especially with Valcyte for HHV6. Dr. Enlander also is involved with the new ME research group in Europe. Dr. Enlander will be giving a talk at the NYCFS/ME conference on October 18, 2009 in Eatontown, NJ. Dr. Susan Levine will also be giving a presentation at this conference..
Dr. Enlander is a very bright, kind and thorough doctor who has a great deal of experience with CFS/ME. Before he devoted himself to the field of ME, he studied the relationship of Epstein Barr virus to cancer. He came to New York as Assistant Professor of Medicine at Columbia University, and then served as Associate Director of Nuclear Medicine at New York University (NYU). He is now in private practice with extensive professional connections in the field, especially in Israel, the UK, Ireland and Europe. Dr. Enlander serves as Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York.
Dr. Enlander takes a detailed history and does a full physical for new patients. He orders a complete set of tests, done through Quest or Focus labs. His evaluation of the patient is then made.
His treatment protocol revolves around a chance encounter in the 1990’s with Kutapressin. In a Texas study Kutapressin, a peptide from pig livers, was found to bring benefit to a number of CFS patients. Dr. Enlander tested the compound with a variety of additional substances and was able to increase the efficacy of Kutapressin. Enlander says that 67% of his patients show improvement on his combination weekly injections. These injections are not a cure. These combo IM injections include Hepapressin (Kutapressin is no longer produced by Schwartz Pharmacy), cynacobalamin, glutathione, Calphosan, magnesium sulfate, folic acid and trace minerals. He also uses several other products, principally Immunoprop, Immunoplus, and Electrolyte made by Immunoprop Pharmacy. Dr. Enlander also uses Low Dose Naltrexone.
Dr. Enlander is seen as a kind and compassionate doctor. In reality he is reserved and can even by seen as shy. However, once he starts speaking people listen very carefully. I have seen him gives presentations on several occasions. There is nothing flashy about his lectures, but he presents a convincing authority and delivers diagnostic information without alot of flourishes.
Dr. Enlander is heavily involved in research for ME/CFS. He works closely with various other CFS doctors and researchers, including Dr. de Meirleir and Dr. Jonathan Kerr. He is currently doing a study with de Meirleir on Nexavir suppositories. He also communicates with Dr. Jose Montoya - as Dr. Enlander has a particular interest in antiviral treatment, especially with Valcyte for HHV6. Dr. Enlander also is involved with the new ME research group in Europe. Dr. Enlander will be giving a talk at the NYCFS/ME conference on October 18, 2009 in Eatontown, NJ. Dr. Susan Levine will also be giving a presentation at this conference..
Thursday, September 3, 2009
Terry Wahls
The Patient Advocate will spend a great many hours on the internet noodling around, trying to find things that will help his daughter. After hours and hours of doing this, the PA will learn what threads to follow, or what supplements or drugs to research. For instance this morning the PA was reading again about Garth Nicholson and NT Factor. The PA has known about Dr. Nicholson for many years and was able to meet and talk with him in London this year. Dr Nicholson gave a fascinating lecture at the May conference. It is available on the DVD of the conference. He has a website at immed.org. In doing extensive reading on the internet about chronic illness, the PA learns many things about medicine, both alternative and mainstream. Occasionally the PA will stumble over items that have great allure - they hold out great possiblities for treatment of various illnesses- while at the same time having serious detractors. Such a drug is Dimebon. Dimebon, which was stumbled upon while researching mitochondria, is not without controversy. Perhaps you have read about it? Google alerts can be set on a word, and the alert will come up anytime a new mention of the item appears on the internet. In this way the PA follows a number of drugs. In January 2009 this PA stumbled on a radio interview with Dr. Terry Wahls. Dr. Wahls, a medical doctor in Iowa, has reversed her MS. Hers is an amazing story, and challenges fundamental concepts about illness. Dr. Wahls is a strong advocate of the connection of diet and the brain. Her website and blog lay out her ideas and experiences. Much of her information is free. She has written a number of books. Books or DVD presentations that can be purchased on her wesite; terrywahls.com. Her most recent book is Minding Your Mitochondria. Dr Wahls recently posted a study that measured glutathione in the brains of MS patients. For those of you who are interested in diet and mitochodria, this PA suggests that you check her blog: terrywahls.blogspot.com.
Sunday, August 30, 2009
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.
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.
Thursday, August 20, 2009
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.
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.
Wednesday, August 19, 2009
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.
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.
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.
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