Dr. Enlander (I am a patient)

Discussion in 'Fibromyalgia Main Forum' started by LuvSWZ, Feb 22, 2007.

  1. LuvSWZ

    LuvSWZ New Member

    I have had CFS for 7 years. Tried numerous doctors around the NYC area and finally resulted in the best team of 6 doctors and therapists. An international CFS association last year ranked Dr. Enlander as the top CFS doctor among the list of usual suspects, the only one in NY on that list as I recall. I have settled on him for 2 years after trying the names frequently mentioned here and some on that top CFS doctor list.

    Dr. Enlander does take time and gives good advice in my 2 years' experience. The first visit was exhaustive and lengthy. Follow-up visits varies depends on how many issues I need to address, and range from 10/20 minutes to well over 30 minutes. He has always answered all my questions and NEVER cut me short unless I rambled on with unrelated things that he can't help.

    In fact my biggest complaints are waiting time - as he TAKES TIME with patients. I made it my business to time each patients in front of me. If the queue before me involved new patients, I was in it for a LONG wait. Dr. Enlander is one of the 3 doctors who takes most time among the several DOZENS of doctors I've seen, including big names, name brand clinics/hospitals, avarage private practices, those who take insurances and those who don't.

    He is efficient. You don't need to give exhaustive symptoms list as he KNOWS although you might think yours are unique. "What can I do for you, my dear." is his usual opening words. To get the maximum benefits out of the visits, I find brief preparation in waiting room helpful - getting the main complaints, medication list, questions, etc. If you are not prepared, or conmiserate too much, it's not efficient use of his time or yours. Patient needs to appreciate that CFS is hard to treat, and it takes time - do not expect miracles quickly with ANY doctors. I have some of the most severe and debilitating complications - I would not be here today if not for Dr. Enlander.

    He has the integrity to tell patients about the researches he's conducting and invite those who are willing to participate. Some doctors, including name frequently mentioned here would tell you to do something but not tell you it's experimental. He will discuss pros and cons of vairous treatments, and recommend the best and safest. I trust his judgement - there are zillions of "CFS protocols" out there, a good doctor can avoid you many mishaps and false hopes. Hepapressin shots worked GREAT for me. Immunoprop did not work for me so I switched to ImmuneResponse. Dr. Enlander actually subsidizes many ingredients in Hepapressin shots that insurance companies won't pay for. And his supplement prices are reasonable - a far cry from some doctors who tried to sell me $300+ supplement each visits.

    The tragic loss of his wife has not impacted Dr. Enlander's performance. He treats me with the same professionalism as before.

    Many here praised his staff. They are the best that I've encountered indeed. Bear in mind "attraction of the same kind" works in every business - a good leader attracts good followers, no other way around it.

    The exclusion of Michelle, one of Dr. Enlander's nurses, from this list bothers me. I have not read anything from Michelle, but I know that she's a CFS patient herself who became well under Dr. Enlander. She should be able to join her own community. Nurse Laura's sister Darlene who worked in Manhattan office is also a CFS patient. I have not seen any other doctors who work with CFS patients in such a dedicated way.

    Each CFS patient respond differently to even the same treatment. The selection of doctors are highly individual as well. I just want to throw in my 2 cents from numerous visits after 2 years instead of one visit. Hope you find it useful.

    LUV
  2. KMD90603

    KMD90603 New Member

    Thank you so much for this post. I have finally had enough with my infectious disease doctor, and Dr. Enlander is one of the top doctors that I have been thinking about going to. However, I'm out of state, so I'll have to pay a huge amount out of pocket. But, if it means finally having my health back, then it's worth it. Does he accept non-local patients. I live in PA, so it would be quite a travel. But, it may just be worth it. Thanks again for posting this, it's good to hear this information from one of his patients.

    Kim
  3. wrthster

    wrthster New Member

    I think it was very good of you to post this. There have been a lot of negative comments about him, and there are alwasy two sides to every story. It is good to here from someone who has worked with him for two years. And as far as I can see, considering Cheney, Lapp, FFC's, Titelbaum, etc. all charge a small fortune which is distgusting. I think at the very least, Dr. Enlander has a lot of intergrity and is very honest. There is a lot to be said for that.
  4. doxygirl

    doxygirl New Member

    But I see red flags here!

    Especially when there was recently a post placed on this board of others who had very negative results with this DR!

    Seems like "damage control" to me!

    Just my opinion :)

    Hugs
    Doxy
    [This Message was Edited on 02/23/2007]
  5. Iamnotmyillness

    Iamnotmyillness New Member

    I am curious, someone posted that this doctor is ranked as the top doctor in the country for Fibro. Where can I find this list. I have no plans to see Dr. Elander (too far away and no money) but if such a list exists, it may help me find another doctor closer to home.
  6. doxygirl

    doxygirl New Member

    Iam happy to hear it is not just me!

    Hugs
    Doxy
  7. I thought the same thing, first time poster, whats the saying...if it walks like a duck and acts like a duck.....

    Now the plot thickens , so it actually wasn't Dr. E. nurse posting afterall. It only goes to prove, do your OWN homework people, don't go by anyone elses opinion, especially if it is a new poster and you have any doubt.

  8. Slayadragon

    Slayadragon New Member

    "An international CFS association last year ranked Dr. Enlander as the top CFS doctor among the list of usual suspects"

    Which organization is this? Who were the other doctors on the list?

    Just curious.

    Best, Lisa

  9. Slayadragon

    Slayadragon New Member

    Are you still taking Valtrex? If so, at what dosage? What kinds of experiences are you having with it?

    How are your classes going?

    Are you still planning to start Valcyte when they are over?

    Good luck to you.

    Best, Lisa


    [This Message was Edited on 02/24/2007]
  10. PVLady

    PVLady New Member

    If I can respectfully give another viewpoint....


    I really think the post from LUV is legitimate. I know we sometimes have people come here and it is suspicious, but I did not interpret this as a false post at all.

    You may have already read this Q&A that is on the Immune Support website - very interesting. I believe LUV is just trying to say she knows Dr. Enlander and his staff well. When she mentioned "Michelle" it does not sound like she is talking about her being a member here.

    Everyone has a different experience with doctors. My wonderful doctor I have seen for years was very short with me yesterday. I stopped to remember how stressed he is with his practice. It is so hard to treat patients with CFS, pain, fibro, etc.

    I honestly don't feel Dr. Enlander or his staff would take the time to write the long post coming from LUV.

    This doctor has very impressive credentials. I wish I could see him myself... It is very interesting he is researching the link between CFS, Epstein Barr and cancer. So scary.



    Derek Enlander, MD: Update on the Treatment of Chronic Fatigue Syndrome and Fibromyalgia
    ImmuneSupport.com

    11-08-2006

    Derek Enlander, MD, is originally from Belfast, Ireland, and is Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York. He is presently in private practice in New York where he sees CFS and FM patients, is on the faculty of Mt. Sinai Medical Center in New York City, and serves as President of the Israel Medical Research Foundation.


    Included in this article is Dr. Enlander’s advice on treating common CFS and Fibromyalgia related syndromes such as fatigue, pain, and brain fog, as well as information about a formula he has developed to help treat CFS and Fibromyalgia symptoms.

    Question: Dr. Enlander, when did you first become aware of Chronic Fatigue Syndrome and Fibromyalgia as valid illnesses with real symptoms (what were the circumstances)?

    Dr. Enlander: I originally came to the United States to accept a one-year fellowship at Stanford University. My primary research subject was the relationship of Epstein-Barr Virus to cancer. I had studied virology with Lannette (the father figure of modern clinical virology) in his Lab in Berkeley. While there, I performed early scanning electron microscopy on cell surface changes in herpes virus infection. I came to New York as Assistant Professor at Columbia University and then Associate Director of Nuclear Medicine at New York University. I now have a private practice in both Manhattan and Long Island, and am on the faculty of Mt. Sinai Medical Center. Patients fly from around the world to my office regarding this illness. The magnitude of this illness is far-reaching and worldwide.

    During my fellowship at Stanford many years ago, I made a return visit to Belfast. I was asked by a childhood friend to help him in a then virtually unknown condition, Myalgic Encephalomyelitis (ME). This is more commonly known in the United States as CFS or Chronic Immune Dysfunction Syndrome (CFIDS). The more I researched this illness, the more interested I became. It had a direct relationship with my field of interest in Herpes Virus. I was completely intrigued by this illness due to its highly unusual effects on patients; its lack of consistency, and seemingly affecting so many aspects of the body; and the lack of objective testing evidence when clearly these patients were so very ill. I especially was intrigued by the dismissal of this illness by other physicians as a mental condition, when clearly these patients suffered from physical illness. A large number of patients were affected, a number far greater than I at first realized.

    Question: What are the most common factors for these illnesses – why do you think so many CFS patients also have Fibromyalgia, and vice-versa?

    Dr. Enlander: I do believe that CFS and FMS (Fibromyalgia Syndrome) are related illnesses. There is commonality of symptoms between them. However, I don’t think we as a society or medical community are really sure enough yet what the common factors are. So far, the illness appears to be provoked in a number of ways and it is difficult to separate and assign specific symptoms to specific causes, creating subgroups within the CFS/FMS community.

    We are aware, for instance, that a person involved in a car accident may develop FMS, and some other trauma may provoke the symptoms to a first time flare-up. With CFS, some patients are quick onset with viral-like symptoms similar to the flu. Others begin as a very slow onset that can take years to really develop to their low plateau level. Diagnosing CFS requires a 6-month time frame of fatigue and symptoms. These symptoms should be of a new nature, such as unremitting headaches, sore throat, fever-like flu feeling, sleep disruption, muscle aches and pains and cognitive difficulties. This illness is a very debilitating and complex disorder.

    What I do believe is that whatever initiates the beginning of the illness then directly affects the immune system into an upregulated or a deregulated condition. The body, trying to heal itself and return to a natural balance, seems to constantly be adjusting to find that balance. I believe that is why over time we begin to find small changes, for example, in thyroid function, hormones, etc. We are unsure why one person experiences the longevity of the viral flu symptoms and others deal with it at only sporadic times. Some patients face serious neuro-cognitive symptoms, while others fare lighter in this symptom. Or better yet, why one patient one week will have few signs of one symptom, but the following week will experience the symptom significantly.

    One thing I am sure of with this illness is that it has cycles to it. A key to managing this illness is learning to recognize those cycle times and behave accordingly. The cycles do not seem to follow any known physiological patterns. However, symptoms do seem to worsen for women during their menstrual cycles.

    Many patients will start out with CFS and later develop FMS. Some just develop FMS, and diagnosis criteria for FMS are slightly different. A tender point test is given by the physician, with 11 of 18 tender points a criteria factor for the diagnosis.

    At this point in time, our medical knowledge does not provide us with enough iron-clad evidence to decide whose body does what and why. We keep finding small pieces to the puzzle, but are still trying to see the whole picture. We try to recognize in each patient some common symptoms (after eliminating all other possibilities for illness) as set out in medical standards, and treat accordingly.

    Question: Do you have a standardized treatment protocol for your CFS/FM patients?

    Dr. Enlander: I hate to say I have a standard treatment because each patient is an individual with various symptoms and levels of the illness.

    My first line of treatment is to LISTEN TO THE PATIENT. I cannot express this strongly enough. Most patients have gone through many doctors who knew little of the illness, and in some ways have done harm to patients by their lack of belief, knowledge, and support. It is very important to me to establish a trust with my patient.

    After a full examination, I treat according to each patient’s health needs. However, yes, there is a common thread of treatment. Over 10 years approximately, I developed a formula given by injection weekly to help alleviate symptoms over time. The IM injection complex contains:
    n Hepapressin, a generic equivalent of Kutapressin,
    n Glutathione
    n Folic acid
    n Vitamin B12
    n Magnesium sulphate
    n Calphosan
    n And trace minerals.

    In combination with this weekly injection the patient is prescribed Immunoprop and Lectrolyte. In some cases a sublingual methylcobalamin spray [type of B12] is used. Many of my patients have been able to resume a significant portion of their lives, including returning to work.

    This formula method is NOT a cure, but it does help significantly over time. Many of my patients have been able to resume a significant portion of their lives, including returning to work. The formula works very slowly, often taking 8 to 12 weeks before the first signs of improvement begin. Other physicians use some of the ingredients I use to help treat Fibromyalgia/Chronic Fatigue Syndrome, but I have found that combining these ingredients into a single injection and consistently using this protocol has given tremendous improvement for most patients. My studies over the years have found a 70 percent to 80 percent improvement rate with use of the formula, compared to only about 30 percent using individual items from the formula list.

    Aside from the formula, there are many symptoms that need to be addressed. First, we eliminate anything that is not related to CFS/FMS and take care of that separately. Then we begin to treat the remaining symptoms, such as poor sleep, neuro-cognitive difficulties, and pain. Let me state clearly here that while many patients develop depression and anxiety symptoms, I am of a firm mind that this is a secondary response to the illness. Therefore, we treat depression as needed, but in respect to this point of view.

    Question: What are your recommendations for FM/CFS patients regarding the important issues of unrefreshing sleep, pain, low energy, depression, brain fog, diet and supplementation needs, etc.?

    Dr. Enlander: My recommendations are as follows.

    n Sleep (unrestful sleep; insomnia). Good, deep, refreshing sleep is a major key to helping other symptoms of CFS/FMS. Most patients have sleep disturbances to their normal cycle. This includes falling asleep, staying asleep, and quality of that sleep. Sleep studies may be beneficial to determine sleep apnea, etc. For instance, I treat patients with sleep apnea with extreme caution regarding any type of sleep medication. If the patient’s breathing became obstructed or disrupted, a sleep medication could potentially worsen the condition.

    I prescribe various medications and treatment plans to help improve sleep. I start the sleep adjustment with the least provocative substance that will not be habit- forming: diphenylhydramine. If that is not effective, I may use an older drug like Trazodone (deseryl) to help establish a more stabilized pattern of sleep. Or I may use drugs such as Ambien, Sonata, Klonopin, Flexeril, Zanaflex and others. I am cautious about long-term use of certain drugs due to their addictive or dependent qualities, and will short-term swap medication to lessen the habit forming effect.

    I often caution patients about using alternative methods or over-the-counter sleep aids. I am not opposed to all such substances, but I feel strongly that as your doctor I need to know ALL medicines/substances you are taking, as there can easily be a cross-reaction and damage to the body can occur. Substances bought over the counter for sleep and other symptoms can in fact provide the opposite effects.

    I may also prescribe a muscle-relaxant to help relax the muscles to promote better sleep. I try to help the patient establish a routine that will aid in establishing a sleep goal.

    n Pain (drugs prescribed, etc.). I recognize the seriousness of the pain CFS/FMS patients suffer and treat accordingly. I am very consciously aware of the dependency that many pain medicines can contribute to, so I follow this closely with each patient. Pain meds often used are both short-term and long-term. Patients have different pain levels, thus requiring different choices of medications.

    Stress reduction is very helpful to CFS/FMS patients. I ask my patients to consider therapies such as deep breathing exercises, muscle relaxation therapies, biofeedback and meditation. These methods often help manage chronic pain.

    n Low energy (combating fatigue). One of the ingredients in the formula that I use for patients is glutathione. Many patients find this helpful for increasing energy levels. Other drugs I use may also have side benefits of increasing energy. Neurontin is such a drug. This is an anti-seizure medication that currently has uses in sleep issues, pain issues, as well as helping with energy levels. Antidepressants are used for many reasons besides depression, and these may often help elevate energy levels. If a patient does suffer from depression issues, certain antidepressants may help alleviate any fatigue issues related to the depression. Elavil is one older antidepressant drug that is often helpful for low energy, as well as sleeplessness. We have explored th use of Xyrem for insomnia in CFS.

    Again, I like to see very, very slow graded exercise as a means to increasing energy levels. I also find that rising in the morning hours often helps a patient’s energy levels more than awakening in the afternoon. I also believe that sunshine helps the body to rejuvenate somewhat.

    n Depression (drugs prescribed, etc.). CFS/FMS patients are very sensitive to drugs that treat depression and anxiety, so I carefully discuss with the patient the best possible choices and side effects. The best treatment medication may take a few tries with different choices. For instance, a patient may need a more sedative-like antidepressant (e.g., Serzone, Celexa) or perhaps one such as Wellbutrin SR that creates the opposite effect of a more stimulant reaction. Many CFS/FMS patients cannot tolerate high doses of these particular medications and respond much better to low doses. Most responses take 3 to 6 weeks to be realized, though.

    n Brain fog (inability to concentrate, memory problems, etc.). Again, I feel strongly that my formula injection helps improve this symptom over time. I may also have to use certain drugs to help the brain better focus. Additionally, I have found that a combination of glutathione, l-cystine, and selenium can be helpful with concentration loss and short-term memory loss.

    I also ask patients to perform memory-enhancing exercises to help their mind focus and stay sharp. Examples are crossword puzzles, free word games provided by online services that help memory, and TV shows such as Jeopardy! I urge patients to continue to challenge their minds, even though I realize it is often difficult at the various levels many CFS/FMS patients succumb to.

    n Diet (foods to eliminate, excitotoxins, etc.). Many patients do indeed appear to help themselves by eliminating certain foods. Patients seem to come to these foods and substances by either allergy testing or sample diet reactions. There are many books that can be used as a self-help method to follow. I like for patients to maintain a healthy balanced diet low in animal fat and high in fiber with abundant fresh fruits and vegetables. The treatment that I use to help in this area is a product called Immunoprop. I believe it helps patients in better nutrition for the body, as well as addressing other symptoms.

    n Supplementation (how to address any deficiencies). The formula injection that I use in treatment provides many amino acids along with minerals and vitamins. With testing results, I may also include additional substances such as potassium, calcium, etc. I find that pills often are not absorbed well, so I prefer to use the injection for better absorption. I am not opposed to discussing other substances that might be of particular help. However, I want patients to recognize that supplements and herbal medicines have many potential side effects and toxic reactions as standard drug therapy. In fact, the dangers increase due to the lack of standards, doses, and quality for ingredients. Vitamin E has been recommended in low doses to enhance the fatty acids in the cell membrane, and promote cell function.

    n Other issues (immune dysfunction, cognitive difficulties, etc.). First, let me say that I believe a positive attitude is a key factor in those patients that improve the fastest. Patients must seek out physicians who are willing to consider their problem as a medical condition and not a psychiatric one.

    I want patients to recognize that there are often other unusual symptoms that may occur in CFS. These might include abdominal pain, alcohol intolerance (avoid alcohol and medication use at all times), bloating, chest pains, chronic cough, diarrhea and other gastrointestinal situations, dizziness and loss of balance, dry eyes or mouth, irregular heartbeat, jaw pain, morning stiffness, nausea, night sweats, shortness of breath, peculiar skin sensations, tingling sensations, pins and needles, creeping sensation under the skin (feels as if an ant is crawling under the skin). In some patients, the inability to exercise may cause weight gain, as well as medication causes. Other patients may experience significant weight loss.

    However, I want to seriously caution patients to not assume any symptom is simply part of CFS/FMS. This would be a grave error that could cost a patient their life. For instance, ALWAYS check out chest pains with a physician immediately. While FMS trigger points can be a cause for chest pain, it is just as likely you could be experiencing heart trouble. Never assume – check with your doctor!

    Question: What is your recommendation regarding exercise for FM and CFS patients?

    Dr. Enlander: I consider exercise from different points of view with FM and CFS.

    CFS patients’ prominent symptom is fatigue. This word is not truly descriptive of what these patients feel. When we use the word fatigue, the average person typically thinks tired from activities such as work, physical exertion, or lack of sleep.

    CFS patients feel a different type of “fatigue.” At times, they feel they cannot lift an arm or leg without significant effort. Their energy base is depleted. Therefore, I suggest my CFS patients do only slow, very graded exercise. Exercise is a very slow and tedious but necessary aspect of recovering to a more productive level of functioning.

    If CFS patients overdo exercise or any physical activity, immediate repercussions typically occur. At times, CFS patients do have spurts of energy and typically overdo because suddenly they can do things. One of the hardest obstacles to learn with CFS is to find balance in all things. Patients walk a fine line regarding exercise and physical exertion. CFS patients have relapses that often last for several days before they recover. I tell patients to follow this rule: “only do 50 percent of what you think you can do.”

    I prefer my CFS patients to begin with stretching exercises, then begin walking perhaps a block or to the end of their driveway and back if necessary. Walking can be done at their own pace, place and distance, so as to not overtax their bodies. Then, very slowly progress to 2 minutes twice a day with exercise that is not of a strenuous nature, but include something different.

    There are many methods of exercise available today and one must choose something they enjoy doing. A stationery bicycle is a good choice once a patient reaches this level. It allows you to work your arms as well as your legs, but your balance is better served here as you progress in pedaling at your own speed. It is often difficult for some CFS patients to use a treadmill, as balance and continuous speed of the treadmill will make them fall. The type of exercise therefore depends on each individual patient and their physical abilities. I also like for the patient to choose an exercise that they prefer.

    I, however, do not want my patients in an aerobic class. I feel this causes considerable damage to CFS patients. This is often difficult for the patient to accept on a long-term basis, as I find that most CFS patients were very active prior to falling ill with CFS. Once you have very gradually worked yourself up to the proper levels, one might find benefit in a very low-grade aerobic type class, although yoga, tai chi and similar exercises might be best.

    For FMS, patients’ prominent symptom is pain. Therefore, some exercise can help relieve some of this pain, but only done in slow, graded methods. I follow a similar exercise for FMS patients as I do in CFS patients, as I believe the illnesses are related. They share similar symptoms, with either pain or fatigue being the leading factor. However, with FMS I believe that a patient might benefit better from stretching exercises, building up slowly. Then progress to mild exercise efforts like water aerobics. Temperature of the water for water aerobics is essential as well. FMS patients usually need water warmer than the average person. Again, to overdo will bring very painful muscle cramping, so this exercise must be done very gradually.

    With FMS patients I often find using some complimentary services to be helpful when exercising. The right type of massage done on a regular basis, along with drinking lots of water can help lessen the pain of the muscle. Our bodies need water, but most especially CFS and FMS bodies. FMS bodies tend to significantly tighten up their muscles after exercise, and particularly during periods of stress. Deep tissue or trigger point massage is the eventual goal for an FMS patient, but most patients need to be started with a much lighter touch in the beginning and work up to the desired goal. Again, the key is balance in all therapies.

    I will add that I am very open to new treatment discussions and new courses of studies. I research this illness considerably and am open to other possible treatments, with safety of my patient being the first criteria.

    Question: Are you currently involved in any research studies?

    Dr. Enlander: I have participated in a number of research studies over the years, and do some in-house with the assistance of other professionals. Recently I have been following more and more patients regarding the low blood volume issue. Low dose Naltraxone LDN and cytokine evolution in these diseases are current research topics that we are presently working on.

    I often assist other entities doing the research, but I prefer to participate in a quiet manner rather than announcing a new study. I often help patients participate in research projects with pharmaceutical companies.

    I often find funding for CFS/FMS research to be a carefully controlled and cliquish doling out of money. It seems often research grants cover the same old territory for years. I would like to see some new names and new opportunities granted for furthering research. How many more studies do we need of cognitive behavioral therapy, depression, and somatoform issues?

    Question: What do you think are the most promising recent developments in CFS and FM research?

    Dr. Enlander: I am interested in following the Kenny De Meirleir, MD’s CFS test -made known to the public recently. I am also interested in furthering the research of the blood volume issue, as well as cytokine secretion and their relationship to these conditions.

    Question: What do you think the future looks like for CFS and FM patients? Are we moving forward in dealing with these diseases – as patients, practitioners, and as a society?

    Dr. Enlander: I am concerned about the lack of true medical understanding by most doctors regarding CFS/FMS. Recently, I have written several letters to the British Medical Journal and the Cleveland Clinic Journal. My letters were published in response to previous articles published, which in my opinion shifted medical thinking away from the importance of CFS/FMS. In an ABC-TV appearance, I emphasized the fact that patients are not imagining their disease. In my lectures and my book, The CFS Handbook, I try to communicate the facts. I still continue to hear horrific stories of how patients are treated with this illness and the complete lack of knowledge of physicians.

    The worst is that physicians shy away from learning more about this illness.

    I believe every few years there are shifts in opinions on CFS/FMS. I see a growing trend, unfortunately, once again to try to attach a more psychiatric viewpoint and treatment plan to patients with the illness. The continued push to cognitive behavioral therapy and psychiatric means, by both much of the medical establishment and the insurance companies, concerns me.

    I feel that more and more individuals are becoming aware of the illness, but the name of CFIDS is very undermining to the true nature of the illness. I think positive recognition is happening in the public, and patients are being cheered for their accomplishments – as we’ve seen for [Olympic speed skater Amy Peterson] and other athletes suffering with CFIDS.

    My largest concern regarding the future of CFS/FMS is attracting the funding needed to really get to the root of this illness. As a society, we need to accept only the best and brightest research models, and push for solid, scientific studies that can be replicated. We definitely need an attitude adjustment to the current approaches.

    ______

  11. PVLady

    PVLady New Member

    It does kind of bother me when anyone new posts, gets tons of response, then never posts again or responds.

    Thanks
  12. IntuneJune

    IntuneJune New Member

    Nice to be able to discuss both sides of issues here on the board. Good for all to see.

    LUV would be more credible if not a new poster.

    Thanks for the info PVLADY.

    June
  13. Slayadragon

    Slayadragon New Member

    I'm glad to hear your classes are going so well!

    Trying to stop smoking and dealing with emotional stress seems like it might take a lot out of you. Take good care of yourself.

    The idea that you (and most other people on this board) can increase Valtrex/Famvir and just herx for a day or two is constantly perplexing to me. I don't know if I have more total viruses than other people, or maybe just more of the ones that respond to the Famvir.

    As I mentioned in my Famvir thread today, adding nattokinase (a blood fibrin thinner made of soybeans) has caused my herxing to pick up substantially. That could be something for you to consider adding if you want to get more mileage out of the Valtrex (and thus hopefully not need to use as much Valcyte later on). With your doctor's approval, of course. (I put in these disclaimers so that other people don't object to my giving suggestions.....obviously you don't need me to tell you what to do!)

    I've been thinking about you periodically and am glad that you're doing well. Please report back from time to time on how things are going.

    (Maybe I'll even have results myself by May. This herxing seems to be going on from here to eternity, but anything's possible.)

    Best, Lisa


  14. Slayadragon

    Slayadragon New Member

    Does anyone know what Immunoprop is?

    Or Immune Response?

    Thanks!

    Best, Lisa

  15. Luv you do not mention what type of treatment he is treating you with. Meds or supplements of both etc. ? Also has it helped? Does he just treat cfs or fibro also?
  16. Slayadragon

    Slayadragon New Member

    Oh, no, this is definitely a herx.

    I am still getting the feverish feelings that are only associated with viral killing. (They've died down over time, but started back up when I began the natto.)

    It's not a flare, since the symptoms have died down when I lowered the dosage for a time.

    The fact that symptoms have been decreasing the longer I've been on the drug suggests it's not a drug reaction, but a herx.

    Herxes can go on a long time.....obviously the ones to Valcyte do.

    The most plausible explanation I've come up with is that the viruses that I have are especially susceptible to Famvir. Obviously this is a good thing!

    It also could just be that I have more total viruses than most people. It's hard to know if that's true though.

    Interesting that the natto made you so sick. I was afraid to try it until I got to the point where the herxing from the Famvir was starting to die down. I don't know what it would have done to me earlier.

    i wonder if the stuff that's in ImmunoProp helps with something that has been called a methyl deficiency. I was discussing this with deliarose, who says she thinks she's had success in addressing it.

    I'm going to paste here an article on the topic from another board. It's about glutathione and Dr. Enlander seems to be enthusiastic about glutathione, so it seems not inappropriate to put here.

    Again, good luck to you!

    Best, Lisa

  17. Slayadragon

    Slayadragon New Member

    Actually, I'm going to post that information in its own thread, called "Methyl Block to Glutathione Usage."

    If anyone gets a chance, please let me know if this sounds like Dr. Enlander's ImmunoProp stuff.

    Thanks!

    Best, Lisa
  18. ritatheresa

    ritatheresa New Member

    I was in Dr Enlander's office today, the nurse's said that they absolutely do not frequent any of the CFS or Fibro websites.

    Anybody who is stating otherwise is lying.

    Dr Enlander is a straight shooter and I think his reputation and understanding of this disease speak for itself.

    There are some people you can never satisfy, that is a fact.

    I am very happy with the treatment I have received from Dr E so far. Take care, Rita
  19. Slayadragon

    Slayadragon New Member

    I put a mention of the price on that methyl block thread. I kind of thought that the cost was one of the better things about that protocol, but maybe I'm missing something.

    I thought that removing the methyl block is supposed to make you just get better, and that you just keep using the supplements, but maybe i'm missing something there too.

    Anyway, I'm not advocating this program by any means. I'm just asking about it because it sounds interesting.

    I also am wondering if anything that Dr. Enlander had in the ImmunoProp stuff is related to the methyl block.

    Best, Lisa

  20. code34me

    code34me New Member



    Take care of you! Codey
    [This Message was Edited on 03/02/2007]