Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Hi, Jill. Im sorry about the unpleasant visit with the immunologist. It is interesting, though to hear that your tonsils are shrunken. I'm wondering what caused what in this situation. Before you started the IVIG, did you have your lymphocytes counted, or your immunoglobulin looked at in some way? If so, was there evidence of a low B-cell count or suppression of B-cell function, or low total blood globulin or antibodies? If there was no evidence of this before starting on the IVIG, then perhaps the use of IVIG is what led to the shrunken tonsils. How long have you been using it, and what's the dose and dosing schedule? What I'm getting at is maybe your B cells took a break because immunoglobulin (antibodies) were being supplied intravenously. Rich > > I am back from the immunologist, who is associated with Albert > Einstein, and it was an exercise in depressing futility. When I told > him I do hyperbaric, small amounts of IVIG, and IV > vitamin/minerals/glutathione, I probably lost him. He dismissed it > all. He had no interest in hearing how these things helped me and when > I told him there is a rationale for hyperbaric he said that all > funding had dried up for it because it had been proven that it did not > increase tissue/plasma oxygen levels (what are you going to say to a > guy like that?). He also scoffed at the amount of IVIG I'm on, which I > suppose I can understand, but one COULD say I'm glad that small amount > is helping you but it is not sufficient. Because I got IVIG yesterday > he could not draw any blood as my parameters would be skewed and > therefore he wants me off it a month and to come back. We did talk > about the various things that could show up--for instance, I could > have increased blood viscosity, overactive or undereactive b cells (he > mentioned the research showing lyme enters bcells), tnf, bla bla bla. > But he usually works with doctors doing antibiotics as he has his own > research lab but it can only take insurance and my insurance will not > cover it, and it is illegal for me to " donate " ...so I'd have to get a > PPO if I wanted his particular testing (I did not know this or > probably would not have gone). And whatever he discovers--there is > nobody I'm working with...the best he could do is if he found a > sufficient immune deficiency get IVIG covered on my HMO which is > highly unlikely. He said the HMO's are very strict. So anyway docs use > him to monitor how successful antibiotic therapy is for their patients > and whether their disease is still active, OR he works with Mayo and > such clinics when people's immune systems are overactive, of course > giving them immunosuppressants. > > So there is nothing he has to offer me that I want. He did note that > my tonsils were shrunken--in fact he'd wondered if I'd had them out! > It seems to me that some other doctor commented on this recently and > nobody before then so I'm wondering if the months of high dose allicin > I took did something to my tonsils, as it did affect my salivary > glands and I really have oversalivation now. However, he also said > that b cell immune depression and shrunken tonsils can go together so > it could be due to that. So all I felt was depressed over the thought > that I don't have regular tonsils, completely dissed as a person who > is doing therapies that help her but that he thinks are completely > ridiculous (and no matter what we know or think, an encounter with a > doctor like this is bad for us, makes us feel somewhat hopeless for at > least a few hours), and basically reminded that the medical system as > I know it (not integrative medicine but regular medicine) is just > plain awful. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Hi Jill, most of my doctor's appointments are like this one you describe. I know that disappointed, or sometimes hopeless, feeling well. Don't let it discourage you. Go back and read your favorite articles or books by natural health doctors or complementary doctors. I wish I could find a really good complementary doctor knowledgeable about CFS and Lyme and willing to work with me on the DAN and Amy Yasko protocols. In the meantime, I will read Wikipedia, a few research studies, a few books (hopefully I can continue to read), and do the best I can. With Rich's advice thrown in, that just might turn out to be enough. Best wishes, Vickie > > > I am back from the immunologist, who is associated with Albert > Einstein, and it was an exercise in depressing futility. When I >told > him I do hyperbaric, small amounts of IVIG, and IV > vitamin/minerals/glutathione, I probably lost him. He dismissed it > all. He had no interest in hearing how these things helped me and >when > I told him there is a rationale for hyperbaric he said that all > funding had dried up for it because it had been proven that it did >not > increase tissue/plasma oxygen levels (what are you going to say to a > guy like that?). He also scoffed at the amount of IVIG I'm on, >which I > suppose I can understand, but one COULD say I'm glad that small >amount > is helping you but it is not sufficient. Because I got IVIG >yesterday > he could not draw any blood as my parameters would be skewed and > therefore he wants me off it a month and to come back. We did talk > about the various things that could show up--for instance, I could > have increased blood viscosity, overactive or undereactive b cells >>(he > mentioned the research showing lyme enters bcells), tnf, bla bla >bla. > But he usually works with doctors doing antibiotics as he has his >own > research lab but it can only take insurance and my insurance will not > cover it, and it is illegal for me to " donate " ...so I'd have to get a > PPO if I wanted his particular testing (I did not know this or > probably would not have gone). And whatever he discovers--there is > nobody I'm working with...the best he could do is if he found a > sufficient immune deficiency get IVIG covered on my HMO which is > highly unlikely. He said the HMO's are very strict. So anyway docs use > him to monitor how successful antibiotic therapy is for their patients > and whether their disease is still active, OR he works with Mayo and > such clinics when people's immune systems are overactive, of course > giving them immunosuppressants. > > So there is nothing he has to offer me that I want. He did note that > my tonsils were shrunken--in fact he'd wondered if I'd had them out! > It seems to me that some other doctor commented on this recently and > nobody before then so I'm wondering if the months of high dose allicin > I took did something to my tonsils, as it did affect my salivary > glands and I really have oversalivation now. However, he also said > that b cell immune depression and shrunken tonsils can go together so > it could be due to that. So all I felt was depressed over the thought > that I don't have regular tonsils, completely dissed as a person who > is doing therapies that help her but that he thinks are completely > ridiculous (and no matter what we know or think, an encounter with a > doctor like this is bad for us, makes us feel somewhat hopeless for at > least a few hours), and basically reminded that the medical system as > I know it (not integrative medicine but regular medicine) is just > plain awful. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 I get 5 grams every other week. I Used to get 5 grams every week but felt that it was affecting my blood pressure/blood viscosity. My cbc's have always been normal, before and during. Don't think i ever tested just b cells tho. > > > > I am back from the immunologist, who is associated with Albert > > Einstein, and it was an exercise in depressing futility. When I > told > > him I do hyperbaric, small amounts of IVIG, and IV > > vitamin/minerals/glutathione, I probably lost him. He dismissed it > > all. He had no interest in hearing how these things helped me and > when > > I told him there is a rationale for hyperbaric he said that all > > funding had dried up for it because it had been proven that it did > not > > increase tissue/plasma oxygen levels (what are you going to say to > a > > guy like that?). He also scoffed at the amount of IVIG I'm on, > which I > > suppose I can understand, but one COULD say I'm glad that small > amount > > is helping you but it is not sufficient. Because I got IVIG > yesterday > > he could not draw any blood as my parameters would be skewed and > > therefore he wants me off it a month and to come back. We did talk > > about the various things that could show up--for instance, I could > > have increased blood viscosity, overactive or undereactive b cells > (he > > mentioned the research showing lyme enters bcells), tnf, bla bla > bla. > > But he usually works with doctors doing antibiotics as he has his > own > > research lab but it can only take insurance and my insurance will > not > > cover it, and it is illegal for me to " donate " ...so I'd have to > get a > > PPO if I wanted his particular testing (I did not know this or > > probably would not have gone). And whatever he discovers--there is > > nobody I'm working with...the best he could do is if he found a > > sufficient immune deficiency get IVIG covered on my HMO which is > > highly unlikely. He said the HMO's are very strict. So anyway docs > use > > him to monitor how successful antibiotic therapy is for their > patients > > and whether their disease is still active, OR he works with Mayo > and > > such clinics when people's immune systems are overactive, of course > > giving them immunosuppressants. > > > > So there is nothing he has to offer me that I want. He did note > that > > my tonsils were shrunken--in fact he'd wondered if I'd had them > out! > > It seems to me that some other doctor commented on this recently > and > > nobody before then so I'm wondering if the months of high dose > allicin > > I took did something to my tonsils, as it did affect my salivary > > glands and I really have oversalivation now. However, he also said > > that b cell immune depression and shrunken tonsils can go together > so > > it could be due to that. So all I felt was depressed over the > thought > > that I don't have regular tonsils, completely dissed as a person > who > > is doing therapies that help her but that he thinks are completely > > ridiculous (and no matter what we know or think, an encounter with > a > > doctor like this is bad for us, makes us feel somewhat hopeless > for at > > least a few hours), and basically reminded that the medical system > as > > I know it (not integrative medicine but regular medicine) is just > > plain awful. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Yes, I have felt depressed most of the day, went to the hair salon to offset it I don't usually put myself in this position where I am seen as a bit of an idiot rather than respected. I did not tell him any of my credentials, though. I also don't want to be a set of tests with potentially " bad " results. It's funny but, as assertive as I can be in trying to get the care I want, I just get passive in the face of doctors like this. > > > > I am back from the immunologist, who is associated with Albert > > Einstein, and it was an exercise in depressing futility. When I > >told > > him I do hyperbaric, small amounts of IVIG, and IV > > vitamin/minerals/glutathione, I probably lost him. He dismissed it > > all. He had no interest in hearing how these things helped me and > >when > > I told him there is a rationale for hyperbaric he said that all > > funding had dried up for it because it had been proven that it did > >not > > increase tissue/plasma oxygen levels (what are you going to say to a > > guy like that?). He also scoffed at the amount of IVIG I'm on, > >which I > > suppose I can understand, but one COULD say I'm glad that small > >amount > > is helping you but it is not sufficient. Because I got IVIG > >yesterday > > he could not draw any blood as my parameters would be skewed and > > therefore he wants me off it a month and to come back. We did talk > > about the various things that could show up--for instance, I could > > have increased blood viscosity, overactive or undereactive b cells > >>(he > > mentioned the research showing lyme enters bcells), tnf, bla bla > >bla. > > But he usually works with doctors doing antibiotics as he has his > >own > > research lab but it can only take insurance and my insurance will > not > > cover it, and it is illegal for me to " donate " ...so I'd have to get > a > > PPO if I wanted his particular testing (I did not know this or > > probably would not have gone). And whatever he discovers--there is > > nobody I'm working with...the best he could do is if he found a > > sufficient immune deficiency get IVIG covered on my HMO which is > > highly unlikely. He said the HMO's are very strict. So anyway docs > use > > him to monitor how successful antibiotic therapy is for their > patients > > and whether their disease is still active, OR he works with Mayo and > > such clinics when people's immune systems are overactive, of course > > giving them immunosuppressants. > > > > So there is nothing he has to offer me that I want. He did note that > > my tonsils were shrunken--in fact he'd wondered if I'd had them out! > > It seems to me that some other doctor commented on this recently and > > nobody before then so I'm wondering if the months of high dose > allicin > > I took did something to my tonsils, as it did affect my salivary > > glands and I really have oversalivation now. However, he also said > > that b cell immune depression and shrunken tonsils can go together > so > > it could be due to that. So all I felt was depressed over the > thought > > that I don't have regular tonsils, completely dissed as a person who > > is doing therapies that help her but that he thinks are completely > > ridiculous (and no matter what we know or think, an encounter with a > > doctor like this is bad for us, makes us feel somewhat hopeless for > at > > least a few hours), and basically reminded that the medical system > as > > I know it (not integrative medicine but regular medicine) is just > > plain awful. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 I also don't want to be a set of tests with potentially " bad " results. It's funny but, as assertive as I can be in trying to get the care I want, I just get passive in the face of doctors like this. Jill, I think after so long being ill, we learn that we have to choose our battles wisely, there are times its just not worth the effort and we get better and better at recognizing when making the effort isn't going to give us any benefit, so why waste yourself? Sometimes its easier to just walk away and to the hair salon. This is the nature of the beast (medical system), I've been there so many times, its so demoralizing. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 I know. I do want to figure out the tonsil thing, tho. I'm not getting very far on google. > > > > I also don't want to be a set of tests with potentially " bad " results. > It's funny but, as assertive as I can be in trying to get the care I > want, I just get passive in the face of doctors like this. > > Jill, > > I think after so long being ill, we learn that we have to choose our battles wisely, there are times its just not worth the effort and we get better and better at recognizing when making the effort isn't going to give us any benefit, so why waste yourself? Sometimes its easier to just walk away and to the hair salon. This is the nature of the beast (medical system), I've been there so many times, its so demoralizing. > > Marcia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Glad you went to the hair salon. That always cheers me up. We (and the other people who know you well) know that you are not an idiot, and we are the only ones who count!!! That man was not a *healer* or he would not have made you feel like that. It doesn't matter how may degrees he had. Vickie > > > > > > > I am back from the immunologist, who is associated with Albert > > > Einstein, and it was an exercise in depressing futility. When I > > >told > > > him I do hyperbaric, small amounts of IVIG, and IV > > > vitamin/minerals/glutathione, I probably lost him. He dismissed it > > > all. He had no interest in hearing how these things helped me and > > >when > > > I told him there is a rationale for hyperbaric he said that all > > > funding had dried up for it because it had been proven that it did > > >not > > > increase tissue/plasma oxygen levels (what are you going to say to a > > > guy like that?). He also scoffed at the amount of IVIG I'm on, > > >which I > > > suppose I can understand, but one COULD say I'm glad that small > > >amount > > > is helping you but it is not sufficient. Because I got IVIG > > >yesterday > > > he could not draw any blood as my parameters would be skewed and > > > therefore he wants me off it a month and to come back. We did talk > > > about the various things that could show up--for instance, I could > > > have increased blood viscosity, overactive or undereactive b cells > > >>(he > > > mentioned the research showing lyme enters bcells), tnf, bla bla > > >bla. > > > But he usually works with doctors doing antibiotics as he has his > > >own > > > research lab but it can only take insurance and my insurance will > > not > > > cover it, and it is illegal for me to " donate " ...so I'd have to get > > a > > > PPO if I wanted his particular testing (I did not know this or > > > probably would not have gone). And whatever he discovers--there is > > > nobody I'm working with...the best he could do is if he found a > > > sufficient immune deficiency get IVIG covered on my HMO which is > > > highly unlikely. He said the HMO's are very strict. So anyway docs > > use > > > him to monitor how successful antibiotic therapy is for their > > patients > > > and whether their disease is still active, OR he works with Mayo and > > > such clinics when people's immune systems are overactive, of course > > > giving them immunosuppressants. > > > > > > So there is nothing he has to offer me that I want. He did note that > > > my tonsils were shrunken--in fact he'd wondered if I'd had them out! > > > It seems to me that some other doctor commented on this recently and > > > nobody before then so I'm wondering if the months of high dose > > allicin > > > I took did something to my tonsils, as it did affect my salivary > > > glands and I really have oversalivation now. However, he also said > > > that b cell immune depression and shrunken tonsils can go together > > so > > > it could be due to that. So all I felt was depressed over the > > thought > > > that I don't have regular tonsils, completely dissed as a person who > > > is doing therapies that help her but that he thinks are completely > > > ridiculous (and no matter what we know or think, an encounter with a > > > doctor like this is bad for us, makes us feel somewhat hopeless for > > at > > > least a few hours), and basically reminded that the medical system > > as > > > I know it (not integrative medicine but regular medicine) is just > > > plain awful. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 If you google " red crescents mycoplasma CFS " you really get a lot of hits. Ellen RE: Re: Immunologist No Fun > Google " red crescents mycoplasma " and you should find some interesting > info, including a few about CFIDS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Thanx everybody for being so supportive. I really do appreciate it and this list. I did not realize my HMO would not pay for his lab. I thought maybe I could get some specialized testing via his HMO but I can't. He is probably a good doctor for some folks but not for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Dear Jill: Having just been through some of what you describe with my own hematologist/immunologist, let me just say " I FEEL YOUR PAIN " !!! I can't even say I am getting any treatment just labs every three months following what he already knows are issues with me. The only things offered to me in the way of therapy are supplements that I would have to use under his care >Trans-D-Tropin @ $200 a bottle for example< that I really can't afford and that haven't seemed to have much outward effect. I think you can hit a plateau with a doctor... ie the end of what they can do for you either by lack of knowledge or interest. I myself have decided that since this is the best doc I have right now, I should just take what I can from his knowledge and visits while also seeking help elsewhere. In other words... " TAKE WHAT YOU CAN AND LEAVE THE REST " . I have come to the conclusion that it is not possible to get all the help I need from one place. Maybe I just haven't been to the right doctors though. In any case, hang in there and reclaim your power. If you have gotten help from the IVIG and other treatments and still have someone willing to give them to you...I say carry on. It is a shame & very frustrating that doctors practicing integrative medicine seem to be so hard to come by. The best we can all do is to arm ourselves with knowledge and to know that we know our bodies better than anyone else!!!!!!!!!!!!!! P.S. When in doubt, the beauty shop IS the best medicine! Best Regards, Teena On Thu, 16 Mar 2006 18:22:04 -0000 " jill1313 " <jenbooks13@...> writes: > I am back from the immunologist, who is associated with Albert > Einstein, and it was an exercise in depressing futility. When I > told > him I do hyperbaric, small amounts of IVIG, and IV > vitamin/minerals/glutathione, I probably lost him. He dismissed it > all. He had no interest in hearing how these things helped me and > when > I told him there is a rationale for hyperbaric he said that all > funding had dried up for it because it had been proven that it did > not > increase tissue/plasma oxygen levels (what are you going to say to a > guy like that?). He also scoffed at the amount of IVIG I'm on, which > I > suppose I can understand, but one COULD say I'm glad that small > amount > is helping you but it is not sufficient. Because I got IVIG > yesterday > he could not draw any blood as my parameters would be skewed and > therefore he wants me off it a month and to come back. We did talk > about the various things that could show up--for instance, I could > have increased blood viscosity, overactive or undereactive b cells > (he > mentioned the research showing lyme enters bcells), tnf, bla bla > bla. > But he usually works with doctors doing antibiotics as he has his > own > research lab but it can only take insurance and my insurance will > not > cover it, and it is illegal for me to " donate " ...so I'd have to get > a > PPO if I wanted his particular testing (I did not know this or > probably would not have gone). And whatever he discovers--there is > nobody I'm working with...the best he could do is if he found a > sufficient immune deficiency get IVIG covered on my HMO which is > highly unlikely. He said the HMO's are very strict. So anyway docs > use > him to monitor how successful antibiotic therapy is for their > patients > and whether their disease is still active, OR he works with Mayo and > such clinics when people's immune systems are overactive, of course > giving them immunosuppressants. > > So there is nothing he has to offer me that I want. He did note that > my tonsils were shrunken--in fact he'd wondered if I'd had them out! > It seems to me that some other doctor commented on this recently and > nobody before then so I'm wondering if the months of high dose > allicin > I took did something to my tonsils, as it did affect my salivary > glands and I really have oversalivation now. However, he also said > that b cell immune depression and shrunken tonsils can go together > so > it could be due to that. So all I felt was depressed over the > thought > that I don't have regular tonsils, completely dissed as a person who > is doing therapies that help her but that he thinks are completely > ridiculous (and no matter what we know or think, an encounter with a > doctor like this is bad for us, makes us feel somewhat hopeless for > at > least a few hours), and basically reminded that the medical system > as > I know it (not integrative medicine but regular medicine) is just > plain awful. > > > > > > > This list is intended for patients to share personal experiences > with each other, not to give medical advice. If you are interested > in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
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