Doc's reaction

Discussion in 'Fibromyalgia Main Forum' started by UsedtobePerkyTina, Dec 23, 2009.

  1. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    there was a thread on here that I can't find now. It was about how the doctors respond. I had posted that my doctor already knew the XMRV news and said she would suggest some antiviral supplements at my next appointment.

    Yesterday we met. She said she uses Crane Hill because she trusts the supplements because they are made in the U.S., which means unlikely to have toxins, I forgot which ones. But she said they are grown here and packaged in U.S. (This is as opposed to China). But she said they are the type of herbs that Chinese use. She was to e-mail me the specific ones to get. I haven't gotten it yet.

    This is really my second time, well, third if you count the first time when we just discussed my history and what tests she wanted to run.

    We had a very frank long talk. I asked her to be honest with me and tell me what she thinks of CFS. She was sitting next to me. We were talking more like two girlfriends at lunch.

    She said she thinks it will turn out to be many things in CFS, but some of it will likely be this virus, and there may be some with other initial causes.

    I asked her if she thought it was psychological, depression. She looked quizzical, "You're not depressed," she said. She asked if I had a doctor tell me that. I told her I had one tell me the fibromyalgia and CFs are not organic illnesses but are a "different kind of depression." So I wanted to make sure she was not secretly thinking that. She said, "But depression is organic." We talked about how chemicals in brain affect mood. Then she also mentioned that adrenal fatigue is measurable. (My test results showed that as part of my problem.)

    She also told me she likes family practice because she believes that all body systems are interrelated. She believes that you can often solve a problem by making a change in one part of one system and it will solve a problem in another body system. She said something like she solved a person's hypertension by changing their diet by taking out sugar. She said most don't think sugar has an effect, but she said it does. (I think it was sugar.)

    Anyway, she went on to say she has one patient that is having continuous headaches, but she said, "I think she has CFS, but I haven't put that label on her yet." She is looking at what she can do to stop the headaches.

    She said she finds the interrelation more challenging, but also more interesting.

    As a side note, she noticed my temperature is consistently low. She said she just studied "Wilson's ?." I forgot the last part of the name. She said something about when a person has a stressor, such as a virus, the body may be depleted and it goes into famine mode. This affects the thyroid so that the body keeps the temperature low to conserve energy. She said it can be reset. So she wants me to take my temperature three times a day for four days and call in the average. If it is low, she wants me to start taking T3 with the Synthroid. I told her I am ok with doing that because I was on a medicine that had both T3 and T4. So if we do this, it is the same as what I had with the other doctor, only in two meds instead of one.

    I asked her about Immunovir for antiviral. She didn't know anything about it. I will let you know the antiviral supplements she suggests when I get her e-mail.

    I told her of my concern for cancer. She agreed and said I need to be taking Iodine. I told her I try to eat more salt. She said it isn't enough because of the flouride and bromonide (? I am sure that is wrong) and chlorine added to water now. The iodine is needed to counter the affect of these things, she said.

    All the rest is to remain as is. I am taking cortisol and she said it is reading much better now.

    I will stay on Ambien CR. I will stay on Vit. D3. Although I asked her that if the virus is living in the immune system cells, is there anything that might be designed to help the immune system that is actually causing the virus to replicate more. She said she doesn't ascribe to it, but there is a theory that says it is the case. She said for me to look up the Marshal protocol. She doesn't go along with it, but she said I might want to look it up too.

    I am so glad I have a doctor I like. She isn't a CFS expert and there is a lot she doesn't know. But I like her approach.
    Tina



    [This Message was Edited on 12/23/2009]
    [This Message was Edited on 12/23/2009]
  2. quanked

    quanked Member

    thought I would give it a try. I checked to see where you are from--too far from me. I live in southern Oregon.

    If you are able, would you ask your doc if she knows of any good docs in this part of the country? By good, I mean someone open, willing to think outside of the box, does not see these dd's as stemming from pyschological causes, and so forth. Your doc sounds like she is in this category. And she is willing to work with you. I have had doctors like this but not right now and not here.

    I feel like I loose ground each year. Some of it is subtle and some not. I want my life back, as we all do, but I am now willing to settle for any improvement I can get.

    Southern Oregon towns are Ashland, Medford, Central Point, Grants Pass, Klamath Falls, Lakeview and sort of southern, more central is Bend (towns of some size).

    Glad you have supportive medical care--she is a find--especially with these dd's. Thanks for sharing.
  3. gapsych

    gapsych New Member


    Not to rain on your parade, but I saw some red flags that may or may not be of concern to you.

    1. Just because a supplement is made in the US does not mean it is safe. Supplements should not be the first line to treating someone unless there is an actual deficiency or has some testing behind it. There is really no oversight to supplements.

    2. Did she give you a thyroid test for T3, T4 and antibodies?

    3. Low temperature especially in the morning is NOT necessarily an indicator of thyroid problems. It is only one possibility out of many. If she prescribes the synthroid and T3 just because of low temperature without a blood test, I would be concerned. Hopefully, she took a blood test.

    4. While cutting down or eliminating sugar is not a bad idea, I have not seen any research that backs this.She may be treating patients this way but is it scientifically proven it will decrease blood pressure. I will look on PubMed as I simply don't know.

    5. Most people in this country do not need to take iodine. I have not seen any studies to show that we need iodine to counter the effects of ingredients in water other than camping or when you don't know the safety of the water you are going to drink. You have to be very careful taking iodine if you have Hashimotos. This is why it is important to have the antibody test for Thyroid.

    6. Does she have any ties to the vitamins she recommends? She may not be doing this but any doctor who treats patients and sells supplements has a conflict of interest.

    7. What kind of test did she give you for your cortisol? The saliva test is not as reliable. If she is saying you are deficient, a doctor should probably refer you to an endocrinologist. She is absolutely right that a change in one part of a system can effect other parts.

    I understand you like her approach. I like my doctor's approach which is very similar as far as style, however she is a scientific based doctor.

    I am not a doctor so the above are my opinions based on what research I have done. If I have made any inaccurate medical statements (SBM), someone let me know.

    Take care

    gap

    I looked through the literature and while high blood sugar can increase your chances of having high blood pressure, that is not the same it being cured by eliminating sugar if you are not pre or Diabetic.


    [This Message was Edited on 12/23/2009]
    [This Message was Edited on 12/23/2009]
  4. gb66

    gb66 Well-Known Member

    You are so fortunate to have such a good doctor. She sounds wonderful. Caring and intelligent. I wish I lived close to her. GB66
  5. gapsych

    gapsych New Member


    I always will Jam. If people want to take what I say with a grain of salt, that is okay. I am giving information.

    But never the twain shall meet when it comes to alternative/integrative doctors, who I believe or really alternative. Physicians are either one of the other.

    I would never touch an alternative doctor.

    Is that so different than what you are saying? I don't think so.

    Let's get back to the topic and not make "nanny nanny boo boo" statements about a person. which often happens when people do not have any facts behind their beliefs.

    Attack my arguments, not me.

    Tina will make her own decision.

    gap
    [This Message was Edited on 12/23/2009]
  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I'm sorry I didn't go into a lot of details. Some things are just assumed to us with CFs.

    Here are the answers:


    Your point: 1. Just because a supplement is made in the US does not mean it is safe. Supplements should not be the first line to treating someone unless there is an actual deficiency or has some testing behind it. There is really no oversight to supplements.

    Answer: She said there are other good supplement companies, but they require the doctor to sell the products. She said she trusts this company because she checked them out. It isn't just that it is in U.S., but she is more concerned that supplements from China will have some toxic stuff. I can't remember if it was arsenic or mercury or something. She particularly said seaweed from China is good, except it is more likely to have the toxic stuff. So this company she checked into, in addition it is made in U.S. instead of China.

    Your Point: 2. Did she give you a thyroid test for T3, T4 and antibodies?

    Answer: I don't know what all she tests for in the thyroid. But I particularly mentioned reverse T3 in a previous visit and she said she is aware of that. I don't know about antibodies. She does the saliva test. I don't know if thyroid is included in that. I know it checks many other things. I will not start the T3 (in addition to T4) until we know after three days of checking temperature at three hour intervals shows it actually is low.

    Your point: 3. Low temperature especially in the morning is NOT necessarily an indicator of thyroid problems. It is only one possibility out of many. If she prescribes the synthroid and T3 just because of low temperature without a blood test, I would be concerned. Hopefully, she took a blood test.

    Answer: See number 2. I know she ran some blood tests. I don't know which ones were included. She is not concerned about low temperature in the morning. She is wanting to know my average throughout the day, four days in a row.

    Your Point: 4. While cutting down or eliminating sugar is not a bad idea, did I have not seen any research that backs this.he may be treating patients this way but is it scientifically proven it will decrease blood pressure. I will look on PubMed.

    Answer: I may be mistaken about saying it was sugar. It was something not commonly associated with hypertension. And she is a she, not a he.

    Your Point: 5. Most people in this country do not need to take iodine. I have not seen any studies to prove or disprove that we need iodine to counter the effects of ingredients in water other than camping or where you don't know the safety of the water. You have to be very careful taking iodine if you have Hashimotos. This is why it is important to have the antibody test for Thyroid.

    Answer: Next time I talk to her about antibodies. I do have hypothyroidism. But I think from my previous doctors they thought the problem was not Hashimoto's but further up the chain. I am sorry, I have a headache tonight. I can't remember from three years ago. But it was something about a problem in the pituitary and hypothalamus as opposed to autoimmune.

    Your Point: 8. Does she have any ties to the vitamins she recommends? She may not be doing this but any doctor who treats patients and sells supplements has a conflict of interest.

    Answer: That occurred to me. Almost right across the street from her office is a supplement store. That is why I asked why she is referring me to this company. I already wrote what her answer was. But since she said other companies require the doctors to sell them in office, it is possible she is getting a kick back. I doubt it, just knowing her personality. But since many doctors see no problem in selling supplements in office, it is not far fetched that some might have a kick back program. It is worthy of asking the question. But it is entirely possible also that she just doesn't want to send people across the street so they get stuff from many different companies she hasn't checked out. It may just be she is being responsible. Considering how much effort she puts into continuous education and how excited she is in helping people, I think her recommendations are in the patient's interest.

    Your Point: 9. What kind of test did she give you for your cortisol? The saliva test is not as reliable. If she is saying you are deficient, a doctor should refer you to an endocrinologist. She is absolutely right that a change in one part of a system can effect other conditions..

    Answer: I was not aware that the saliva test is not reliable. But I thought it was considered much more reliable than the blood test because of how cortisol fluctuates. What the saliva test showed months ago is what is exactly expected in CFS. I am overall low, and I peak in the evening instead of morning. A doctor I saw in another city three years ago also said I was low in cortisol. Neither of them are endocrinologists. I did see one of those though, he overmedicated me with Synthroid and then said I have CFS or FM and said he couldn't help me. He referred me to a rheumatologist.

    Your Point: I understand you like her approach. I like my doctor's approach which is very similar as far as style, however she is a scientific based doctor.

    We all have free choice but I would be somewhat concerned as it sounds like she is not science based. I am not a doctor so the above are my opinions based on what research I have done.

    Answer: I don't know why you assume she is not science based. Maybe it is because I didn't tell of the blood tests she ran before my appointment. I did that on another post, or did I? Again, sorry, not doing well tonight.

    Gap, I will say that I am in a desert when it comes to CFS doctors in Birmingham, AL. Don't get me started on this issue. While my doctor is no Nancy Klimas, Peterson or Komaroff, or Cheney, but in this area, I take what I can. And at least I have a doctor that is willing to look at cortisol, use saliva tests and include supplements with medicine treatments. She is still trying to learn. And she knew about the XMRV despite her being just a family practitioner.

    If you know of a better doctor in Birmingham, Alabama, please tell me. I have been through five here, including one that specializes in dysautonomia. I went through my gynocologist who finally figured out what I have, but said he doesn't treat it. I had an internist say I had a "different kind of depression" because he doesn't believe CFS or FM are organic illnesses. I went through an endo who upped my dose of thyroid before he ran a blood test. I saw a rheumatologist who didn't treat CFS, said I don't have FM and said maybe I should see a neurologist. That is in Birmingham. It doesn't include the two doctors I saw in Atlanta.

    I like that she listens to me and is not offended because I am very knowledgeable about CFS. She isn't defensive. We are working as partners.

    Tina


    [This Message was Edited on 12/23/2009]
    [This Message was Edited on 12/23/2009]
    [This Message was Edited on 12/24/2009]
  7. gapsych

    gapsych New Member


    If you like this doctor, stay with her. That was certainly not the intention of my post.

    However, I would keep a copy of your medical records. Many of us have learned that lesson the hard way.

    gap
  8. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Thanks for the tip.

    but honestly, if you know of a better one or if you see something specific that concerns you, feel free to tell me. We are all just doing the best we can.

    Tina
  9. gapsych

    gapsych New Member


    Please go to the health board where I have posted an article which answers some of the above questions.

    The doctor may be personable but some of her recommendations are way off. Some of them are not accurate medical information.

    Another good site is What'stheharm.com. I will not comment further as I don't want us to hijack this post.

    You have posted threads that disagree with me in posts I have started. I don't mind that. Just cut the personal stuff.

    Tina, I am sorry we got off track. I am glad you found a doctor who suits your needs. It looks like you are doing your research and are in a bind when it comes to finding doctor's in your location.

    You do not have to answer to me or anyone else. You don't have to defend what you are doing. People have different opinions.

    I will not comment further on this post as I don't want us to hijack it.

    Thanks.

    gap

    [This Message was Edited on 12/23/2009]
  10. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    gap, I was not offended. I used to be a newspaper editor, debate and different opinions are good.

    I did not think I was personal. And yes, I have disagreed with people, if everyone agreed, we would never learn.

    I am not going to be checking out the sites you referred to. I have had CFs for six years, fibromyalgia for three. I have researched and researched and researched. There is still much I don't know, but I do know that this approach is not unusual among doctors who use both supplements and medicines.

    But, I will keep your points in mind and be more alert to the possibility of problems, and I think I will ask if she is getting any money off the supplements she recommends.

    Tina

  11. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Well, it isn't Crane Hill. Forgive my mixed signal CFs mind. It is Crane Herb.

    Here is link to their Web site: http://www.craneherb.com/web/patient/about/about_home.aspx

    Tina
  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    And this is what she prescribed: http://www.craneherb.com/web/shared/products/product.aspx?ua=2&id=780

    Tina