Should I see a different doctor?

Discussion in 'Fibromyalgia Main Forum' started by Malcolm82, Sep 3, 2008.

  1. Malcolm82

    Malcolm82 New Member

    I had my monthly appointment with my CFIDS doctor two days ago, and I have been, I don't know, confused I guess, ever since.

    First of all this is the doctor that finally diagnosed me with CFIDS the first time I saw her. She practices conventional medicine combined with holistic medicine and is board certified in both. When she diagnosed me, she told my wife and I that she had treated many people like me, successfully. It was the first acknowledgment from a doctor that I had had that it wasn't all in my head and that I could be helped. She is not in my insurance policy's group, so I have had to pay from $160 to $250 for each appointment depending on how long she spends with me. Since I got fired I had to change insurance, and the policy I selected has 75% coverage for out of network providers after a $250 deductible. This last appointment cost me $230 so I have almost reached that already.

    She is treating me with testosterone replacement therapy, a blood type "O" diet, medical food, and nutritional supplements mostly, to the tune of about $800/month. Therefore it has been costing me about $1000/month to be treated by her.

    The first time I saw her, she ordered 8 vials worth of blood tests and found several things wrong: low testosterone, low vitamin D and B12, high homocysteine, high hemoglobin A1C, and high triglycerides. After getting the results, she put me on her treatment regimen and said I would likely be better in 2 weeks to 2 months. Yippee!

    Over a period of 2 months, my blood tests all came into the normal range, which I figured proved her treatment regimen was working, but I wasn't feeling much better. Same fatigue, same pressure in head, same headaches, with a new symptom, nausia. After 2 more months the headaches did reduce in frequency, the nausia went away, and I wasn't sleeping as many hours. I thought these were positive signs.

    After 4 months, I started to get worse. She tested for heavy metals and found excessive levels of lead, and put me on a detox regimen using two other supplements, $80 more a month.

    It is now 7 months since she started treating me and I'm not really improving anymore, except I only get severe headaches about twice a month now. I have the same fatigue, pressure in head, low energy, that I had when I first saw her.

    At my last appointment, I voiced my concern over not having any improvement with the fatigue. She said I was probably sicker because of the detox process and had me stop taking one of the detox supplements for the time being. I think she could clearly see that I am getting impatient with my lack of progress. After my appointment was over, my wife asked to see her alone, without me in the room.

    After we got in the car to go home, I asked my wife what she had talked to the doctor about. She said she had asked her how many of her patients with the same symptoms as me had recovered completely, and how long it took. The doctor said about 95% of her patients had recovered, and it took for 3 months to 3 years.

    Her success rate seems to my wife and me to be pretty high compared to what we have read about other prominent CFS doctors and their patient's recovery rates.

    We are both starting to feel skeptical about her, especially with her high success rate claim and my lack of significant progress.

    My question is do you guys think we are off base in our skepticism? My wife has been feeling this way for a while, and now I'm starting to. We are going into debt financing this and I'm not even sure it is worth it.

    Any input would be appreciated.

  2. ladybugmandy

    ladybugmandy Member

    depending on how long you have been sick, it could very well take years for you to see improvement. so she is not necssarily a bad doctor. but if i could choose whom to see, i would see:

    dr. a. martin lerner in MI or if you are out west, dr. jose montoya at stanford.

    if you can't get in to see these doctors, try dr. enlander in NYC, dr. dantini in fla (i think), or dr. bateman (not sure where she is).

    there are some other good ones too; perhaps someone on this board could recommend some more.

    best of luck
    sue long have you had CFS and how did it start?

  3. Catseye

    Catseye Member

    What exactly is she doing about gut dysbiosis and digestion? Are you taking any betaine hcl or enzymes? Have you done a stool analysis? I'm getting treated by an alternative doc and it's working beautifully. See my thread "toxic guts, toxic body, why do a comprehensive stool analysis" for details.

    The first things he treated were inflammation and low stomach acid. He was able to find out several problems based on my stool analysis and made several supplement and diet recommendations. Then he moved right on to detox. But the betaine hcl was extremely important. My fatigue is drying up. I can now ride a bike and lift heavy objects. I was bedridden in the beginning. Between the doc and myself, I'm getting over this.

    Also, the antioxidant enzymes superoxide dismutase and catalase are very important for fatigue and post exertional malaise. I found some concentrated sprout pills that are the precursors for these enzymes and they work great for me. See my thread "Mitochondria's role in PEM (crash) and how you can reduce it".

    You can maybe work with your doctor and fix yourself, it's possible she is just missing some things. But digestion and gut dysbiosis are crucial, they will keep you sick if they are not addressed.

    good luck

  4. jasminetee

    jasminetee Member

    I've been to several doctors like that, they were MDs but were still considered alternative doctors. They gave me statistics like that too for their patient recovery rate but when I asked, they never had any patient who had recovered that i could talk to.

    I saw the doctor I liked the best out of that lot for over a year. The only thing he ended up helping me with was telling me to drink Psyllium every day.

    My LTD did not take him seriously and in order to get my LTD I had to see a regular MD. I found my current MD by asking my local CFS support groups for recommendations. My current MD doesn't charge the $300.00 an hour and she writes way better notes than the doctor who did charge that much. She happened to have been through some CFS training by Cheney and Peterson as well.

    I also found a Rheumy through my support groups and he Dx me with FMS which is what my LTD changed my Dx to from Depression.

    I hope my story can help you.
  5. marti_zavala

    marti_zavala Member

    No CFIDS doctor has ever gotten anywhere near 95% recovery rate. If someone did, we would all be there and be recovered.

    also stating 2 weeks to 2 months is another ridiculous lie. Sorry, 2 years at a minimum.

    She is an irresponsible doctor who is not being realistic.

    I think she is on the right track with what she tested you for but that does not warrant these unrealistic promises NOR her high rates.

    My opinion.
  6. Malcolm82

    Malcolm82 New Member

    Thanks for your input.

    I think my CFIDS started when I got pneumonia in 2003. Before that, I hadn't been hardly sick at all. Since then my health and energy level have steadily deteriorated until it got so bad about a year ago that I had to leave work on disability.

    The different CFIDS doctors that I have read about all seem to have different treatment protocols and I really had not had much of a reason to believe she was not on the right track except (1) I haven't improved like I wish I would, but it sounds like that is the frequent nature of this DD, and (2)I now think her claims of the success rate of her treatment and the time it takes sound a bit over blown. I know she can't give me names of her other patients due to HIPPA laws, so I guess I can't verify her claims. She has a pamphlet that is filled with glowing testimonials from her patients, has been practicing for about 20 years, and everything I have found on the internet about her has been good.

    She hasn't checked anything specific to my gut except have me on this medical diet to avoid food toxins and sensitivities that could aggravate my condition. She also avoids prescribing drugs because people with CFIDS are usually very sensitive to them.

    I have been unable to find another CFIDS doctor in my area, and she has been very good about filling out by disability paper work and has agreed to help me with my SSDI application.

    I guess I'll stay with her for the time being unless I can find another doctor who has a good history treating CFIDS to at least get a second opinion from.

    PITATOO Member

    Sorry I did not answer this until now but hope this helps shed some light. 1,000 a month seems quite high. I have been studying bio-identical hormone replacement for quite a while. I am now on a course of HGH and soon to start Testosterone. There are many more Dr.'s out there now days that specialize in BHRT - do some searching and reading on the net. My test is around 60 a month for my specialized dosage which is in compounded cream form. Blood tests are necessary based on your Dr's desire and what you find out in your searching. I strongly believe BHRT to be the answer for many of life's diseases and health issues. I am now able to work out 3 days a week, some weeks 4, I work out with weights and run on opposite days, only a mile every other day but from where I was when I was first diagnosed with FMS and CFIDS I am a new person. I could go on and on about the benefits of BHRT but you need to figure that out for yourself. By the way I am a 45 yo Male who has had FMS/CFIDS since 1994. I still have a ways to go but it took me a long time to get this bad so it will take me a while to be where I should be and start enjoying life again as a 45 yo should. Not as I felt a few months ago(felt like I was 75 or older). I still have bad days and still require naps every now and then but I am doing oh so much better. Also diet, exercise, supplements, protein.......cleansing. But you can't do it all at once and it has to be in your budget. Otherwise it will overwhelm you and make you sicker. Good luck and hope to hear from you to see how you are doing. - Bobby
  8. Janalynn

    Janalynn New Member

    I'd ask how many patients she has that she treats- not a percentage. If she has 100 patients with a 95 % success rate she should be able to give you at least 10 or 20 people who'd be willing to talk to you. Most people who are happy with their treatment and recovery are happy to share. 100 patients - she'd have 95 very happy patients.

    I say listen to your gut. That's often our best compass.
  9. doxygirl

    doxygirl New Member

    I had made up my mind to post to you and say " LISTEN TO YOUR GUT" ESPECIALLY YOUR WIFES!!!!!!!!

    I do not mean to be sexist in any way but I do believe that women have a high intuition, and most of the time our guts are right!

    Your wife talked to this Dr because her gut told her to....that is enough to convince me that you need to move on!

    Basically you now know what you want to why not try to find a dr that will continue where you leave off with that you do not have to pay so much for!

    I think Bobby is onto a good thing with the certainly cannot make you any worse to check your hormones in line!

    My Dr who has a PH degree also has a lot of his patients on HCG hormone as he has studied and found that it indeed helps many of his patients!

    Good luck
  10. Shalome1990

    Shalome1990 New Member

    I have to go out of town 6 hours to see my FFC doctor. I have had this for 20 years. She was very upfront in telling me that...1. they do not take insurance, I pay out of pocket, and then get reimbursed whatever my policy reimburses me. 2. It would take me 12 to 18 months to get better. 3. That I may never be 100% better, but I could get some of my life back. Maybe I am a sucker, because I am paying through the nose, and I am using a CC to pay for the services because I don't have the money. But I can say that since May I have had more good days than I have had in the last 19 years.

    So, maybe you got a bad doctor. Maybe it will take longer than she said. But, I think you do have to have a doctor who is an MD but also holistic because they can use the best of both methods to treat. One of my big problems is candida, which I tried for years to treat holisitically, and I could never get it cleared up. My FFC Doctor prescribed diflucan for 3-4 months and it has helped me a lot. I did have the "herx" at first from the dieoff, and I can't say that I am any more than 20% better, but for as long as I have had this crappy syndrome/disease, I will take any feeling better.

    Oh, and all of my supplements are more expensive than any of the medications I take. When I take medicine from a real pharmacy (not compounding because I get a lot from there) I can use my insurance.

    I think doctors/insurance companies/and pharmacies have joined to keep us sick. But, that is my 2 cents.
    [This Message was Edited on 11/11/2008]