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New doctor, finally on meds

Discussion in 'General Treatment' started by madietodd, Jul 25, 2013.

  1. madietodd

    madietodd Senior Member

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    On Monday I went to a local doctor who specializes in complex diseases, especially CFS. I put it off because he's expensive and doesn't take insurance, but........it's time.

    The appointment was for an hour. I walked into the treatment room and my "chair" was a big comfy couch. OK, he gets it. I brought all of my test results from Dr. Rey and others, from the past year, but really my primary question was could he help with sleep??? I was pretty out of it, so it was lucky that he used the test results to keep the conversation moving.

    He sees 3 areas of dysfunction - candida, sleep, and blood pressure/volume. I asked about immune problems, and he said no since I have no history of swollen glands, fevers, etc.

    So I'm on

    .1mg Fludrocortisone (Florinef) 1st am. If this doesn't help, I switch to Cortef after a week.

    200mg Fluconazole (Diflucan), low carb diet. [I already take a probiotic.]

    Thorne Red Yeast Rice after dinner, with fish oil, for high cholesterol.

    100mg Gabapentin (Neurontin) at bedtime, 2 hours separate from magnesium, increasing slowly to 300mg if needed. For sleep, specifically restless legs.

    100mg Progesterone at bedtime, increase if I increase the Gabapentin, but only to 200mg. I didn't write down why he prescribed this, sigh. I'll ask.

    He's referred me for a CT calcium scoring/screening test, which is apparently to see if there's been any heart damage. So he gets that piece of the CFS puzzle.

    Sleep improved immediately, from 3-4 wakings in an 8 hour night to one. I'm having trouble getting to sleep, and getting back to sleep now, but it's not awful. Cognitive function is better, and day one I was a bit of an energizer bunny! But then yesterday I was more of a couch potato.

    He's ordered cortisol, dhea, and testosterone testing. If the Florinef/Cortef doesn't help, we'll do a tilt table test, and might try yohimbine.

    I take magnesium, potassium, and sea salt......does anybody know if/how I need to adjust this while on the cortisone?
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maaadddiiiee! go girl, good to hear from you. sounds like your getting some improvements and hopefully more with this new guy.

    cheers!!
  3. Moxie

    Moxie

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    He sounds thorough and it seems like it was an over-all positive experience for you. I hope the treatments help!

    Would you mind sharing the name of your doctor? I'm on the east coast, too. And much as I'd like to see Dr. Klimas or Dr. Rey, they are still not accepting new patients.

    Good luck and good sleep!
  4. Ema

    Ema Senior Member

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    I'm really excited for you! It sounds like you've found someone much more open minded than usual...

    I've got a couple thoughts for you though...especially with regards to the fludrocortisone. I used that med successfully for about 2 years and it was a huge help but it can be tricky at first. It mimics aldosterone in the body and therefore helps the body retain sodium. This increases the fluid in your body and can raise your blood pressure. For me, this was a godsend. But totally changing the fluid balance of your body can cause headaches and other side effects at first if you increase too fast. I started on 1/4 tablet and increased by 1/4 tablet every 2-4 weeks until I got to 2 full tablets and had zero problems. I don't think it's possible that you will know in a week if it's going to work for you. I went slower than normal probably but it took me 6 months.

    You do need to take additional salt and usually slow release potassium while on Florinef (Florinef is a potassium wasting drug). This is based on your own labs but for me equated to about 3 teas a day of good sea salt (not refined salt) and 80 mEQ of slow release potassium. Be careful with potassium though as too much is a BIG problem. Titrate slowly based on labs. I got labs every two weeks while titrating Florinef. It was a huge inconvenience but I also had no issues with my electrolytes.

    Also, Florinef and Cortef are both adrenal steroids but they do not do the same things. Florinef is a mineralocorticoid and Cortef is a glucocorticoid. Totally different functions and totally not interchangeable (though Cortef does also have some minor mineralocorticoid activity).

    And testing cortisol (hopefully with a saliva as well as a serum test) while on any steroid like Cortef is completely unreliable. Some people even suggest stopping progesterone (which is technically a steroid hormone as well) before testing but I think if you are still in the "normal" range, it is fine to carry on with progesterone.

    Oral progesterone should only be taken in my opinion if you have tested low on labs. It's still a steroid and progesterone dominance is a real thing with real side effects that tends to be overlooked by most docs. Oral P metabolises to allopregnanolone which has activity like a benzo...it can make you sleepy which can be a plus or a minus. It made me feel groggy and hung over the next day.

    Hope that helps!

    Ema

    PS I think we have a friend in common? Mike Uggen worked with me for almost a year.
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  5. SOC

    SOC Moderator and Senior Member

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    That's a little over-simplified and perhaps misinformed, IMO, since many of us don't run fevers because of autonomic problems including body temp control. If you have immune tests from Dr Rey that show clear immune dysfunction, I wouldn't let the immune issue drop. If your immune tests were fine, this is all moot, of course. :)

    I'm with Ema in that a week isn't likely to be long enough to see the full effect of Florinef. I also agree that you'll have to watch your potassium with Florinef. I manage by drinking electrolyte-balanced water (ElectroMix in water) as my primary fluid so that I know I'm getting the right amount of potassium (and other electrolytes) for the amount of water I drink. Easier for me than trying to guesstimate how much potassium, etc to take.

    It's great news that you have found a doctor who seems to understand your illness and treats you well! That kind of doc is hard to find. Best of luck with your treatment plan!
    beaker and L'engle like this.
  6. Ema

    Ema Senior Member

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    SOC is totally right. I meant to say that as well...I don't have much of a history of swollen glands or fevers either yet I have the full trifecta (EBV, HHV6 and CMV).

    Ema
  7. SOC

    SOC Moderator and Senior Member

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    Another thought -- if you do have immune dysfunction, all those steroids could be a big problem because they can suppress your immune system. That's one reason you don't see the top ME/CFS docs using a lot steroids.

    If your immune system is over-active, they could be a help, of course. :) Early in my illness when I had a lot of sensitivities, a Medrol Dosepak was like manna from heaven. I stopped reacting to everything and felt a lot better. Even so, I could only take it once or twice a year. Steroids are fine until your immune system gets suppressed, or you start developing cataracts, or....
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  8. madietodd

    madietodd Senior Member

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    Moxie, http://annapolisintegrativemedicine.com/

    Re titration, I started right in at .1 and haven't had problems. But remember that my case is pretty mild. I'm up and about most of the day. I only know I have a blood pressure issue because Dr. Rey made me test it 3x a day for 3 weeks, and it was all over the place.

    Re immune function, I was positive for EB virus IgG (31.68 + if >20), for HHV6 IgG (1.76, + if >1), for Parvo IgG (1.3, + if >1.1). My NK cells are high in number but low in activity (5.6, normal 13 +/-8). So yeah, I'll ask about this again.

    We'll try Cortef next because it worked really well for me years ago, and he thinks it worked because it increased salt. How long do you all think I should stay on the Florinef at the full dose? What kind of changes am I watching for?

    I'm a bit worried that he didn't say anything about electrolytes. I'd told him how much salt/mag/potassium I take, so maybe he just thought that was enough. But he said nothing about follow-up blood work.

    I got stuck with Dr. Rey in a few places. I tested + for Lyme disease, and she said she couldn't treat anything else until that was fixed. So then I fell down the rabbit hole of Lyme testing and treatment and just gave up on it after 2 months of doxy. So I don't know if I can go back. Also I was scared to have a doctor in Florida prescribing major meds for me.......I didn't have a local doctor.

    He's left it up to me how soon I go back, as I told him money is an issue. My insurance carries a $2500 deductible, and then it only pays a fraction of his bill.

    Ema, how did you know that I'd met Mike?

    Thanks for all of your ideas; please keep them coming! I've got a file started of things to ask about.
    L'engle and Moxie like this.
  9. Ema

    Ema Senior Member

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    I totally disagree with you here.

    There is a BIG difference between physiological dosing and pharmacological dosing with steroids. Too much is indeed immunosuppressive. But steroids are crucial to the immune response. They are our strongest anti-inflammatory. And without an appropriate amount of steroids, we are unable to mount an appropriate immune response. Too little is as bad as too much in a different way.

    Physiological doses of steroids do not contribute to immune suppression. If they did, all healthy people with "normal" cortisol levels would be dropping dead of infection. Very few doctors I've met (including top ME/CFS doctors) seem to get this important distinction. And it is crucial!

    Ema
  10. Ema

    Ema Senior Member

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    I remember your user name from the MWEF Yahoo group and I asked Mike!

    Ema
    madietodd likes this.
  11. SOC

    SOC Moderator and Senior Member

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    Daughter and I started at 0.1 without problems, too, but we're not super-sensitive to meds. Do you have tachycardia?

    I don't think those viral numbers are particularly high, so I can see why your doc is not particularly concerned. Your NK cell activity appears normal, although at the low end of normal (Normal range: 5 - 21). So unless you have other immune dysfunctions, that's great news!

    I just felt better on the Florinef -- more alert/less fog, and I could stay upright a lot longer without feeling exhausted. We waited a long time, maybe 6 weeks, between dosage changes, but we might have been able to go faster. I'd give it a couple of weeks, at least, before I gave up on it.
    You're probably right -- he figured you were taking enough. It worries me a little that he isn't planning on checking your potassium at the very least. Maybe he was thinking about your budgetary concerns and figured your normal potassium intake should prevent you getting low potassium....?

    Did you ask why your new doc isn't treating you for Lyme? It sounds like Dr R thought it was pretty serious, not just a mild case. Lyme can cause you big problems, so I'd think your new doc would want to treat it. o_O Are you willing to share why you gave up on treatment after only 2 months of doxy?


    It stinks that we don't have local docs that know anything about this illness, doesn't it? It's not like you can drop in and have Dr R look at you if things aren't going well. It sounds like you've found a local guy who is doing a lot to help you, which is a big plus.
    Your doc has prescribed a number of meds all at once, so it might be hard to know what's doing what. I'd want to stay in fairly close contact with the doc until you see how it's all working out for you.

    Red yeast rice can be risky and should only be used under the supervision of a physician, which you are of course, but "supervision" implies that the doc is doing some monitoring, so make sure that you are seeing the doc enough to get appropriate testing. Also, there are some serious problems with some brands, so it's wise to stick with the brand your doc recommended even if it's more costly than others. Because red yeast rice contains naturally occurring statins, most docs prefer to use statin medications in which the amount is controlled (and which are paid for by insurance), unlike supplements.



  12. SOC

    SOC Moderator and Senior Member

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    I agree with you completely. I was indeed over-simplifying. I agree that we all need steroids in appropriate amounts. The point is really that when supplementing orally there is not the normal biological control your body has so it's very easy to upset your body's normal fluctuations by overwhelming it with oral steroids. That does not mean that steroids shouldn't be supplemented appropriately when they are pathologically low. :)
  13. madietodd

    madietodd Senior Member

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    SOC No tachycardia! But so far more sleepy and more brain fog since starting these meds, which is backwards of what I'd expect with better sleep.

    I didn't bring up the Lyme. [It was in the binder of test results.] Dr. Rey prescribed 6 months of doxy while stating that she had no experience with Lyme. I researched and learned that everything about Lyme is controversial ATM. So I did 2 months of doxy and didn't feel any different so I stopped.....partly out of concern for my always-out-of-control candida. I think I'll get this doctor to retest me.

    He gave me Thorne Choleast, and I didn't argue about buying this red yeast rice from his office. I get irritated about all the money doctors make off supplements, on top of their fees, but sometimes they really have researched the best product.

    My plan is to email him my questions next week, once I've got results to talk about. And ideas from all of you.
  14. SOC

    SOC Moderator and Senior Member

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    While you're asking your doc some questions you might want to ask him about red yeast rice being contraindicated for people taking antifungal drugs since he is also prescribing an antifungal drug for you.

    madietodd likes this.
  15. L'engle

    L'engle moderate ME

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    Hi Madie! Progesterone is supposed to help with sleep. 100mg seems like a lot though. Most of what I read suggested 20mg/day.

    Sorry for the short post but my phone keyboard is sketchy! :)
  16. Nielk

    Nielk

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    Laddie. Good luck with hour new protocol. It sounds like you have found a good doctor and nearby. That's great.
  17. madietodd

    madietodd Senior Member

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    I emailed some questions and got an answer in 2 hours! Yes, the progesterone is for sleep. He presumes my level are low because of my age (not telling, lol!). He's comfortable with the low amount of statin in red yeast rice, but if I want to take the diflucan separately first, that's fine by him.

    Good call about watching my potassium. He said yes, we need to check in a few weeks.

    Thanks, all!
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  18. SOC

    SOC Moderator and Senior Member

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    Sounds like you found a great doc! You are very lucky!
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  19. WillowJ

    WillowJ Senior Member

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    glad you are getting some appropriate help, maddie :)
  20. Ema

    Ema Senior Member

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    The dose depends on the form. 100 mg is a typical oral dose. 20-40 mg is typical for transdermal cream.

    Ema
    L'engle likes this.

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