Grace54: FFC Thyroid Lyme treatment???

Discussion in 'Lyme Disease Archives' started by munch1958, Oct 28, 2007.

  1. munch1958

    munch1958 Member

    Hello!

    I read your post about using your last FFC coupon for a phone consult. They probably didn't have to dial your number a zillion times -- just used that autodial that calls them back when your line is free.

    What did they say about T3? How did they adjust your dose? Up or down? Weren't you on 125 or 137.5? Did it stop working? Why did they think you had more pain and couldn't sleep?

    Just wondering as I'm having the same problem and trying to rule things out. Is it too much T3? Not enough cortisol? Not enough HGH?

    How goes the LD treatment? What Abx on you on? Is it helping?

  2. grace54

    grace54 New Member

    Greetings. Yes they knew how to find me real quick to get paid:) I never did get a letter from them for my disability renewal, I got it anyway but someone said they charged like a thousand dollars to do a complete report. Maybe they were afraid to tell me that as I tell them I can't afford their prices and they want me to check in more often. I'm not going to spend $200 for a 15 minute chat with the DR.

    As you can see I have lost faith in the DR. She seems to be getting more and more forgetful and I feel she is making things up as she doesn't have answers. I am going to find one of my Dr's up here to continue the t-3 therapy and maybe add some Armour.

    When I had my last consult the DR. said have you been taking your t-3 as your numbers are so low they can't hardly test them. I told her yes I was taking them later in the day like 11-12 and she said that's the problem with my low numbers, taking them too late in the day. But I have been taking them like that for a year so I think I got a bad dose of t-3. When she sent me a copy of my test results my my t-4 was 0.2 and t-3 was 2.2 so yes the frees were low as last time I was good at 3.8 t-3. I also have Hashimotos thyroiditis and I have heard that that can cause my levels to change.

    What was way high was my fibrinigen at 441 ref.208to 423. It was double what it was in March.I wonder if the t-3 alone would do that? She said to double up on my fish oil supplements to bring this down.

    My t-3 is at 137.5 and she wont raise it now which is what I wanted. My increased pain is the osteo in my lumbar and facet joints. This is weird too as she said try blue emu ? and asked how much tramadol I was taking and I told her some days the max which is 400mg and she did her spaz thing oh no-oh no, not good not good etc.You would have thought I was on a high heroin mix or something, Tramadol is all I take for pain as I don't want to go on anything stronger. She said to ask my DR to switch to the extended release Tram as I could just take one a day- I wish-.

    I don't trust her cortisol test either and even though my level says normal when I called back the next day the gal said the DR says she wants you on cortisol again. She never told me that, more confusion:) She also ordered testosterone as my numbers were mid range but I just feel like it isn't doing anything but since my insurance covers it I will try it again for a while.

    I still say the only thing that helps me is the thyroid med and I was feeling really tired and more pain when it was so low.I really believe the low numbers was because I had a bad batch of t-3 and maybe you did also. I wish there was a way to check it as I have some of that batch left. I wonder if another compounding pharmacy could test it.

    I am now putting a t-3 on my night stand so when I wake up about 6-7am I take it just to rule out that issue. The Lyme thing, I question now if I even have it but am still taking an ABX but I feel no herxing any more. I want to do a CD-57 next and see what that shows.

    I was hoping to sell some anti-bodies but they could find none. All this stuff is confusing. I know you have been dealing with a lot more than I have and I am beginning to see how dealing with these hormones, one needs a really good DR. and then it is still a challenge to get it right. Sorry so long- Hoping we all get some breaks soon:)
  3. mollystwin

    mollystwin New Member

    Grace,

    LOL. I just think it's funny how you say the dr went into her spaz thing. I remember that well and can just picture her doing it.

    And the forgetfulness too. My husband always said she made things up too. Could never admit she was wrong.

    dar
  4. mollystwin

    mollystwin New Member

    One more thing,

    If you are doubting the lyme diagnosis, one thing you can do is stop meds for a few weeks and do another test. Sometimes after taking abx the test results come out with more bands showing. It could give you some peice of mind of whether you have it or not.

    Also sometimes abx need to be switched around after a while. They can stop working and you need to try a new one.

    dar
  5. grace54

    grace54 New Member

    Hope you are doing better these days.

    You know I hate to discourage anyone from getting help as most of us won't find a good DR who has any idea of what we live with every day. But as you know the FFC gives us a lot of hope which makes one vulnerable to do anything they say and spend a lot of money too.

    I will this month finally pay off my credit card I used to go there. As I am single it was no big burden but you know many especially with children couldn't afford their prices, especially in Michigan with our high unemployment.

    I didn't spend nearly as much as most who go there as I live out of town and I didn't continue to buy their supplements and only went their twice. The Dr would get irratated that I only called like every 3-6 months, they can't make money that way and I used the nurse as much as possible.

    I would tell people to go and get the blood work and results, don't buy anything and then find a local DR to treat them.That way they coild get some insight on what they need to do and not spend a fortune, I would also advise one to get an Igenix test separate from the FFC, at least in Troy that is, it appears that other FFC's are finding Lyme all the time.

    I am going to go back to my Samento and try that for a while. I was hoping to clear up my sinus stuff too with these meds as that is chronic too. I also have an ongoing periodontal situation which needs attending to which could be affecting my health. So now I can invest in that, so much to deal with:) But you are right, I need to get tested again after a trial of ABX to se if any anti-bodies are present.One day at a time- Thanks :)
  6. munch1958

    munch1958 Member

    This is the first chance I've had to look at this board. Been busy planting flowering bulbs. Yes, I'm digging in the dirt and loving it. Haven't been able to garden much in years.

    "What was way high was my fibrinogen at 441 ref.208 to 423."

    Holy guacamole! I have high fibrin too. All the fish oil in the world isn't going to bring those numbers down. I've been on 3 capsules of the strawberry flavored Mega EFA (better to burp strawberry than fish!) capsules for over a year and one of Oil of Evening Primrose.

    Dr M says she prefers the "natural method." Most likely as someone else pointed out because she gets commission on the natural method.

    I think she should have tried heparin for high fibrin instead of Lumbrokinase. That stuff was $100 a bottle. Heparin plus syringes costs me $10 a month with insurance plus the cost of the syringes is $8.06.

    I'm beginning to think Dr Spaz has an aversion to prescribing anything injection based. She would not let me have HGH which is a shot saying she prefers Gamma Grow because it's the "natural method."

    Sure wish I had gotten the real protocol as written by Dr Holtorf instead of the Dr Spaz watered down version. Guess she was too spazzed out to follow what's written on his website.

    If you look at Dr Holtorf's revised Western Blot criteria I clearly have Lyme two different ways. How come I found this document online? Shouldn't she know all of this?

    Sometimes I think that money was a factor in this. Like she thought we had a bunch lying around and would keep coming back indefinitely.

    It's mean of me to think I got on her money making commission radar. As in I could be milked out of some more green stamps.

    Having me fly-in from IL to MI for two IVs on the same day is not doable. But IVs is all they could come up with as a next step.

    This is bull because I didn't get half the treatments I wanted because she didn't think I was a candidate. Dr Spaz would never admit she made a diagnostic error which caused a chain reaction of the wrong treatment.

    Sorry for the rant :( Can you tell I'm still angry?

    T3 alone will not cause high fibrin. This is caused from chronic infections.

    I'm on 150 mcg. now. My ex-FM doc had no problem upping the dose from 100 to 125 and then to 150. If I wanted more he would do that too. He knows I like my T3 high.

    The new endo I'm seeing tried lowering it to 125 and adding Synthroid. After 2 weeks, I went hyperthyroid. What a yucky feeling. I'm not going to add anymore T4. I gave it 3 tries. Enough already.

    When you are just doing T3 tests for T3 & T4 will always show high T3 and low T4. Most docs don't understand this and want to bump up the T4 or the inactive version.

    The new endo based this on total T-3 not Free T-3. I'm not sure what the difference between the two is other than Free T3 is the amount available for your body to use.

    I know FFC goes by Free T3 and wants it in the range of 360-450. Last time they tested me in Nov I was at 245. On Armour I was at 322 when I walked in the door.

    90% of Borrelia patients have hypercoagulation. If you've got it you'll never get better until this is treated. All of the Abx in the world are not going to get at the Lyme stashed away in the fibrin coating of your blood vessels.

    You should also try Flagyl to bust up the cysts. Start with a tiny sliver. That stuff packs a wallop.
    As Dar said when you stop improving on Abx and need to change to keep attacking the bacteria.

    You may have a coinfection too. My doc says Babesia is notorious for causing hormonal changes. He also says hormones start to work better once the fibrin is busted up.

    Picture it like this. A normal person's blood may take 10 seconds for the blood to flow through the capilaries. In
    some one with high fibrin it can take 5 minutes. No wonder we feel like cr*p.

    Here's an article from my doc:
    http://www.drcharlescrist.com/hypercoagulation.htm

    I'm currently doing the heparin thing and HGH. I'm feeling FANTASTIC like the old FFC WOW days. It sooooks doing 3 shots a day but it's worth it to feel good.

    Call Hemex to see if there is a doc in your area that can help you with this blood curdling mystery!

    http://www.hemex.com/educational_info/coag_capsules.php

    http://www.springboard4health.com/notebook/health_hypercoagulation_ill.html

    http://www.hormoneandlongevitycenter.com/lymedisease/

    http://www.hormoneandlongevitycenter.com/cfidsfibromyalgia/#10b

    http://www.worldhealth.net/p/349,1483.html

    Next time you get over to Lymenet.org send me a private message with your email. Munch over there too. I have a funny crazy cartoon of Dr Spas. Dart board material.
  7. grace54

    grace54 New Member

    I wondered where you went too. I am glad you are feeling better and hope you stay that way. It is nice to have a life beyond all that we have to deal with. I find myself consumed with research some days but if it's nice out I am doing some project even if it's at a slower pace.

    Thanks for all the information. For some reason my fibrin keeps getting higher and I questioned the fish oil fix. I wonder if my dental problems are contributing to this. I did notice some markers for infection on the lyme anti-boty tests I had recently. I guess I will invest in a dentist now that I am caught up with the FFC expense.

    I think the DR's at the FFc don't necessrily follow the protocols of it's founder and /or present director. I know enough now what I am dealing with and just need to find a local DR to carry on.

    I still find it interesting that infections were never considered an issue with me at the FFC even though my fibrin was high when I went there.I was never told it was a marker for infection. I tried the Lumbrokinase too but never bought any more. Yes the prices for all that stuff and the hit and miss diagnosis really shook my confidence from the start.

    Anyway keep up the good health and let us know if you maintain your improvement and what you are doing to sustain it.:) PS Looks like Heparin could really help our symptoms. I pasted from Dr Cr site below.

    Heparin is not only a blood thinner, it is also anti-inflammatory, antiviral, antibacterial, and may even be anti-cancer (unproven). Therapy with heparin usually lowers the level of the coagulation components fibrinogen, fibrin, thrombin/antithrombin complexes, fragment 1+2 and Factor II activity.
    [This Message was Edited on 11/03/2007]