To lisapeterson, jolie and anyone else regarding Kathryn

Discussion in 'Fibromyalgia Main Forum' started by connieaag, Apr 10, 2007.

  1. connieaag

    connieaag New Member

    I haven't posted for awhile -- which for me things are going well. I always hate to comment when they are positive in fear things will go backward!

    After almost 3 years of tradiitonal docs, about a month ago decided it couldn't hurt to try a new route. She had been getting AP, but it was done electronically and she wanted to try needle AP since she was on Vicodin almost 24/7 for the pain (she's 14!).

    Making a long story short -- she has been getting AP 3x a week for the last month and now once a week. The pain level is more manageable than it has ever been! Also, she started seeing the NP who is in with the chiropractor who does the AP, and she is great!

    Kathryn was on so much medication and then adding in the whole AV, ABx, Long term yeast treatment, etc...(see my other posts if you want :) and although she felt better at first with each treatment, it never lasted very long and then she was back to square one.

    I am hapy to say she is almost off the last prescrition med (Prozac) and feeling better than she has in about 9 months. The mistake we always made in the past was backing off meds or treatments when she felt better and then she would relapse. I think doing the home tutor instead of school has also helped this year in keeping stress down.

    The NP has helped us realize that we need to build from the positive energy her body is creating in order for her to heal and continue in this positive direction. With her being off the prescriptions meds, which long term use of them on a kid was always an issue, we now are using only homopathic remadies and I am not afraid to have her stay on them long term if needed.

    Just can't say enough about our experience with someone who just "happened" to come into our life. Another answered prayer! NOW, I need answers to help deal with a beautiful, 14 year old daughter who finaly wants a life :)and how to keep the high school friends of her brother's away! But, I'll take those issues any day!

    Hope things are going well for both of you! Keep me posted.

    Connie
  2. Forebearance

    Forebearance Member

    That's great news, Connie!

    Love,
    Forebearance
  3. Slayadragon

    Slayadragon New Member

    Connie!!

    How wonderful to hear that Kat is doing so well! I've been thinking about her from time to time and hoping that things were getting better, and so your report is really terrific to hear! (Especially since it's still almost winter and Cat does worse in cold weather....)

    Do you think the acupuncture has helped any of Kat's CFS symptons other than the pain?

    What kinds of things has the naturopath been recommending?

    Both my husband and I have been seeing a Traditional Chinese Medicine doctor. My husband has liver problems and just been seeing the doctor for two weeks, and has been showing terrific progress.

    Today he got acupuncture for the first time and found it to make a huge difference immediately. So that's two great recommendations in one day. Perhaps I will give it a try.

    At the very beginning of my illness I got some acpuncture but didn't feel that it helped anything. I'm not sure the practitioner was good enough though. Or maybe it's that I was too sick then for it to make any difference.

    I'm thinking that if I can get past the steep part of the mountain toward getting well, perhaps acupuncture (and other supportive measures) would be really helpful.

    I'm actually wondering if some of the Western treatments that you used at the beginning didn't get Kat on the right path in terms of knocking off some of the infections, so that her body was more in a position to heal itself using more supportive treatments. And of course, giving her time to rest sounds like it was really really helpful too.

    Many of us are trying so many different things now that it's hard to know exactly what is responsible when we start to feel better. Regardless, it sounds like you've done at least some things really right, and not too much horribly wrong. With CFS, that's an accomplishment.....and you certainly put enough work and thought into it.

    I'm still in a holding pattern from where I was several months ago, but feel like at some level I am making progress. It's becoming more my observation that people who are actively trying to get well often don't seem to make any obvious progress at all for a long time, and then that if things do improve they do so pretty quickly. Maybe our bodies spend their energy repairing the underlying problems first before giving any to us to expend outwards? Anyway, I'm still chugging along in month 5 and keeping my fingers crossed.

    Please, please, please write back again and let us know how things are going. It's wonderful to hear that Kat's getting her life back (she seems like a great kid!) and also a sign of hope for those of us who are still working on getting well.

    Love, Lisa
  4. connieaag

    connieaag New Member

    I do think the AP is helping with areas other than pain. We are still working on sleep issues, but I think getting her off Prozac MAY be a key since a side effect is insomnia. Anyway, getting off all of the meds will give us a clear picture if the NP route is helping, and that can't be done with Rx drugs in the picture too, in less they are a life-death type thing, which none of hers were.

    I will give you the names of the things we have used or are using, so if you do decide to try a NP, you can look up some of these before hand. I gave up researching them since they were all pretty "out there" in what they claim to do! But it was worth a try!

    Epsom Salt baths 2-3 x week -- 4 cups in the tub which was up A LOT from what we were doing.

    Sauna Protocol -- quick shower, 10-15 minutes in, quick shower, 10-15 minutes more in -- working up to 4 "rotations". Do this 2-3 times a week, but not on Epsom Salt bath days. When finished wash with glycerin soap and rest for an hour. We never followed a routine for using the sauna!

    Sleep -- not all at the same time, but things she prescribed since we started.
    Magnelevures -- powder Magnesium and vitamins
    Seditol Plus
    Passiflora plex drops
    TPIN Pineal Complpex by Genestra

    Energy
    B Complex
    Vitamin C -- no additives in the capsule

    Other stuff -
    HAD Adrenal drops
    Tilia Tomentosa silver linden buds
    Natrum muriaticum -- pellets under the tongue
    Phosphoricum acidium -- pellets under the tongue
    Strong Antioxidant

    As she is going off Prozac --
    Olive extracts
    Gentian Both BACH products (drops under tongue)

    As I said, she has used some of these and then replaced them with others. But it gives you an idea.

    Take care and I would recommend looking in to it!

    Connie
  5. cherylsue

    cherylsue Member

    That's wonderful to hear that your daughter is doing better. I don't think the Prozac was a good thing to give her, and I'm glad she's weaned herself off of it.

    Hopefully, in a few more months she'll be as good as new.

    CherylSue
  6. Slayadragon

    Slayadragon New Member

    Hi Connie,

    My husband was on small amounts of Prozac, Buspar and Lamictal prior to seeing the Chinese doctor. Within about a week of starting the herbs, he was able to get off all of them. Considering that he'd been taking them for at least five years and insisted he could not do without them, this has been quite an accomplishment!

    And the Prozac ruined his sleep too. He's still sleeping a whole lot (liver problems will do that), but the quality is slowly getting better.

    I don't think I mentioned to you that Dr. Guyer does what I think of as "superacupuncture." It's done with a syringe of novacaine, which he injects in small quantities in various points on my body. The only way to make sense of it is to think of it in acupuncture terms, although it's also used for repair. For instance, the effects of my head injury have gotten much better over time, and I'm sure it's in large part due to his work with the needle on dozens of points (just little pricks) on my head in a session.

    In any case, I can feel the difference after a treatment. I've only done about a dozen sessions over the past 7 years or so, but once I get past this AV stage in my illness, I'd like to do more.

    I think the neural therapy has been good for me in a number of ways. Detoxification, for sure. (These days, the only times I ever get any muscle stiffness is right after a treatment. And while I could be wrong, I believe that the stiffness was a toxin issue.) Also perhaps organ support. And then the acupuncture stuff (which I think is mostly to increase energy/electromagnetic flow....one thing that scars can do is disrupt that). So especially since Kat's been getting treatments frequently, I can see why they would be helping her on a variety of fronts.

    Anyway, my doctor recommended epsom salts (several cups) with baking soda (a couple cups) in a bath for after the neural therapy appointments. I think they help a lot with the stiffness that he brings out, and so I can see why they would help Kat. In addition to the detoxification component, I've recently been thinking that they're a good magnesium delivery mechanism. There's only so much magnesium you can take orally, and IM shots are a pain in the rear (literally and figuratively). But magnesium is a good thing.

    My husband told me about how in Finland they do the hot/cold thing, except there they do the cold part by rolling around naked in the snow. (I once told a little kid this, and he thought it was the greatest story ever.) I experimented with rotating between swimming pool and steam room (several times) when I was in Colorado a couple of years ago, and I felt so good afterwards that I decided to include a steamroom element when we re-did one of our bathrooms. It occurs to me that I generally just do one rotation though---e.g. cool shower, steam room, cool shower. Doing more rotations seems like a good idea, and I will start that up and see how it goes.

    I find it interesting that (as far as I've seen) no one else talks about this kind of stuff on the board. It feels really health-promoting to me though. Detoxifying mainly, although maybe there are other benefits. (Sleep, for instance!) I used to have to do yoga nightly to relieve the stiffness in my muscles, but it's been a long time since it's been necessary. Upon reflection, I'm going to have to give a good deal of the credit to these three therapies (steamroom/shower, epsom salts/baking soda baths, and neural therapies). And maybe CoQ10. I'm really happy that it's doing so well for Kat!

    Vitamin quality is really important. Especially since CFS patients have weak digestive systems, powdered supplements are important. And I think Vitamin C, B Complex (not just B12) and magnesium are the most important of all. (I personally use a lot of EmergenC, but upon reflection that might not be the purest of substances if that's the goal.)

    I've used homeopathy (the little Boiron pellets) before with quite a bit of success. I went through a stage where Nat Mur was really helpful, especially in high doses (e.g. 10m) for releasing emotions. (CFS is a frustrating disease, and a lot of that frustration tends to get bottled up. My husband described my use of the high potency Nat Mur as being like a bomb---a couple of days after taking a dose, I would go through a sort of explosion where I would cry and shake and express unhappiness about my life, and then after an hour or so feel really cleansed out of a lot of "gunk". I think that homeopathy works somewhat in the same way as acupuncture, except maybe at a slightly different level. Like, electromagnetic field rather than energy movement per se?)

    I seem to have gotten past that particular remedy (Nat Mur), but (as with the hot/cold and epsom salts) you inspired me to consider what I might pursue next. I'm thinking lachesis (snake poison), which is menopause-associated but also corresponds to a lot of other stuff I'm experiencing. We shall see.

    Undoubtedly self-treatment with homeopathy is not preferred, but after going to a couple of _horrible_ specialists I gave up and tried experimenting on my own. (Let me know the name of your naturopath, please. If s/he's vaguely on the way between Chicago and Indianapolis, perhaps I will pay a visit at some point, once I get past the antiviral stage.) I found that using remedies having to do with person types (rather than symptoms) were much more effective. The books I found terrific (a two-volume series) are called "Portraits of Homoeopathic Medicines: Psychophysical Analyses of Selected Constitutional Types." They're really interesting reading, and I found that I understood the subject reasonably well (and succeeded after a couple of tries at getting a really powerful remedy for me at the time) after I went through them. The good thing about homeopathy is that it's quite inexpensive, and also if something's not right it seems like it basically does nothing.

    My husband and I both tried a variety of Bach remedies at one point but didn't note a big effect. (Is the Olive one similar to the Bach?) Perhaps we never hit the right one though. Or figured out when to use them. I have to admit I never figured out the theory about that at all, and so it's not surprising that I didn't get success with it.

    I suppose the HAD adrenal drops are homeopathic too? I tried something like for a time, but my adrenals were in extremely bad shape then and so it was an addition to the hormones rather than a substitute. I thus don't know for sure whether it helped.

    You're doing a much more pure approach, and so can see results much more easily. It's fascinating that you're getting progress from that route, although again having knocked off some of the really offensive viruses/bacteria/yeast/etc. with more traditional (pharmaceutical or herbal) stuff could have given you a kick start. I'd never say that just this might not have been enough all by itself, though.

    Now the one thing (other than the specific sleep remedies....there are a lot of those out there) that I'm not familiar with is the Tilia Tomentosa silver linden buds. What is that?

    Did Kat get any relief with any of those sleep meds?

    So see, I don't think anything you're doing is weird at all. Quite the contrary. It does impress me that Kat is doing _so_ well though. Again, if I can get past the hump with the antivirals (that problem is really major), this kind of work might be really helpful. At some point the body has to start healing itself, and this sounds like a good way to help it.

    Again, do give me the name of the naturopath. You'd think I could find one in Chicago, but I'd prefer to have one I have a strong recommendation for......especially since I go to Indianapolis on a regular basis anyway.

    Keep me informed with the specifics. I really am interested!

    Best, Lisa
  7. connieaag

    connieaag New Member

    Her name is Debra Lightstone and she is in West Lafayette. She is Canadian trained and probably 25-27 years old. The first visit was about an hour and then every couple weeks, but she is VERY accessible by phone in between. She has several of the products she uses "ordered in" by a local Nature's Pharm and they come from Canada. She is in with Adam Cline who is the Chiro/AP. If you would like, I can ask her about a referral of someone closer to you.

    Thanks for the kind thoughts and words. Yesterday was a rough pain day for Kat as the cold rains and snow return. She did ask for Vicodin about 2pm, but she hasn't had any for a month, so that is great progress! She got in bed and slept most of the day -- I could have easily done the same though, and today looks no better.

    The Nat Mur was used 3 days, then every day for a week, then 3x a week. Then she switched her to the other one, but said she might use it again later. I would love to borrow her "little reference books" sometime to glean. You can't find a lot over-the-counter in books regarding AP or this stuff. Dr. Cline said it wasn't "rocket science" -- the AP -- so there wasn't much to write about. It's just most of it is Chinese traditional stuff that Americans don't understand!

    Dr Cline did tell us she could skip an app't if she didn't need it,and we did one time. Dr. Lightstone was not happy that we did that because she said we needed to keep the energy flowing especially when she is feeling better. That to me is the BIGGEST mistake we made all through the various treatments. But as I said, we didn't want to stay on the prescription drugs forever.

    Love,
    Connie
  8. Ginner

    Ginner New Member

    good info. thanks