pocahontas (and cherylsue)

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Mar 2, 2007.

  1. Slayadragon

    Slayadragon New Member

    I noticed you posted on the board recently and was wondering how your visit to the Chicago doctor a couple of weeks ago went.

    I really liked Dr. Guo and think that the herbs he gave me have been helping my body to stay in good shape as I continue to use the antiviral.

    How are you doing?

    Best, Lisa

    [This Message was Edited on 03/02/2007]
  2. pocahontas606

    pocahontas606 New Member


    hi there - how are you? i have been following your threads and you are really making some great progress. i also read the the threads on the glutathione and the methyl info.

    dr. tobias (sorry it has taken me so long to report - i have been so tired and trying to work. i am self-employed and my job has suffered greatly thru all of this).

    getting back to the real point though - i love her. she is my dream doctor. not one single drug (i know they ahve their place but she is my kind of dr.) she has me taking naturethroid (hypo-allergenic porcine derived thyroid), immunocal which is a whey supplement (bonded cystiene), body balance (lifeforce dot net), phoshtydlcholine, coq10, omega 3, l-carnitine, and florastor (probiotic). i am adding one new thing every day as i have severe reactions and my eyelids swell when i react and it's hard b/c i have to go on meetings (not the worst thing in the world i know but still uncomfortable for me). so i have many other things on my shelf to add and am going really slow. she started me on some vit-B injections and my nose swelled huge so i am going to order some b12 from perque (perque dot com) and did the IV glutathione 1x but i was so nervous the last time(i am also very bad w/needeles) so that is why i am doing the immunocal powder.

    she literally is buliding me from the ground up. i also had to do colonics before i started any of this, and she did all my labs and did the hair analysis which was really cool. it shows every deffiency nutrtional wise.

    i also go 2x a week and do the ceragam infared heat lymphatic drainage massage and get hooked up to the electro-accuscope.... these are 2 things that are worth a thread in itself. she has been thru so much on her own and has cured herself of many things - including cancer. i trust her and she lets me get involved. she is one of the smartest physicians i have met - reads all the drs that i i like.. johanthan wright, robert rowen, julian whittaker, russell blaylock. she is an MD but she gets it.

    hope this is a good start for some info. i am happy to tell you more and again i am so sorry that it has taken so long for me to post this.

    i have a dreadful flu/cold/sinus something.... do you think the glutathione could have brought this out?... geez.

    so gald you are doing well and like guo, he also very good.

    let me know what you think. hope everyone else that read this is doing really well too.
  3. pocahontas606

    pocahontas606 New Member

    i am up to 7000 mg of vitmain c with no side effects.
  4. Slayadragon

    Slayadragon New Member

    I'm so happy that you found a doctor you like.

    If you don't mind, I'd like to direct CherylSue to read this thread. It's possible she might be interested.

    I will respond to all of your comments soon.

    Best, Lisa

  5. pocahontas606

    pocahontas606 New Member

    lisa -

    hi there. oh for sure tell cherylsue - i completely forgot that she is in the area. the more the merrier and the better if we can all chat. i will also make a list for everyone of the other supplements that i am waiting to add that are lined up in my kitchen like an arsenal.

    dncn - hi there, how are you? thank you for the info. i was VERY hesitant to start the glutathione due to the neurotoxic component that can happen (i read a lot of blaylock. he uses it SOMETIMES and i am still trying to figure out his exact take on it. generally he does not like it). but here i am using it hoping that my liver will get some necessary relief. i am really confused though about how it induces die-off and etc. i read the whey protein thread and all the comments involving methyl donors, and the vit-b combo. but i am lost as to why it can do what it does - meaning - my eyes and nose are watering like they never have... my ears hurt, etc.. now i know this can be sinus infection but i don't think it is. i remember prior to going on that prednisone 2 years ago (have you guys noticed i can't let go of that? i just can't get over the fact how much that drug really ruined my life) anyway - i need to move on i know... but i remember that i noticed that when i was on the prednisone that my sinuses NEVER drained ever. it was weird b/c before that i would have slightly watery eyes and nose in the morning and then it would stop by 9:00 am or so.. kinda like my own natural cleaning system. but i have not had any of that for the last 2 years until starting the glutathione. seriously - i started it on thursday and literally @ 4:00 pm that afternoon this whole flu/cold/sinus thing started with a vegenence. i do think i have picked up a bug but it all seems so connected? could my symptoms be yeast? oh.. and before i forget - you are right, don't mess with it if it's working. i would keep the comfry (sp?) as a topical only. i would not add it as an internal. you are smart, listen to your gut.

    sorry for the long post you guys. hope you are having a nice saturday morning. i am having a cup of coffee - my favorite thing to do. i amnot supposed to have the caffeine but this is the last thing i am really holding on to.

    ps - dncn i'd be happy to discuss the amount of beef i feed my dogs on the cct board. i will look for you there, so whoever posts first and then we'll chat.
  6. cherylsue

    cherylsue Member

    I read your thread with interest. Where is Dr. Tobias located? Right now, I don't have insurance to go out of network, but hopefully, I will again.

    Do you just have CFS? How long? Do you have remitting/relapsing CFS?

    I admire that you can still work. My doctor and I are trying to get me to that point.

    Lisa: Where is your Dr. Guo located? In Chicago?

    Thanks gals,
  7. Slayadragon

    Slayadragon New Member

    I'm so happy for you that you found a good doctor. It sounds like everything that she'd doing makes sense.

    I've never heard of anyone whose face swelled up with the introduction of every new treatment. I remember you said that about the Chinese herbs too. Do the reactions fade away pretty quickly? Hopefully after your body is built up a bit, that will stop happening.

    Don't a lot of people on this board take acetyl-l-carnitine for energy? I wonder why she has you on just the l-carnitine form.

    What is the phosphatidyl choline supposed to do? I tried that for a while a long time ago, since it's supposed to be a natural mood stabilizer. Unfortunately, it also depresses moods a little bit. I'm sure that you're using it for something other than moods, but if you find yourself feeling a bit down, perhaps it's something to suspect.

    How potent is your probiotic (e.g. how many billion organisms are you taking)? My doctor is now recommending 60 billion, which is obviously a lot. I think it's been helping though. If your brand is high potency, it would be good for others to know so they can consider it. (My own doctor has some made specifically for his patients.)

    I hate needles too.

    I bought the stuff for that methy block protocol and took all the stuff today. So far, I've not felt a reaction. In any case, the Perque Vitamin B12 will be interesting, since I've never had good luck with B12 before.

    I told my doctor I was taking 6,000 mg of Vitamin C, and he said I could/should go a lot higher, to the limit that my bowels could tolerate. That's been around 15,000 mg thus far (a combination of buffered vitamin c and EmergenC). He seems to think it's good for the immune system, for detoxification in general, and for bowel problems. I think that's been helpful as well.

    I'd really like to hear about the lymphatic drainage you're doing (or anything with regard to helping the lymphatic system). I feel like mine is pretty clogged up. I suppose Dr. Tobias only uses this on her patients rather than as a standalone treatment?

    in any case, it would be interesting to hear about it (as well as about the electro-accuscope, whatever that is.)

    I hope you get over your cold soon. I would be really happy if you were to give more details when you can.

    Thanks for the info!

    Best, Lisa

  8. Slayadragon

    Slayadragon New Member

    Zhengang Guo has his office right in Chinatown. I originally found him on the Internet, and it turns out that he's quite well-respected (with a lot of published papers) and a huge clientele. He also has his own brand of combinations of herbs and other stuff (including the "magic cookies") that he sells to patients as well as through mail order.

    Pocohantas say him a couple of times, but said that her face swelled up so much that she decided not to continue (for the time being). It was partially on her recommendation that I decided to pursue seeing him though.

    He's a 7th-generation herbalist from China, and also has a regular medical degree from a Chinese school. He's not officially a doctor in the US, but I'm inclined to call him "Dr." anyway since I don't know why we should think that American doctors are deserving of any more respect from those from elsewhere.

    He spends only a short time with each patient, which I ordinarily would think was a negative. After seeing him though, I think he knows exactly what to look for. As I've said before, I think that what he's given me has been tremendously helpful in allowing my body to tolerate the AV better.

    I do not believe his claim that he can cure my CFS with herbs. (My husband, from Taiwan, did not believe this either.) I also am ignoring his skepticism about the AV (he asked for "more information" on my next visit, and so I will bring the Montoya article to give him if he asks).

    However, I believe the support to my body is very helpful now, and that it may well make a big difference in keeping me well if/when I finish with the AV treatment. I will need all the help I can get at that time. I am convinced that he is very good at practicing TCM, and that TCM does something. I'm always happy to find people who know what they are doing and can help me in some way, even if they do (in my opinion) underestimate just how serioius this disease is.

    The appointment with him was $85, but the herbs were another $300 for a month's supply. Obviously I've felt they were worth it. Perhaps as I get better, not as many different herbs (he gave me five different formulas, some tea, and a bunch of the "magic cookies") will be needed.

    Anyway, I don't think I ever would have gone to him just for CFS. But for these purposes (supporting my medical treatments and keeping me well), I think he's splended. In your case, he might be helpful in keeping you in remission once you get there. It could be something to consider, anyway.

    Best, Lisa

    [This Message was Edited on 03/03/2007]
  9. pocahontas606

    pocahontas606 New Member

    cherylsue - hi there. dr.tobias is in oak park and i drive there 2x a week for my treatments. i do not have cf/fm i have adrenal fatigue and autoimmune issues due to a brief stint of being over-prescribed prednisone 2 yrs ago and have just never recovered. long story but the gist is i used to be an athlete and can no longer run or really participate in anything i love anymore (we all used to have more i know and i am trying to be thankful for what i do have)... nonetheless i have been from dr to dr who have all wanted to treat me with a steriod to "jump start" my adrenals - which i will have no part of anything with the likes of that. so i have become my own practioner until i thankfully found dr. tobias who i adore and trust! she is 80 years old, stands about 4'10" and is a pistol with grace and a wealth of knowledge. you can go to tobiashealinginstitute dot com.

    lisa - you are right...i am taking acetyl l-carnitine and i think it is helping so i am going to up myself from 500 to 1000 mg and see what happens.. no face swelling from that one at all. however what did make my face swell was my new probiotic -florastor- this has 5 billion live cells per cap but i am thinking that it is the "form" it is in with this one - it is a non-pathogenic (good) yeast that fights candida and can survive being taken w/ antibiotics. it has been around for 50 some years... my probiotic that i used to take was culturelle which had 30 billion but i do not know how the lacto/acidlphs forms compare?

    my face swelling does not go down if i continue the product that makes it swell. lately it is my eyes.. my skin below my eyebrow swells out and rests on my eyelid - it looks like i am either high or have been crying..it would be more fun if i was high (teasing - i don't do drugs). the phosphytydlcholine is for my adrenals and liver (i think). i think it is for the phospholipids. i am prone to get the blues anyway so i will watch for that. 5htp makes me a mess while it seems to make everybody else happy and not eat...

    okay the lyphamphatic drainage and the electro-accuscpope -these are what i do 2x a week. here is some info that i have cut/pasted .. let me know what you think.

    thanks for your replies and insight you guys - much appreciated. let me know what you think of the info below.

    The Electro-Acuscope is a sophisticated electro-therapy unit that introduces a low voltage micro-current through injured tissue and accelerates the healing process. The Electro-Acuscope is different from conventional forms of electrical stimulation (i.e. T.E.N.S, Interferential therapy, and galvanic stimulation) in that it facilitates tissue repair and promotes cell regeneration at an accelerated rate. It is an amazing treatment! It literally regenerates injured tissue by repairing damage at the cellular level. Because of its profound effects on tissue repair, the Electro-Acuscope system can be used successfully in a broad range of neuro-musculo-skeletal disorders both chronic and acute. When treating acute injuries, the recovery time is usually cut in half. In the treatment of chronic conditions, patients who had lost hope of ever finding relief are amazed at how rapid and how lasting the effects of the treatment are. In application, it is very similar to ultrasound in that it is administered by using conductivity gel and a brass probe to perform specific trigger point therapy. Each treatment takes approximately 20-30 minutes and the patient usually experiences significant relief after the first few treatments. Depending on the nature of the condition, patients require an average of 8 to 12 treatments over a 30-day period to attain maximal results.

    The Electro-Acuscope works on a negative feed back system whereby it recognizes “normal” tissue and identifies specific areas of tissue damage then determines the exact frequency necessary to repair the damaged tissue cell. As the area begins to repair and the requirements of the tissue cells change, the Electro-Acuscope detects the new tissue requirements and adjusts its waveform to accommodate the specific needs of the regenerating tissue.

    i will post in a bit to this thread on the ceragem/infared lyphamphatic massage

  10. pocahontas606

    pocahontas606 New Member

    so here is what i found that i could cut/paste.. let me know your thoughts.

    The Ceragem Master device is pretty straightforward in its use. The 6-foot-long pad has a massage unit imbedded in it, covered by a cloth to protect the user from moving parts. The massage unit has an array of twelve jade spheres arranged in pairs on its surface; the spheres align with acupuncture points along the spine. A hand-held unit with either a six- or a three-sphere array can be used on specific trouble spots on the body.

    Heat and two types of light are projected through the jade. The heat level can be adjusted anywhere from 30 to 65 degrees Celsius (86 to 149 degrees Fahrenheit), either on a control panel (near the side of the bed) or during the treatment via remote control. Derived from the principles of moxibustion, a traditional Eastern therapy in which herbal mixtures are applied to the body and then burned off, the heat is intended to improve blood circulation and relax tense muscles.

    Approximately half the spheres project far-infrared light, which makes the jade glow an orangey pink, while the others project white helium light. According to Dabska, far-infrared rays function as super acupuncture needles, penetrating as deep as 4 inches into the body, as compared to half an inch with traditional needles. The helium light is said to focus the far-infrared rays for better effect.

    And there is some evidence that far-infrared rays may also slow cancer growth. Researchers at Meiji University in Kawasaki, Japan, found that using far-infrared rays to overheat mice with mammary tumors inhibited the growth of the tumors and had no apparent harmful side effects.

    The Ceragem Master was developed eight years ago in South Korea around the theory that a healthy spine is the key to a healthy life. In a previous form, the system was suitcase-sized and was operated manually; the Ceragem Master is fully automatic.

    A standard Ceragem session lasts about forty minutes. The massage unit in the bed moves slowly up and down the spine three times, from the base of the skull to the tailbone. The jade spheres travel down the "bladder meridians" of acupuncture on the back and, like a chiropractor, opens the spaces between the vertebrae just slightly, realigning the spinal column.

    "This is a beautiful Qi exercise," says Dabska. In Eastern philosophy, Qi (pronounced "chee") is the life energy inside every living thing. According to Dabska and Choi, the flow of Qi in the body is as important as blood circulation, and too little Qi can cause an area to fail. Ceragem helps balance the body's levels of Qi through its unique combination of methods. Even the jade is believed to help.

    After the three passes loosen up the spine and surrounding muscles, the massager next stops at specific points along the spine for three-minute increments, giving each a deep heat and far-infrared ray treatment before moving on.

  11. Slayadragon

    Slayadragon New Member

    Dr. Tobias sounds great! It would be fun just to meet her, I think.

    My doctor thinks as many different probiotics as possible are best. He has a special 18-strain one with 60 billion organisms per capsule made up for sale in his office. I think it's the only custom-made product he sells there, except for a prescription face cream that he originally developed for his wife.

    I haven't seen anyone here on the board do well on 5HTP. (And I've only had a few "normal" friends get any benefit from it.) B vitamins seem to work just as well for most people, if they want to work with serotonin.

    I have seen a lot of people (including me) get benefit from St. Johns Wort (good brands), DLPA and l-theanine though. I'd be in much worse shape if I didn't use them.

    Have you noted positive effects from the electro-accuscope or the lymphatic massage? What kinds?

    Does your doctor's office do these treatments on an individual basis, or do you need to be her regular patient?

    The lymphatic thing sounds interesting to do while I'm still on the AV's, and the electro-accuscope sounds like it could be useful for repairing the injuries done to my body over the years by the viruses after I'm done with the AV's.

    If I have time, i will bring these up to my doctor and see what he thinks. I'd like to hear more about your experiences as time goes on though.

    Congratulations again on finding a good doctor.

    Best, Lisa

  12. pocahontas606

    pocahontas606 New Member

    you know, i can't tell if the treatments are helping b/c i am on so many supplemnets. i know dr. tobias thinks the treatments are helping - her view is that it is a synergestic event. i tend to believe she is right. it's funny, b/c as open minded as i am i keep thinking to myself - could this be what is helping me?

    i will tell you though i drink a ton of water before my treatment and am VERY thirsty after and feel pretty tired. i think it detoxes me b/c my eyes are a little puffy after (not the allergic kind of puffy i get from a vitamin).

    the other thing dr. tobias is really into is the right kind of drinking water - MUST BE IONIZED. she likes a product called the Leveluk...all these systems seem to originate in japan. the japanese seem to have always lived the right alkaline vs. acidic lifestyle. i cannot afford the leveluk yet (it is about $4000.-).. i drink reverse osmosis water that i get at whole foods in my polycarb bottles. she does not like reverse osmosis water - says it's dead water. in her view besides and along with the supplements water is the BIGGEST thing to do correctly. i have thought about getting the product called "concentrace" to add to my water but have not yet done so. i am going to get the leveluk when i can.

    you should def think about scheduling a visit with her. i know if you were a patient she would have you do the treatments... she will however want you to go thru a lecture where they discuss the importance of the liver and how disease manifests. she would also want to talk to you about your regime that you currently have. in my book she would be a good practioner to add to your protocol. i have found to get a good treatment plan you almost need a group.

    she is very similar to guo in the fact that she will evaluate you, listen to your symptoms, but she will do most of the discussing and give her plan. she is open to your opinion but she will want you to try what she says... i try most of her things and some i do not. i have been a vegan for many years (big problem i know. i just do not like the texture of meat, fish, poultry - really sicks me out)... but she has gotten me to eat shashimi grade, low mercury tuna for $9 a can! i am eating it but cannot look at it and must turn my head. my face must look awful when i eat it b/c both of my dogs stare at me and tilt their head every time!

    i think the electro-accuscope and ceragem would be a good thing for you - it couldn't hurt. i think it is restorative and if you have any pain i think it could really help.

    thanks again!
    [This Message was Edited on 03/11/2007]
  13. cherylsue

    cherylsue Member

    Dr. Tobias isn't affiliated with that Caring Clinic in Oak Park, is she? I think it's Dr. Hauser that runs the clinic. I saw a Dr. Felice there 2 1/2 years ago. He didn't even examine me, and I saw him for 5 minutes. They gave me a hydrogen peroxide IV that day. (I had to pay out of pocket.) It nearly killed me. Most I/V hydrogen peroxide treatments are now banned from many doctor's protocols. The office was crammed, and it screamed "scammed" to me. I never went back.

    I hope you have much better better success with your Dr. Tobias. She seems like she really wants to help you.

    Good luck,

  14. cherylsue

    cherylsue Member

    seems very interesting. I'll keep him in mind, especially if I achieve a remission. I'd certainly like to stay in remission.

    Some comments on this board have been really scaring me, and I wonder if it is possible for me to achieve remission after all these episodes. My PCP thinks I can with the Nexavir. I think she is really trying to help me - very compassionate.

    I just hoped for more energy and wellness. It's only been 2 1/2 weeks, and next Tuesday I go for the full dose of Nexavir. I'm hoping it will do more.

    These last two days I've been so tired. I've been trying to figure out why. Klonopin?, Chlorella?, Chinese Food?,
    viewing feature lenghth films?, walking? just the nature of the disease? all of the above?

    I hope the Famvir starts to make a turn around for you in the next few weeks. You have been so brave and determined. It will be interesting to see your test results. Then you know you are on the right course.

    Good luck.
  15. pocahontas606

    pocahontas606 New Member

    hi there. nope she is not - she is her own practice and VERY reliable and smart. she didn't do one treatment on me until she got my labs back. i feel very lucky to be there. hope you are well.
  16. cherylsue

    cherylsue Member

    sounds interesting. I'll have to check her out when I get my PPO insurance.

  17. Slayadragon

    Slayadragon New Member

    I seem to recall at one point your mentioning that you were taking a supplement that I knew nothing about. Epicor, maybe? If so, could that be causing you to feel more tired?

    Also, you said that you stopped the St John's Wort. Do you think that could be having an effect?

    In any case, hopes for your improvement are in my thoughts.

    Best, Lisa

  18. Slayadragon

    Slayadragon New Member

  19. cherylsue

    cherylsue Member

    Dahopper Debbie is on it, and is fighting a cold. Her doc says to stay on it, and it takes 3 months to work. Maybe, I'll try that later for maintenance when I'm better.

    I'm doing more, I guess, but also getting fatigued. I have to take at least 1 nap a day, or a couple of rest periods.

    That's a good suggestion about the St. John's Wort. It did give me a little boost, but I'm no longer depressed, so I stopped it because it didn't seem to be doing much of anything. It can also raise blood pressure, and my doctor is monitoring that very carefully. It's borderline high.