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Hi all,
First, thanks for this great resource, this is a very active board and seems to be a nexus for information that could potential help people. Thanks to Dr. Stoll and other regulars for putting in the time to help this board/ community to thrive.
My girlfriend had chronic fatigue syndrome 8 years ago, which she slowly recovered from after about 2 years. 8 months ago we went through a particularly stressful time due to
-a move from Seattle to LA
-a few trips around the country (she has a fear of flying)
-family issues
-some money issues
-panick attacks started occurring simultaneously with the hot flashes she had been getting for a few years. These attacks got more and more frequent, eventually every hour or more.
She spent some time in bed at this point due to a sort of physical/mental exhaustion. Also, she was prescribed Xanax for the panic attacks. While the Xanax did seem to help control the severe panick attacks, it also seemed to have some other affects including making her sleep a whole lot for about the first two weeks she was on it.
Since then she has pretty much been in the bed, although she is able to walk around a little bit, and even make a short trip herself in the car somewhere perhaps once a day, although this is somewhat exhausting.
We pretty much knew it was probably CFS, but have been to 10+ doctors and taken 20+ tests, which have pretty much ruled out anything else.
She just got an EBV done and was at 1:1280 (under 1:10 being normal).
We have been to several homeopathic and several traditional doctors. Nothing has really helped improve things so far, including a fairly intensive vitamin and diet therapy. She is though, actually better this time than when she had this 8 years ago, and could not walk across the room without running out of breath--perhaps this is due to the efforts we have made.
She has also been diagnosed with manic-depression for several years. Also, she has lost her voice for the past 6 months (this is called dysphonia I believe, she sounds like a very old, weak women when she talks). Also, I think partly due to the restrictive diet she went on, she has gone from about 180 to about 125 pounds and is near anorexic at this point. She is usually not very hungry during the day, will only eat grapes and a little juice, but will eat a full meal at around 6-7 pm and then usually likes a snack again around 10 or 11 pm. I also make her a shake from fresh juice and UltraClear 1-2 times per day.
She is currently taking the xanax, a valium at night to help sleep, provigil (she says this gives her some energy), and lotensin for high blood pressure (although I think with her weight loss her blood pressure may have gone down).
I have a few questions for Dr. Stoll or for others who may be able to help. I have spent a few hours reading over this site and some of the links.
1. Where is a good place to purchase the esterized c to use for the 12,500 mg 4 times per day for about a week. It seems like powder form is easier than 50 pills/day. I did find one potential source at: http://www.thewayup.com/products/0084.htm. This one says its "buffered", so I'm not 100% sure this is the same thing.
(We've been thinking of doing the iv vitamins which she has done before and they seemed to help, however, it is difficult for her to make the trips to do this regularly, and getting stuck a lot is a little tramautic for her--but we can try this next if the oral c doesn't do the trick.)
2. A dermatologist just did the EBV test and is recommending vitamin therapy and anti-viral medications (acyclovir (sp?) was one) to deal with the high EBV. Also, 1 other Dr is recomending anti-viral meds. Are these types of anti-virals effective?
3. We had tests done with Smokey Mountain Labs showing extremely high candida. One of her doctors didn't really believe in candida as an issue, but said if she did have it she should take anti-fungal medications. Also, I noticed drcranton.com recommends the same ("the simultaneous daily administration of nystatin powder, amphotericin-B and either Sporanox or Diflucan, for at least two months"). I was wondering if something like this might be effective for her?
4. Any other suggestions? Perhaps we should move out of LA? We are in the hills, but still I'm sure affected by the air-quality and the energy in this town in general seems to be on the busy side. I will look into the "skilled relaxation" techniques, and perhaps purchase some of the books recommended on this site as we continue to learn more about this as well. I was also thinking of trying the zinc talley just to check this out.
Thanks for advice or insights anyone can offer. I think we have at least reached a point where she is not getting worse, now we would like to tip the scales and move towards really getting better. Again, we are looking at the vitamin c therapy, as well as possible anti-virals, and anti-fungals. Also, we will continue to try and learn to refine diet and SR. I think exercise is a little difficult now, but perhaps this is something to look at as well.
Best of luck to everyone else here who is trying to get well too!
Thanks,
Chris-LA
In Reply to: CFS help posted by Chris-LA on February 17, 2001 at 14:21:08:
you must be the best boyfirend !
you could benefit enormously from the services of a clinical ecologist.
there are members and there are fellows ( of the american academy of environemntal medicine). it's much easier to be a member. find a fellow ! in CALi they are:
Charles A. Moss, M.D.
8950 Villa La Jolla Dr.
Suite 2162
La Jolla, CA 92037
Phone: (619) 457-1314
WebSite:
Membership: Fellow
Specialties: Acupuncture, Environmental Medicine, Family Practice, Nutritional Medicine, Anti-Aging
Certifications: Environmental Medicine, Family Practice
John Wakefield, M.D., Inc
18988 Cox Ave, Ste D
Saratoga, CA 95070-4112
Phone: (408) 366-0660
WebSite:
Membership: Fellow
Specialties: Allergy, Environmental Medicine, Biologic Psychiatry; Psychoneuroendocrinology
Certifications: Environmental Medicine
other members can be found at http://www.aaem.com/Referable_Physicians.asp
maybe the best place in the world to be if you are ill in this way is dallas. DALLAS ENVIRONMENTAL HEALTH CENTER
Dr William J Rea www.ehcd.com
there are , in your girlfriend's case, no doubt many things around her that are helping to make her feel bad. do you know all this stuff already ?
detoxifying her living space would help greatly... as would
no longer using deodorant, soaps from the store, toothpaste, etc. eating only pure, whole, organic foods will help a lot too.
the most ideal, fastest help would be: set her up in a room with a hardwood floor/ NO rug, NO wallpaper, hopefully old paint on the walls, NOTHING in the room but the bed! and hopefully neither that mattress nor that pillow will be new ! ONLY cotton sheets and blankets...washed with NO regular laundry detergant-- either washing soda or pure Borax...hung on a line to dry (line drying is best; then an electric dryer with NO anti-static sheet/etc; a gas dryer would be the last choice. hopefully if you have to use a dryer, it will have a drive belt that is made in the USA, so it is not shedding asbestos onto the clothes and into the air)
if you have the $$, your clinical ecologist will write a perscription for you to get a pure mattress (no aldehydes, which ARE a huge problem for serious candida sufferers, and no pesticides and no fire retardant coatings). you can also buy a pure/all cotton pillow. these things help a lot.
dont go near her with any cologne on or anything on you that has a scent.
right now, she is struggling, wasting energy and immune resources handling chemicals from these things that she is breathing in. they are going into her blood and making her even more tired, not to mention any more specific problems they are causing.
if you are absolutely unable to make these changes, write back and we will tell you which things in her room/living space are the worst offenders/what you can do more easily/etc...
In Reply to: CFS help posted by Chris-LA on February 17, 2001 at 14:21:08:
Chris:
You need to learn that Epstein Barr Virus and Candida are just secondary opportunistic organisms. People have so little true success because they don't find out what they really have and should be dealing with (most of the time.)
Please see the free articles and FAQs at www.wellatlast.com
There's even the panic attack connection there too.
Be well.
Steve R.
In Reply to: CFS help posted by Chris-LA on February 17, 2001 at 14:21:08:
Hi, Chris.
No matter how good a "boyfriend" you are, only SHE can do the learning that will get her out of this hole. THEN, perhaps you can help.
Both Leon and Steve have good ideas (Thanks, guys!)
ALL of her conditions are caused by the same process. She needs to begin to understand this by looking all of them (including LGS) up in the glossary and archives.
"Buffered" C is NOT esterified.
SR is BY FAR the most important thing for her to do and as far gone as she is, she will have to at least do the massage series suggested to get her started. Look up Rolfing in the glossary as the massage will only help a lot for a month or so and the rolfing would probably last a year or so.
Questions:
1. With the advanced nature of her basic problem, this is not likely to help much.
2. Personally, I would NEVER take one of those antiviral things. They are all antiDNA drugs and all of MY cellular function is based ON DNA!
3. Nystatin is the only one of those I would ever take since it is TOTALLY safe and the others are ALL very dangerous. Read about them in the PDR (Have your reference librarian show you how to read it.) Besides, it does little good to do ANYTHING about candida until LGS is well along in being managed. See the glossary for any unfamiliar terms.
4. Moving out of LA would be of little benefit and the stress of a move likely cause more problems than the benefit. Pollution is now everywhere and only by moving to the top or a mountain in Hawaii or Alaska would much benefit accrue.
HER best bet is to practice wellness seriously and imnprove her resistance---not live in a glass box trying to avoid stresses.
Hope this helps.
Walt
In Reply to: CFS help posted by Chris-LA on February 17, 2001 at 14:21:08:
Hi, Chris.
No matter how good a "boyfriend" you are, only SHE can do the learning that will get her out of this hole. THEN, perhaps you can help.
Both Leon and Steve have good ideas (Thanks, guys!)
ALL of her conditions are caused by the same process. She needs to begin to understand this by looking all of them (including LGS) up in the glossary and archives.
"Buffered" C is NOT esterified.
SR is BY FAR the most important thing for her to do and as far gone as she is, she will have to at least do the massage series suggested to get her started. Look up Rolfing in the glossary as the massage will only help a lot for a month or so and the rolfing would probably last a year or so.
Questions:
1. With the advanced nature of her basic problem, this is not likely to help much.
2. Personally, I would NEVER take one of those antiviral things. They are all antiDNA drugs and all of MY cellular function is based ON DNA!
3. Nystatin is the only one of those I would ever take since it is TOTALLY safe and the others are ALL very dangerous. Read about them in the PDR (Have your reference librarian show you how to read it.) Besides, it does little good to do ANYTHING about candida until LGS is well along in being managed. See the glossary for any unfamiliar terms.
4. Moving out of LA would be of little benefit and the stress of a move likely cause more problems than the benefit. Pollution is now everywhere and only by moving to the top or a mountain in Hawaii or Alaska would much benefit accrue.
HER best bet is to practice wellness seriously and imnprove her resistance---not live in a glass box trying to avoid stresses.
Hope this helps.
Walt
In Reply to: CFS help posted by Chris-LA on February 17, 2001 at 14:21:08:
Hope you're still checking in. I would bet that the first few months I started really getting it, I read and researched for 4 to 6 hours every day. I might as well have been sitting here reading since I felt like doing nothing else.
I say no to the anti-virals. I said no to my MD who was furious (!) because he thought it had helped others. Even if he had patients who got better, I do not think those drugs are responsible for the improvement. I don't have flare-ups of EBV anymore with fever and swollen glands, sore throats.
I got better without them and I did it without much help from my doctors. It's quite extraordinary. I agree with Leon and encourage you to examine her environment, throw out air fresheners, scented laundry implements, soaps, no perfumes. Look into MCS (Multiple Chemical Sensitivity) and the things everyone else suggested.
While you're here, use "rebounding" in the search box and check into some of the benefits many of us have gotten from this unique and enjoyable exercise (which can also move toxins through someone's system).
I take Natrol Ester-C with Bioflavonoids which is available at health and nutrition stores as well as some pharmacies. Magnesium may be a very desireable option additionally - recommend other types besides magnesium oxide, which is not absorbed well.
Water - good water. Lots (IMHO).
That "...didn't believe in candida..." line makes me so mad. Grrr. It seems many doctors have the opinion that the overgrowth of candida is usually only seen in AIDS patients, when in reality it will occur in cases of lowered resistance and that's where she's at.
When she treats the Candida, do look for proper dietary standards with NO sugar, that means fruit too. I think Stevia is okay. I've read a lot about the Nystatin here and it has to be the Nystatin powder (the liquid contains sugar)
I found the information available here from Robert McFerran regarding diet to be invaluable and I changed my diet and gained 11 much needed pounds and got more energy. Maybe you could get her to look at that (and give up those grapes).
But she will have to do it and I know there are a lot of archived posts from myself and others about the same things she needs to consider. I don't think about my health problems like I did 2 years ago and I call it a different name than either of my docotrs. Since I'm better, gee - maybe I'm right and they just don't have as much time to keep up with their reading. You or she can e-mail me if you would like.
June
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