by Jacob Teitelbaum M.D.
This is a brilliant concept developed by Dr. Ritchie Shoemaker. He theorizes that many different infections can produce toxins. These are toxic chemicals that can persist in the body even after the infection is gone. Normally, the body is able to excrete toxins through the liver and kidneys and eliminate them from the body. What makes these toxins unique is that only the liver excretes them. The liver excretes the toxins into your bowel (via the bile) so that they can be eliminated from the body with your stool. Unfortunately, these toxins are able to be reabsorbed from the bowel and therefore cannot be eliminated (they continue to re-circulate to the liver and then back to the blood).
Dr. Shoemaker believes that one common situation where this occurs is in Lyme's disease. The Lyme infection has often already been eliminated by using antibiotics but the toxins continues to persist in the body. Therefore people continue to be ill. He also believes that many other infections, including fungal infections that can be found in sick building syndromes and many waterborne infections can also produce similar toxins. It is possible that in the case of certain viral infections or after some traumatic injuries, the body's own genes may even be able to be tricked into continually making the toxins.
In addition to getting rid of the neurotoxins, it is important to support the body in two other key ways. These were developed and popularized by Dr. Russel Jaffe Ph.D. and are called the Vitamin C flush and the "Alkaline Way Diet". How to do these will be discussed below after we’ve discussed how to clear the neurotoxins.
So how can I test for these toxins?
Although there are no blood tests currently available, Dr. Shoemaker feels that your nervous system is very sensitive to these toxins. The retina in the back of the eye is part of the nervous system. He uses a test that examines the body's ability to discern different shades of black and gray. This VCS vision test (called the FACT) can be done on his web site (www.ChronicNeurotoxins.com -see this site for more info) for ~ $9. If you see a halo/glare around lights at night (which may cause trouble with driving), light sensitivity during the day, or have shooting pains, these symptoms (along with most of the other symptoms of CFS/fibromyalgia) are also suggestive of possible neurotoxins.
What is the treatment?
Because the liver is able to pull the toxins out of the body and excrete them into your bowel, the trick is to keep the toxins in your bowel so that they go out in the stool. Fortunately, there is an old medication called Questran (cholestyramine). It is a powder that acts like a sponge, and it used to be prescribed to pull cholesterol out of people's bodies. Dr. Shoemaker recommends that people take one scoop or one packet four times a day (although not as effective, you can sometimes get by with 3 times a day, however). Within a month (usually within 3 days to 2 weeks), those who are going to improve with this treatment will often start feeling better or at least have their vision test improve. Insomnia, pain and spastic colon symptoms can sometimes improve in 1-3 days with this treatment! If the Questran does not help symptoms or the vision test after 6 weeks, I have people stop the treatment. Most people are better and can stop cholestyramine after one month, but it can take 2 months for Lyme’s patients and those who have been ill with continuing toxin contact for a long time. When you improve and feel well with no further improvement in the symptoms or vision tests for 2 weeks in a row, suggesting that all of the toxin has been removed from your body, you can stop treatment. If symptoms recur, it suggests that something (e.g.- persistent infection or being in a “sick building”) is still making neurotoxins. This then should be treated as well. In this situation, I would continue the medication until it is no longer needed (e.g. -- try stopping it or lowering the dose every month). The main problem with Questran is that it soaks up everything. This means that you will likely not absorb a lot of the medications or supplements you are taking if they are taken at the same time as the Questran. Because of this, take the Questran/cholestyramine exactly this way: .
1- Take your thyroid as soon as you wake (leave it at your bedside with a glass of water). A half-hour later take your Daily Energy Enfusion vitamin powder, lipoic acid 300 mg and nystatin (and Cortef if prescribed). You can also take any other medications that are needed for other problems at this time. Take the Questran one hour later (1 scoop mixed in eight ounces of apple juice or distilled water followed by 12 ounces of distilled water). Exactly one-half hour after taking Questran, eat something that has at least a teaspoon of healthy fat (e.g. -- one egg or a pat of butter). Eating makes your body pour the neurotoxin containing bile into your gut. Eating ½ hour after the Questran puts the medicine right where it needs to be (like a catchers mitt) to soak up and bind the neurotoxins.
2- Also take the next 2 doses of Questran (each day) as close to a half hour before lunch and dinner as you can. Take your last (4th) daily dose one-half hour before bedtime and eat some turkey or an egg right at bedtime. Take your sleep medications/herbals an hour before the nighttime Questran.
3- Drink 12 ounces of water after taking the Questran. It is best if the water is pure without any minerals. Distilled water is inexpensive and would be a good choice.
Constipation is normally a problem while on the Questran, so drink a lot of water and use prunes or other laxatives as needed to have at least 1 BM a day for the time you are on it. Dr, Shoemaker uses 70% sorbitol, 1-3 tsp three times a day as needed for constipation (available by mail from Cape Apothecary@ 410-757-3522). Using a laxative called “ Cleanse More” from “www.RenewLife.com”, prunes, or other laxatives may be gentler (see treatment protocol for constipation treatments). You should have at least 1-2 bowel movements every day while on the Questran. You need to keep things moving to get the toxin out of your body!
It is not uncommon for people to have their symptoms worsen -- sometimes dramatically -- when one first kills off a chronic infection. This is called a Herxheimer reaction and was first noted in the early days of treating syphilis. Since then, it has been seen in many infections, including fungal infections. Interestingly, some people also experience this when they begin Questran to remove the toxins. In speaking with Dr. Shoemaker, he recommends that those who flare with the Questran be tested and treated for Lyme disease and that they take a medication called Actos 45 mg a day for 7 days before restarting the Questran (and continue it for 3 days after resuming Questran) to decrease the die off reaction. While you're taking the Actos, you should also be on a diet that is very low in sugars (a “low amylose diet"). For this diet you should also avoid any root vegetables such as potatoes, carrots, etc. and you should also avoid all grains during that ten-day period as well. Because people with CFS/fibromyalgia tend to be very sensitive to medications anyway, you may choose to begin with one teaspoon of Questran once or twice daily for 1-2 days and then increase the dose as able to decrease the risk of getting a severe die off reaction. Although the infection/toxin die-off reaction is uncomfortable, it is a good sign that things are being cleared out and is worth going through. If you get the die-off, fill and take the Actos as discussed above for a week before resuming the Questran and let us know so we can look for Lyme’s and treat it. Fortunately, most people who do not have chronic Lyme’s syndrome improve without an infection/toxin die-off reaction. Although the Questran has ~ 1 tsp of sugar per scoop, it is still OK to use in this situation. Using unsweetened cranberry juice (add stevia) instead of apple juice, or simply mixing it with water if even minimal sugar is a problem will decrease the amount of sugar you’re getting as well. You can also get Questran lite with NutraSweet.
The vitamin C flush
Human beings, monkeys, and guinea pigs are just about the only animals that cannot produce their own vitamin C. Adjusted for weight, most animals would make about 5-15 thousand mg of vitamin C a day, making even more during illness. During health, the vitamin C in your body usually lasts for about 30 hours. During illness, however, it can be used up in as quickly as a half hour. Experience suggests that during the detoxification phase (i.e. while you're on Questran) your vitamin C requirements may skyrocket. Because of this, doing the vitamin C flush can be critical to this treatment working. You only need to take the extra vitamin C for as long as you're taking the Questran.
As everyone's needs are different, it is important that you tailor the vitamin C dose to your body's needs. You can do this by seeing how much vitamin C it takes to create watery diarrhea similar to what you would have after taking an enema. To determine how much vitamin C to take each day, do a "vitamin C calibration". Take 3 to 6 grams (1 to 2 teaspoons) of vitamin C every fifteen minutes until ~1 to 2 pints of watery diarrhea occurs (do not stop when you simply have a loose tool). This usually takes about one to four hours and is sometimes associated with a "flush" during which people feel much better. The period where you feel better lasts longer and longer over time. The total daily dose of vitamin C you will need is three-quarters of the dose that it took to cause the diarrhea. For example, if you took 3 grams every fifteen minutes for two hours (i.e. 8 doses) before you had the watery diarrhea, this would be 3 grams times 8 doses (or 24 grams). Divide 24 by three-quarters and that would mean that you would need to take 18 grams a day. Beginning the next day spread your daily dose through the day (i.e. take it at least two to four times a day) while you're awake and do not take more than 4 grams during any half hour period.
Around once a week, repeat the test to see how much vitamin C your body still needs by repeating the "vitamin C calibration". The Questran is constipating, so it may take a higher dose of vitamin C than it usually would to cause the diarrhea. Because of this, do not increase the vitamin C by more than 25 percent above the dose you took the first week. Normally, the dose you need will decrease as your body gets saturated with vitamin C and your health improves.
Some important tips for doing the vitamin C calibration:
1 -- Use only buffered calcium/magnesium ascorbate (available from Perque –from our web site at www.endfatigue.com or your practitioner can order it from Perque at 800-525-7372). Use the powdered form, which contains three grams of vitamin C per teaspoon for the calibration. Dissolve it in at least one ounce of water per gram of vitamin C. Be sure to record the total amount of vitamin C that you take as you are doing the calibration. When dissolving the vitamin C wait until it stops bubbling to drink it (approximately one to two minutes)
2 -- you may get some gas or rectal burning during the flush. This can be decreased by going a little more slowly and being sure to use plenty of water to dissolve the vitamin C. This is unpleasant but improves with time.
3 -- start the vitamin C calibration early in the day before eating and give your self the opportunity to stay home all day in case it takes a higher dose than normal to get the watery diarrhea. Most people get the diarrhea/flush at between three to eight teaspoons of vitamin C .For those whose illness is more severe however, it may take over twenty teaspoons. If you start with 1 tsp every 15 min and you experience no rumbling (feeling of having to evacuate soon) after 4 doses (1 hour) you should double the dose to 2 tsp every 15 min. Otherwise it may take 4-5 hours to flush. If you flush at a dose of over 48gm you should take 1-2 tsp the evening of your flush
4-- although it is easier to use the powder for the one-day vitamin C calibration, you may find that for day-to-day use, the tablets are in the for more convenient. Use only the buffered vitamin C tablets or powder. I recommend you use the brand from Perque (1 - 800 - 525- 7372).
5 -- you can stop the vitamin C when you're done with the Questran, as the amount in the vitamin powder will likely be adequate. You do, of course, have the option of staying on a higher dose of vitamin C, which you can adjust to what feels best if you find this to be helpful.
Creating an alkaline diet
Chronic infections and poor circulation at a cellular level can cause increased acid production in the body in some people with CFS and fibromyalgia. This can aggravate the symptoms and make it harder to eliminate the toxins. Dr. Jaffe has also popularized what he calls “The Alkaline Way Diet”.
It can be very helpful to follow this diet from the start of treatment. Once you're done with the Questran you can liberalize the diet and see how you feel. You can get an idea of how much of an acidity problem you're having by testing your morning urine.
To do this, get a packet of pH hydrion test paper from your local pharmacy or from 800- 553-5472. Each morning use a 2-3 inch strip of the paper tape to test your urine. This can be done by either urinating directly on the strip or urinating into a cup and dipping the strip into your urine. Match the color of the test strip with the color chart that comes with a pH strips. The number that goes with the color indicates the acidity. Any number under 7 indicates an acidic urine, with the acidity being mild between 6 and 7. The optimum morning urine pH is between 6.5 to 7.5. If your reading is below 6.5, I would switch to an alkaline diet as discussed below.
Look at the chart to see which foods are most alkaline and which ones are most acidic. When possible, eat foods from the alkaline side and in the beginning avoid foods in the ‘more acid’ and ‘most acid’ columns. In general, high acid foods include beef, chicken, sugar, coffee, tea, cheese, wheat and dairy. When you look at this list, you can understand why Americans tend to be acidic. Alkaline forming foods include most fruits and vegetables, oats (which would be good to have for breakfast), wild rice, and most seeds. Fish and lamb are only mildly acidic.
In the beginning, you may do best to have 80 percent of your food come from the alkaline lists. As you feel better and your urine becomes more alkaline (be patient -- it may take a few months for this to happen) a 60 percent alkaline food diet and 40 percent acidic food diet will generally work fine. It's okay to simply let your morning urine be your guide by keeping the pH between 6.5 in 7.5. A simple rule of thumb is to eat two portions of vegetables and one of fruit for each portion of meat or grains.
How to organize and apply this information.
1 -- day one -- order the vitamin C from Perque at 800-525-7372). I would get both the powder and tablets. Get the pH urine test strips from your local pharmacy or from 800 553-5472. Meanwhile, you can start the Daily Energy Enfusion Powder and B-complex, your thyroid hormone and Cortef (if prescribed),lipoic acid 300 mg, nystatin, any treatments that are dissolved under your tongue or applied to the skin, and your treatments for sleep. Go to the "www.ChronicNeurotoxins.com" website and do the VCS/FACT vision test. If the test is positive this is great news because there is a good chance this protocol can make your symptoms go away! You'll probably be repeating this test four to six times. If you have a history of being sensitive to bright lights (do you wear sunglasses a lot?) or the glare of lights at nighttime (do you have trouble with night driving?), or a metallic taste in your mouth I would consider doing the Questran protocol even if your vision test is normal. If your urine pH is under 6.5, begin the alkaline diet as discussed above.
2 -- as soon as is convenient find a day that you can stay home. Begin the vitamin C calibration in the morning.
3 -- the next day began the following schedule. Take your thyroid as soon as you wake (leave it at your bedside with a glass of water). A half-hour later take your vitamin powder and nystatin (and Cortef if prescribed). You can also take any other medications that are needed for other problems at this time. Also began to take your vitamin C (spread through the day -e.g. -- take vitamin C when you take the vitamin powder in the morning, your sleep medications at night, and with meals -- or whenever you feel like it). One hour after taking the vitamin powder take your first dose of Questran (1 scoop mixed in eight ounces of apple juice or distilled water). Exactly one half-hour later eat a meal with some fat (e.g. -- a teaspoon of healthy oil or a pat of butter) and protein (one egg would do the trick). Take the Questran three more times during each day mixed with water (distilled if available), each time eating a meal with some fat and protein as close to a half-hour after as is possible. Always drink another 12 ounces of water after taking the Questran. You may choose to take your last dose one-half hour before bedtime and eat some turkey or an egg right at bedtime. Take your sleep medications/herbals an hour before the nighttime Questran.
4 -- Stay on the schedule in the paragraph above for at least four weeks. Check your vision test and fill out the brief symptom questionnaire every one to two weeks. When your symptoms and the vision test at www.ChronicNeurotoxins.com have improved to where there's no further improvements for two weeks (or if there's no improvement in your symptoms OR the vision test by 4-6 weeks) you can stop the Questran and vitamin C. If symptoms recur, you can go back on the vitamin C and/ or Questran at the lowest dose needed to feel good for as long as you need to. If you need Questran long-term, time the doses so that they are at least one hour after or four hours before any other oral medications/supplements that you need to take. If symptoms recur within one to three days after stopping the Questran, consider the possibility of a toxic mold exposure in your home or office (e.g. -- sick building syndrome).
If your CFS/fibromyalgia symptoms worsen (this does not include digestive symptoms) on the Questran, stop the Questran and fill the Actos prescription. Take one 45 mg Actos tablet a day for ten days. On the seventh day, resume the Questran. This will decrease the severity of the ‘intensification reaction’. In addition, be sure to stay on a low amylose diet (i.e. no grains, root vegetables like potatoes or carrots, or bananas) while on the Actos. It is worth putting up with the flare for the one to four weeks after which you'll feel much better than before. This intensification reaction is most likely to occur in people with a history of Lyme's disease, ciguatera, or in those with a certain bacterial infection in their nose (in most CFS patients the sinusitis is from yeast). This is why you should let us know at some point if you have the intensification reaction so we can look for and treat these other problems as well.
Once you are done with the Questran, you can begin to slowly increase your walking, stretching (e.g. Yoga for Beginners- a VCR tape by Patricia Walton -- do the first four standing poses), and strengthening exercises (using five to ten pound weights).
Questran can be very constipating. Be sure to have at least 1-2 bowel movements daily so that you are flushing the toxin out of your body! Try to drink close to a gallon of (distilled if available) water a day, and use the “Cleanse-More’’ formula from www.renewLife.com (two capsules two to three times a day), prunes, sorbitol 70% 1 to 3 teaspoons three times a day, increased magnesium, or whatever else it takes to avoid constipation (see the treatment protocol for ideas). If you get acid reflux/ indigestion, you can use the over-the-counter medicine Zantac or call for a prescription for Prilosec if needed while on the Questran.
5 -- when done with the Questran (or after eight weeks -- whichever comes first) begin to add in the rest of the treatments. The natural treatments can be started immediately. One new prescription medication can be added in every one to three days.