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| Moderated by: Dr Trevor Marshall | ||
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Margo Member in Phase 3 
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I wrote a long response to someone with sarc-related eye problems. I am copying it here, since it gives a good description of my daughter's experience with the MP. Faye, To answer your questions: 1) “What kind of physician helped your daughter with her plan?” We have used a team approach, working at educating the doctors on the disease and the MP. With uveitis, this is common, since eye doctors often do not feel able to monitor the systemic medications, while other doctors are not able to check how the eyes are doing. We have the pediatrician and eye doctor working together. Our daughter's regular ophthalmologist monitors her very closely. (Anyone on steroid eye drops, or who has problems with ocular pressure should see the eye doctor very often - every 2-4 weeks, probably.) A regular family doctor, or rheumatologist (who may be more familiar with using antibiotics to treat inflammatory diseases) can monitor the MP. Since the MP is so new, it is more important that the doctor be willing to learn, than that he have lots of experience with it. Trevor is available for phone consultations, and there is a private forum on this site for medical professionals. Whoever is monitoring the MP would want to know that you have someone carefully checking the eyes. 2) “Did your daughter go exactly by the MP plan, and were there any side effects?” There are several parts to the MP: a) We began the MP by cutting out dietary sources of Vitamin D. Our daughter began to feel noticeably better –this is the first thing that made a difference in how she was feeling. (She was tapering oral prednisone at that time, Methotrexate, and pred. forte eye drops and a dilating eye drop. She was able to wean from the oral prednisone before beginning the MP. The medications didn’t help her systemic complaints.) b) She was already avoiding the light because her uveitis made her extremely light sensitive (and it was winter, so she was quite covered up when she went outside). We made sure to continue to have her avoid the light and to be covered up while outside. She had to miss many summer get-togethers in local parks because of the need to avoid the sun. We also had to modify our summer vacation to keep her out of the light. She has become more light-sensitive recently, and is more willing to wear the NoIR glasses while outside. (She should also wear them while watching TV or working on the computer, and we’re working on convincing her to do that. The house is always quite dim.) c) The first medication of the MP she used was a different ARB, one that is not as good as Benicar, but which has been tested in children. (The doctor was uneasy because Benicar had not been tested in children.) After a few months, with no problems with that drug, she switched to Benicar, 20mg, 3 times a day (at the doctor’s insistence).. She experienced great relief of systemic complaints from the Benicar. We then sent up to 40 mg, 3 times a day, with no problem. (Many people worry about blood pressure issues with Benicar. Our daughter, at 12, had no problem adjusting to the Benicar, and continues to have good, low-normal blood pressure.) d) She began the antibiotics with 25 mg of minocycline every other day, and worked up slowly. We consulted with Trevor about the next stages of antibiotic use (Stages 2 and 3 of the MP). e) The eye doctors were adamant about not stopping the Methotrexate until it is clear that the uveitis is under control. We discussed this with Trevor, and monitored the medications and amounts of antibiotics very closely, because Methotrexate has some anti-biotic activity. Any patient who cannot stop Methotrexate must have his or her doctor discuss this with Trevor prior to using the MP. In terms of side effects/reactions: We have tried to maintain a delicate balance of protecting the eyes from serious Herxheimer reactions. We, and our doctor, discussed this with Trevor Marshall, and decided that a slower increase of antibiotics was necessary. We have not seen any problems emerging in the eye. The cataracts were forming rapidly because of the high doses of prednisone (and the uveitis). She has had Herxheimer reactions when starting an antibiotic, or when increasing the dose. They have always been reminiscent of symptoms she has had with sarcoidosis. The reactions are transient, lasting a day most of the time. After a few weeks, the symptom seems to go away for good. Here are some symptoms that are gone: constant extreme headache (present previously for more than a year), irritability, nausea and feeling of fullness, poor appetite, overwhelming fatigue, frequent urination. I always suggest that people who have sarc-related eye involvement try to see a specialist in ocular inflammatory disease. While these specialists are unlikely to be familiar with the MP, they are better able to diagnose these relatively rare problems than local eye doctors. (Uveitis is so rare that most ophthalmologists have only seen it while they were training.) At http://www.uveitis.org or the related patient-support site, they can help you find a doctor who has fellowship-level training in ocular inflammatory disease. Most people need to travel to see such a specialist. Once you see the specialist, he can consult with your local doctor about any problems, and help make sure that you are in the best position to have successful cataract surgery. Margo |
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NancyB Member
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Margo, I appreciate you sharing this detailed report with us. I have posted Max's test results and we are seriously considering the MP. It sounds encouraging to me that your daughter didn't have problems with blood pressure. When you started at the lower dose of Benicar, how long was she on it before you moved up to 40mg? I know this is not the recommended protocol, but I am wondering if body weight has any impact on the dosage that is suggested. Max weighs only about 110#. It also sounds like she's been able to manage the herxes without losing much ground - I'm sure going very slowly has helped in that regard and staying out of the sun. Did you use Quercitin at any point? Thanks again, ~Nancy |
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Foundation Staff . 
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Nancy, We have some tiny adults on the MP too. Trevor has said that body weight has no bearing on the Benicar dose. Max's age is probably the central issue. Margo's daughter's doctors felt more comfortable ramping up the Benicar dosage because of her age and the untested territory of this off-label usage with a child. It has become one of my favorite MP success stories. Best, Meg |
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Margo Member in Phase 3
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Nancy, Our daughter was on Benicar at 20 mg, three times a day, for two weeks before we switched to 40 mg, three times a day. She was adult size at the time - 5 feet, and weighed more than Max because of being on oral steroids for 10 months. We use Quercetin occasionally with the Third Phase of the MP, at times when she feels more poorly from the Herx. reaction. Earlier on, we didn't know about Quercetin. It is probably good to have in the house, in case it is needed. Margo |
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Margo Member in Phase 3
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I have some more progress to report. In December, my daughter had her annual visit with the pulmonologist, and had a complete set of pulmonary function tests. She improved on every measure, and is now in the low range of normal or higher on all of the tests. The pulmonologist was quite surprised, as she had expected things to stay the same or decline. Margo |
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Margo Member in Phase 3
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Here are some recent labs (and some older labs for comparison), with a few questions. For the most part, the labs have moved in to the normal range. Vitamin D test results: --------1,25 D----25 D 12/2002---70-------15 3/2003---110-------12 (on ARB and mino) 4/2003----92-------11 (on ARB and mino) 8/2003---117-------13 (on Benicar and mino) 1/2005----59-------<6 (on Phase III of MP) One of the doctors is concerned about the 1/2005 vitamin D levels (because the 25D is so low). sACE tests: 3/2002 158 1/2003 158 4/2003 166 8/2003 150 1/2005 80 I recall Dr. Marshall saying that Benicar will elevate the serum ACE levels, but I haven’t been able to find the reference. It would be useful if there were a reference I could share with our doctors. Hematocrit and hemoglobin: These measures have been gradually getting lower. The last measurement in the normal range was in 11/2002. On 3/2005, the hematocrit was 10.1, up from 9.5 on 1/2005. Have other people’s iron levels normalized on the MP? Several of the doctors are quite concerned about these measures. (I realize that anemia is typical in Th1 diseases, and have referred other posters to articles on the subject.) Alkaline Phosphatase: Highest ever tested was in 2003, at 780, with the lab maximum at 330. On 3/2005, it was 267. Everyone is pleased with this change. Sed Rate: 1/2005 72 3/2005 52 This concerns one of the doctors. Dr. Marshall has said that it is expected to go higher in the early stages of the MP, and will move closer to normal over time, eventually returning to baseline. Everything else, including creatinine, BUN, etc., are normal as they have generally been. Symptoms have continued to improve: the eye inflammation has been moving slowly downwards, especially since an antibiotic change in fall of 2004. The inflammation is either very low or normal. (She continues to use prednisolone eye drops.) Her energy is better, and she can walk faster, without much fatigue. We are very pleased, especially with the improvement in her uveitis (eye inflammation). Margo |
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Margo Member in Phase 3
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One more update. In anticipation of eye surgery, my daughter had a Remicade infusion about three weeks ago. We agreed to the infusion because the risk of serious inflammation that could compromise the cataract surgery is quite high in someone with uveitis. The goal is to have the Remicade reduce the inflammation so that the eye can heal without scarring or other damage. (Remicade, as an immune-suppressant, is contra-indicated on the Marshall Protocol.) She had a Remicade infusion once, also before eye surgery, and then resumed the Marshall Protocol. The Remicade set her back several months in terms of progress on the Marshall Protocol. My daughter had several eye procedures this month, which have gone extremely well. She had a YAG laser posterior capsulotomy in the R eye about three weeks ago. (It is quite common after cataract surgery to develop a haze over the posterior capsule of the lens, which this corrects.) While a simple procedure for the patient, it increases the risk of more inflammation in the eye for a person with uveitis. She had a very small increase in inflammation right after the procedure, with a return to baseline in one week. She now sees 20/20 out of that eye, and she is very pleased with how bright and clear everything is. (Vision was 20/40 to 20/50 before the procedure.) We were very nervous about this procedure, as it wasn't completely necessary. The ophthalmologist urged us to consider doing it at this time in order to take advantage of the anti-inflammatory effect of the Remicade. Since we are very reluctant to use Remicade, this allowed our daughter to avoid a dose of Remicade at a future date solely for this procedure. One week ago, she had cataract surgery with lens replacement in the L eye, which had been seeing about 20/80. At her re-check yesterday, the inflammation was the very tiniest bit elevated, which the doctor said would be remarkably good for someone without eye disease at this point after cataract surgery. This is also much better than after the previous cataract surgery. We think this is due to the progress she has made on the Marshall Protocol. We are so very pleased about how well this is going. Margo |
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Dr Trevor Marshall Research Team 
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Margo, You will find no paper talking about the levation of ACE and Angiotensin II when ARBs are in use because it is such fundamental biochemistry. Any biochem undergrad ought to be able to figure that out. We did talk about the biochemical cycle in one of our early papers "New Treaments emerge..." http://tinyurl.com/mcqa ..Trevor.. |
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Margo Member in Phase 3
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Trevor, Thank you. Several of our doctors are unfamiliar with this connection, perhaps because they are in specialties where they rarely prescribe ARBs. It is interesting to note that the serum ACE fell from 166 (when not on any ARB) to 80 (while on Benicar at 40 mg three times a day). If Benicar is expected to push up the serum ACE, then one would expect it to be even lower in the absence of Benicar. Margo |
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Margo Member in Phase 3
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I mention above that my daughter had one Remicade infusion before cataract surgery and laser eye surgery. We were never fans of Remicade, but accepted the ophthalmologist's recommendation to use a few doses to help control inflammation that would impede the healing of the eye after cataract surgery. (As a strong immune-suppressant, Remicade is not advised to be used while on the Marshall Protocol. Most drugs which are used in this context are contra-indicated by the Marshall Protocol. On the other hand, too much inflammation after eye surgery can cause problems such as adhesions which impede the movement of the pupil, damage to blood vessels, etc.) She began to receive a second Remicade infusion a few weeks after the cataract surgery, but almost immediately had an infusion reaction - an anaphylactic reaction to the Remicade. The infusion was stopped, and she was given some medication to stop the infusion reaction. She was much better within a few minutes, fortunately. The ophthalmologist is keeping close watch on her eyes. At this point, Pred Forte eye drops are sufficient to control the inflammation. We will be tapering the eye drops very slowly. When our daughter had her first cataract surgery, she experienced some rebound inflammation as the immune-suppressants from the surgery wore off. Over time, the inflammation went back down to previous levels, and then decreased even further. We attribute this further decrease to some third phase MP antibiotics. This time, she actually had fewer long-acting immune-suppressant medications at the time of surgery, and less inflammation after surgery. She still has a month or two of post-surgical healing. Margo |
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Margo Member in Phase 3
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Sometimes, when postive changes happen, it takes a bit of time to really appreciate them. It has been three or four months since my daughter succeeded in convincing us to stop the weekly Methotrexate injections. We all hated them, I have to say. On the plus side, she has much more energy now. Mtx made her nauseated for 2 or more days each week, despite using a powerful anti-nausea medicine. On the other hand, she did experience increased eye inflammation. Since this also coincided with a post-operative period when this increase might be expected, we cannot blame it all on the lack of mtx. The inflammation has responded to more frequent pred. forte eye drops, which we are gradually tapering. The doctor is also looking into a recently approved NSAID eye drop, Nevanac. (Here is the link to the package label.). Unlike earlier periods of increased inflammation, my daughter felt no associated pain. In the past, pain was often the first sign that the inflammation was increasing. The pain was partially controlled in the past by the use of drops to immobilize the iris (similar to relieving pain in an inflamed joint by making sure not to move it). To me, this suggests that the inflammation of the fibers of the iris has decreased. The evidence of inflammatory cells may be coming from some nearby area of the eye that has not yet responded to the Marshall Protocol. A visit to the pulmonologist (at the request of another of her doctors) confirmed that stopping the mtx made no difference in the lung function. This time, the pulmonologist thought to adjust the results from the lung function tests to take into account my daughter's mild anemia. The relevant tests came out at 95% of expected values when they were adjusted to reflect the fact that decreased red blood cells would cut down on how much oxygen the blood could carry. My daughter has so much more energy than before. Not quite as much as she should have, but she is getting there. She had an incredibly busy weekend (typical teen-age schedule,I think), and she held up through the many, consecutive activities. Fatigue has been one of her most bothersome symptoms. I just wish there were a "fatigue-o-meter" so we could easily quantify this change for the doctors. Margo |
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Dr Trevor Marshall Research Team
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Margo, We have one CFS member who was legally blind and who has slowly regained his eyesight on the MP alone. I am still not convinced that the MTX and Steroid Eyedrops do anything but hinder recovery. I think you need to be looking at inflammation in the longer term rather than on a daily or weekly basis. ..Trevor.. |
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carol Moderator 
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Margo: It seems I have read about so many cases of Th1 sufferers who wanted to treat their disease with antibiotics but found that coming off of mtx, humiera, embrel, etc was a seemingly impossible task. I am so glad to hear that you and your daughter has succeeded where others have failed. I would say this is testimony to the power of the MP as well as your skill and perseverance. This is fabulous news! Carol |
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Margo Member in Phase 3
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About 7 weeks ago, my daughter started using Nevanac eye drops, a recently approved NSAID eye drop. We are also in the process of slowly tapering the Pred Forte eye drops. Her eye inflammation has now decreased another notch. This is now about seven months after her eye surgery. When she had the first cataract surgery, it also took about seven months for the inflammation to settle down to this level. We can't yet say if the Nevanac is making a difference. The ophthalmologist thinks that it should be a help in tapering down the steroid drops. Over the next three or four months, we may find out. She doesn't have other eye symptoms. Her vision has remained steady, and quite good, thankfully. (Before her cataract surgeries, it was very poor.) Her energy level is better than it has been for years, though still lower than normal for her age. Herxes tend to make her fatigued and grouchy, but usually pass pretty quickly. Margo |
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