Forum Replies Created
Hello Arijana and Bunda,
first of all, sorry for the late reply (to Arijana particularly) – as soon as I have came back from my holidays I came down with the flu and I am only now getting back on my feet!
I have not started my leaky gut diet yet, I will do this in two weeks time when my visiting parents leave and there aren’t so many culinary temptations around anymore. I must admit that I am surprised, incidentally, how much better I am dealing with “naughty” food, in terms of symptoms such as bloatedness/unwellness, since I have come of the candida diet a few weeks ago. I have been drinking small amounts of alcohol almost daily for the last 4 weeks, including beer, and have had barely any bloatedness, which I used to get quite regularly before the diet. I have kept other sugars and wheat and dairy products to a minimum, but it is good to see at least some initial improvements and enjoy a small respite before the next phase of hard work!
Now to your questions, though. My MG symptoms are mainly arm and leg weakness and fatigue, which are quite distinct from each other and can, but do not necessarily, appear at the same time. From what I read, many people start off with ocular MG and then progress to a generalized version, but I seem to have started off straight away with the full-blown version, so I think that it is not necessary to have significant eye problems before the extremity muscles are affected by MG. I do occasionally get a slight eye lid fatigue, which I normally only notice because I am straining myself unconsciously by trying to keep my eyes open at normal levels instead of letting them drop! But this is, in my case, a minor symptom which has never yet developed into double vision or dizziness; once I realize what is happening, I just let my eye lids drop to half-way, and after a while (up to 1-2 hours) the problem generally disappears. Arm and leg weakness manifests itself mostly after sudden bursts of activity like in sports, or after I have been straining my muscles for a while. A typical example for that is climbing up stairs or mountains – by the time I climb down, my upper leg muscles are struggling to keep up and have a tendency to give in if I bend my legs too much. Fiddling with small objects seems to also provoke weakness in my hands/arms. Arm/leg fatigue, on the other hand, can appear anytime, and is more prominent during the days before my period and when I am infected with the flu etc. (weakness as well). My muscles then just feel tired, even if I am not! Other symptoms which have appeared, or got worse, since I had myasthenia, are sleep apnoea and muscle “burning”. The latter is not described as a typical symptom of MG, and I am hoping that it might be caused by the leaky gut, and fixed by the treatment I will soon undergo. Finally, the blocked sinuses/nose problem I have had for several years longer than my MG symptoms, so I am not sure to which extent they are related. Arijana, I would be really interested in hearing about the details of the diet you followed to rid yourself of your sinus problems. In my case, there has been no response whatsoever to changes in diet as yet – but I have never stayed on a diet for longer than 7-8 weeks, which was the candida diet from the web site.
So Arijana, I think from what you describe that there is a chance that some of your symptoms might be caused by MG if the polymiositis does not explain it. Perhaps you should get a neurologist to test for it? I reacted to Mestinon straight away, and was also lucky to have a positive result in my blood test, which is not always the case with all myasthenics. Let me know how you went.
Bunda, it took me also a while until the die-off symptoms appeared, and they lasted for a lot longer too than most people report, so I wouldn’t give up just yet. I know what you mean though, it is so hard to pinpoint what exactly is causing which symptoms, and easy to get demotivated! But we have no other choice than to try to remove, one by one, possible candidates and hang in while we assess the results… I was also hoping that Candida was the cause of all of my “hard to assign” symptoms, and it certainly was part of the cause. Now my hope is turned to the Leaky Gut issue – lets see what comes next ☺
I will get back to you as soon as I have any results from my leaky gut diet. Thanks for your feedback and detailed descriptions, it really helps to hear of other people with similar sets of ailments and see how they deal with them!
I have followed the web site diet ( not The “strict” one) for about 7-8 weeks quite strictly, including the antifungal and probiotic treatment, and I belive that i have managed to defeat my candida problem. I had die off symptoms for several weeks, unlike the shorter experience of other people, and when they started to abate was when i came off my diet. I had since a blood test done and candida came up just barely positive, but my naturopath reckoned that this is probably a fade-off effect not to worry about. Certainly my thrush has disappeared and i feel a lot better.
Getting to your question, though, my MG symptoms have remained the same. I have, however, also found out through variuos blood and sugar intake tests that i also suffer from “leaky gut syndrome”, of which you probably have heard already in this website. The implications of this is that foreign particles are leaking into my bloodstream and possibly triggering auto- immune reactions, which obviously is very likely to have an interplay with the MG. i have found a place in Melbourne that has sent me a set of supplements and dietary instructions to combat the leaky gut specifically, a treatment that will take about 8 weeks. I am on a holiday at the moment, but in a few weeks i will tackle this problem next, and then see if it affects/ improves my myasthenia. If you like, i will report back to you on the results.
I hope this helped! Do you also suffer from MG? If yes, how is yours going?
All the best,
A follow up on my last post:
I just checked, the chicken sold under the “Macro” brand by Woolworths as “free range” chicken is accredited by “Free Range Egg & Poultry Australia” (FREPA), the main Australian accreditation body for poultry products. Under the “FREPA Free Range Meat Bird Standards” of their website, I found
“8. That only under veterinary direction are therapeutic antibiotics permitted.
Treated birds must not be sold as Free Range.”
“9. That growth promoting hormones and growth promoting antibiotics are not permitted. Coccidiostats may be used under veterinary direction if Coccidiosis is regarded as a welfare issue.”
So does this mean they are allowed to sell chicken as “free range” even if they have been treated with Coccidiostats, not listed as a “theurapeutic antibiotic”? If not, this means that I am reacting to a certified antibiotic-free chicken!! I will definitely try to get hold of fresh farm chicken – if I don’t get a reaction from that, then Australia might have a problem regarding the disclosure of important information in the poultry industry.
Oh that is interesting information you guys wrote. Yep, the chicken from Woolworths that I buy states “hormone free” but nowhere does it state “antibiotic free” – probably explaining my reaction. I will have to try to get hold of some farm-raised chicken of which I have personal knowledge that they don’t use any antibiotics, and to the same test as Marklar did.
Thanks Arijana, I hadn’t thought of that, I will give it a go!
Thank you guys for your answers! Raster, the probiotics I take are “Inner health plus” (Ethical Nutrients, 25 Billion) once a day and “Probiotic 8″(Microgenetics, 5 Billion, 8 species) once a day. Is that enough? I have taken “Candex” (40 Billion) before but the health shop at our nearest town stopped selling it at the moment. I have also started taking SF722 (10-Undecenoic Acid, 250 mg) three days ago, five capsules a day. Is that a good dosage?
I will get in touch with Able and get hold of the strict diet and try it out.
Thank you guys, appreciate the information! I will keep browsing the forum pages to learn more, and questions are bound to arise!