More info on Sibo-A plan for treatment

I found this to be interesting!

sibosurvivor.com/sibo-treat...

[nightdancer]

RLS is neurological. ww.rls.org And, we do not use the word cure. Treatment maybe, but you really have to watch your sources.

[Hidden in reply to nightdancer]

There is evidence that there are many conditions that can affect ones legs! To include gut issues, not just neurological.

[restlessstoz in reply to nightdancer]

I've read some of the information and without digesting all of it, it does raise a question; It says that 'malabsorption of nutrients' is a symptom. Now, I've been on the FODMAP diet for about three months and in those three months I increased my ferritin levels from 78 to 97/110 (non-fasting/ fasting results) whereas in the previous three months, I went from 75 to 78! I was wondering whether the diet may have increased my ability to absorb the iron and this information suggests that it could be the case.

If RL is in part, in some people, due to lower ferritin levels and a lot of RL sufferers have difficulty absorbing iron, perhaps there is a link?

[Graham3196 in reply to restlessstoz]

Do you still have RLS symptoms?

You might note that some recognised experts talk of patients who need to raise their ferritin to about 300 to get re;lief from symptoms. Unfortunately they suggest that you cant do this by oral supplements in a reasonable time. Raising it to around 100 is reasonable . To reach the high readings in a short time requires an iron infusion, The problem is that its difficult to get an iron infusion on most health insurance or public schemes because RLS is not recognised as a serious problem by those who dole out the money. It seems to cost around $500 to buy an iron infusion in most places. I think that about $300 of that might be the actual "retail" cost of the liquid they infuse.

I know of a couple of people who had RLS and were anemic. In one case her R:LS has been "cured" for months and in the other she has had zero RLS for weeks. I notice that Dic Carlson seems to have been "cured" and there are other reports.

The silly thing is that the drugs that are available for RLS probably cost more than $500 for a year so the cheapest solution would be to try an infusion for every patient. Wouldnt that be great for the patients who were the lucky ones! And for the taxpayers.

[restlessstoz in reply to Graham3196]

Thanks for your reply Graham. I thought of you when I went to our local hospital here in Tassie to see the haematologist. Either I was very persuasive...and I was on my soap box, or he is especially progressive, or he just wanted to get rid of me- but he authorised an iron infusion. I saw him on the Monday of last week, and had the infusion on Thursday! And, wait for it, it cost me $6.50!!! I couldn't believe it when they handed me the bill. I did think of you and what you had to pay. Even at my GP's surgery where they do them for anaemia, it costs about $50 for an infusion! I believe I am very lucky. I'm having a blood test in 6 weeks to see what the levels are doing.

I quite agree that it should be the first line of defence with people with RL but they seem to turn to prescriptions first. Madness, when it's quite possible that it would then mean some people never have to go on medication. I'll keep you informed as to whether the infusion helps. Meanwhile, the FODMAP diet continues and I'm trying adding some foods. The trouble is that I'm still getting symptoms and am up at least 3 times a night, often for over an hour or more so it's not easy to work out if something is having a negative effect. I'm intrigues by the SIBO information though and I believe that by going on FODMAP, I enabled my digestive system to recover enough so that I was able to absorb the iron far better going from 78 in March to either 97 or 110 (non-fasting vs fasting) by mid June whereas in the previous three months it was 75 up to 78!!! Not much movement at all and it coincides with going on the FODMAP diet. Worth pondering.

[LotteM in reply to restlessstoz]

Good news about the iron infusion, restlessoz. I hope you’ll be among the about 50% for whom it proves effective. Wait and see and keep us posted.

[restlessstoz in reply to LotteM]

Will do Lotte!

[Graham3196 in reply to restlessstoz]

Hey I missed your email. Congrats on finding a great hematologist or successfully persuading an ordinary one. I can't wait to hear how your going. Don't take it to heart if you don't get an instant improvement. I believe that it took about 12 weeks for me to feel the difference.

Its really interesting that you seem to process iron better while following the FODMAP diet. Its an unexpected benefit that's worth thinking about.

There are two effects that confused me when I was trying to identify problem foods. You probably know about them but I'll be brief.

There is a threshhold effect. My example is milk. I drank a half glass of real milk each night for three (or so) nights with no ill effect, then a couple of nights of three quarters - no effect so then one full glass and I had RLS that night so I gave up lactose. Perhaps I should have allowed myself a half glass per day but I know what I am like and it would have been too hard - zero I can understand. It is also possible that if I had a half glass every day for a week the lactose effect would build up and exceed a threshold that would bring on the RLS.

Second is a time delay that I haven't seen any reference to elsewhere. If I ate something I shouldn't on Monday I would often be OK Monday night but RLS on both Tuesday and Wednesday nights. It makes it hard to track cause and effect.

I wish you luck and hope to hear great news soon

Cheers

[restlessstoz in reply to Graham3196]

Thank you Graham. I'm writing this at 12.20 am so not a great time to be up, however, better than some nights hopefully.

I really appreciate your reply and will also do as you suggest and take no added iron. If what I believe is correct and I'm absorbing iron better on the FODMAP diet, then I should maintain my ferritin levels, assuming I'm not losing iron and a faster rate as per the article below.

I started on Lyrica about 5 weeks ago and find that the RL symptoms are better than before but am woken usually by arthritic pain that then triggers legs. I'm also experiencing deep 'aching' calves at anything from 3 am to 6 am which wakes me up and then I'm up for at least an hour. This too triggers RL sensations and the need to move. At least it's not full blown RL though the result is the same, being awake for hours a night!

Your delayed response to food is interesting and I wonder if its related to gut flora responding to the foods you eat and that in turn causes a physiological effect a couple of days down the track until the flora settle back down again??? I really don't know if that's even how it works so forgive my ignorance- just thinking out loud.

I definitely know about the threshold effect and realise that a food can be low FODMAP at 30 g serve then high at 100 g serve. At least it enables us to enjoy some of the foods sometimes in small doses and I've wondered whether the FODMAP ratings allow for the same amount to be eaten in the same day, say at the next meal, and still maintain it's FODMAP rating. I suspect not but haven't read anything that says 'once a day'.

Gentle Iron seems to be a general name for iron biglycinate, not the name used by one company only. I shall wait and see what my iron levels are at 6 weeks post infusion and then will have another test at 12 weeks, by which time I do hope I can see some improvement in my RL symptoms. For me, even if my symptoms are a lot milder, they still make me wake up and have to get up and lose sleep just the same as if the symptoms were worse so the overall effect is the same. However, I am glad of the reprieve from severe symptoms regardless.

I will let you know if I get an improvement in a few weeks time. Thanks to reading of your experience I'm not expecting anything until at least then. However, it may be clouded by having started Lyrica at about the same time.

[restlessstoz in reply to Graham3196]

Graham, do you take an iron supplement still? I'm not sure whether to continue mine or not? If I do it will have to be taken with food as even the Gentle Iron causes gastric upset.

[Graham3196 in reply to restlessstoz]

I have decided to discontinue the iron supplements now my ferritin is up because I want to see if my ferritin level stays high without help.

The info that made me decide to do this came from a report from Doctor Buchfuhrer so I quote it.

""What the guys at Hopkins did, they gave iron intravenously usually about 2 or 3 or 4 series of infusions of this iron, and they got the levels around 200 well, low and behold, about 80+% of the patients all of the sudden had their RLS symptoms completely vanish. They could drop all their medication and these were severe patients for the most part. They dropped all their medications; they felt great. They said 'my RLS is cured.' Anyway, very interestingly, 6 months to maybe 2 years later, these patients started calling back saying, 'my RLS is coming back, what's going on?' So they brought them back to Hopkins and rechecked their serum ferritin and their CSF ferritin, the ferritins around their brain and low and behold these guys were again low on ferritin. Now typically when we get someone with iron deficiency, anemia or not, and we tank them up full of iron, and typically this will be someone who has like a bleeding ulcer or women with heavy menstrual period or God knows what, who get low on iron, once we tank them up unless they bleed again, they're good for life. So this was very perplexing. And now what we believe is that the REAL defect in restless leg syndrome May in fact be a leeching out of iron faster than normal. We all lose a little iron every day but we get it back in our diet, very, very easily. We feel that restless legs patients are losing it much faster, so the normal diet doesn't come close to replacing it. And at least the guys at Hopkins postulate that the genetic defect may be something to do with iron metabolism and that RLS is only secondary to that. "

So if my ferritin drops back to my original I will try to get some specialist to work out if I am losing blood internally or something.

Incidentally for iron I took Blackmore's pregnancy iron on the advice of some expert at Blackmore's. The pregnancy iron supplement is cheaper than the non-pregnancy supplement for some marketing reason. The active ingrediant is iron biglycinate which I believe is also called gentle iron. Is Gentle iron a brand name?

[Graham3196 in reply to nightdancer]

Why can't we use the word cure? If you get an iron infusion and don't get RLS again because your ferritin level is maintained and then die of old age without having any more RLS weren't you cured? Johns Hopkins seems to be claiming that many people who have RLS get one or two iron infusions and don't come back because their diet and their body can maintain the ferritin level once it has been raised. Some come back because their body can't maintain the ferritin level and they get "refilled" and the doctors investigate their body looking for a cause of ;loss of too much blood such as internal bleeding or very heavy periods.

[nightdancer in reply to Graham3196]

It is a treatment. Any med or anything else we do is a treatment. Take the treatment away, and RLS will be there. Just like insulin is not a cure for Diabetes. Parkinson's meds are not a CURE for Parkinson's, etc etc. A cure is when you treat cancer, for example, and you are cancer free for 30 yrs like I am. treatments are not cures. Sorry. We do not use "cure" because there is none. That is not being negative, it is being realistic and factual.

[DicCarlson]

My RLS came out of the blue so to speak - raging - severe - I did discover (after months of searching) my Ferritin levels were low (49). By and by daily supplementation (ferrous bisglycinate) ELIMINATED the severe RLS. I don't take any iron supplements and haven't for many months. Most recent check Ferritin is over 100. So, WHY did my normal level become compromised? Was it gut related - absorption?