New to list; not to wed

[jul2873]

Hi Charla,

This is just a sympathy post, as I am also a 70 year old woman struggling with both severe WED and back problems. The difference is that I have been lucky enough never to have needed to start with all of the prescriptions. Currently I manage my back pain with exercise, visits to a chiropractor, and Advil. I manage the WED with a non-prescription mild opioid called Kratom, that I order from the internet. I've also gone gluten and dairy free the last month to see if that helps as well.

The issue with Kratom is that there is no quality control on it. Essentially, it's a powdered leaf from Borneo, Thailand, etc. But, since I'm 70, I'm not worry about long-term effects from it. I just want to be as comfortable and functional as I can be now. And Kratom helps that.

I wish you all the best. It sounds like your case is much, much more complicated than mine. As I said, this is just a sympathy post, wishing you the best.

Mary

[figflower]

Alcharla, if you're still out there I wanted to try to answer your question about antibiotics. First of all, you are not alone. Many people report complete remission of RLS symptoms while on antibiotics. While others report a worsening of symptoms. Same for a fever. Isn't it amazing? You were in the hospital, no drugs whatsoever except for antibiotics and you were symptom free. No withdrawal either!!! And it can't be placebo because it's not like someone told you the antibiotics would help your RLS. There's a theory among researchers and holistic practitioners that our gut microflora is at the bottom of all this RLS nonsense. At the bottom of a lot of diseases for that matter. Antibiotics and fever alter our gut microflora, albeit temporarily, and RLS .

[Yankiwi]

There's a theory among researchers and holistic practitioners that our gut microflora is at the bottom of all this RLS nonsense.

How could our gut flora possibly cause RLS when it is proven to be hereditary in so many of us? My siblings and I have distinctly different diets, live in different countries, drink different water etc and still share our RLS, inherited from my father and one of his parents as lots of cousins have it too. I guess that's why I don't put any faith in "holistic" practitioners. Physicians and scientists have screwed up with dopamine agonists but I still have faith in medicine and science.

[figflower]

I believe at most there is a genetic predisposition to RLS but that's as far as our genes go. I'm the only lucky one in my family to have RLS and same with my husband. We both have mild intermittent RLS since childhood. Even if every single person in my family has RLS that would never be the end of the story for me. I am open to everything for everything. If u don't think its the gut flora then what is it about antibiotics that put people into remission? Some people get weeks and weeks of relief.

Never underestimate the gut microbiome. They number 100 trillion cells in you. But there are only10 trillion human cells to the human body. They rule the roost. I have been reading about it for the past 20 years and there is a new article every single day on the topic. They can influence our cravings, our weight, our mood and our heart health. I am waiting with bated breath for the results of a project wherein fecal transplants were given to autistic children. I believe the project started due in large part to a father/doctor who noticed a dramatic improvement in his autistic son's behavior while on antibiotics. He knew that antibiotics aren't the answer to autism but a clue. He put his son on very specific probiotics and has been able to sustain some of the improvement. So the same I believe is true with RLS. If antibiotics improve symptoms then that is a clue to something meaningful and profound to understanding the pathology of RLS.

Don't you just hate it when you hear people go on some strong prescription med and get relief and then basically just sit on their hands and pray it continues to work rather than actively looking for answers and trying new things. When you finally have relief is when u should really go to town and try everything out there. The med is always there for u so what the heck throw caution to the wind. I'm gonna be the first one in line when they offer fecal transplants for Ibs or RLS

[Polar Bear]

Don't you just hate it when you hear people go on some strong prescription med and get relief and then basically just sit on their hands and pray it continues to work rather than actively looking for answers and trying new things.

In my own opinion, and not speaking as a Moderator, I don't agree with this as a general statement.
Sufferers are from all walks of life with different attitudes, perceptions and health issues - both physical and emotional.
Not all sufferers are coping with only RLS/WED (as if this isn't torture enough), they may also have various other seriously debilitating illnesses/diseases/conditions, feel at the end of their rope literally, and not know where to turn. Just facing the day may be as much as is possible regardless of actively looking for answers and trying new things.
A Sufferer may not have had benefit of good medical advice and is doing as their doctor has instructed, believing that a Medical Practitioner is a 'God' who knows all.
And indeed many sufferers may not have (for whatever reason) the ability to resource information on their own behalf.

However, I do agree that where possible, we as sufferers should gain as much knowledge as possible and not be afraid to speak up regarding our treatment or lack thereof.

[ViewsAskew]

Don't you just hate it when you hear people go on some strong prescription med and get relief and then basically just sit on their hands and pray it continues to work rather than actively looking for answers and trying new things.

In my own opinion, and not speaking as a Moderator, I don't agree with this as a general statement.
Sufferers are from all walks of life with different attitudes, perceptions and health issues - both physical and emotional.
Not all sufferers are coping with only RLS/WED (as if this isn't torture enough), they may also have various other seriously debilitating illnesses/diseases/conditions, feel at the end of their rope literally, and not know where to turn. Just facing the day may be as much as is possible regardless of actively looking for answers and trying new things.
A Sufferer may not have had benefit of good medical advice and is doing as their doctor has instructed, believing that a Medical Practitioner is a 'God' who knows all.
And indeed many sufferers may not have (for whatever reason) the ability to resource information on their own behalf.

However, I do agree that where possible, we as sufferers should gain as much knowledge as possible and not be afraid to speak up regarding our treatment or lack thereof.

Agreed - both personally and as a moderator. This board supports everyone in a way that works for them. We all see the world differently, our personalities are different, our needs are different, and so on. As supporters of the Foundation, we do approach RLS from scientific perspective, using the available research. Our goal is to get information here so people, if they find us, can use it to educate themselves so when they do have a doctor who isn't up-to-date, they can hopefully find new ways to get the support and help they need. It was here, in 2004, that I learned of augmentation, for example. I'm forever in this board's debt for helping guide me to information that helped me tremendously.

[figflower]

Yeah but what about Alcharla and the antibiotics? Doesn't your jaw just drop every time u read that???? Well mine does. Probably because I've read about the same thing happening to other people. And I guess u guys aren't interested in fecal transplants which they are also doing on Parkinson's patients with some success allegedly. While on the topic of treatments and near cures for RLS I forget to mention that in terms of iron infusions and John Hopkins dr. B mentioned that many people left the hospital and threw their meds away. And had relief for up to 18 months or maybe it was 2 years. And even though you only got weeks with the first infusion and months with the second one I believe that it might be due to the fact that u continued with the DAs and opiates. Each and every pill is a drag on your receptors so you were undoing the benefit of the infusions or rather hastened the inevitable retreat of your receptors. Not your fault whatsoever but I think this community needs to be made aware of what a huge success infusions are. Why go through withdrawal when u can go through an infusion instead? And if your doctor won't do it then figure out another way to get iron to your brain. By the way, research is going on with regard to the anti- depressant affects of iron.

[figflower]

http://www.livestrong.com/article/48456 ... pressants/

As you read this article, if you choose to do so, keep in mind, that many, if not all of us, have anemic BRIANS, even if we have very healthy stores of BODY iron.

[figflower]

Brains, not Brians. Could use more of both

[ViewsAskew]

What about the antibiotics. One person without any controls can't tell us much. At most, if it happened to hundreds, someone might study it in a controlled environment.

We have a responsibility to the members here, as moderators, to tell them what we can prove. I have no issue with sharing info you hear or see that isn't yet provable - someday it could be. But, we cannot act as if it's fact - it isn't.

I didn't object at all to most of what you said, Figflower, just the part about hating it when people do things you don't like that they do. Hate all you want, but keep it to yourself, please. We aren't all you and we don't see it from your view. Share what you like, share why you like it, but please do not say mean things to anyone.

[figflower]

It's being studied. http://mpaweb1.wustl.edu/~medschool/out ... ancing.htm

[ViewsAskew]

It's being studied. http://mpaweb1.wustl.edu/~medschool/out ... ancing.htm

Yes, I reported this a few years ago when the link was originally found related to IBS - you'll find it if you search here. And we have people here on SIBO diets - and some have been helped - but it hasn't, I do not think, eliminated anyone's symptoms 100%. And even if it did, we do not know enough about potential types of RLS/WED to know which populations it might help.

When something is still being studied, please share it as a possibility, not a sure bet. Whether we like it or not - and I do not - few things other than pharmaceuticals have solid, accurate, reliable studies - with large populations and double blinds, etc.

[badnights]

Yeah but what about Alcharla and the antibiotics? Doesn't your jaw just drop every time u read that???? Well mine does. Probably because I've read about the same thing happening to other people. And I guess u guys aren't interested in fecal transplants which they are also doing on Parkinson's patients with some success allegedly. While on the topic of treatments and near cures for RLS I forget to mention that in terms of iron infusions and John Hopkins dr. B mentioned that many people left the hospital and threw their meds away. And had relief for up to 18 months or maybe it was 2 years. And even though you only got weeks with the first infusion and months with the second one I believe that it might be due to the fact that u continued with the DAs and opiates. Each and every pill is a drag on your receptors so you were undoing the benefit of the infusions or rather hastened the inevitable retreat of your receptors. Not your fault whatsoever but I think this community needs to be made aware of what a huge success infusions are. Why go through withdrawal when u can go through an infusion instead? And if your doctor won't do it then figure out another way to get iron to your brain. By the way, research is going on with regard to the anti- depressant affects of iron.

The antibiotics that were used to fight my pneumonia 3 times in 3 months increased my WED symptoms. It was agony trying to get better while being tortured day and night. Sleep is critical to healing but I couldn't get enough.

So, as you said in an earlier post, antibiotics help some people, harm others, and have no effect on yet others; and I will add that it depends on the type of antibiotic. There are some that are not even absorbed into the body, that are used to kill off gut microbes, and I have also taken those, for SIBO. They had no effect on my WED.

I have learned that gut microbes do indeed have the potential to exert neurological change. Their metabolic byproducts enter our bloodstream, and I don't think there's a lot of argument in the medical community over that. Some symbiotic microbes actually produce antinflammaotry chemicals ... or was it chemicals that kill bad bugs... a fascinating level of influence, anyway. I did a lot of research on this sort of thing when I was diagnosed with SIBO, but it has mostly leaked out of my brain.

Re how can gut bugs be responsible for WED when it clearly is genetic - I can't explain that any better than you, i.e. a genetic pre-disposition might combine with bad bugs to set it all off, but I will add that the nature of the gut biome might be dependent on our genetic makeup too. That part of it is mainly guessing at this point.

I like the whole concept of functional medicine, as long as "medicine" is a key component of it.

I have also done a bit of research into iron infusions, as has Ann. We've talked about it here in many places already. (eg. viewtopic.php?f=4&t=8476&p=69120&hilit=dextran#p69120 and viewtopic.php?p=75583#p75583). It can always help to bring it up again, for new members and to remind old members.

Allen and Early state that about 25% of WED sufferers who get iron infusions (their kind of infusions, i.e. low molecular weight iron dextran in a 1000mg dose, repeated according to their protocol) experience no relief. Their hypothesis is that there are variants of WED, and at least one variant is not helped by infusions. Ann's medical response to infusion was not due to her continuing to take her meds; most of Allen and Early's patients continue to take their meds until the relief is great enough. I am not sure what technically you mean by "retreat" of receptors, but taking meds that bind to receptors does not, as far as I know, cause them to go anywhere.

[figflower]

Hi Badnights, the DAs down-regulate the receptors. Probably the opiates as well. Probably all drugs of addiction. We with RLS allegedly have genetically bad receptors to begin with and low levels of brain iron. Or so it's hypothesized. I haven't seen too much out there about how to up-regulate your dopamine receptors when you have RLS, but there are several fascinating sites that talk about recovering from addiction and up-regulating your receptors. Like I mentioned on here before, intermittent fasting is one of the ways these sites mention, as well as anaerobic exercise and a substance called Uridine Monophosphate. I bought it off of Amazon and tried three times at night and three times during the day. I was not suffering from RLS when I took it. All three nights that I took it I was awakened by RLS and had to take iron. And on one night I was awakened a second time around 5am and had to take the iron again. That stuff is unreal. I took an amount smaller than a tic tac. It never gave me RLS during the day, whereas if I were to take a benedryl or Tagamet it would give me daytime RLS. So here's the interesting part. Uridine Mono. is found in mother's milk but mostly in the day hours. At night there is another substance found in mother's milk which escapes me. I'm not sure why I find that interesting but I do. The addiction websites also indicate that depression will up-regulate our receptors. Anyways, the Uridine might be one of those things that you want to take in the morning, day in day out, and eventually it will provide some night time relief from RLS?

Thanks for responding. I'm not a good fit for this forum. I'm ok with drugs for a multitude of conditions, just not RLS. When I read these stories I feel like people are putting a loaded gun to their heads and my natural inclination is to shout out no, stop, don't pull that trigger. People resent that and I don't blame them. I haven't quite figured out how to delete my account but I have figured out how to stop the emails. Tech savvy I'm not.

In terms of the gut microbiome, the Mayo Clinic says it all...it's the final frontier. Be well and enjoy:

http://www.mayoclinic.org/medical-profe ... -cure-rate

[ViewsAskew]

Figflower, you're a great fit if you can figure out how to let everyone do what they feel is best for them - and that includes taking drugs. Or if you can ignore that part! Maybe hang out in the alternate therapies section and just don't read the other posts in the other sections .

We're each on our own journey - one that we create with our family, our doctor, our intuition, and whatever our worldview is. Each one is unique. I am very pleased that you have YOUR journey and it works well for you. I hope it always does. And, if it doesn't and you change it, I hope that works, too. Even if I was as sure as you are that my way is the right way, it's only right for me.