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marciab

Treating Oi/nmh Associated With Cfs/me/fm Or Cfids

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I did find the thread on Humaworm and read the whole thing. Thank you.

For me, they would have to leave out: cayenne, ginger, fennugreek, licorice, senna, psyllium and cascara sagrada.

I do not do well with laxatives at all.

So would it be as effective without all of these I wonder?

I will think about it.

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Um, excuse me, but if you want a thread on humaworm or parasite or lyme treatments or anything other than treating OI/NMH/POTS could you please start one ????

I was really hoping to get some feedback on what I'm going through with the sodium treatments ... And I'm sure anyone who comes here to read this is looking for the same thing.

Thanks .. Marcia

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Um, excuse me, but if you want a thread on humaworm or parasite or lyme treatments or anything other than treating OI/NMH/POTS could you please start one ????

I was really hoping to get some feedback on what I'm going through with the sodium treatments ... And I'm sure anyone who comes here to read this is looking for the same thing.

Thanks .. Marcia

Sorry about that, Marcia. But the problem is, that so many of our health problems are linked that it is hard to talk about one and not the other.

I found that fludrocortisone will also help with blood volume. I am taking that as well as using the salt. And it is all linked to the adrenal glands, which got helped by the parasite cleanse.......... The whole body gets effected by whatever we do.

And who is to say that at least in my case the cause of all this isn't Lyme disease? Or that OI/NMH/POTS isn't actually a symptom of Lyme disease to begin with?

I am not sure how many people are aware of the sodium treatments. Actually, I found out about those from Carla through a thread she posted on Lyme disease treatments. And since they help me to some extent...... and here I would go again going off the topic you want us to stay on.

Threads evolve, and don't necessarily always stay on the desired track. And if that is expected and enforced, usually they die after a couple of days.

Meaning that I am more than likely done with this thread, as I have said all I have to say on the sodium treatment alone.

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Sorry about that, Marcia. But the problem is, that so many of our health problems are linked that it is hard to talk about one and not the other.

I found that fludrocortisone will also help with blood volume. I am taking that as well as using the salt. And it is all linked to the adrenal glands, which got helped by the parasite cleanse.......... The whole body gets effected by whatever we do.

And who is to say that at least in my case the cause of all this isn't Lyme disease? Or that OI/NMH/POTS isn't actually a symptom of Lyme disease to begin with?

I am not sure how many people are aware of the sodium treatments. Actually, I found out about those from Carla through a thread she posted on Lyme disease treatments. And since they help me to some extent...... and here I would go again going off the topic you want us to stay on.

Threads evolve, and don't necessarily always stay on the desired track. And if that is expected and enforced, usually they die after a couple of days.

Meaning that I am more than likely done with this thread, as I have said all I have to say on the sodium treatment alone.

Ursula,

I've enjoyed chatting with all of you, but this thread has too many posts about things other than OI/NMH/POTS, so I wanted to try to reel it back in. Besides if someone is coming here looking for info on Humaworm or parasites they'll never think to look here. : )

I've found that I have to take on learning about one protocal at a time. I'm doing 4 - 5 protocals at this point, but while I'm learning the ins and outs of one I have to stay focused. Staying focused is not my strong point.

There are medical sites on the web that explain how OI happens down to the tiniest chemical involved, but I'm not interested in getting down to that level either. I'd be too old to execute the protocal if I waited until I understood it all. I just want to know what works and how to go about it.

Whether it was celiac or my viruses or even Lyme that caused me to get OI doesn't matter to me at this point. I'm hoping that the immune system will keep those in check if I can get it working. My body will always harbor traces of any virus I've ever had, but it's up to my immune system to keep them in check.

And the salt loading protocal isn't as easy as it sounds. It turns out that I was taking too much potassium which was causing my heart to race ... took me 4 days to figure that one out ... so I'm off the No Salt now.

I'm good with threads dying after their needs have been met. But I'm just a very logical methodical person. Just like it would be far to confusing if I started talking about gluten-free then CF then Paleo and then low oxalate diet all in the same thread. People would leave thinking they had nothing left to eat. : )

Since you have OI, you may want to look into it further. I've been swimming laps every day now for 5 days and feeling great before, during and after ... I would've been sick with PEM before this. Of course, I don't know if this will last, but this is how the protocal is supposed to work according to John Hopkins.

I was thinking that more celiacs must have this. And maybe someone here had been through this and maybe someone here could benefit from this. This could explain why some of us are still tired after eliminating gluten, etc. It's certainly working for me at this point.

I'm not familiar with the med your on. I vaguely remember that there are some meds that prescribed for us, but aren't recommended by Dr. Cheney. If you google Cheney NMH you'd probably find that article though.

Again, good chatting with you ... Marcia

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Here are some articles that talk about fludrocortisone helping.

Postural orthostatic tachycardia syndrome

The first line of treatment for POTS is usually fludrocortisone, or Florinef, a corticosteroid used to increase sodium retention and thus increase blood volume and blood pressure. An increase in sodium and water intake must coincide with fludrocortisone therapy for effective treatment. Dietary increases in sodium and sodium supplements are often used. Gatorade is also effective in providing both sodium and fluid.

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

http://www.springerlink.com/content/588uu4848163mtg3/

http://www.mongabay.com/health/medications...ocortisone.html

http://www.ncbi.nlm.nih.gov/pubmed/11198485

http://www.willows-journal.com/articles/po...mptoms_one.html

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Thanks Ursula,

Now that most of my symptoms are gone just by changing my diet, I'm not interested in taking medications. If the salt loading / excercise protocal stops short of correcting my OI, then sure I'll try it, but not until I've looked at a more natural approach. As in dietary changes or whatever excercises JH has found that helps OI.

Also, I read in the JH article and on other medical sites that OI can be from food allergies. And I still have to look at which foods can influence our blood vessels. I've seen garlic and alcohol mentioned so far.

You said previously that this med wasn't working for you. You can't stand up at church ... Did you try the salt loading protocal for 8 weeks first ? Have you looked at the low oxalate diet ? Oxalates can interfere with mitochondria. OR have you tried the Paleo diet for regulating blood glucose levels ? Both of these improve our body's ability to function properly.

Take Care ... Marcia

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Thanks Ursula,

You said previously that this med wasn't working for you. You can't stand up at church ... Did you try the salt loading protocal for 8 weeks first ? Have you looked at the low oxalate diet ? Oxalates can interfere with mitochondria. OR have you tried the Paleo diet for regulating blood glucose levels ? Both of these improve our body's ability to function properly.

Marcia, my blood pressure was 85 over 55 before I started fludrocortisone. The reason was, that my aldosterone level was at a dangerously low level. Within two weeks of taking the fludrocortisone (on top of salt loading, which I had done for a couple of months before that) my bp was normal (still on the low side, but acceptable) and my energy went from completely incapacitated to being able to enjoy my summer in Germany last year.

So, it IS working for me. It just isn't fixing the OI. Without the fludrocortisone I completely crash by the afternoon.

I am on a low oxalate diet, that is very close to a paleo diet, too. I rarely eat any starches, rarely fruit (and then only a peeled pear or a golden delicious apple).

Most of the time I only eat meat and vegetables.

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This article does a good job of explaining all of this ...

http://home.vicnet.net.au/~mecfs/general/whiting.html

5. Blood Pressure

We now know that severe low blood pressure problems can occur with CFS. Alternatively, blood pressure may be maintained at the expense of a reduced blood supply to many organs, including perhaps even to the brain.

In the latter instance, the problem is not always clinically very obvious, and one then has to resort to a Tilt Table Test in order to maximally challenge the blood pressure maintenance system.

What this does is to make overt any hidden functional anomalies within the blood pressure control system. Tilt table test which prevents normal skeletal muscle contractions from compensating for falls in blood pressure that might occur as a consequence of defects in the autonomic nervous system usually provides a rapid and ready diagnosis of low blood pressure tendencies in CFS.

By putting patients on a tilt table, this muscle contraction compensatory mechanism is prevented. We can thus assess the integrity and control of the cardiovascular system and its ability to maintain blood pressure in a more accurate and vigorous manner.

A fall in blood pressure will result in diminished oxygen and glucose supply to the brain and thus will result in increased adenosine levels which may be a trigger for sugar cravings in some CFS patients, and encourage them to consider hypoglycaemia as the cause of their symptoms. It is interesting however, that a fall in blood pressure may result not only in symptoms of dizziness and faintness, but also headaches and nausea as well as sweating, and a rapid heart rate.

Another way that the body tries to maintain blood pressure is to constrict certain blood vessels, and thus limit the flow of blood to organs that are less essential, at least in immediate terms. These organs include the skin and the gut, for example.

This might explain why absorption of many important nutrients is less effective than normal in many CFS sufferers, and why certain digestion-demanding meals tend to make some CFS sufferers so unwell. It also would explain why the hands and feet are so cold in many CFS sufferers.

The shut down of one's peripheral blood supply means that in the upper levels of the body, namely from the face, the scalp and the neck, which in turn, may well be the mechanism and the cause for flushing in many CFS sufferers.

Red facial flushing is generally seen in those patients who exert themselves very acutely, and who have to lose body heat quickly. On the other hand, patients who prefer to pace themselves and therefore do not need to lose heat rapidly, instead become increasingly pale in the course of their activities.

In other words, even blood flow to the face becomes compromised. Sometimes, when a patient is both pale and flushed simultaneously what often is seen are pink cheeks on a background of pallor, which gives a strawberries and cream sort of appearance to the face.

The head and neck are the chief heat-losing skin regions of a normal person. As blood pressure maintenance is of more importance than facial and neck skin temperature, the body's homeostatic mechanisms opt to control blood pressure at the expense of temperature maintenance and facial comfort.

This problem with low blood pressure has probably little to do with the heart itself and has more to do with the nervous system control of heart rate and the calibre of blood vessels in the peripheries.

This nervous control may have broken down as a consequence of mycoplasma infection or staphylococci infection, or even both. It may even have something to do with too much adenosine, which can also dilate blood vessels, and undermine blood pressure control.

Disopyramadine seems to be extremely effective in preventing blood pressure falls, and may assist in maintaining blood pressure in the upright position in many CFS cases. Thus, one's stamina for upright activity may be increased by this measure, as well as by other measures such as low doses of betablockers, fludrocortisone, and even caffeine, that also can maintain blood pressure in such a clinical setting.

This in turn will prevent the need for the body to compensate by every means possible to control blood pressure, which in turn may help conserve other body resources, such as tyrosine in particular. Tyrosine is the substance from which the body manufactures adrenaline and noradrenaline, as well as dopamine, all of which contribute in various ways to blood homeostasis. Low serum tyrosine levels may occur in CFS for this reason, although other plausible defects in metabolism may also contribute to this finding in CFS.

The increased turnover of adenosine in CFS patients is likely to result in increased adenosine breakdown into uric acid. It is for this reason that I am presently evaluating the 24 hour urinary output of uric acid in my patients.

When ATP is broken down to adenosine, there is also a release of three phosphate groups into the system. It is interesting during relapses that many patients show an elevation in their whole blood phosphate levels, compared to times when they are feeling much better. Thus, whole blood phosphate levels should turn out to be a good index for excessive adenosine output, and thus provide a clue to the basis for the fatigue subtype of individuals.

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Marcia, my blood pressure was 85 over 55 before I started fludrocortisone. The reason was, that my aldosterone level was at a dangerously low level. Within two weeks of taking the fludrocortisone (on top of salt loading, which I had done for a couple of months before that) my bp was normal (still on the low side, but acceptable) and my energy went from completely incapacitated to being able to enjoy my summer in Germany last year.

So, it IS working for me. It just isn't fixing the OI. Without the fludrocortisone I completely crash by the afternoon.

I am on a low oxalate diet, that is very close to a paleo diet, too. I rarely eat any starches, rarely fruit (and then only a peeled pear or a golden delicious apple).

Most of the time I only eat meat and vegetables.

That's interesting. Mine was 78/58 the last time I had it taken at my docs. When I commented to the nurse that my BP was incredibly low, she just told me that it was ? /62 last month and that I run low. So apparently to my doc, this wasn't a big deal. I haven't seen it that low in a month now ...

It's good to know it's working somewhat for you. I'm sure you'll be glad when you can stand up in church without worrying about it though. : ) I'm still wiped out by the afternoon, but when I started all of this I was wiped out all day long. I could only stand for 20 minutes at a time wthout getting fuzzy headed and I was having to lie down for an hour throughout the day in order to get my BP up.

Sounds like you've taken into consideration the low oxalate and Paleo approach. I'm not sure why you're avoiding other fruits though. I try to eat the dark ones (plums, red grapes, cherries) for the antioxidants. Berries are high oxalate so those are out.

How about looking for foods that can cause OI ? Not that you or I want to give up any more foods ... LOL

Also, have you looked at the research that states there are toxins being produced when we force our bodies to function while we have OI ? I'm over my head in this area of research at this point, so I'm hoping the extra salt will help with the detox ...

I've looking into malabsorption of sodium / electrolytes too. I was thinking since my villi / intestines are damaged, I can't absorb these from my foods as well as I should either. And that's why the salt water and OJ work so well for me. Here's what I've found so far. Go down to 2.3 to see how carbs / glucose are absorbed.

http://www.organela.com/?page_id=23

Take care .. marcia

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I don't eat fruits other than peeled pears and golden delicious apples, because those are the only two fruits low enough in salicylates to be safe for me. Berries especially will make me ache by the next day. If I eat one regular orange today, I will need painkillers for the awful muscle pain tomorrow.

Normally salicylates are good for people. Organic fruits and vegetables have 60% more salicylates than non-organic ones, making them much higher in antioxidants. And it is true, the darker fruits are higher in them. Which is precisely why I need to stay away from them.

It is not true that we need to eat ANY carbs at all for brain function. Our bodies convert protein from meat into the glucose the brain needs. Otherwise, how would the Inuit have survived before white men came and poisoned them with white flour and sugar? All they ate was meat and fish before that.

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I don't eat fruits other than peeled pears and golden delicious apples, because those are the only two fruits low enough in salicylates to be safe for me. Berries especially will make me ache by the next day. If I eat one regular orange today, I will need painkillers for the awful muscle pain tomorrow.

Normally salicylates are good for people. Organic fruits and vegetables have 60% more salicylates than non-organic ones, making them much higher in antioxidants. And it is true, the darker fruits are higher in them. Which is precisely why I need to stay away from them.

It is not true that we need to eat ANY carbs at all for brain function. Our bodies convert protein from meat into the glucose the brain needs. Otherwise, how would the Inuit have survived before white men came and poisoned them with white flour and sugar? All they ate was meat and fish before that.

Ursula,

Have you tried re-introducing these foods into your diet a little at time ? And back off if you have a reaction to a small amount ? I did this with cantaloupe, walnuts, eggs, etc ... I'm still working on tomatoes, but can handle them raw. This is what my GP told me to do when I first went on this diet.

I realize that some say you should overload on a food to see if you are intolerant to it, but there are other studies that show if you add a little back in a time, your body will start to develop the enzymes it needs to handle it. I was good with the latter approach.

I believe we need carbs if we aren't Inuits and weren't raised by Inuits and were not on the Inuit diet all of our lives. My body and most people's are dependent on carbs for glucose. Our bodies lose the ability to perform glycogenisis. We can possibly be retrained (The Paleo / caveman diet was shown to help with this), but it takes time if it's going to happen. I tried the MAD (modified Atkins diet) for 3 weeks, but my glucose levels stayed too low for me to continue it. Within minutes of eating some fruit I felt better. I haven't stopped using fruit this way since I discovered that. Besides fruits have so many nutrients in them ...

I wanted to come here and report that I had to back off using so much salt too. I suppose it was time. I'm down to 1/4 tsp in 16 oz of water 5 times a day. I was having trouble sleeping and wasn't sure if it was the potassium or the additional salt. After 1 day of 0 potassium, I realized that 1/2 tsp of salt was making me feel revved up which was good during the day if I wanted to get anything done, but not good at night.

Just so you know, I'm experimenting with what my body needs to function and everyone will be different. It's a matter of listening to your body. You may need more or less salt or potassium or water than I do.

HTH .. Marcia

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So... I started using my sea salt again, after reading this thread, but lo and behold I noticed the container said 'iodized'. This is not what we want, right? Should I look for uniodized sea salt? - is that the grey salt? Any recommendations on what I'm looking for? Thank you.

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So... I started using my sea salt again, after reading this thread, but lo and behold I noticed the container said 'iodized'. This is not what we want, right? Should I look for uniodized sea salt? - is that the grey salt? Any recommendations on what I'm looking for? Thank you.

I know we need iodine too, but I never specifically looked into how much ... You may want to google "foods iodine" to make sure you are getting enough in your diet.

Here's what I researched and am using.

Redmond's Real Salt gourmet natual sea salt - it has iodine too ...

Celtic Sea Saltby Nature's original seasonings ... I don't see Iodine listed on the pkg.

I actually prefer the taste of the Redmonds ...

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I wanted to bump this and update it ... I'm still using Himalayan, celtic and Redmond's salt. I really can't say that I've noticed any further improvement in this. I did notice on occassion that if I feel weak, a shot of salt will bring me back to life but so will eating. And I still have to eat every 2 -3 hours.

I'm still struggling with chronic hypoglycemia too. I tested low on chromium so I started supplementing with that about 2 months ago .. There's a chance this will help my OI since our bodies need chromium to utilize glucose.

I wanted to apologize too if I sounded short in some of my posts here ... I get into "research mode" and forget everything else ... <_<

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How much salt are you having a day ? What is your BP now ? Sorry - have only read quickly all the pages but I am wondering if you have been tested for Addisons Disease ? Have you had your electrolytes tested ?The blood test for Addisons Antibodies ? The ACTH Stim Test ? There is one type of Addisons that is autoimmune and can therefore be linked to Coeliac - so its not unusual to see people with AD symptoms popping up here first. Most Drs never see AD and do not recognise the early symptoms.

Addison

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