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

[marciab]

I was diagnosed with CFS/ME/FM or CFIDS back in 1990 and have been GFCFSFEFCF + chemical free since July 2005. I've improved quite a bit (nuero symptoms are gone) but I'm still working on my energy / muscle fatigue.

I was recently re-diagnosed with OI/NMH (orthostatic intolerance). I was too sick to understand what this was before I had resolved most of my other problems. I noticed a huge improvement immediately when I started salt loading on May 1st, 2008. I could vacuum my LR/DR/K in 15 minutes without having to lie down and rest for an hour after 5 minutes of vacuuming.

Over the last month, I've played with the salt water recipe to see what worked the best. I started out with 1/4 tsp of sea salt in 16 oz of water, but recently changed to 1/4 tsp Redmond Sea salt + 1/4 tsp celtic salt + 1/4 tsp of No Salt (potasssium). I've noticed that I don't feel weak as often as long as I keep drinking this solution throughout the day. I'm still working on the PEM (Post exertional malaise) but it's not as bad as it was prior to salt loading.

I started swimming laps for 30 minutes a day last Thursday and so far so good. Knock on wood. Typically, I'd have been couch bound by Friday afternoon ... For those not familiar with PEM (post exertion malaise), a person will be exhausted after being active from 24 - 72 hours afterwards. John Hopkins ties PEM to OI ...

I did some research on sodium and found that it is necessary for our cells to function properly. As are the other electrolytes, but enough sodium is critical ...

Salt loading is the first step in treating orthostatic intolerance / NMH / POTS or low BP.

If you google CFS NMH you'll find some articles on this ... I copied this from an article I found by John Hopkins on how to treat NMH and POTS. The link is missing now, but it was at the Pediatricnetwork.org site. This is the first step they recommend before trying any meds ...

How are NMH and POTS treated?

Treatment of these conditions is often quite challenging. Because patients have a different mix of underlying contributors to their orthostatic intolerance, therapy has to be tailored to the individual, and usually requires persistence and a willingness to try multiple methods.

The approach we use has been based on the available evidence from formal studies and from our experiences treating large numbers of individuals. We use a stepped approach. Step 1 focuses on non-pharmacologic treatments, Step 2 involves use of a single medication, and Step 3 involves rational and judicious use of more than one medication.

Step 1:

a. Avoid prolonged sitting quiet standing, warm environments, and vasodilating medications.

Where practical, avoid circumstances that commonly bring on symptoms. For example, shop at non-peak hours to avoid long lines.

Take shorter showers and baths and aim for a cooler water temperature. Avoid saunas, hot tubs, and lying on a hot beach. Avoid standing still for prolonged periods in hot environments, and on very hot days.

Flex your leg muscles and shift your weight when you are standing still.

You may also want to avoid alcohol because it causes loss of fluids and often leads to dilation of the veins, which can "steal" blood away from the central circulation. Many with NMH are quite intolerant of alcohol.

High carbohydrate meals have been shown to reduce blood vessel constriction in response to upright stress, so a lower carbohydrate intake and frequent small meals may help.

Caffeine intake (including caffeine in soft drinks) affects some people with NMH or POTS positively and some in an adverse way, so examine whether caffeine is helping you or making symptoms worse.

An important aspect of treating NMH or POTS is to review your current medications and nutritional supplements with your doctor or health care provider to ensure that these do not have the potential to make your symptoms worse.

Narcotic medications (like codeine, morphine, oxycodone) and phenothiazine anti-emetics (like Phenergan or Compazine) can lead to more blood pooling, and niacin can cause vasodilation. Many patients develop hypotension when treated with high doses of nortriptyline, amitryptiline, or similar tricyclic antidepressants; low doses of these medications often are tolerated.

b. Use postural maneuvers and pressure garments.

Certain postures and physical maneuvers can help reduce NMH and POTS symptoms when people are upright, mainly by using contraction of the leg muscles to pump blood back to the heart and by compressing the abdomen to reduce the amount of blood that pools in the intestinal circulation.

These small changes may be important, as even a small increase in blood return to the heart can help maintain an adequate blood flow to the brain. Many patients have adopted these postures without knowing why. The helpful maneuvers include:

standing with one's legs crossed

squatting

standing with one leg on a chair

bending forward from the waist (such as leaning over a shopping cart)

sitting in the knee-chest position

sitting in a low chair

leaning forward with hands on the knees when sitting.

Some of these postures are less conspicuous than others. Sitting in a low chair (such as a camping stool) is helpful because it causes the legs to be brought up toward the abdomen, and probably reduces the amount of blood pooling in the intestinal circulation.

For similar reasons, avoid sitting in a high chair with the legs dangling freely, as there is no resistance to blood pooling unless the muscles are actively contracting.

One young woman found she could sit longer without symptoms if she put her feet on a low foot rest (this probably required more leg muscle contraction than regular sitting, and may have also compressed the abdomen better). Some patients get worse if they adopt these postures, so they may not be right for everyone.

Another technique has been shown to help reduce the frequency of fainting, and involves 2 minutes of maximum contraction of the arms (gripping one hand with the other and pushing the arms away) at the start of lightheadedness.

Another time-honored recommendation is to elevate the head of the bed slightly by 10-15o, so that the head is higher than the feet, a position that appears to help the body retain fluid at night rather than lose fluid into the urine.

Several research studies have shown that if blood vessels can be compressed from the outside (using tight compression garments or military anti-shock trousers), the abnormal heart rate and BP changes of NMH or POTS can be reduced or eliminated.

Waist-high support hose can prevent some of the excessive pooling of blood in the legs (knee-high support socks help somewhat), as can garments that increase abdominal compression (these work by preventing excessive amounts of blood pooling in the intestinal circulation), such as abdominal binders and abdominal corsets.

c. Treat contributing medical conditions

Attention to other medical conditions is crucial to ensuring that the NMH or POTS treatments are as effective as they can be. In particular, preventing activation of even mild asthma and allergies has been important in keeping our patients from developing a worsening of symptoms.

In patients with asthma, we usually try to reduce reliance on albuterol and other beta-agonist inhalers, as these medications can mimic the effect of too much epinephrine, and can aggravate NMH in particular.

Endometriosis and other painful conditions may aggravate symptoms, and ovarian vein varices in women with pelvic pain are associated with fatigue and worse orthostatic intolerance.

Sinusitis, anxiety disorders, depression, and infections of any sort are examples of other conditions that need appropriate medical attention when present.

Allergies or delayed hypersensitivities to food proteins (most commonly cow's milk protein) can co-exist with orthostatic intolerance, and unless they are addressed they can obscure any improvements that might otherwise come with medications and postural changes.

Dr. Kevin Kelly has identified the following symptoms that should prompt us to think further about the possibility of a food allergy or hypersensitivity: upper abdominal pain, gastroesophageal reflux, and appetite disturbance (filling up too quickly, picky appetite), sometimes with recurrent mouth ulcers, headaches, sinusitis, and either constipation or diarrhea.

If hypersensitivity to a food protein is playing a role, substantial improvements can result from strict exclusion of offending foods.

We would emphasize that this dietary treatment is not part of the standard treatment of NMH and POTS in our clinic, and is only considered on the basis of the specific symptoms mentioned above. Given the potential dangers of unsupervised diets, be sure to discuss these issues with your doctor or health care provider.

d. Increase salt and fluid intake

NMH and POTS are most often treated with a combination of increased salt and water intake. The increased salt and water help ensure that the blood vessels are filled better, and that the heart receives an adequate amount of blood even during upright posture. We recommend at least 2 liters of fluid per day.

Our patients who drink fluids regularly throughout the day seem to do better than those who don't take this task seriously. Keep in mind that prolonged periods of sleeping (more than 12 hours) may interfere with the ability to keep up with fluid needs. We recommend drinking fluids every 2 hours throughout the day. As a result, it is important to have easy access to fluids at work or at school.

For those who have been on a low salt intake we recommend an increase in the amount of salt they add to their food. The Appendix to this document contains a list of high salt foods. For some mildly affected individuals, an increased intake of salt and fluids may be all that is needed. Most of those with more severe symptoms require one of several medications in addition to the increased salt and fluid intake. The increased salt and fluid intake should be continued regardless of which of these medications is added.

e. Physical therapy and exercise

Exercise is important in regaining the effects that fitness brings in counteracting NMH or POTS. Because exercise can make NMH or POTS symptoms worse in the period before effective treatment has been found, it must be done carefully at first.

When you and your doctor feel you are ready, begin a regular regimen of exercise, finding something that does not make you lightheaded and doing it for brief periods at first, increasing gradually.

For example, one girl who had been ill for several years began functioning better once two of the NMH medications were working for her.

She began exercising on a treadmill, but this made her lightheaded, so she switched to a reclining exercise bike. Although she started with only 2 minutes a day, she increased this in small increments up to 30 minutes 3 times a week after about three months.

Walking, water jogging (the water acts as a compressing force to counteract blood pooling in the limbs), stretching, and Tai Chi or yoga may be gentle ways to ease back into exercise. Remember to warm up slowly before, and cool down gradually after exercise. If you plan to exercise outdoors, remember that extreme heat will worsen NMH or POTS.

A group of our physical therapist colleagues in Baltimore, led by Rick Violand, PT, have helped us to identify a relatively high frequency of postural asymmetries and areas of adverse mechanical tension in the nervous system as contributors to pain, lightheadedness, and fatigue in many of our patients with orthostatic intolerance.

These postural restrictions have helped explain why some patients were finding that exercise led to substantially worse symptoms.

Among those who have the worst of these postural restrictions, several weeks of gentle manual physical therapy often prepares them to tolerate the mild aerobic exercise that would have caused a flare-up beforehand.

We think careful attention must be paid to postural asymmetries and restrictions in mobility during the physical examination, and the diagnostic expertise of a physical therapist may be essential to identifying problems.

Manual techniques that our colleagues employ include gentle neural mobilization (or neural tension work), myofascial release, and cranio-sacral therapy.

I just wanted to mention too that pelvic pain can be from vulvodynia which can be treated by lowering a person's oxalates via the low oxalate diet.

Has anyone here tried this ?

Thanks .. marcia

[ShayFL]

I add a pinch of sea salt to my drinking water. It has really helped me.

[Ursa Major]

Interesting, I just did some research on this condition, and I've had most of those symptoms all my life! I absolutely cannot stand still anywhere for very long or feel faint. I also tend to put one foot up on a chair when standing in the kitchen, and end up leaning over a shopping cart during shopping because of feeling like I am going to pass out.

And I find that when I add a quarter teaspoon of salt (I use Himalayan salt for this) to my vitamin C drink, that it really helps. Plus, I take fludrocortisone, because my blood pressure was dropping to unacceptably low levels last year, and I tested very low on aldosterone.

My heart always starts racing when I stand up, always. I am unable to exercise, too. And I am very heat intolerant and can't tolerate humidity at all, it makes me ill.

So, to answer your question, yes, I need to take extra salt as well.

[marciab]

Hi Shay,

Good to know it's helping you too. I need a lot more salt than that though. I cook all my own food so I wasn't getting anywhere near the RDA for sodium. And now that I'm sweating from hot flashes ... I really needed more.

Hi Ursula,

Good to hear from you ... Love the grandkid pics ...

I was thinking there were some over here that were diagnosed with CFS that might be going through this. The studies I found said that patients needed up to 3 grams twice a day for 8 weeks to see any long term response. I'm getting close to that, but I've had some headaches with this so I'm going at this slowly.

Did you have headaches or muscle aches with this ? I'm standing up a lot more, so I'm not sure if it's just from that or if I'm getting too much salt.

Have you added potassium in your drink ? I read that we need to keep our sodium potassium ratio at 2:3. I'm not using C, but I eat plenty of fruits ...

For anyone else reading this ... Please keep in mind that I'm just experimenting with this. My doc told me to salt load when he re-diagnosed me with OI, but didn't give me the specifics ... I've been looking at the web for this ...

Has anyone gone through the 8 week protocal ?

[Rachel--24]

Have you ever been tested for Lyme Disease or other chronic infections?

Salt is actually used by many to treat intracellular infections such as Lyme. Salt/vitamin C is a well known protocol used in treating Lyme as well as other infections (parasites, viruses, etc.)

Many people feel relief from their symptoms while taking salt. Its used as a treatment for CFS, Lyme and other conditions....the salt is believed to be most effective against parasites.

Google "salt/c protocol" and you'll find a ton of info. on how salt is used to fight infections...the vitamin C is then used to boost the immune system.

[Rachel--24]

Did you have headaches or muscle aches with this ?

Most people using salt do have some symptoms as it can cause "die-off".

Some people have ended up with kidney problems or other issues while taking large amounts of salt....so there are some risks involved and its wise to go slow. Also, never take table salt this way....it can be toxic.

[marciab]

Hi Rachel,

I'm so glad you and Ursula responded to this. I was hoping to hear from some of you who've been at this as long or longer than me. I keep telling myself I'm peeling away the onion layers. : )

I'm doing really well so I really don't think I have Lyme. I was tested and it came back negative, but I understand that my test done by Quest was probably useless ...

I do/did have elevated viral titers for at least 4 viruses though. This was called the CFS panel when I had it done. EBV was the highest at 7 times the normal range. That was my last test and was done in 2006, 9 months after beginning gluten-free diet. The first time I was tested was in the early 90's and I don't have the numbers in front of me.

So many of my symptoms are gone that I'm questioning how much of a problem these elevated viral titers actually indicate. I've had doctors say these numbers were useless, but I never understood what they meant. I'm still dealing with swollen lymph nodes from time to time though.

I'll look into the C + salt protocal once I'm finished with this one. WE KNOW HOW THIS WORKS DON'T WE ?? LOL

BTW, the salt appears to be helping my lymph nodes too. It's definitely is helping my mouth sores that I get from biting the inside of my cheeks heal more quickly.

Oh and for anyone wanting to try this, it's not a good idea to drink this before going to bed. It's keeping me up at night when I do.

[marciab]

I'd read that about the die-off, but I didn't know it could happen in the calf muscles. From what I understand, the amount of salt + water is heavily dependant on how much a person sweats. And that if you drink plenty of water with this, it should make it out of our kidneys ok. I'm at 5 - 16 oz bottles of this a day now.

Thanks for the info though. I appreciate hearing what you think of all of this ...

[Rachel--24]

I do/did have elevated viral titers for at least 4 viruses though. This was called the CFS panel when I had it done. EBV was the highest at 7 times the normal range. That was my last test and was done in 2006, 9 months after beginning gluten-free diet. The first time I was tested was in the early 90's and I don't have the numbers in front of me.

You can definately feel alot better by peeling away at those onion layers. The more stress you take off of the immune system the better you start to feel.

I would suspect some type of infection with the swollen lymph nodes. Like you said...Quest is pretty darn useless for Lyme testing. Most people with Lyme also have co-infections....EBV is one that is very common. Having multiple infections with Lyme is the norm...so having high viral titers can be an indication.

At least its something to look into if you continue to have issues down the road...or if you stop the salt and notice that the symptoms are "flaring up" again.

[marciab]

Rachel,

Are you saying that I can still have Lyme even though I don't have any nuero symptoms left ? I actually don't qualify for CFS or FM anymore now that I don't have nuero symptoms and I'm sleeping normally.

These symptoms will come back if I get any gluten whatsoever though. I'm terribly sensitive ... I can't eat foods processed in a facility that processes wheat or eat out. I'm playing with DPP-IV to see if it helps though.

I guess the only real way to know if Lyme is a problem would be to get tested. I'm not keen on taking antibiotics though. I get a yeast infection immediately.

I've dabbled with pau d'arco tea, olive tree leaf tea, clove tea and elderberry tea and raw garlic since starting this diet so maybe those helped too. I can't digest supplements so I had to do the teas.

From what I understand my nuero problems are normal for DQ2's. It's the OI / NMH that I haven't seen addressed in correlation to celiac yet ...

It's been good touching base with you all ...

Edited to add : I tried to edit the first post, but I can't ... there's no edit box now ... anyways....

I wanted to add that I'm feeling completely healthy most of the time now. BUT ... I still get fuzzy headed and weak after 20 minutes or so when I'm out running errands. When I'm home, the need to sit isn't noticed as much. And I noticed about 9 months ago that if I laid down completely flat on my back for an hour, I felt completely healthy again.

I realized when my GP re-diagnosed me with OI in May, that all along this had been my BP coming back up to normal while I was laying down. My BP drops within 2 minutes of standing up from a lying down position and continues to drop while I'm upright. This is why I think treating for OI will make such a difference.

And now that I'm not feeling as weak most of the time, I wanted to start excercising like Hopkins recommends ... I chose swimming as my excercise since laying down in the water won't affect my body's ability to maintain blood pressure.

I'm hoping this all works out ...

[Rachel--24]

Rachel,

Are you saying that I can still have Lyme even though I don't have any nuero symptoms left ? I actually don't qualify for CFS or FM anymore now that I don't have nuero symptoms and I'm sleeping normally.

You can have Lyme even with no neuro symptoms left. Alot of symptoms can improve when we take away some of the burdens. So, if you have leaky gut and you take some of the most problematic foods/substances out of your diet...you will feel much better and some symptoms will fall off.

Everything that you do peels away another layer and as you do this your immune system gains a little more strength. By avoiding chemicals you are helping your body to better deal with other factors. Eating organic foods can also help remove some of the burden.

Chronic lyme is actually multifactorial....so there are usually alot of issues to address and treating lyme itself isnt usually all it takes to recover.

So yes....you can still have Lyme as an underlying issue and all of these other things that have piled on top of it as a result of a weakened immune system and a body that is under stress. If Lyme were the underlying issue without treatment eventually things will pile up again.

But you're right...the only way to really know is to get tested. Some people choose natural treatments over antibiotics....salt/c is one of many alternative treatments. Some people use antibiotics later on when their body is more capable of handling it.

It sounds like your body responds well to some of the natural treatments so you could definately go that route if you ever tested positive for Lyme.

[Ursa Major]

The reason I originally started the salt/c treatment was, that I suspected I may have Lyme and read that is an effective treatment. And it made a difference.

As I said elsewhere, I am waiting for results of my hair analysis. I told my naturopathic doctor that despite all the things we've done I haven't gotten significantly better, and we need to get to the bottom of what stops me from getting well.

He is also willing to work with me on getting IgeneX testing done if that is what I want to do at some point. One thing at a time, though.

For a while I thought that doing the parasite cleanse didn't do any good. But now I find that since then my blood pressure has gone up. It used to be extremely low, and my aldosterone (an adrenal hormone) was very low, which causes low blood pressure, amongst other things.

So now I have gone from taking 1.5 mg of fludrocortisone to only taking 0.5 mg to keep my blood pressure normal. And before the cleanse even the 1.5 mg wouldn't get it up to normal levels!

Meaning probably that I had parasites in my adrenal glands. Another weird thing is, that I used to get sebaceous cysts (lumps on my head that would grow), that had to be surgically removed (I had that done several times, and my dad used to get huge ones, and two of my daughters get them, too).

Two of them had been growing again. But I just checked (don't know why) and they are gone! I read once that they could be like 'breeding chambers' for a type of parasite. Yuck. So, I guess with the things I am doing I am moving in the right direction.

Tomorrow is church. One reason why I dread church is, that in our church everybody stands when singing the hymns/songs. But when I have to stand still for more than a couple of minutes, I start to feel worse and worse. I'll sweat, and start feeling faint and my back will start aching dreadfully........ and I feel awfully self-conscious when I have to sit down because I feel I am going to pass out.

I usually look well (or at least people think I do because I always have rosy skin). There are people who are not well, and everybody knows it, and they keep standing. Which makes me even more self-conscious about sitting down.

I do bring a water bottle and drink water all through the service, which helps some. It doesn't help that I get claustrophobic in crowds, and don't like being with lots of people to begin with. Being and having to interact with too many people drains my energy.

[ShayFL]

Another weird thing is, that I used to get sebaceous cysts (lumps on my head that would grow), that had to be surgically removed (I had that done several times, and my dad used to get huge ones, and two of my daughters get them, too).

Two of them had been growing again. But I just checked (don't know why) and they are gone! I read once that they could be like 'breeding chambers' for a type of parasite. Yuck.

I have these. I have been getting them since highschool. I have had 4 removed. And right now, I have 5 of them on my head. 2 are big and time to remove. I have done parasite cleanses a few times. I never saw anything in the toilet. No die-off. And didnt change my symptoms at all. And I still have the cysts.

Wonder if something else you are doing got rid of them.........

[Di-gfree]

omgosh, I've had sebaceous lumps removed from my scalp, too. Well, one; but it came back again, so I had it removed again. Parasites? I have a question about the salt. I just got some sea salt, and started it, but then I read it's not good for someone with Hashimoto's to eat sea salt. I guess it must be ok since I know a couple of you have Hashimoto's?

[ShayFL]

Hashis shouldnt have too much iodine. But sea salt doesnt have that much. Iodized salt is too high to use exclusively.

[Di-gfree]

Thanks, Shay. I was confused about that.

[marciab]

I've never had these cysts on my scalp, but I have one on my knee which has been there since I was a kid. It's not a problem though. It doesn't fill up anymore. TMI ..

While the salt water is helping, I'm playing with glucose and licorice root / or chocolate (supports / bumps adrenals) to see if this will keep me from getting fuzzy headed or weak when I'm out running errands right now.

I realize that if the salt loading is going to cure my OI by increasing my blood volume, it's going to take time (at least 8 weeks) and I'd like to feel ok while I'm out running errands aka up for more than 20 minutes.

I believe my fuzzy head is due to loss of oxygen and glucose from low blood volume. It's practically a given seeing as how laying down for an hour makes me feel great again. I just can't do this while out running errands, but I have looked for a way to do this ... I tested quite a few beds when I was at the store ... : )

I'm now experimenting with sitting with my feet up to see if that will help. It certainly changes the way our bodies circulate our blood so it should. I'm just not sure it will be enough. I've always needed to lay down so that the blood would get back in my brain. I just never felt completely healthy before.

I'm using OJ / glucose because we absorb glucose much faster in liquid form. This appears to be helping, but

I haven't been out in the last few days to see if this is working everytime ...

I've seen where our brains send out chemicals to our blood vessels to tell them that we are now standing and so they have to increase our blood pressure and that mine's not doing that. Anyone with OI has this problem. That's why I'm experimenting with the licorice root and the dark chocolate / caffeine. I think, but I'm not sure that these stimulate the brain to do the same thing ... I have to research this part further.

And it's a little confusing going from being housebound or feeling like crap when I'm out to being out and feeling good. My enthusiasm gets the best of me at times. I grinned the whole time I was out for months after I was able to give up using a motorized cart. : ) I'm going through similar emotions now. I'll notice that I'm still thinking clearly and get that satisfied grin on my face. I'm sure anyone watching must wonder why I'm all the sudden grinning like that.

Ursula,

You may want to try increasing the amount of salt in your water (1/2 tsp in 16 oz of water) when you're at church. That appears to be helping too. Or try a little OJ ... like 1/2 cup ...

I was hoping someone who'd done this would chime in and tell us what they found. In the studies I read it did state that it took at least 8 weeks though ... I just didn't see anything in those studies about people who had their diets under control first. Since so many of us have had our bodily functions become functional again, I wasn't sure if this was one of them that going to come around too.

Marcia

[Ursa Major]

Ursula,

You may want to try increasing the amount of salt in your water (1/2 tsp in 16 oz of water) when you're at church. That appears to be helping too. Or try a little OJ ... like 1/2 cup ...

I can't drink orange juice, because I am intolerant to all juices, due to high salicylate content.

I am taking fludrocortisone, which is supposed to increase blood volume (and blood pressure as a result). I was feeling better when taking more, but can't go around with a blood pressure of 165 over 110, obviously. With taking only 0.5 mg now, my bp is at around 124 over 80, which is acceptable.

It seems that everybody in my family keeps telling me that I am getting too much salt! I can't get it into their poor brainwashed (by the media) heads that it is table salt that is bad, not the salt I am using!

And my husband will NEVER get it that lots of meat and fat is NOT making me fat, but that my metabolism is out of whack. He still claims I must be eating too much. And every time he sees me putting salt into a drink, he tells me that I am getting too much salt (sigh). He is not a logical thinker, and the evidence I present to him to prove my point goes straight over his head. And of course, he won't read the scientific books I read that present the evidence, because he can't understand them (that is something else that bugs him, that I am smarter than him........ and he makes sure to try to prove that I don't know what I am talking about).

[Ursa Major]

I have these. I have been getting them since highschool. I have had 4 removed. And right now, I have 5 of them on my head. 2 are big and time to remove. I have done parasite cleanses a few times. I never saw anything in the toilet. No die-off. And didnt change my symptoms at all. And I still have the cysts.

Wonder if something else you are doing got rid of them.........

A lot of parasite cleanses aren't that effective. I did one from Open Original Shared Link. Already on the third day a large roundworm came out, and after that a million small ones and one larger 'thing' that looked like an octopus (very weird and gross looking).

I had been tested for parasites by my regular md, and they claimed I was fine. Right, their tests are no good, that's all.

Another thing about the humaworm cleanse is, that it is very affordable and addresses all different parasites, large and small, includes herbs to soothe the gut and fix the bacterial balance.

[marciab]

Ursula,

Sorry to hear that your husband isn't being supportive. I'm divorced because of this DD. Well, who am I kidding ? He wasn't much of a husband to begin with. He flipped out when I got sick.

I was just suggesting juice but any kind of liquid with sugar in it might help. Water with honey or molasses should work, etc. Diabetics use those glucose tablets, but they have "crap" in them that I don't handle well. Dyes and citric acid. And we know that liquids get absorbed quicker.

I'm not exactly sure what's helping me while I'm out at this point. I noticed the other day that when I drank the saltier water, sipped on 16 oz of OJ over a few hours and ate a whole Hershey's dark bar I felt great the rest of the day ... I'd never done this but I was out of town shopping with a friend and was desperate for energy. Since then I've experimented with a little extra salt, a little OJ and a little chocolate, but didn't get the energy I needed until I loaded up on all three. I have to eat a meal every 2 - 3 hours too though. My GTT may be normal, but my body still wants the food.

I've been using cloves and other herbs to eliminate any worms or parasites, but I've never seen anything. I'm not good with supplements, so I stick to whole fresh herbs and spices for cleansing. Salt is helping me detox too. I'm actually dripping sweat nowadays. I'll look at Humaworm sometime though. I can probably come up with something on my own.

I'm not sure which fats you're talking about. I'm thin and notice that I get fat in my middle if I eat avocados or bacon. Bacon dressing puts weight on me the fastest. I'm Paleo/low oxalate so I don't get much fat from other sources. Nuts are out of the question now. I know we need some healthy fats, but I'm not sure it's the same for everyone.

You just have to keep doing what's right for you. Listen to your body. IMHO, Sometimes this means not listening to your doctor. They only know what they learned in school. They can't feel what you're feeling and only have a few minutes to diagnose you and move onto the next patient. You're the only one who can watch for your symptoms / reactions. My family used to look at me funny, but now that I'm doing better they've stopped questioning me.

T C ... Marcia

[ShayFL]

I checked the humaworm. Of course EVERY parasite cleanse manufacturer says theirs is the best. That humaworm just has way to many things in it that I am sensitive to (legumes and nightshades). Not to mention senna nearly kills me. Explosive D for days and severe abdominal cramping. Worse than labor. Way worse. I will never ingest that stuff again.

Everyone that uses humaworm claims to see the same exact critters. I wonder if they dont "plant" freezdried critters into those pills so people find them in their poop. Then they become believers and then preach to others and then they sell more product.

I am 1/2 tempted to buy it and pour all of the caps into a bowl of water and let it sit for 24 hours and see what "comes up".......

[Di-gfree]

I realize that if the salt loading is going to cure my OI by increasing my blood volume, it's going to take time (at least 8 weeks) and I'd like to feel ok while I'm out running errands aka up for more than 20 minutes.

So many questions... so, does this mean that if you increase your blood volume by drinking sea salt, will that be beneficial to someone with anemia (low rbc count & low ferritin), as well?

[marciab]

No, you have to get your iron and B vitamins from somewhere else. This protocal will only increase blood volume and your sodium levels. I don't know why you can't do both at the same time though.

Here's a link that shows what sodium does for our bodies. Notice the RDA is 2400-3000 mg a day. Since I've been making my own food for almost 3 years, I never got that much.

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From what I understand we need the potassium in here too. I get plenty from my foods so I wasn't too worried about that part at first, but then I read that it helps our bodies produce blood cells. (I'll have to look for that article again.) If you google foods potassium you'll see a list of foods that contain potassium.

Here's a study that showed 50% of the subjects with CFS and a positive tilt table test responded to salt loading. It goes onto explain why the other 50% didn't too.

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After sodium chloride therapy for 8 weeks, tilt-table testing was repeated on the 22 patients with an abnormal response at baseline. Of these 22 patients, 10 redeveloped orthostatic hypotension, while 11 did not show an abnormal response to the test and reported an improvement of CFS symptoms.

[Rachel--24]

Everyone that uses humaworm claims to see the same exact critters. I wonder if they dont "plant" freezdried critters into those pills so people find them in their poop. Then they become believers and then preach to others and then they sell more product.

Not really....lots of people here (and on other message boards) have tried Humaworm and they dont see the same critters. Also, some people dont see anything while taking Humaworm....so I highly doubt that anything is planted in the pills.

There's a Humaworm thread on this board...you can do a search for it but the people using it had different results.

Also, the Humaworm can be customized....they can take out ingredients which you might have problems with.

I havent tried it myself...like Ursa, I dont do well with herbs because I'm sensitive to salicylates/phenols.

[Ursa Major]

I checked the humaworm. Of course EVERY parasite cleanse manufacturer says theirs is the best. That humaworm just has way to many things in it that I am sensitive to (legumes and nightshades). Not to mention senna nearly kills me. Explosive D for days and severe abdominal cramping. Worse than labor. Way worse. I will never ingest that stuff again.

Everyone that uses humaworm claims to see the same exact critters. I wonder if they dont "plant" freezdried critters into those pills so people find them in their poop. Then they become believers and then preach to others and then they sell more product.

I am 1/2 tempted to buy it and pour all of the caps into a bowl of water and let it sit for 24 hours and see what "comes up".......

Humaworm will leave out things you ask not to put in. Next time I will ask them to leave out the ginger, peppermint and cayenne, as cayenne is a nightshade (plus high in salicylates) and the other two make me sick, too. Especially peppermint is extremely high in salicylates and made me ill.

You could ask them to leave out the senna, cayenne and whatever else makes you ill.

The reason why people see all the same critters is, that those are very widespread. From everything I've read, on a lot of different sites and several books, almost 100% of the North American population has parasites. And the most common ones are roundworms, hookworms and flatworms. And actually, Carla had a huge flatworm coming out, and I never did myself.

I doubt that they could freeze dry that enormously long, coiled up in a ball mixed with excrement roundworm I expelled. My naturopathic doctor looked at the formula they used, and said it is better than what he had been using, and he was going to switch to Humaworm.