how did you get out of "bedridden level" ??(even if you are still sick)

[Rlman]

I did experience mild hyponatremia on the standard Desmo dose. I take a very small dose, half of a 0.1mg tablet, at nighttime only.

so @jeff_w the desmo/flornief treatments helped with your OI symptoms? In another thread you said that you also did IV saline every day. That probably helped raise your BP too right?

 

[jeff_w]

so @jeff_w the desmo/flornief treatments helped with your OI symptoms? In another thread you said that you also did IV saline every day. That probably helped raise your BP too right?

I did the Desmo after I no longer needed the saline. The Desmo worked well without the saline.

 

[ellenelle]

I did experience mild hyponatremia on the standard Desmo dose. I take a very small dose, half of a 0.1mg tablet, at nighttime only.

How much do you drink now, compared to before?

 

[alice111]

I feel the same way about Dr Lerner. He's a great doc and did me a lot of good, but his treatment protocol is limited and I believe only suitable for a subset of PWME.

could you elaborate on what type of subset are you referring to?thanks!

 

[SOC]

could you elaborate on what type of subset are you referring to?thanks!

I would say the clearly viral subset -- viral onset, flu-like symptoms, muscle aches, etc. I would have less confidence in his ability to effectively treat someone with a stress or accident/injury onset, or someone with primarily OI symptoms. I'm not sure whether or not his treatment plan would be effective for someone with primarily GI symptoms.

When we last saw him (several years ago), he was doing nothing in the way of immune testing or treatments, and not much in the way of OI treatments, just the very basic stuff for the most obvious POTS. He uses no supplements and doesn't look into dietary issues, so people who feel those paths are important wouldn't be happy with Dr Lerner as their specialist.

If you think you have pathogens that need to be brought under control, and my family did, then Dr Lerner is your man. If you feel that most of your problem lies elsewhere, then he is not likely to help, imo.

Dr Lerner did wonders for my family with antiviral treatments. That was critical to the large improvements we all had. However, daughter and I eventually had to move on to a doctor with a broader treatment protocol to get better treatment for OI, immune dysfunction, neuroinflammation, and other symptoms.

 

[jeff_w]

How much do you drink now, compared to before?

I was taking 1.5 Desmopressin pills before, which gave me hyponatremia. Half of a full pill does not, and it helps me a lot.

I drink a liter of electrolytes everyday, in addition to lots of water.

 

[ellenelle]

I was taking 1.5 Desmopressin pills before, which gave me hyponatremia. Half of a full pill does not, and it helps me a lot.

I drink a liter of electrolytes everyday, in addition to lots of water.

My concern is not to drink too much, but I get the impression that with the right dose, you don't have to worry about overhydrating?

 

[jeff_w]

My concern is not to drink too much, but I get the impression that with the right dose, you don't have to worry about overhydrating?

Correct. And, finding that right dose is a very individual thing. In my case, a very low dose works well. Others will need a higher dose. Finding the right dose is a process of trial and error, and it's safest to start with a low dose and work up from there.

 

[taniaaust1]

My concern is not to drink too much, but I get the impression that with the right dose, you don't have to worry about overhydrating?

If you have something like POTS and are weeing out all your fluid, its very hard to overhydrate. I was drinking 3L per day but my body still got dehydrated and I still needed two large bags of saline IV. My blood test was showing my kidneys were in trouble and weren't working properly due to dehydration. So in my view we probably need to worry far more about being under hydrated then over hydrated.

 

[jeff_w]

If you have something like POTS and are weeing out all your fluid, its very hard to overhydrate. I was drinking 3L per day but my body still got dehydrated and I still needed two large bags of saline IV. My blood test was showing my kidneys were in trouble and weren't working properly due to dehydration. So in my view we probably need to worry far more about being under hydrated then over hydrated.

Hi Tania,

The problem is that Desmopressin prevents you from urinating. So, some people do have problems drinking too much on it. If someone is on the right dose of Desmopressin though, drinking too much isn't a problem. It's only a concern if the dose is too high.

 

[SB_1108]

Could you elaborate on this? What did you do for detox?

Nutritional Balancing uses hair analyses to determine your mineral levels in your body. It sounds like quackery but for me I found it helpful for detoxification. I think primarily people think of heavy metal toxicity as a mercury problem but in reality you can have other heavy metals that are the source of your pain. For me personally, my issue was copper. Copper can accumulate for many reasons... low zinc levels, high stress, vegetarian diet, copper plumbing, copper IUDs, copper cookware, etc.

Anyway, you basically take certain supplements to balance out your levels. So for example if you have high copper - zinc, vitamin c, molybdenum, and vitamin B are all "chelators" for copper. But some people purchase the combos recommended with the results.

Additional information about nutritional balancing and hair analyses: http://www.arltma.com

I will say that I think heavy metal toxicity is a secondary issue of CFS/ME - I believe that people develop the immune dysfunction first and the detox pathway issues second. Maybe for some people chelation would be a cure but I think its just one of the things you may have to address along your healing journey.

Here is more of my experience with copper toxicity:
http://forums.phoenixrising.me/index.php?threads/copper-toxicity.23445/#post-362421

 

[anniekim]

Propranolol and Florinef. I'm also taking Desmopressin, which indirectly helps with OI by preserving adequate blood volume.

@jeff_w are you also still having daily saline IV's for your pots symptoms. I saw you write about it on another thread from a year ago, thanks

 

[jeff_w]

@jeff_w are you also still having daily saline IV's for your pots symptoms. I saw you write about it on another thread from a year ago, thanks

Hi @anniekim,

I've improved to the point where I don't need IV saline anymore. I stopped it many months ago. It was very, very useful for me at the time, and it is for many people.

 

[nandixon]

What immune modulator did you use?

levamisole

@lansbergen, What dose and frequency of levamisole are you using?

Have you ever tried cimetidine (Tagamet) as an immunomodulator, and if so how did it compare to levamisole?

I've had progressively worsening ME/CFS for more than 17 years now. Over the past year or so I had an accelerated decline and was steadily heading toward a mostly bedridden state. But I started taking cimetidine a few weeks ago (only 50mg every 12 hours, about 1 hour after eating) and it's quickly reversed some of that more recent decline, so that I'm getting back to a more moderate level of disability (still mostly housebound).

Interestingly, I notice in the scientific literature that levamisole and cimetidine may have some synergy in certain applications when used in combination.

 

[Sushi]

But I started taking cimetidine a few weeks ago (only 50mg every 12 hours, about 1 hour after eating) and it's quickly reversed some of that more recent decline, so that I'm getting back to a more moderate level of disability (still mostly housebound).

What about your stomach acid levels and digestion, has that been a problem for you with Tagamet?

 

[nandixon]

What about your stomach acid levels and digestion, has that been a problem for you with Tagamet?

No, it's not been a problem at all. But I tend towards secreting more stomach acid than average, I'm pretty sure. And I'm trying to avoid it interfering with digestion by taking it later after eating. The dose I'm using, just 50mg (=1/4 of an OTC tablet in the USA) every 12 hours is pretty minimal, too.

(I should mention that other people may need a higher dose than me. Cimetidine, like many drugs, uses the "p-glycoprotein" transporter - which largely determines the drug's intracellular concentration, and that transporter is down-regulated in my case due to a defect in the ABCB1 gene.)

 

[lansbergen]

Interestingly, I notice in the scientific literature that levamisole and cimetidine may have some synergy in certain applications when used in combination.

I saw that too but I did not try it.

I take low dose levamisole in the evening before going to bed.

 

[Sidereal]

Some people take as much as 800 mg of cimetidine to control herpes virus reactivations.

 

[alice111]

after all your helpful advice I have decided to give florinef a try.
In an ideal world I would have a doctor very experience in florinef and M.e., but unfortunately I do not.. what I DO have as a great GP who is willing to work with me and try new things.

so with that said I have a few questions for those on or who were on florinef - @WoolPippi @jeff_w @SOC @ahimsa @lnester7

-what dose?
-how often and what time of day?
-did you supplement with salt, and or other electrolytes while on the florinef?
-did u have stomach upset? how did you deal with this?
-did you monitor with blood tests?
-side effects or pitfalls? anything I should look out for?

thanks so much everyone for all your help

 

[SOC]

-what dose?
-how often and what time of day?

Between daughter and I we have, over the years, taken 0.1mg once daily, twice daily, and three times daily. I wouldn't want to stay at 3x daily for long, but there was a period when I needed it. Twice daily has been the most effective dose most of the time for us -- once first thing in the morning and once about 2 pm. We'd prefer to spend more time at the once daily dose, but that's not effective for us a lot of the time.

-did you supplement with salt, and or other electrolytes while on the florinef?

Absolutely! At least 3 liters of water daily, 2 liters of which is electrolyte water. Florinef doesn't work well without sufficient fluid intake. Be aware that Florinef is potassium wasting, so you will almost certainly need extra potassium if you take Florinef. Some people get prescription K-Dur. If your GP is agreeable, you might want to ask about that.

-did u have stomach upset? how did you deal with this?

Nope, but we don't have GI symptoms in general, so it wasn't likely to be a problem for us

-did you monitor with blood tests?

No, we go by symptoms and BP and HR. We like to see low BP become more normal with Florinef, but not creep into the high range. We watch first morning pulse pressure (systolic-diastolic) and try to keep it around 40. Too little Florinef and it drops too low (<30). The rules of low and high are not hard and fast, but we know where we feel best and try to stay in that range of pulse pressure.

We also have less tachy with Florinef, but that's a little harder to use as a measure since a number of other things affect HR.

-side effects or pitfalls? anything I should look out for?

Low potassium would be the biggest problem, I imagine. Since it is a corticosteroid and has potentially increasing side effects as the dose increases, we try to stay at the lowest dose that has a sufficient effect.

We have found that the best way to keep the dose as low as possible while still having the desired effect is to make sure we are getting plenty of fluids and electrolytes and that we fluid load (500-750 ml boluses) immediately before bed and first thing in the morning to compensate for overnight dehydration.