ME/CFS alert latest episode (exercise intolerance)

[Rebeccare]

I tried Pyridostigmine as advised by Dr. Jacob Tietelbaum in his book on CFS. It felt horrible ! Maybe I dont come in that subcategory of patients.

s there anyone on here who have found mestinon to be helpful?

I didn't do well on Mestinon either. I took it for several months, and it made me feel awful: chilled, out of breath, and constipated (oddly enough, none of these are the side-effects that one is 'supposed' to experience).

After stopping Mestinon, Dr. Systrom started me on Midodrine, which does seem to be helping. The other drug he often recommends if Mestinon doesn't work is Florinef. I guess all three drugs do similar things (helping stimulate the veins to pump blood to the heart, minimizing preload failure), but by different mechanisms.

Could this drug make you feel bad for a period of time while the body adjusts?

@Mel9 , that is correct--you start at a very low dose, and it takes about 1 month or so to slowly work up to what the doctors would call a therapeutic dosage so your body can adjust and hopefully shake off the expected side effects (usually muscle pain and GI problems).

I just can’t imagine putting myself through that cpet.

It's not the most fun thing in the world, but it sounds much scarier than it actually is. But if you didn't do well with a regular cpet, then this procedure is definitely not for you!

 

[Gemini]

I guess all three drugs do similar things (helping stimulate the veins to pump blood to the heart, minimizing preload failure), but by different mechanisms.

Thanks for providing details of your experiences @RebeccaRe. Very helpful!

When I listened to Dr. Systrom describe his finding of "preload failure," I was curious if he had tested any of his patients before their cpet for low blood volume. Do you happen to know if he does?

 

[Rebeccare]

That's a good question! He didn't do that measurement on me--I'm not sure about other patients. However, he does encourage good hydration, increasing sodium and electrolyte intake, and other things to boost blood volume.

 

[Wally]

@RebeccaRe - Are you able to provide more specific information about what Dr. Systrom was referring to when you said he encouraged you to get “good hydration, sodium and electrolytes” to help boost blood volume.

In other words, did Dr. Systrom suggest an amount of liquid (I am assuming water?) to ingest per day and/or did he suggest using tap, bottled or distilled water? How much sodium did he suggest you ingest per day and in what way did he suggest you take in or up your sodium level to a “good” range. Same question for electrolytes and is there a particular product(s) that he suggested that you consume to get your electrolytes to a “good” range.

Did you have blood testing done that showed you were de-hydrated or below a normal level in sodium and/or electrolytes?

 

[Rebeccare]

@RebeccaRe - Are you able to provide more specific information about what Dr. Systrom was referring to when you said he encouraged you to get “good hydration, sodium and electrolytes” to help boost blood volume.

Did you have blood testing done that showed you were de-hydrated or below a normal level in sodium and/or electrolytes?

I didn't have any testing done regarding dehydration and low sodium. I guess the assumption is that all of us would benefit from a boost in blood volume?

As for specific information, this is what was given to me: "Other recommended parts of your treatment will be increasing fluid intake to a minimum of 2 liters per day (sodium rich sport drinks like Gatorade or low sugar alternatives are best); increase sodium intake in your diet to 2000 mg per day by reading food labels (packaged and canned foods tend to have higher amounts of sodium)." Thankfully, I have found some electrolyte drinks that have no sugar, since I'm not expending calories with intense exercise.

 

[Sing]

I am just now getting to this thread on Systrom’s work, and really appreciating your specific discussion! I tried Mestinon 10 mg several years back when working with a neurologist specializing in dysautonomia. I stopped in short order because it was moving me in the direction of more aching and not producing a discernible benefit. But I had not gotten up to a therapeutic dose.

So I think I will try to venture it again, as my orthostatic hypotension is a daily trial. With the chest (heart) strain and lack of oxygen I feel when trying to be upright, I am pretty sure I have the right ventricle pre-load failure and poor oxygen delivery to the muscles too. Weakness and aching.

 

[Gingergrrl]

I have not watch the video but I have read about Dr. Systrom's work and spoken in detail with one of his patients (on a dysautonomia board) who did testing with him. I was just curious, is the treatment that he recommends always Mestinon (no matter what) or does he recommend different treatments depending on what he finds?

 

[raghav]

@RebeccaRe What dose of Mestinon were you on ? Did you titrate from a low dose ?

 

[Rebeccare]

I started off on a dose of 30 mg 3 times a day. I think the side effects I mentioned started at that dose. After a month, that was increased to 60 mg 3 times per day. At first I had muscle cramps (a common side effect) on this higher dose, but those faded away after a few days. Then after another month I was switched over to the extended release pill which was 180 mg only once a day. After I stopped taking the Mestinon I felt better within a day or two. I think that it just doesn't quite agree with me for some reason.

 

[Wally]

I have not watch the video but I have read about Dr. Systrom's work and spoken in detail with one of his patients (on a dysautonomia board) who did testing with him. I was just curious, is the treatment that he recommends always Mestinon (no matter what) or does he recommend different treatments depending on what he finds?

@Gingergrrl - In reply #21 @RebeccaRe mentions that there are two other drugs (Midodrine and Forinef) that Dr. Systrom has used in lieu of Mestinon. In the Vimeo video that I posted in Reply #18, Dr. Systrom mentions treatment with intravenous immunoglobulin for patients who have also been diagnosed with small fiber polyneuropathy. See, the Vimeo video at minute marker 56:30 - 58:20.

 

[raghav]

Thanks @RebeccaRe It caused a lot of mental uneasiness. I never tolerated any form of acetylcholine esterase inhibitor or acetylcholine reuptake inhibitor or Phosphatidyl serine which all try to increase the acetylcholine in your brain synapses in addition to the effects on muscles in your skeletal system. I took 120 mg per day for one week then stopped. Simply could not handle the mental side effects.

 

[Gingergrrl]

@Gingergrrl - In reply #21 @RebeccaRe mentions that there are two other drugs (Midodrine and Forinef) that Dr. Systrom has used in lieu of Mestinon. In the Vimeo video that I posted in Reply #18, Dr. Systrom mentions treatment with intravenous immunoglobulin for patients who have also been diagnosed with small fiber polyneuropathy. See, the Vimeo video at minute marker 56:30 - 58:20.

Thank you so much @Wally and I haven't had time to watch any of the videos that I have bookmarked for a future date. I have actually tried everything that you just mentioned (Midodrine, Florinef, Mestinon, and IVIG... although not all at the same time)!

I tried Florinef and Mestinon in 2014 (not at the same time) and did not do well with either of them. I have had improvement from Midodrine (which I still take along with Atenolol) but it is just symptom management. Whereas high dose IVIG got to the root cause and was a huge part of my remission. I don't know at this point if I still need any of my POTS or MCAS meds but I continue to take them b/c I have just stopped IVIG, and am in the process of very slowly tapering off Cortef, and I cannot mess with too many things at once.

 

[RYO]

Can someone provide clarification? Are Dr Systrom's findings limited to ME/CFS patients who also have POTS or does it include broader category who suffer from exercise intolerance.

It sounds like there are some patients with POTS who benefit from mestinon but I am not sure whether this is true for those who suffer from PEM. Also, what if you don't have POTS but suffer from small fiber neuropathy?

 

[Pen2]

@Gingergrrl, do you still take the Midodrine and Atenolol for your POTS? I'm asking because I also take both.

I like that you mention to treat symptoms and not the actual POTS. My blood pressure is very high , increased since starting Midodrine. I have never done IVIG since mine is not that low. I want to talk to my PCP about stopping the
Midodrine because I worry about my high BP and wonder if it's making me worse. Plus my BP still drops just as much or more! It's just higher.

The funny thing is if I forget to take one of my doses, (3x/day), I feel the effects of my OI more.
Very confusing. I do know that antidepressants can also increase my BP so I'm thinking of getting off of that instead.

I'm discouraged because I am on a lot of meds but I am no better and probably worse! I have been in a PEM for awhile now. Really have been unable to get better. I just hope I am not heading downhill from making a mistake.

Is your BP low normally? Before Midodrine? I have hypertension normally.

Doctors are not afraid to pile on the medications! I really need to learn what may not be helping me or may be making me worse.

I'm sure it's not surprising to say depression is the first thing that I was diagnosed with after I had my first ME episode. At that time I figured that was my problem too! Until I never got better, frustrated my PCP, then Hopkins worked me up and diagnosed ME/CFS. Antidepressants were never stopped.

I want to stop Cymbalta!! I don't think I'm depressed or ever have been.

Thanks for reading!

 

[Gingergrrl]

@Gingergrrl, do you still take the Midodrine and Atenolol for your POTS?

Yes, I still take both Atenolol and Midodrine for POTS and have no intention of stopping any time soon. I think I mentioned above that I very recently had my last IVIG (after two years of IVIG) and am also in the process of a very slow tapering down on Cortef so I cannot touch too many things at once.

I like that you mention to treat symptoms and not the actual POTS.

Atenolol and Midodrine both treat the actual symptoms of POTS but they do not change the underlying cause of the POTS which in my case is autoimmune. I believe there is a HUGE sub-group for which POTS is autoimmune, and maybe in time POTS will be considered an autoimmune disease (but we are not there quite yet).

Is your BP low normally? Before Midodrine?

Yes my BP runs ridiculously low and after I got sick, it was around 80/50 every day for 2-3 years and on my first TTT it dropped to 68/48. There were times that I would take the Midodrine and not only would it NOT raise my BP, but my BP would actually drop. It was very bizarre.

But Midodrine always improved my shortness of breath when I was standing. Both of my doctors felt that Midodrine was increasing blood perfusion to my heart and lungs when I stood (and was raising my core blood pressure even when it was not increasing it when measured on an arm cuff). They called this "preferential perfusion" (and even though I never found journal articles explaining this, the concept makes sense to me). I definitely felt better with Midodrine even when it did not raise my BP as we'd hoped.

The first thing that truly raised my BP was IVIG and it is now around 100/70 on most days which is amazing for me. If I really overdo it like I did over the weekend cleaning out about 50% of a storage space with my STBX- husband for several hours moving boxes in the heat, I had tachycardia that night and my BP dropped and my pulse pressure was only 15 and I felt horrible. But on a normal day when I do not insanely overdo it, my BP is now pretty decent (around 100/70) thanks to the IVIG. No idea what will happen now that IVIG is over?

I want to stop Cymbalta!! I don't think I'm depressed or ever have been.

If you know that you do not have symptoms of depression AND you do not feel depressed, then I would talk to your doctor about starting a taper off of Cymbalta (under medical supervision of course). You should not ever abruptly stop an SSRI but they can be safely tapered off. Best wishes if you start this process.

 

[Pen2]

Thanks @Gingergrrl . We are a lot different. I have had hypertention for years before I got ME. My baseline is normally 150's/ 80's so I was started on fosinopril. My whole family has high BP! Even my kids.... So on Midodrine my baseline can go as high as 180's/ 70's ( my diastolic stays good.) when I stand it drops to 100's/ 60-70's. This morning before I took my Midodrine my BP was 169/68, standing 105/ 70. So I have a big drop which of course makes me feel like you do when yours drops.

I started the Atenolol to slow my heart rate to help improve cardiac output. I get short of breath when my BP is really high. My PCP just tells me that this is how my body is comfortable. Im not sure I agree with that. My cardiologist was not happy with my BP but is unfamiliar with OI and ME. She wanted to look iit up before making any changes.

I know I am a very confusing patient for both doctors, also my GI doc with my IBS being so bad. I know stopping any medications is risky and I wouldn't stop anything without my PCP's instructions. Im going to email him with what I have learned and what I would like to try to stop taking. Hoping he will have time to at least prepare for my appt in September.

I have not been well lately so I have too much time to think (with my mush brain ) since I'm not able to do anything.

Thanks for the best wishes I am very happy that you are doing well these days After everything you have been through! I hope you have no change in all your goodness without the IVIG....NO CHANGE Ging!! All good things, Pups and all!

Big Hugs,

 

[RYO]

If anyone is interested in watching a seminar given by Dr. Systrom on 1/20/2018, related to the topic of this ME/CFS Alert Episode, it is available on Vimeo. It cannot be embedded here, but it can be viewed by clicking on the blue box below where it says “Watch on Vimeo”.

Thank you for posting this video. I contacted Brigham and I am in the process of setting up an appointment with Dr Systrom. I was told iCPET used to assess whether you are candidate for mestinon. They also recommend completing skin biopsy for SFN. It seems many of their patients are being treated with IVIG. It appears to me that they are using skin biopsy as a marker for damage to autonomic nervous system.

It is curious that they have not published much under ME/CFS heading. Perhaps they are making the best of their limited grant/study resources.

 

[Gingergrrl]

Thank you for posting this video. I contacted Brigham and I am in the process of setting up an appointment with Dr Systrom. I was told iCPET used to assess whether you are candidate for mestinon.

Thanks for explaining this and it seemed strange to me to put patients through such an invasive test (iCPET) if the only purpose was to determine if they were going to trial Mestinon? I tried Mestinon (just 1/8th of a pill) in 2014 and had a horrible reaction including respiratory depression and almost went to the ER. But I know others have done great with it and in theory, I actually should do well with it given my diagnosis but I didn't.

It seems many of their patients are being treated with IVIG. It appears to me that they are using skin biopsy as a marker for damage to autonomic nervous system.

This makes a lot more sense to me (that patients could also try IVIG or other options besides just Mestinon).

It is curious that they have not published much under ME/CFS heading.

I would assume it is because they could find that patients had POTS, Small Fiber Neuropathy (SFN), other autoimmune diseases, etc, and they would want to treat whatever they find vs. give every patient an ME/CFS label when it may or may not be their diagnosis?

 

[Sushi]

it seemed strange to me to put patients through such an invasive test (iCPET) if the only purpose was to determine if they were going to trial Mestinon?

He is looking for a lot more--have a look at what I posted earlier:

This is a fascinating presentation from a researcher/clinician studying exercise intolerance in ME/CFS patients (and others). This interview touches on OI, POTS, autoimmunity, small fiber neuropathy, oxygen uptake in the muscles, mitochondrial dysfunction--in other words he looks at the problem across the board.

 

[Gingergrrl]

He is looking for a lot more--have a look at what I posted earlier:

I knew he was researching all kinds of things, and different illnesses/diagnoses, but I was not sure what treatments he was offering besides Mestinon (and that was what confused me if the only option was Mestinon). But it sounds like Mestinon is only one option if they are also offering IVIG, and I am assuming in the future they will offer other treatment options, too.