jimmylegs, Help Needed!

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jimmylegs, Help Needed!

Postby THX1138 » Sun Aug 19, 2018 1:19 pm

I am getting so bad that I think I will probably end up in a nursing home this year. That would be the end of me.

Main (MS) problems:
1) Muscle tightness and spasms. The spasms are really severe with the 1st few movements, no matter how small, after waking. The muscle tightness is even effecting my eye muscles now.
2) Intermittent muscle weakness all over.
3) Brain Fog
4) Low energy

Other health conditions
1) Diagnosed with Pancolitis 2 years ago, Although always basically symptom free.
2) Chronic Constipation for many years. And these days my abdomen feels like I am full of it.
I am taking Citrucel for the constipation and will be taking more.
3) Chronic dehydration. This one really affects me and I need, and do, drink 1 gallon of water per day.


___________________________________________________________________________

I have a helper at my place (20 hours per week soon). She is highly competent all around.

She is able to prepare the dishes you may recommend.

____________________________________________________________________________

Food - I like almost all vegetables.
- I don't eat the unclean meats as mentioned in the Bible http://www.uncleanfoodsdietarylaws.com/ ... _list.html

- I am allergic to Hazelnuts and Brazil nuts
- Mushrooms are yucky, No really they are!
- I need at least 2000 calories per day.

Labs

The most recent Zinc/Copper from Essentia was mistakenly done a few hours after taking a multi and 1 Now Optizinc. I will have a (7 day washout from all supplements, except Mg) blood draw on Monday 08-20-2018 for serum Zinc/Copper.

What I know I'm doing wrong:
1) Not eating enough calories
2) Not using much Mg Oil (a minute or so most days) Because it dehydrates me if I don't drink about a liter of water with a single 1 minute treatment.
3 Not moving enough


Drugs:
Mesalamine - 1.5 grams per day
Mirtazepine - I am now down to about 1.875 mg at bedtime
Alcohol - A couple of times a year. It destroys my movements and my (already crummy) walker walking.
Caffeine - A couple of times a year.

Physical Activity level:
Very sedentary. The main exercise I do is riding my Octane XR6, Maybe 10 minutes most days.

Diet:
Partially AIP and very inconsistent, such that to describe my diet is impossible. But usually not enough calories and that makes my extremities cold most of the time, in addition to causing low energy and brain fog and worsened muscle spasticity..

Water Intake:

I drink 1 gallon carbon block filtered tap water, mixed with 200mg Natural Calm.
Insufficent Mg Oil treatments. I would take more (oral) Mg, but it causes excess stool softening. That includes Mg Bis-Glycinate.

I have many cookbooks - AIP, Cooks Illustrated, etc., and 1 vegetarian cookbook called fresh & fast vegetarian.


What I am asking for is a detailed orders of what to eat, what supplements to take and anything else you view as important.


Thank You :-D
Last edited by THX1138 on Fri Sep 14, 2018 9:34 am, edited 1 time in total.
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Re: JL, Help Needed!

Postby ElliotB » Sun Aug 19, 2018 2:15 pm

Sorry to hear you are having a tough time. Since the possibility exists that the things you have been doing to care for yourself up to now may not be giving you the results you had hoped for, are you willing to try new but safe protocols at this point in time? Are you willing to change your diet? If so, what foods do you eat (please be specific) and what supplements do you currently take (again, please be specific)?

Although there are certainly no guarantees, simple changes might be beneficial for you.
Last edited by ElliotB on Mon Aug 20, 2018 6:44 am, edited 1 time in total.
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Re: JL, Help Needed!

Postby jimmylegs » Sun Aug 19, 2018 3:09 pm

aha there you are :)

ok let's dig in on this

Main (MS) problems:
1) Muscle tightness and spasms. The spasms are really severe with the 1st few movements, no matter how small, after waking. The muscle tightness is even effecting my eye muscles now.
2) Intermittent muscle weakness all over.
3) Brain Fog
4) Low energy

Other health conditions
1) Diagnosed with Pancolitis 2 years ago, Although always basically symptom free.
2) Chronic Constipation for many years. And these days my abdomen feels like I am full of it.
I am taking Citrucel for the constipation and will be taking more.
3) Chronic dehydration. This one really affects me and I need, and do, drink 1 gallon of water per day


sucky. we'll definitely get into this in more detail once you are able to provide more info re diet such as it is, supplement regimen, and labs. glad the pc is mostly symptom free at least.

Food - I like almost all vegetables.
- I don't eat the unclean meats as mentioned in the Bible http://www.uncleanfoodsdietarylaws.com/ ... _list.html

- I am allergic to Hazelnuts and Brazil nuts
- Mushrooms are yucky, No really they are!
- I need at least 2000 calories per day.


good re veg. re unclean vs clean, can you post a bullet point list for me? whfoods is a main info source for me and you may already know its author is jewish so i think we're likely partway there. also, now i might be looking into insects for you to eat ;) jk. noted re allergies, preferences or lack thereof and calories.

Labs

The most recent Zinc/Copper from Essentia was mistakenly done a few hours after taking a multi and 1 Now Optizinc. I will have a (7 day washout from all supplements, except Mg) blood draw on Monday 08-20-2018 for serum Zinc/Copper.


noted. estimated turnaround time for results? in the meantime you can track food intakes and post, so no big if we have a bit of a wait for lab numbers.

What I know I'm doing wrong:
1) Not eating enough calories
2) Not using much Mg Oil (a minute or so most days) Because it dehydrates me if I don't drink about a liter of water with a single 1 minute treatment.
3) Not moving enough


noted. is your help good at persuasion, bullying and/or enforcing food intake? ;) more to follow.

Drugs:
Mesalamine - 1.5 grams per day
Mirtazepine - I am now down to about 1.875 mg at bedtime
Alcohol - A couple of times a year. It destroys my movements and my (already crummy) walker walking.
Caffeine - A couple of times a year.


awesome re low alcohol and caffeine intake, at least you don't have to compensate for nutrient drain from those. i have to look up those drugs to check for any antinutrient interactions.

Physical Activity level:
Very sedentary. The main exercise I do is riding my Octane XR6, Maybe 10 minutes most days.


10 mins better than nothing. what are your main barriers to doing more? eg swimming for example, which is particularly good for those of us who deal with balance and heat tolerance issues (i say this already knowing it can suck a bit when getting *out* of the pool and full gravity reality hits again). on the plus side, at least you don't have to worry about athletic nutrient depletion per se.

Diet:
Partially AIP and very inconsistent, such that to describe my diet is impossible. But usually not enough calories and that makes my extremities cold most of the time, in addition to causing low energy and brain fog and worsened muscle spasticity..


i need a journal detailing the last three days of whatever you did eat. failing that pls post times and estimated quantities for dietary intakes for today, monday and tuesday. as elsewhere, post in recipe format not menu format pls.

Water Intake:
I drink 1 gallon carbon block filtered tap water, mixed with 200mg Natural Calm.
Insufficent Mg Oil treatments. I would take more (oral) Mg, but it causes excess stool softening. That includes Mg Bis-Glycinate.


what about plain old magnesium glycinate, without the bis? also what happened to putting some salt in the water.

I have many cookbooks - AIP, Cooks Illustrated, etc., and 1 vegetarian cookbook called fresh & fast vegetarian.


nice. do any include an emphasis on nutrient density?

What I am asking for is a detailed orders of what to eat, what supplements to take and anything else you view as important.


first i need the complete current daily supplement regimen pls and thx.

looking forward to your reply :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: JL, Help Needed!

Postby jimmylegs » Mon Aug 20, 2018 7:32 am

questions re Mirtazapine 1.875 mg at bedtime:
are you tapering, and if so when was max dose, how long were you using m at that dose, and how long has the taper period been so far?
do you experience side effects from this medication? if you are tapering, have you experienced any reduction in side effects? if so pls describe.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: JL, Help Needed!

Postby jimmylegs » Mon Aug 20, 2018 10:42 am

https://www.healthline.com/health/overh ... n#symptoms

You may not recognize symptoms of overhydration in its early stages. As the condition progresses, common symptoms include:

-changes in mental state such as confusion or disorientation

...dangerously low levels of sodium in your blood... can cause more severe symptoms, such as:

-muscle weakness, spasms, or cramps

https://www.menshealth.com/health/a1952 ... rhydrated/

"You've heard it since you were a kid, from your parents to your gym teacher: Drink two liters (or eight glasses) of water every day. Lately, though, researchers have been questioning the tried-and-true water rule, and in fact, believe even health-minded individuals could be drinking too much H2O.

There’s no scientific method behind those numbers,” says exercise physiologist Stacy Sims, Ph.D., a hydration researcher at Stanford University. “And the recommendation doesn’t take into account gender, environment, altitude, fitness level—factors that could affect fluid intake needs.”

In fact, there’s a lot of marketing behind popular hydration recommendations, Sims says—with potentially dangerous consequences. “Drinking too much fluid can lead to hyponatremia, which is when sodium in blood becomes too diluted,” Sims says.

Symptoms include confusion, headaches, nausea and bloating—stuff that’s easily confused with dehydration. In severe cases, hyponatremia can lead to seizures, organ failure and even death."

https://www.merckmanuals.com/en-ca/home ... rhydration

"Certain drugs, such as some antidepressants, can also cause overhydration in susceptible people...

Treatment
-Restriction of fluid intake
-Treatment of the cause of overhydration

Regardless of the cause of overhydration, fluid intake usually must be restricted (but only as advised by doctors). Drinking less than a quart of fluids a day usually results in improvement over several days."
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: JL, Help Needed!

Postby THX1138 » Mon Aug 20, 2018 1:04 pm

jimmylegs wrote:questions re Mirtazapine 1.875 mg at bedtime:
are you tapering, and if so when was max dose, how long were you using m at that dose, and how long has the taper period been so far?
do you experience side effects from this medication? if you are tapering, have you experienced any reduction in side effects? if so pls describe.



Max dose was 15 mg (I didn't want to get very dependent on them and have nasty, protracted withdrawal symptoms.) I haven't taken 15 mg for at least 3 months.
I took it for a few years, with a few breaks that lasted a few weeks or so.

I originally started on the M for the appetite stimulating effects; these are profound.
I am tapering by splitting the pills - Now down to1/4 of the minimum dose (.25 x 7.5mg = 1.875mg).

I did buy syringes to precisely measure doses as I tapered. https://www.amazon.com/gp/product/B01CF ... UTF8&psc=1 Not used yet. This site's info on tapering using dissolved pills looks good: https://www.survivingantidepressants.or ... -capsules/
Elsewhere I had read that (for Mirt, at least )

A mixture that contains 1mg Mirtazapine per 1ml liquid was suggested on another site. This (along with the 1ml syringe lets you drop the dose in increments as small as 1/10mg. Wow
I've had really bad appetite and mild nausea when I have switched to a dose of 0. I guess that would be no dose at all :smile:

When I stopped the Mirt, I ended up having significantly more energy, but also some anxiety and little appetite, so I went back on it twice now. But I am down to 1.875mg with an sort of ok appetite.
It is about time to start using the pill crusher along with the syringes for the liquid part of the taper.

I suspect my constipation is playing a significant role in causing my lack of appetite.


The Mirtazapine makes me sleep too much. Within an hour of taking it, I get some weakness. Several years ago I tried it for a week or so,but quit it because it made my walking worse. I would have not taken it again, but it is so great for stimulating my appetite and it brings my mood up so well and so quickly (1- 2 days).

I think the weakness that I get oftentimes in the PM (not right after taking the Mirt) went away also, but I need to reproduce this more to be sure.
Yes, I really want to get of the Mirtazapine. Wow I sound like some kind of junkie or something, but that can't be because this is a legal drug that my Dr prescribed :roll:
Last edited by THX1138 on Fri Aug 24, 2018 5:11 pm, edited 3 times in total.
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Re: JL, Help Needed!

Postby THX1138 » Mon Aug 20, 2018 3:42 pm

jimmylegs wrote:https://www.healthline.com/health/overhydration#symptoms

You may not recognize symptoms of overhydration in its early stages. As the condition progresses, common symptoms include:

-changes in mental state such as confusion or disorientation

...dangerously low levels of sodium in your blood... can cause more severe symptoms, such as:

-muscle weakness, spasms, or cramps

https://www.menshealth.com/health/a1952 ... rhydrated/

"You've heard it since you were a kid, from your parents to your gym teacher: Drink two liters (or eight glasses) of water every day. Lately, though, researchers have been questioning the tried-and-true water rule, and in fact, believe even health-minded individuals could be drinking too much H2O.

There’s no scientific method behind those numbers,” says exercise physiologist Stacy Sims, Ph.D., a hydration researcher at Stanford University. “And the recommendation doesn’t take into account gender, environment, altitude, fitness level—factors that could affect fluid intake needs.”

In fact, there’s a lot of marketing behind popular hydration recommendations, Sims says—with potentially dangerous consequences. “Drinking too much fluid can lead to hyponatremia, which is when sodium in blood becomes too diluted,” Sims says.

Symptoms include confusion, headaches, nausea and bloating—stuff that’s easily confused with dehydration. In severe cases, hyponatremia can lead to seizures, organ failure and even death."

https://www.merckmanuals.com/en-ca/home ... rhydration

"Certain drugs, such as some antidepressants, can also cause overhydration in susceptible people...

Treatment
-Restriction of fluid intake
-Treatment of the cause of overhydration

Regardless of the cause of overhydration, fluid intake usually must be restricted (but only as advised by doctors). Drinking less than a quart of fluids a day usually results in improvement over several days."


For me, overhydration, I don't think so.

I do worse with less water.

I do better with more water.

Labs have always been "Normal" for whatever that's worth.

My saliva often feels thick without consuming lots of water.

A high sodium meal requires me to drink extra water or else I suffer.

Eating at all near bedtime makes muscle spasms much worse when I wake.

Eating meat makes me more dehydrated.

The increased failure of my foot to tilt up goes with drinking less water.

I find that often times drinking a large glass (16 oz) of water will bring my appetite back.

I took some medicine yesterday that I later read (also) acts as a diuretic and that made my saliva thick and really messed up my muscle functioning when waking in the morning ( It took several minutes to bend my legs to get in position to stand up from sitting on the edge of the bed. Alcohol does this, too. Also, both increase urinary urgency the next day and possibly beyond.

Overnight, when I've done things that dehydrate, (eating near bedtime,eating salty foods without increasing water intake not drinking enough by not drinking water right up 'till I go to bed and drinking water during the night (about 1 quart), my muscle spasticity is worse and my eyes get extra dry, such that the eyelids stick to the eyes a bit.

My eyes are usually dry. They don't usually burn, but do burn if I'm near frying garlic, I think it is.

I have pulsatile tinnitus. I notice a change in its volume and sound characteristics with activities such as eating or drinking water. I believe that my blood volume is low.

A few years ago I saw a nutritionally oriented MD and he gave me some test that indicated that I was chronically dehydrated; I already knew that.

Years ago, I was only aware of my need for hydration when I got thirsty. These days, I rarely get thirsty, but need much more water.
Last edited by THX1138 on Sat Aug 25, 2018 7:47 pm, edited 1 time in total.
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Re: JL, Help Needed!

Postby jimmylegs » Mon Aug 20, 2018 4:39 pm

hmm i thought you had had improvements adding salt to water in the past. seeing your full regimen may point something up. i see dehydration is a possible side effect of mirtazapine.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: JL, Help Needed!

Postby THX1138 » Mon Aug 20, 2018 6:48 pm

I gave adding salt to my water a few trials.
It seemed good at first, but after a while it seems to not help. Also, it seems to increase the swelling of my calves and ankles. But I may give it another go.
Come to think of it... I did get a new bottle of Salt for Life that I haven't used yet. I will start salting my water with the 2.5 tsp as I had written of earlier in general-discussion-f1/topic24583.html

What I like about Salt for Life is that it has more potassium than sodium.

I just mixed 1.5 tsp [/u][/u][/i][/b] with 2/3 gallon water. Here I go again. Reading my previous posts, I convinced myself. I'm still not sure what the ideal ratio is, but this probably is in the ballpark.
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Re: JL, Help Needed!

Postby jimmylegs » Tue Aug 21, 2018 4:53 am

worth a shot. i'll be interested to see your journal for sun mon and today, in addition to your responses to the various other questions in previous posts on this thread :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: JL, Help Needed!

Postby jimmylegs » Tue Aug 21, 2018 7:06 am

had you ever followed up on any of the hormone questions contained in the pdf posted last yr towards the end of your dehydration topic?

"Worth mentioning, also, is the fact that 75% of Roselle 's patients with latent tetany of magnesium deficiency improved on treatment with thyroxine.•
This is a provocative finding, since thyroid hormone affects protein-binding of magnesium; ... Before instituting this therapeutic approach in our patient, who has thyroid function at the low limit of the normal range, we considered the similarity of some of her findings to those of some patients with periodic paralysis or weakness, who also have intermittent aldosteronism, and who exhibit exacerbations in response to administration of salt. In this context, we must recall that some patients with periodic paralysis have responded favorably to thyroid administration or stimulation, and have experienced recurrence of weakness or withdrawal of thyroid therapy, whereas others have periodic paralysis in association with hyperthyroidism. Whether our patient, who also suffers from marked weakness, presents another facet of hypokalemic periodic paralysis (magnesium deficit being known to predispose to loss of muscle potassium, and to prevent its repletion requires further elucidation."

it will be interesting to examine your forthcoming diet / supplement journal and lab results, through the lens of nutrient support for optimal thyroid function
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: JL, Help Needed!

Postby THX1138 » Tue Aug 21, 2018 2:00 pm

Blood drawn today after 8 day avoidance of all supplements except Mg. Also yesterday (only) I took 1 Albion Chelated TRS Magnesium which also has 12.5mg B1 and 2.5mg B6.

I have recorded my food intake since Sunday. I'm still getting the hang of it - like weighing the food before I eat it #-O I have more than 1 of each dish, so it's not as bad as it sounds, though. :lol:

Re Hormones: I have to look into it.

Re food Log: I need to compile and post.

Re Supplement Log: Only Mg for the last 8 days (and the B vitamins mentioned above. I will put a log together and post.

Re questions about my opening post: will do it.
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Re: JL, Help Needed!

Postby jimmylegs » Tue Aug 21, 2018 2:02 pm

standing by :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: JL, Help Needed!

Postby THX1138 » Fri Aug 24, 2018 3:21 pm

I'm still tracking food intake. It will be a week by this weekend. Other answers will be answered. But for Now...

Serum Zinc and Serum Copper


Supplements were taken a few hours before the blood draw.

07/18/2018 Noon Zinc 1.34 mcg/mL 0.66 - 1.10 mcg/mL
07/18/2018 Noon Copper 1.03 mcg/mL 0.75 - 1.45 mcg/mL

_______________________________________________________________________

All Supplements (except Mg) avoided for 8 days prior to below blood draw results .

08/21/2018 Noon Zinc 0.84 mcg/mL 0.66 - 1.10 mcg/mL
08/21/2018 Noon Copper 1.03 mcg/mL 0.75 - 1.45 mcg/mL

Both Copper results being 1.03 mcg/mL is interesting to me and is indeed what is in the lab reports.

I had been taking 1 Optizinc every day for a minimum of about 100 days (quite possibly 200 days , but I don't remember and don't have receipts needed. For probably 1/3 - 1/2 ?? of those 100 days I also took (1) multi that also has (zinc 11mg and copper .9mg) https://www.amazon.com/gp/product/B002R ... =UTF8&th=1
Last edited by THX1138 on Fri Aug 24, 2018 3:53 pm, edited 2 times in total.
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Re: JL, Help Needed!

Postby jimmylegs » Fri Aug 24, 2018 3:32 pm

dang that zinc. and fwiw, morning fasting zinc is the best draw of the day, too which means 0.84 is close to your daily best case scenario when not supplementing. i don't know if i would do much better :S my last zinc result was 0.76 mcg/ml. since then i did a month of 90 mg per day and then backed off to normal doses, but have not been back in to retest yet.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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