MS or what could this be?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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jimmylegs
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Re: MS or what could this be?

Post by jimmylegs » Sun Aug 26, 2018 1:12 pm

Also, can you tell me if these are MS or Lyme symptoms I'm having: muscle pain that moves throughout the day, right lower leg will be stiff and hurt, then an hour later it'll be my forearms, then it'll move to my left leg, and last night for the first time my left thigh. Then for several days it was in both my upper arms. My heart will start racing suddenly and then stop after a minute or two.
is this while on your herbal stuff? hyperkalemia and heart rate issues are a thing. fundamentally a muscular thing.
Drug-induced hyperkalemia: old culprits and new offenders (2000)
https://www.sciencedirect.com/science/a ... 4300004964
"...excessive ingestion or infusion of potassium-containing substances may also occur. Physicians must be aware of medications that can precipitate hyperkalemia, how these drugs induce alterations in potassium homeostasis, and the patient characteristics that increase the risk of hyperkalemia ... some nutritional supplements and herbal juices contain as much as 49 to 56 mEq of potassium per liter"
so oddly, this stuff may have both fixed some issues and could be contributing to others. moderation, as always, is the key :)
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jimmylegs
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Re: MS or what could this be?

Post by jimmylegs » Sun Aug 26, 2018 1:15 pm

Ears ringing muted sounds sometimes. Getting easily injured, foot has bursitis which hasn't healed in 6 weeks, for no reason, injured wrist doing nothing, injured ankle doing nothing... I never injure easily and I never had bursitis, even after hiking grand canyon in sandals. Also forgot to mention, my weight has dropped from 125 to 107 in 2 months (since this started).
all sounds zinc-y. i'm so interested in your serum levels.
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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jimmylegs
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Re: MS or what could this be?

Post by jimmylegs » Sun Aug 26, 2018 1:22 pm

BTW, can any one tell me if constant neck pain is part of MS?
i wouldn't say so, but i did suffer this for ages without even realizing. a chiro tipped me off in 2006. then i continued to suffer, now aware that i was suffering, for another decade. finally a physiotherapist did some much needed work on my spine (restoring movement between vertebra - freakin scary idea for a spinal cord injury case, but it worked) and taught me some postural tricks and neck exercises which sorted me right out. let me tell you, LIFE IS GOOD without that horrific daily experience. the only time i get a hint of it any more is during a long trip in the car. the seat is just designed to cause trouble, for some stupid reason.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
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don't let suboptimal self care muddy any underlying diagnostic picture!

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jimmylegs
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Re: MS or what could this be?

Post by jimmylegs » Sun Aug 26, 2018 1:35 pm

My other issue is what feels like poor circulation to my legs. I started jogging and walking a lot to compensate for it and it works. But my legs feel uncomfortable if I sit still for too long. I use compression socks too.
no experience with that, but of the several things that can influence circulation, here is one to consider.

the kickass megadose therapy featured niacin (specifically, niacin flush) prominently. that opens up the vasculature and ensures good blood flow. niacin flushing is only appropriate in the short term. it can mess with other fractions of the b complex. the kickass megadose regimen had tons of other b vits as well, particularly b1 which would have been protective against the excessive b3.

for long term, review your diet and ensure appropriate daily niacin supply

"12 mg to 16 mg NE/day has been found to normalize the urinary excretion of niacin metabolites (breakdown products) in healthy young adults."
varies by age, gender, lactating or not, etc etc

https://www.canada.ca/en/health-canada/ ... -2005.html

food sources:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
take control of your own health
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Re: MS or what could this be?

Post by jimmylegs » Sun Aug 26, 2018 1:43 pm

I have had muscle tightness in my neck and the surrounding muscles for I think 10 years now. I always thought it was from adrenal insufficiency (holding stress in this area), but in the last two years it has gotten really bad, non-stop painful, muscles feel sore like they are being pulled tight constantly. I have good posture and do yoga but nothing corrects it. Worst area is base of neck muscles and muscles to the side of cervical spine. Maybe the neurologist will see something in that area on the MRI? I thought MS occurs in episodes, which is why I'm wondering if constant neck pain is part of MS too?
makes me think electrolytes again. does mag oil do anything for it?
i will mention physio again too. i can't believe how much good it has done me. i wonder if your muscles aren't trying to compensate for some alignment issue. i can guarantee you i had no evidence of anything whatsoever wrong with my spine or my posture when he went to work on me and fixed my neck. the other PT in that office also worked miracles on me last time i had chronic hip pain. she just knocked some bones back into place and sent me home fixed lol. some things nutrition can't touch.

semi related: healthy mag-dense foods:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
take control of your own health
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Re: MS or what could this be?

Post by jimmylegs » Wed Aug 29, 2018 7:46 am

bump :) any updates?
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nexxus
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Re: MS or what could this be?

Post by nexxus » Thu Sep 20, 2018 11:50 am

Hi Jimmylegs, thanks for those detailed responses. I finally saw the neurologist and she wasn't much help. She tested all of my reflexes and found nothing I guess. She said I'm very strong based on her test. I did tell her I could summon strength if I needed it (when this was at it's worst). It was like the nerve communication to the muscle is/was having problems and I could override it with force, but when doing ordinary activities like attempting to walk, it felt weak and I had to walk slow and not far. Believe me, I was feeling like I had jimmylegs 8O ! Also the calf muscles became stiff so it was uncomfortable to walk. I was so much better by the time I saw her, she found nothing in her reflex and sensory test. So when I described to her the pain in my calf muscles, she said the only thing that can cause that is a toxin. She says I was exposed to a toxin and now I'm getting better so there isn't much she can do for me. I asked if we could test to see what the toxin is; black mold, pesticides, gluten... they don't do that. We talked about hormones because I got much better using progesterone. She says I will need to see a gyno for that. She is testing for diabetes and B-12 (MMA test at my request) because I told her serum B-12 test is useless if you aren't uptaking the B-12 into your cells. My serum B-12 is suspiciously always high.

I'm much better now but there's still some problems, such as forearms feel like they have carpal tunnel if I use them too much and numbness for all 4 limbs is intermittent. Also walking is still slightly stiff sometimes. Biggest improvement came from progesterone, drinking the Lyme formula and when removing air conditioners which have some mold in them. Also if I eat gluten, causes a rebound of worse symptoms. Lots of sleep is helping too. Oh and magnesium malate seems to be doing a lot.

I have been to a chiropractor and she said my alignment is perfect.

As far as Lyme testing on MS patients I want to mention that Lyme is considered a clinical diagnosis. There the case of a doctor diagnosed with ALS who tested negative for Lyme twice. For the 3rd test, he took an antibiotic which provoked an immune response to the Lyme, so his 3rd test came up positive for Lyme.
https://www.lymedisease.org/372/

How do I post my mineral and toxic metal hair test? You can see zinc/copper ratio and other issues, such as it looks to me that minerals are not getting into my cells. Which I'll be addressing with the holistic practitioner. My zinc is higher than my copper. My only two minerals in normal range are calcium and magnesium. Extremely low sodium and potassium despite such a great raw vegan diet and Celtic sea salt with every meal. It's a pattern for severe adrenal burnout. I have a bit of aluminum and mercury showing in my hair test. I used the best lab there is, ARL, which doesn't wash the sample. Next I'm doing a Bio-energetic scan to get some answers.

You mentioned you have permanent nerve damage and the need to act quickly ... and your diet change. Not sure if you meant straying from the vegan diet helped or harmed you.

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Re: MS or what could this be?

Post by jimmylegs » Thu Sep 20, 2018 4:34 pm

hi as my vegan diet got more and more strict and less and less nutritious my nervous system deterioration went from reversible to irreversible. my most dramatic post dx improvement was thanks to a protocol involving a high protein diet which specified '2-3 eggs for breakfast'. it was awesome but still too late for complete recovery. sucks that i had to get that sick before taking science seriously :'(
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!

nexxus
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Re: MS or what could this be?

Post by nexxus » Thu Sep 20, 2018 6:06 pm

jimmylegs wrote:hi as my vegan diet got more and more strict and less and less nutritious my nervous system deterioration went from reversible to irreversible. my most dramatic post dx improvement was thanks to a protocol involving a high protein diet which specified '2-3 eggs for breakfast'. it was awesome but still too late for complete recovery. sucks that i had to get that sick before taking science seriously :'(
Okay what was in the eggs that you couldn't get elsewhere? Because the OMS diet is strictly vegan and low fat and it works for so many people. Is it possible your gut is severely damaged and that caused your deficiency? I know I have leaky gut which opens the door to autoimmune problems. The leaky gut caused by toxins, stress, and in my case, many systems underfunctioning in every way due to adrenal exhaustion, which was caused by the toxins. Toxins being the start of it all (IMO the vaccines).

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Re: MS or what could this be?

Post by jimmylegs » Thu Sep 20, 2018 6:58 pm

not all diets will work for all patients. ideally everyone meets public health recommendations for essential nutrients. if one patient's imbalance and resulting msdx occurs in the context of overuse of fatty animal foods, then it makes sense that in the short term a vegan diet would help.
in contrast if ms begins with imbalance related to poor vegan or vegetarian diet (a la terry wahls), then an omni diet would logically help. it's about working from extremes back towards the middle.
re the eggs, it was protein. besides that there were a crap ton of essential nutrients in the protocol.
my problem originally stemmed from having seen early lab supported evidence of benefits of vegetarian diet in a friend with famliial hypercholesterolemia.
deciding that what was good for him in the short term would be good for me in the long term - and in ever more restrictive forms - was not smart.
mangled my spinal cord in slow motion. took almost two decades for the shit to hit the fan.

re leaky gut, make sure your serum zinc is topped up :) 18 umol/l ideally. zinc deficiency was definitely a consequence of my vegan diet and correcting that fixed a bunch of other stuff incidentally, such as normalizing my chronically low serum uric acid level.
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: MS or what could this be?

Post by elaine747 » Fri Oct 05, 2018 12:39 pm

Jimmylegs, when I hear of people who don't do the drugs but mainly change their diet and use supplements, I always wonder how long were they on that regiment to see some real results? I have heard people say they did a diet for 3, 6 months, or like Terry Wahl's a year. I'm wondering if it usually takes some decent amount of time for most people to see a change?

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Re: MS or what could this be?

Post by ElliotB » Fri Oct 05, 2018 1:34 pm

"'wondering if it usually takes some decent amount of time for most people to see a change?"

Definitely, it can take many, many years in some cases. Nerve damage can take the body 8 years to repair itself. Most people give up too soon when it comes to diet and supplements because if they don't get instant results - they think whatever they are doing isn't working.

To better understand this concept and the importance of persistence and patience, do some research on the Chinese Bamboo Tree which can take years of daily watering and fertilizing until it sprouts. Good things, especially when it comes to health, often take a long time and require great confidence and patience, especially patience.

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Re: MS or what could this be?

Post by jimmylegs » Fri Oct 05, 2018 2:08 pm

hi it depends how badly off someone is at their starting point, and how specifically the chosen regimen addresses the individual's specific logical and/or lab-documented nutritional challenges.

sometimes diet alone needs a therapeutic boost via supplements. sometimes multivitamins, which are designed to help maintain existing health in joe average, are not enough to support repletion in chronic illness cases. sometimes, addressing a long term tissue-depletion scenario can be expected to take a while.

in the long run the target is routine physical exercise and a well rounded, nutrient-dense whole food diet, consistent with evidence-based public health recommendations.
and even then, sometimes with supplements as suggested on an individual basis depending on geography or in some cases genetics.

i have had several experiences whether diet, supplements, exercise, or a combination have yielded profound short term results. at the same time, when i was diagnosed i looked back at my adult life and thought: okay you took 15 years to dig yourself into this hole, you can expect to take 15 more to get out. looking back almost 13 years on, i have learned a) that my nutritional problems started much earlier. a deeper hole. b) that i did some permanent damage while i was fixated on my ideological and unscientific dietary regimen and c) that my variable diligence over the last decade has taught me that i can't afford to relax my vigilance. i had an episode earlier this year, *finally* got around to following up on that bloodwork, and surprise surprise a bunch of levels were in the toilet.

i think to achieve best bang for an intervention's buck, you want to look at symptoms, how those symptoms might logically align with nutrients, whether you have or can get measurements for those suspect nutrients, and then whether there's the commitment to understand personal daily needs, how to maximize from food sources, and how much supplemental extra is needed to top up. it's not an approach that is necessarily addressed by any one blanket dietary protocol. super individualized. explains why this diet works for joe and that one for alice. hope that makes sense :)

and now that i've just finished dissing single dietary protocols, the one that was the logical best fit for me in 2006, nutrition-wise, was a modified oral klenner. i regained lost functionality in leaps and bounds - up to a point mind you - and in a matter of hours. (other things have taken longer that is for sure). re my rapid improvement on modified klenner: if only i'd started sooner, but i had messed around for years upon years, until the wheels were thoroughly off, and the msdx was front and centre, before taking any action. not smart but there it is - life with a 'new normal' :)
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: MS or what could this be?

Post by nexxus » Tue Jan 29, 2019 7:10 pm

Just an update, I am almost certain this is lyme and co-infections and I have had it a long time. I did the western blot test and came back reactive for bands 41, 58, and 66. How I finally figured this out is that I have been studying lyme for 6 months now and learned that both amoxicillin and Augmentin are used by lyme specialists to kill lime (along with other specific antibiotics), and it was these two lyme killing antobiotics that I had strange and scary reactions to! I have taken Keflex as well, no reaction, but these two ... bad reactions to my nerves. With Augmentin I lost strength in my arms and legs for 2 weeks. With amoxicillin I lost the ability to walk for a few weeks, with numbness and twitching. So any way I learned from Dr. Jernigan's blog that when these bacteria are killed they release serious nerve toxins.
http://www.benbrew.com/lb/lyme5.pdf

Another clue was that I started on Tick Recovery and Biofilm formulas (based on Buhner's protocols) and the constant dizziness stopped immediately (the dizziness was terrifying!). Another clue: I was bit by spiders 30 times 15 years ago, spiders carry lyme and co-infections. Another clue: I had chronic fatigue syndrome 20 years ago for quite some time (known to be caused by lyme). Apparently lyme uses up all of your magnesium and I have severe magnesium deficiency for 20 some years despite taking magnesium daily. Another clue: starting about 7 years ago, if I get a fever, after it breaks I get a rash down the sides of my torso (toxins from dead lyme which is killed by raising the body temperature). If I stop taking the Tick Recovery and Biofilm formulas it comes back as well as pains in my legs because it takes about two years on the herbs to kill lyme and co-infections, in my case, I think it is Bartonella and/or Rickettsia felis because I have always rescued animals, dogs and cats. I am also taking Monolaurian 3 x a day and Biofibrin, this company says they have cured 43,000 of lyme. So any one who thinks their MS is actually lyme, you should check out Dr. Klinghardt's articles on this as he believes all MND; ALS, MS, dementia and so on are caused by lyme disease or co-infections. I had/have other weird symptoms such as ringing ears, severe gluten intolerance, pains that move around, needing 12 hours of sleep, heart would speed up for no reason. I don't expect to be fully better for about a year or two.

Another thing I learned, and this will be very helpful to people who have either Lyme or MS (or maybe Lyme IS MS!) is that progesterone is neuro-protective and can help you in so many ways to have no symptoms. I say this because when I suffered this last nerve attack, I started using progesterone cream and 1 week later my pain and inability to walk decreased by 75%!
Benefits of natural progesterone:

Helps Use Fat for Energy

Facilitates Thyroid Hormone Action

Natural Anti-depressant

Natural Diuretic

Normalizes Blood Sugar Levels

Restores Proper Cell Oxygen Levels

Normalizes Zinc & Copper Levels

Normalizes Blood Clotting

Precursor for Cortisone Production

So I figured out that because I am breastfeeding my 3 year old right now, I have almost no progesterone. So this left me very vulnerable to the lyme. It is as though my body can keep the lyme in check as long as I have enough progesterone. My dad just died of dementia last year at a mere 78 years old and I now believe he died of lyme disease and our medical system is USELESS, CORRUPT, and INCOMPETENT. Last I want to add yet another clue that this is lyme, my 8 year old has autism and they are now finding congenital lyme in all autistic kids!

There is a new urine test for lyme and co-infections: $700 (of course you will have to pay out of pocket due to our useless medical establishment)
https://dnaconnexions.com/lyme-panel-temp/

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Re: MS or what could this be?

Post by NHE » Wed Jan 30, 2019 3:59 am

nexxus wrote:Just an update, I am almost certain this is lyme and co-infections and I have had it a long time.
You may be interested in these podcasts from the People's Pharmacy.

What Do You Need to Know About Lyme Disease?

Ticks, Fleas & Mystery Disease

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