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Yes, laboratory & EMG confirmed LEMS diagnosis in 2017. I was told by 3 different neurologist & cardiologist that if I reacted to 3,4 DAP, firdapse would arise same results as well, given the side effects are broadly similar. So firdapse is out.
Considering I almost died from the meningitis caused by IVIG and now worried about contracting another even more serious virus/bacteria from the ivig donor blood, I think I’ll pass on trying IVIG again…lol…
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Hi Price,
Nice to meet you as well!
Yes im also on Mestinon but like you, does little for my muscle symptoms. I was on 3,4 DAP but had major reactions. Developed serious cardiac side effects with rhythm changes & suspected seizure. So couldn’t continue with that.
I also went on IVIG, but after first round developed aseptic meningitis & Contracted Rocky Mountain Spotted Fever from one of the IVIG donors. So ivig was a terrible experience for me. Took nearly a year to recover from that ivig ordeal.
Plasmapharesis had some good relief but it was short lasting only a week max sadly so not a long term solution. Plus it’s very invasive & crazy expensive $$$ for a single treatment and you require several over a short course of time.
I like to use natural medicine in junction with traditional allopathic medicine where possible as it seems to help me.
Before becoming disabled, I was a nurse and clinical scientist, so I’m very versed in research. So I’ve been looking more and more into how LEMS affects us physiologically and saw how our condition reduces acetylcholine. So I started seeing if there was a natural alternative to supplement our lost acetylcholine.
And yes, I was able to find a natural homeopathic form of acetylcholine. I made this post to see if anyone has ever tried or considered before.
So Ive decided to be a guinea pig & just try it out. Fortunately there usually aren’t major reaction or serious side effects to short term homeopathic medicines, so I figured it’s worth a try. Nothing will be as bad as my experience with ivig or DAP. I’ll give it a try and see and report back here.
At this point my neurologist has said I’ve exhausted all the standard lems treatments options. I’ve tried some other treatments as well not listed here. But I’m severely affected by my LEMS as I have difficulty walking, talking, eating and even breathing. So I’m willing to try anything!
Thanks so much for responding!!
Rebecca 🤒
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Ashley, it was actually one of my neurologist early on in my neuropathy diagnosis that first discovered that I had impaired detox pathways. When I first started getting more consistent neuropathy pain, I went to a general neurologist whom performed a whole panel of varied tests to help determine possible causes. One of the tests was a Urine Metals Challenge Test which measures heavy metal levels in the urine in response to a chelator which is a medication that binds and removes metals. Surprisingly, I was extremely high for mercury toxicity. The neuro explained that for the level to be that high I must’ve had an impairment for my body to rid itself of toxins.
The next blood test he did was to check for a MTHFR mutation.
Methylenetetrahydrofolate reductase (MTHFR) is a gene that is responsible for producing an enzyme that converts folic acid to methylfolate, a bioavailable form of vitamin B9. Nutrient deficiencies of Vitamin B6, B12, and folate increase homocysteine levels which causes inflammation in the body. The ability of this gene to turn this switch on or off is crucial for the production of glutathione, the body’s most important antioxidant.
Glutathione plays a major role in the body’s detoxification of harmful, disease-causing toxins. When the body’s ability to produce glutathione is decreased, secondary to genetic mutations like an MTHFR mutation, the disease process is enhanced due to the build-up of toxicity in the body. Disorders such as Autism, autoimmune diseases, multiple sclerosis, fibromyalgia, heart disease and miscarriages have been linked to MTHFR mutations. Glutathione’s key role is the maintenance of intracellular redox balance (oxidation-reduction) and the detoxification of xenobiotics (a chemical or substance foreign to the body). A defective MTHFR gene creates a vulnerability to disease processes as detoxification is impaired, leaving the body more susceptible to oxidative stress, and less tolerant of toxins.
Sure enough I tested positive for a double (homozygous) mutation. That’s when I started seeing functional medicine (naturopathic) doctors. Their alternative muscle testing also confirmed what the neurologist test results showed. So basically someone whom has impaired detox pathways when encountered with a serious toxin, metal, virus or bacteria etc. might be able to kill it with medications but it can still stay circulating within the body causing damage and not be removed by the regular means (like the liver, kidney, lymphatics etc.) and continues to recreate the original symptoms. So my body doesn’t naturally get rid of toxins, bacterias etc. I have to actively assist my body to remove any potential dangerous toxins or exposures. This creates a constant inflammatory process unfortunately that can lead to autoimmune issues or cancer from the constant inflammation.
So I had to use a chelating medicine along with binders to help remove the excess mercury. Eventually what removed it almost completely was removing my mercury amalgam fillings. I have to perform a variety of detox treatments just about every day. Having dysautonomia as well has been quite difficult. In addition to the POTS, I also suffer from chest pains, irregular heart rhythm with mild pulmonary hypertension, severe dry eye/mouth (labs/path tested positive for early Sjogren’s), hyperhidrosis, unstable temperature maintenance and Chronic constipation.
If you suffer from chronic constipation as part of your LEMS dysautonomic dysfunction like me then you’re definitely impairing your body’s natural detox of toxins. Once toxins are broken down, the liver throws them straight to your bowels for elimination. In addition to the liver’s waste, your bowels are full of leftover metabolic waste and undigested food from the digestive tract containing bad bacteria, fungus, yeast, and viral particles. Without regular bowel movements, the backup festers, disrupting your microbiome and digestion.
For people like us with impaired immune systems this is so important because the gut walls houses! So working on the gut and preventing constipation is critical for people with autoimmune disease. I’m still struggling to manage it. (Here’s a recent study about the correlation of the two: <span style=”font-size: 19pt; color: #e4af0a;”>https://www.nih.gov/news-events/nih-research-matters/gut-microbe-drives-autoimmunity</span>😉
Detox baths are huge for me since the skin is the largest external organ & easiest to detox. Also with such terrible muscle pains, the epsom salt can mildly help with it too. Detox baths are cheap and super effective. Since I too get dizzy/lightheaded in hot water from my POTS, I can only do warm baths. But it still helps. I try to dry brush my skin also before the bath to ready & open up my lymphatics for detox.
I do so many types of baths depending on my specific needs, the list is too long to mention here, but I found one list on the web that has the most basic but very comprehensive baths for detoxing: https://www.google.com/amp/s/www.huffpost.com/entry/detox-bath-recipes_n_573c76cfe4b0aee7b8e88199/amp
But a word of warning. I used to do baking soda baths but then I started testing positive for Aluminum!! Which is very dangerous for neurologically impaired people. Turns out that arm & hammer or store brands have a bunch of aluminum in it and of course it’s not even listed as an ingredient!! Must buy the baking soda that says aluminum free if you plan to use in a bath …
Speaking of bad ingredients, also FYI- I also wound up testing positive for pesticides- turns out it was from all my hand washing with antibacterial hand soap (at least 20+ times a day). The culprit was a pesticide ingredient called Triclosan which is almost in every single household/personal care product from soaps to toothpaste. The FDA has now “supposedly” banned it from soaps only since 2016 but EPA still allows it in the majority of household products like toothpaste. I still see it selling in stores though (even soap) so please be careful. If you have unexplained hormonal issues, thyroid issues or unexplained allergies look to see if your day to day home/personal use products have it in there. (Great article how Triclosan can affect the immune system & even thyroid function: <span style=”font-size: 19pt; color: #e4af0a;”>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3060004/</span> )
Lastly you wanted to know about the essential oils I benefit from. I used to buy the young Living (YL) essential oils, but they got so expensive that I decided to investigate alternatives that worked the same but would be more cost effective. I was able to talk to a YL vendor who gave me the name of one of their oil suppliers so I could verify their grade of purity. I spoke to this person and they were able to tell me the names of a few other companies they supplied to. So, After tons of research I decided to switch to a company called Plant Therapy (I have zero affiliation with them). I found most of their oils provided the same response as YL, so now that’s whom I use and at a mere fraction of the cost. Some of their synergies don’t work & I don’t use them for tea tree oil, but what I do use regularly is equal counterpart to YL. I’ve never tried DoTERRA, but I know they’re superior but just costly. For now I’m very happy with PT.
Since I’m already immunocompromised and also have a mild form IgA deficiency, I get sick at the drop of a hat. Every time I would leave my house or go to the store I would get a cold, URI, fever or something viral. If I stepped a foot inside Walmart, it was a guaranteed doctors office visit and if I flied out anywhere, it was a guarantee ER visit with pneumonia, flu or bronchitis. That was before I discovered essential oils. Now before I leave my house to go anywhere, even the neighbors house this is what I use.
Plant therapy has a roller synergy called Immune Aid that goes over your spine. Oils 1-3 are on the soles of my feet. Since I’ve been doing these 4, I truly don’t get sick every single time. Humongous difference. If I start feeling sick, I’ll up these to 4x/day or more if needed. If I get a sore throat I’ll rub the germ fighter directly over my throat. 80% of the time it will either stop me from getting full blown sick or greatly reduce it. These have been life changing for me. If feeling sick I’ll also use these oils in a bath as well to spread up the healing process.
They also have a synergy blend called Energy that I roll on my calves before I have to walk any amount of distances. Helps delay the weakness longer than my normal. Doesn’t take it away but does help delay a bit. So I’ll take any help I get. For relaxation/aromatherapy I will add a few drops of lavender to my bath. For lavender, the brand doesn’t matter for me. When feeling sick or to detox I’ll also add to a bath garlic oil, which the only brand so far I found that has it is called biofinest. For skincare/rejuvenation I’ll add organic frankincense frereana to my moisturizer or sunscreen. That oil is amazing for the skin. It’s supposed to smooth the appearance of wrinkles, scars, dry and damaged skin. And it really does. Sad I only discovered the frereana a year ago.
I also recently started using organic clove bud as well. I use it either for detox bath and will add just one drop to my oil organic coconut oil for oil pulling. Really helps clean & detox the mouth & teeth. But forewarning, it’s quite strong orally. Less is definitely best & must be organic.
Surprisingly I use the 21st Century brand for my tea tree oil. I know that brand isn’t great quality either, but For some reason this is the only brand that I find works really well for me. Not even YL?? I’ll use this to clear up acne and I use it dissolved in water to clean especially bathroom & shower. Rids mildew naturally. I’m currently out but I also would use copaiba in a detox bath as well.
These are basically my staples. Not too many I think. Also I don’t injest/swallow at all. From my knowledge the only allowed EO to ingest are from the organic DoTERRA line. But again, never tried.
Anyways this is just my 2¢ and my experience. Everyone is totally different & reacts differently to things. My regime is also closely supervised by naturopathic doctor also. So be careful if not following expert advise. But, I Just wanted to relate my personal experiences.
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Thanks Ashley for the welcome.
When I was finally diagnosed I was so physically impaired, ivig was the first treatment option I was offered. So I did my initial 5 days of ivig (reacting from day 1 despite increasing the pre-meds each day). Within 36hrs after last dose I was in hospital as I developed aseptic meningitis from ivig. It took me almost a year to recover from the aseptic meningitis!! I still have daily headaches from it! Also compounding the delay in recovery was I also contracted Rocky Mountain Spotted Fever (RMSF) from apparently one of the ivig donors. We called the ivig manufacturer and of course RMSF is not an illness they test for. So I also had to undergo IV antibiotics to treat for that on top of the aseptic meningitis. Dealing with these side effects on top of worsening LEMS symptoms was absolutely brutal. I will never touch ivig again!
I Also did 3,4 DAP that also severely reacted to with cardiac side effects & possible seizure. So that was out. Tried several other oral meds & even steroids to no avail. Mestinon has helped stabilize my POTS, but does nothing for other LEMS issues. I’ve done 2 rounds of Plasmapharesis (5 days each) and that drastically helped my neuropathy, improved my voice and eliminated my fasciculations. But relief only last about 6 days. I guess that’s how long it takes my body to renew making my LEMS antibodies (I have both P/Q & N-type).
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Since my LEMS isn’t stable yet, excessive WALKING or Delayed Standing will make my muscles weaker and especially my calves will cramp up terribly & fasciculate. Then my chronic fatigue kicks in and I’m bed bound for at least 2 days. If I go out for a Dr. appt etc, I will have rested up for at least 2-3 days beforehand. So when I go out, it’s not that bad in the moment but it quickly catches up and I’ll get the above symptoms and is definitely at its worse the night of and next day. I also have atrophy of my vocal cords. So I have a low or hoarse voice that will only last about an hour if I’m constantly talking. Weak voice will last all day if I only talk in short bursts.
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Wow, I have a lot of your similarities on my LEMS diagnosis journey. I too initially (2016) developed severe infections & viruses that then went onto a severe POTS flare also with HR upwards of 200 bpm with Long QT syndrome! This then followed by excruciating neuropathy and muscle weakness with subsequent muscle cramping with painful fasiculations. Unfortunately it took me a year and traveling to 4 different states to finally get my LEMS diagnosis. Fortunately my 25 yr nursing experience kept pushing me to get that diagnosis when all the doctors had given up. Unfortunately I haven’t been able to work as a nurse since 2016. I’m currently on disability for my progressive LEMS. I’m still very much struggling and in the thick of the illness. Eventually I need to write a full introduction about my LEMS journey as you have done, but it’s just too daunting for now. Maybe I’ll have the stamina if I get a few more Plasmapharesis treatments soon. Thanks so much for sharing!! Does definitely give hope hearing you’re doing so well <3
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Majority of my treatments are alternative therapies both holistic/naturopathic and homeopathic. For me, detoxification is crucial. I have multi system autoimmune deficiencies(diseases) and have impaired detox pathways. In addition to herbal supplements, vitamins and homeopathic remedies, I can’t live without my essential oils and have been doing regular ozone treatments as well. Epsom salt and detox baths are crucial for me as well.
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Yes! When I leave my home I can only ambulate short distances with a cane or longer distances with a rollator that converts to wheelchair for frequent rest periods. It’s hit or miss whether I need my cane at home depending on my pain/symptoms. Usually I use a cane 50% of the time at home. Then there’s days when I can’t walk at all and either have to crawl or be carried to the bathroom. Not fun! My ambulatory difficulties are from a combination of LEMS & severe neuropathy.