This post is about an herb that has helped my MG symptoms somewhat. It is no cure for MG or anything else that I know of. It is an extremely nutritious herb that has no known toxic chemicals and is considered a food tea of sorts. Drinking the tea is considered similar to eating green leafy foods and other green vegetables.

It is Red Raspberry Leaf tea. I've been buying it in bulk from iherb.com. It is also sold in individual tea packets.
(thanks Annie, great website for herbs and vitamins)

Most of the effects of Red Raspberry tea are slow to notice with one exception.

The exception is for women (men, you can skip this paragraph if you would like). This tea does amazing things for menstrual issues. It is like magic. I was surprised to find that I have no pain associated with my period when drinking this tea. It also make me very regular. It makes my period last less days and a lot less flow. I wish I had been drinking this tea since I was 13! This herb is highly recommended for women. I understand that it also helps during menopause and is supposed to support the adrenal glands and the immune system as well.

I noticed that while drinking this tea regularly, I didn't have any really bad days, none of the days where I slept most of the day or felt so weak that I had to lay in bed. I also noticed that I needed much less sleep, close to 8 hours which has been wonderful. MG has had me sleeping 10 to 14 hours until I started drinking this herb (I want to note here that vitamin B-12 helps with this as well).

While drinking raspberry leaf tea I also noticed that my mind felt more alert and I felt more like me, if that makes sense. I absolutely hate the stupid mind fog I've had since I got MG, I feel so stupid most of the time. This tea seems to help.

Now that I think about it...oh, I just realized this! Since I've been drinking this tea I've been staying up later. My evenings are better than my mornings. This switch has happened so slowely that I didn't even realize it until I sat here to describe my experiences. This is a big change! I remember when I used to feel so weak in the evenings, now my evenings are my best times, my mornings are the same as they were before. I wonder if this is just one of those unexplainable things about MG. I don't think so, since I went back to "normal" while not drinking the tea and was exhausted in the evenings. I'm going to pay more attention to this in the future.

I also feel generally more healthy, mostly unrelated to MG though. I think this tea makes my body function better, but I can't really explain how very well, other than I feel better. My digestive system is happier for one (I have been avoiding gluten so it might be because of that). I also noticed my gums in my mouth look healthier.

When I was experimenting with this tea, I started out drinking one cup of tea brewed for 30 minutes once a week. I did this for a while until I noticed I felt better on the days when I drank this tea. I kept doubling the amount until I was drinking it nearly every day. I did this for a while (three months? I didn't keep track very well) and then stopped drinking it for about two weeks. At the end of this two week period without red raspberry leaf tea I started to feel heavier, noticed I was tripping on things again, and felt myself going downhill. I needed more sleep and I felt that mind fog coming back.

Last week I started drinking red raspberry leaf tea again after the two week break from it, knowing now that it definitely helping me. This time I'm drinking it as an infusion. For an infusion I take a quart jar, put a handful of leaves in the jar, fill it with boiling water then put a lid on it. I let the jar sit on my counter for 4 to 10 hours (usually overnight), strain the leaves, and drink the tea throughout the day. I rewarm it gently on the stove because I like hot drinks. I feel better already. It is not a huge difference as far as MG symptoms go, but it is enough to keep me drinking it.

One more thing. While drinking this tea daily I was able to stop taking mestinon after a while, slowly reducing it as I kept drinking this tea. I still take Mestinon as needed, but I don't take it every day. I'm so happy about this because the Mestinon gives me awful side effects, the worst one is nervousness and a pounding heart. I feel so much better mentally when I don't take Mestinon. I posted previously about these effects, and it was definitely the Mestinon, it makes me panic and feel crazy, but sometimes is still necessary.

Please know that this is no cure, I don't want to give anyone false hope. I still have MG symptoms and get weak a lot, have to rest more than I'd like to. I am saying only that it does help and has other good effects on my health. I recommend trying it.

Is anyone interested in these kinds of things? It takes a long time to write it out, this took me over an hour to type. I'm happy to share but am not sure if anyone is interested in drinking herbal teas. I have four more food-like herbal teas to try but it will take me a year to test them all since I need at least three months for each and I am still working on red raspberry leaves. I am willing to share my results and/or information about other herbs if anyone wants to give them a try. These herbs are nutritional herbs and not considered medicinal herbs so they can be drank regularly by most people. I do think good nutrition can make a difference.

I have searched the internet and can't find anywhere to discuss herbs as treatments or as helpful for MG...does anyone know a forum like this where people discuss alternative treatments?

A note. I am seeing a therapist and he is supportive of my experimentation with herbs , he thinks it might be helpful and as a worst case, it will do nothing, which is what my thoughts are as well. I talked to my neurologist and he doesn't think any herb will help but he said it is fine for me to do this. I'm disappointed that he doesn't seem to care or want to be involved in my experiment. I guess I need a new neuro but don't want to put the energy into finding one.

I hope everyone is doing well.

Susan, I'm very interested in herbs, foods, alternative medicine and anything else found in nature! Where do you think drug companies get their source product from? The one issue I have with herbs, etc. is that the dosing/strength are not regulated, so it's hard to know how much is good and how much is bad.

I'm not sure if it's a good idea to try anything without talking to your doctor first but don't expect them to know about any herbs.

What I found about raspberry leaf is that it does indeed block acetylcholinesterase (AChE). I can't do a lot of research tonight but this is what I found so far.

http://onlinelibrary.wiley.com/doi/1...017.x/abstract

http://www.ncbi.nlm.nih.gov/pmc/arti...00555-0179.pdf

I'm glad it's helping you. I think we should all do a lot of research before trying anything. This herb at least seems to have some research done on it.

Coffee, for example, has had an unofficial "clinical trial" for years, with a very large population! I don't know what I'd do without my one cup per day.

If you find any more info about this and other herbs or foods, please do share! I have an open mind when it comes to this topic. Thanks for sharing what you've been going through lately and your experiences. Don't forget that you may be "used to" the level of weakness your MG is at and may not be all that mild.

As far as soc. sec. goes, if you can't work, you are legally entitled to it because you put money into the program so you could utilize it. It's not a GIFT. It's a necessity!!!

Annie

While we're talking about herbs and "natural supplements," I just want to mention huperzine. I've seen it recommended as a "natural" treatment for MG. What people need to understand is that an acetylcholinesterase inhibitor is an acetylcholinesterase inhibitor,* whether it's "artificial" like Mestinon or a "natural supplement." If you take huperzine while you're taking Mestinon, that's like taking more Mestinon.

As I hope everyone here knows, too much Mestinon can make you weaker, and really too much Mestinon can put you in a cholinergic crisis. A cholinergic crisis looks very much like a myasthenic crisis, but requires the opposite treatment. If you were in a cholinergic crisis, but the doctors didn't realize you'd been over-dosing on acetylcholinesterase inhibitors, they might treat you with more Mestinon, which could kill you.

I saw a chiropractor on YouTube recommending huperzine for his myasthenic patients as if it were just nutritional support, without mentioning Mestinon. This is extremely irresponsible, since most MG patients are already taking Mestinon. He could kill someone.

Now, about raspberry leaf tea: I used to drink it while I was pregnant with my first baby. I can't believe that it's a strong enough acetylcholinesterase inhibitor to cause much trouble, or I would have noticed side-effects. I'm so glad that it is helping you, DesertFlower! Maybe it keeps your acetylcholinesterase inhibitor levels steadier, or gives you just the right dose, or is easier to metabolize--who knows. I'm just urging caution to anyone who experiments with such things (not you, DesertFlower--I know you're being careful), because one of the problems with herbs and "supplements" is that their interactions with the drugs you're already taking probably haven't been studied.

I think everyone here must know all of this already. I was just so indignant with the chiropractor on YouTube and his irresponsibility.

Abby
*I'm just showing off how I can spell that

Annie, thanks for the links. I'd love to read the entire article in the first link.

I didn't know raspberry leaves blocked AChE. This may explain the effects it is having. The effect is definitely very mild and not comparible to Mestinon, it does not give any immediate strength, and is not replace for Mestinon either. I don't want to mislead anyone.

I do agree we should always talk to our doctor before trying something new, especially alternative treatments such as herbs.

I consider Raspberry leaf tea to be a nutritional supplement and that was the reason I decided to try this. I've been experiencing good effects from green leafy foods and wanted something that stored well since I can't go to the store often enough to keep a fresh supply of greens. Raspberry leaves are working for me as a green foods substitute. Also, I am familiar with Raspberry leaves and have used them before, just not regularly.

You are right about getting used to a lowered amount of strength, I am definitely doing that, getting used to being weak. It does make it hard to know when things are helping. I do know that I was able to jump recently. It isn't too often I can get both feet off the ground. I felt like celebrating.

Thanks for the encouragement about the disability...I am not even going to think about it right now, the subject makes me depressed. Plants make me happy though.


Abby, you are right about Huperzine. I don't want to experiment with Huperzine, it has too much risk of toxicity, not something I am interested in right now. Maybe I would if Mestinon weren't available, but definitely the two don't go together. I'm disapointing anyone would recommend it as if it were a nutritious herb.

Thanks for the response.

Susan, hope you'll forgive me for "pulling" this over from the other thread..........I wanted to comment and talk about some other things -- and in my "muddled" brain, it just made more sense to do it over here.

Yes, Annie, I'm on mucho migraine meds again, so I'm "talkative". So happy that you don't mind -- I think it drives my family BONKERS -- LOL!!

Anywho........Susan, I had forgotten, but, my sister, who tends to NOTICE more than anyone else -- mentioned about a year ago that she KNEW I was in an exacerbation LONG before anyone else. HOW?!?!? Because I coughed after every meal!! So, I think that this IS a clue. I don't do this with EVERY exacerbation -- just the ones that seem to attack my breathing and swallowing. For instance, my current exacerbation is eye-related -- coughing is pretty non-existent -- cause everything I eat or drink is room temp or lukewarm.

Oh, and something ELSE "weird" that I have -- that I've never heard anyone else mention.................is a nose "thing". One nostril, when I'm in exacerbation, ALWAYS feels stopped up -- or like something is IN it. When I am NOT in exacerbation, it feels "normal". This thing DOES sort of get on my nerves a little at night when I'm trying to go to sleep. I try HARD not to think about it, ya know???

I grow blueberries and blackberries. Organic, of COURSE!! Blueberry bushes are about 25 years old -- produce GALLONS. We freeze quite a few -- whole and unwashed. Of course everyone knows the benefits. We do the same with the blackberries. The variety I planted is Navajo thornless -- original canes are probably 20+ years old. We get HUGE berries about the size of unshelled pecans!! Delish!! I've noticed that THEY make me feel much better. Haven't tried the leaves. Wonder IF they would make tea?????

My baby sister was diagnosed this past year with -- are you ready.........Rheumatiod Arthritis, Hashitoxicosis, Hashimoto's Thyroiditis, and Graves Disease. (Talk about autoimmunes running in families!!) She also has chronic nasal staph infections (over 30 times in the past 12 years -- probably got it while she was in the hospital delivering my nephew), migraines, and asthma. Due to the staph, her treatment options, like mine, are VERY limited. They did "kill" her thyroid with a radioactive pill -- but, the antibodies remain. Anyway, we've had to figure out SOMETHING to give her relief!! I found the anti-inflammatory diet online, and she has been strictly adhering to it. It was working -- and then she had a staph outbreak a couple of weeks ago. WHAM -- antibodies GALORE. Overnight, her entire body swelled like a balloon and every joint was painful. Pain meds do nothing. I remembered something that my allergy doctor used to recommend -- Alka Selzer GOLD (not Cold). Apparently, when your body is under "stress" or having an allergy attack (or an antibody attack??), your system goes "acid". So, Alka Selzer GOLD, returns your system to "normal" Ph. Anyway, we thought it was worth a try. My BIL had to order it online -- HARD stuff to get ahold of. It is WORKING!! My sister has already started de-bloating and feels BETTER!! I'm wondering.........might work for us, too!!

Also, BEFORE my sister was diagnosed with all of her maladies, SHE had noticed that the blackberries made HER feel better, too.

Well, I'm zoning out with meds -- I sure hope this post has made sense. If it hasn't.................please forgive OR ask questions, ok????

Jana

This makes lots of sense, thanks for sharing.

Blackberry leaves have similar, if not almost identical, properties as Raspberry leaves. They make a great nutritional tea as well, just not as much documentation. I'm happy to hear the berries make you feel better!

I've planted native Blackberry plants in my garden and hope to try some Blackberry leaf tea this year. It is too hot and dry here for Raspberries but the Blackberries are doing wonderfully.

If you decide to try some Blackberry leaf tea, I'd like to hear how you like it. If you do, remember these leaves need at least 30 minutes of brewing rather than the regular three minutes for other teas. The new Spring leaves have the best nutrition, although you can use any leaves.

All the Rubis (blackberries, raspberries and related) plants make a nutritional tea. Even strawberry leaves make a great tea.



When I'm at my worst, my nostril (and it does seem to be only one, usually my left side) does feel swollen and plugged inside, although without a runny nose or anything else to make me think it is plugged the normal way. I don't understand why. I do think it is MG related, but like you I try to just ignore it since I have bigger issues.

Acidity...I've always had trouble with eating too much acid type foods, it aggrivates my allergies, or it used to...since I started experimenting with foods, vitamins and herbal teas to help with MG, my allergies are almost completely gone. One of the things I've learned is to avoid eating too many acid foods, such as fruits and many candies, too, even sugar. These things aggrivate not only my allergies but MG, too. I don't plan to start eating a lot of acid foods again, makes me miserable. I wonder how much body pH can be related to MG. I wonder if I had stopped eating so much acidic foods if I might not have developed MG...well, that I'll never know, but at least I can try to listen to my body from now on.

I'm thrilled to hear that you and your sister find blackberries helpful. Very encouraging!

I'm drinking one quart of raspberry leaf tea, brewed for 4 hours, every day and haven't had to take Mestinon since I started this. I plan on doing this for a full month as long as I don't experience anything negative. I really think it is helping...although I don't feel it kick in like the Mestinon does, in fact I don't feel anything at all ,except good, from drinking raspberry leaf tea. I am starting to crave the tea, as if my body is realizing it is helping. I wonder if the tea is alkaline, I suspect it is since it is similar to green vegetables nutritionally...maybe that is part of why it helps.

I am really feeling great, I feel like dancing...I may go for a walk today...I rarely feel good enough to go for walks...oh, I'm excited to try...I love being outside! (I still feel the MG making my muscles weak...not saying that is gone....just that relatively I feel better)

Thanks for the response. *hugs*

I have good news!

I want to confirm that raspberry leaf tea is really helping me, I am feeling it so much now that I increased the amount I was drinking (to about a quart a day).

I ACTUALLY exercised today, for the first time in two and a half years. I have TRIED exercising since I got MG, with terrible results. Whichever part of my body I try exercising usually gives out, sometimes going completely limp and I'd end up in bed sleeping about 16 hours or so. I had decided that exercise was scary, lol, and I've been avoiding it. I've been limiting my exercise to walking in the store for groceries once a week until today.

I felt different this week, I feel lighter, less effected by MG. I decided to try exercise. This time was different that what I usually feel with MG. I exercised for ten minutes. My muscles are weak but not like the feeling I've gotten used to from MG, just regular weak from lack of exercise. I didn't feel any fatigable weaknes, none at all. I even...(I'm laughing, this sounds silly)...went up and down my front porch steps multiple times today, just because I could...usually it is a struggle to lift myself up each step.

I suppose I should wait a few days before reporting this since sometimes the weakness takes a few days to catch up with me. I am excited! I was able to exercise!!!! Time to celebrate!

Is it coincidence this happened shortly after I increased the amount of raspberry leaf tea I'm drinking? It could be, but I don't think so.

I had to share this with you guys. I feel so good!!! I hope the good feeling lasts. If it does, I wonder if it will go away after I stop drinking the tea. I am still going to take it easy, and not push my luck too much. If I continue to feel good I'll increase my activity slowly...maybe 15 minutes of exercise next time.

I exercised!!! And more than that, I felt so good I combed my hair really nice and put on nice clothes, lol...it sounds so silly to say it, but usually I don't bother trying to look good because it takes so much energy. It felt so good I'm going to try it again tomorrow.

How about milk thistle, I read that it has been used for decades for myasthenia gravis as wel as cerosis of the liver but the neuro dr. Did not want dad taking it, mostly cause they don't have the medical history of complication of other drugs, the neuro dr. Said to check with the liver specialist but that dr didn't hav any idea what I was talking about, therefore he won't allow it! He has Ben doing vey well the last 3 months besides the normal diarea with the mestinon. He has cut his prednisone from 40 mg To 10 mg , small prescription of cell cept twice a day, and mestinon 60 mg 3 times a day, I want him to cut out his mid day mestinon to help gastric problems , it doesn't seem to charge him up as most or people, recently he swallows breaths , holds his head up. I've seen it for this last year. 4 Icu stays. I watchd it go thru his whole body, even arms and legs, Couldn't walk, etc. now after much water retention problems he's on a cane, getting around pretty well, life is kinda back to normal, I'm lost, I told the dr. I thought it burnt out, she said it not the flu doesn't go away, They were going to have him do plasm exchange every 3 weeks, yet now it's been almost 4 months, thanks fo listening!

Want to wish every one a well wish, and remember myasthenia gravis is kinda like a pinball game no reason things can't get better, Hope is there for all of us! It can be active And it can be inactive, Right?

I am glad to hear your dad is doing better. Your doctor is right, this is something that never goes away, even those with MG who experience remission often they have the MG return later on, the antibodies are forever with us. Mestinon is rough on my digestive system, too...I have to stay near a toilet for hours after taking it.

I tried Milk Thistle and can't really tell if it helped but it definitely didn't have any side effects and it is a pleasant tasting drink. I tried it in small quantities, about two cups per week. Milk Thistle is not a tea that should be used daily for long periods of time so be careful with it if you or your dad decide to drink it. Milk Thistle is supposed to be good for your liver, but I am not a doctor so please don't take my word for it. I know I will continue drinking Miilk Thistle tea on occasion after I finish this experiment with Raspberry leaves in February.

I have tried many (about 10) herbal teas in an attempt to reduce my MG symptoms, because herbs and plants is something I am experienced with and feel safe trying. At first I was trying mild herbs that are supposed to help the immune system. I found that some of them helped a little, and they helped mostly with my allergies and not necessarily the MG.

I have a new theory concerning herbs and MG. I think rather than trying to help the immune system, I need to strengthen my adrenals, which is why I am experimenting with Raspberry leaf tea. It is supposed to help heal the adrenal, plus it is full of vitamins. Raspberry Leaf tea is considered safe to drink every day, as safe as eating green leafy vegetables, so I feel good drinking a lot of it to see if it helps. I really think it is.

I have read that one function of the adrenal glands is to regulate and inhibit the immune response (I need to find those articles again because they made so much sense concerning my symptoms, MG and others). I think this makes more sense that suppressing the immune system as a treatment for MG, at least my type of MG and for herbal treatments, but of course I am not a doctor only a person who has reached the limit of healing within the medical system and am willing to experiment on myself with herbs, foods and vitamins that are considered relatively safe. I definitely don't recommend others doing this without researching first or working with a qualified herbalist and always communicating with your doctor.

Thanks for responding, I hope your dad keeps improving. I remember how it feels to not be able to walk, eat, or just about everything. I suppose I am lucky MG only has the slightest effect on my breathing and swallowing. Hopefully your dad has stabilized. I wish both of you the best.