Debbie Lewis
Forum Replies Created
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Hi Carmen Willings,
I’ve done a variation of the AIP diet. And will start it up again when we get home from visiting our daughter’s family. My biggest concern is the restrictiveness of the protocol. Some of the foods on the protocol I can’t eat now. This makes the diet even more restrictive. Have you found the diet to be restrictive? Or are you able to eat all of the foods on the diet? Is this AIP diet a long term diet for you? From what I’ve read it’s suppose to be a short term way of eating … but I’m thinking that I may have to follow it for the long term. But I’m a bit hesitant. Would love to hear your thoughts.
Thanks, Debbie
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That is interesting.
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In Washington state, for phase 1: they’ve opened up construction, some outdoor recreation is permitted, landscaping, automotive sales & retail curbside sales are permitted. Can’t wait for phase 2 when barber shops & salons can reopen!
Debbie
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Hi Dawn,
Good news: the ‘nodule’ is from living in the Mojave desert, downwind from Trona and the sulfur mines, AZ desert & here with the wildfire smoke a few particles have lodged in my lung and the body doing what it does encapsulated the foreign object. I actually have two 3 mm spots. So I’ll do another Chest CT next year to keep an eye on it. But the dr wasn’t concerned at all – right now. If it changes next year, then we may need to look into it more so. Other tests will follow, of course, but I’m thrilled with this outcome. Yay! 🤗❤
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Thank you Dawn. As far as I know they’re still going ahead. My daughter hasn’t been told otherwise. Even if they don’t have a formal graduation we will celebrate her achievement nonetheless! 🤗 She’s the reason I put off my IVIG infusions until June 5th. I promised her I’d be there for her graduation – no matter what – and I’m going to keep that promise! 🤗
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Thank you Dawn,
I don’t do well with soy products so I’ve avoided soy as a rule. I thought it was interesting that my neurologist would want me to avoid it. I wasn’t sure if maybe this was something other LEMS patients may have had problems with it. Fortunately, for me my neurologist has treated one other person with LEMS – so it gave him an exposure to the disease before I came along. 😊
Debbie
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Hi Dawn,
That’s good to hear that you can still have magnesium rich foods – just in moderation. That gives me hope that I don’t have to give up some of the foods I like. So now to figure out which ones cause issues and which ones are safe. It’s all in the moderation – I hope! 🤞
Do you have problems with ‘soy’? That was another food product my neurologist told me to avoid. So I’m curious if you or anyone else may have had problems with soy. I’d be curious to hear if that was an issue with anyone.
Debbie
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I had my Chest CT last week – Thursday, April 30, 2020. Got the result today. I have a small nodule in my lower left lung. It’s about 3 mm. I am seeing Pulmonologist tomorrow at 1:20 pm to talk about it AND to do a breathing test. Dr. Kim, my neurologist, wanted me to see the pulmonologist before we left for GA on May 20 for my granddaughter’s high school graduation. I don’t know yet if it’s cancer … I was hoping that I would have the autoimmune LEMS. Praying that is still the case and this is not cancer. I hope to know more soon one way or another.
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Look at this article Dawn wrote about her experience with magnesium. You’ll see a link connected to the word ‘magnesium ‘ that will take you a list of foods high in magnesium. https://lamberteatonnews.com/forums/forums/topic/diet-what-diet-changes-do-for-lems-symptoms/
Debbie
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I’m curious if you had a reaction to all foods that are high in magnesium or only a few of them? If so, what is your diet like now?
Thanks, Debbie
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Hi Ruth,
My neurologist told me to stop taking magnesium as a supplement and to avoid soy. These make the symptoms worse. Dawn noticed that chia seeds, which are high in magnesium. She had a bad reaction to the magnesium. If you google foods that are high in magnesium it will list several foods you wouldn’t guess that would be high in magnesium. I have no idea if you need to avoid all of those foods or only the ones you notice a reaction to. Which would mean eliminating them one at a time while avoiding the others so as to make sure you don’t mistake which food item it is you’re reacting too. This is where I’m at in figuring out which ones I need to avoid and which ones I can safely eat.
Good luck! Debbie 🤗
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Hi Ruth,
Well, you’re ahead of me on treatment. I’ve been struggling with this for 5 years now. I received my diagnosis about 2 weeks ago. In June I’ll start my IVIG treatments with 4 day ‘loading’, then 2 days in July & Aug. Then there will be a reassessment to see if that helped me. I’m sure, like you and others, there’ll be trial & error of medication to see which combination works best for me. From what I’ve read on this forum – everyone has a different combination of meds. Maybe your doctors haven’t found the right combination for you yet. I’m not a doctor so I can only guess. It’s frustrating to be sure.
I’m experiencing the same exhaustion from exertion from walking, climbing stairs (which is avoid or take slowly), hiking or anything. I still make myself go out for walks but my legs feel as though I’ve been walking for hours, when in reality it’s only been 20 mins. I also struggle with balance. I’m hoping that after my IVIG treatments that’ll stop. But I really would like to not struggle so much with swallowing and nausea when I eat. I’m keeping my fingers crossed. 🤞
I’m glad you & I found this forum, it gives me hope and a feeling of ‘not being alone’ on this path.
Debbie
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Yes, welcome Ruth! So glad you found this forum. Like you, I’m new to this diagnosis and haven’t started my treatments yet. I, too, am looking forward to hiking and long distance walks again. That is my hope too. You’re not alone. I look forward to seeing you reach your goal of hiking again.
Debbie
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Swallowing problems & food regurgitation. – Diagnosed with Dismotility/spasmodic esophagus. Fatigue climbing stairs and distance walking. Weakness in my hands, inability to pick up things.
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Yes, I have had an EMG/NCS. Not particularly fun but not terrible either. The most disturbing part was the hard twitching when the electric current was too high or tensing the facial muscles to get the correct nerve reaction. They had trouble in a couple of places: eye area and my right wrist that had had surgery to repair a joint. After it was done, the dr told me they didn’t see anything serious. All in all, it wasn’t helpful diagnosis of LEMS.
Debbie
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Excellent advice! Thank you, Debbie
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This is very helpful esp since I’m at the beginning of this treatment journey. Having no idea of what medication I will have in my IVIG or what the next step will be, etc ….. this is good advice for prepping for my dr appts.
Thanks for the information!
Debbie 🤗
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These are good tips as I am planning on a couple of trios this year. One pretreatment and one post treatment. I suspect the post treatment trip may be more of a challenge depending on how well I do physically afterwards.
Debbie
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These are good tips as I am planning on a couple of trios this year. One pretreatment and one post treatment. I suspect the post treatment trip may be more of a challenge depending on how well I do physically afterwards.
Debbie
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These are good tips as I am planning on a couple of trios this year. One pretreatment and one post treatment. I suspect the post treatment trip may be more of a challenge depending on how well I do physically afterwards.
Debbie
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Hi Ashley,
I have Crohn’s/Ulcerative Colitis (apparently you can have both simultaneously – that was new to me last Nov.), Hashimoto’s hypothyroidism, diverticulitis, osteoarthritis and osteopenia.
Fortunately, I’ve been able to control my Crohn’s/UC via diet.
Debbie
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Hi Dawn,
Yes, he is. I’m scheduled for a Chest CT this Thursday, April 30. He’ll do another one in 3 mons and again in another 3 mons. Then if they all come back clear then he’ll do another one in a year.
It’s encouraging to know that the IVIG can help with the swallowing issue. Hopefully, it’ll help me to being able to form words. And maybe projection? There are days I think I’m talking loud enough but am being told to ‘speak up’. So frustrating.
Thank you for the encouragement. I’ll be looking at and participating in some of the other forums.
Debbie
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I’m in Olympia WA
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Hello everyone,
My name is Debbie Lewis. I’ve just received my diagnosis of LEMS last week. That really sent my husband and I through a loop, esp after doing some reading up on it. It’s a scary diagnosis. After 5 yrs of struggling it’s nice to have a name for what’s been going on inside of me.
For me, it started with intense fire at the base of my throat that made me feel as through someone was choking me. I would actually choke on my food! This was about 5 years ago. I couldn’t eat or drink without choking or having my food/drink regurgitating several times before actually going down and staying there. Sometimes, hours later it would regurgitate. From there it progressed to not being able to eat fruit, nuts, grains, nightshade veggies, etc. My diet now consists of chicken or beef stock with vegetable stock for 2 of my 3 meals. I can tolerate salads & steamed veggies, about 1 to 1 1/12 oz of meat & sometimes sourdough bread. What doesn’t help me is that I have sensitivities to certain foods that will kick off my Crohn’s. So I already had a very limited diet, now it’s even more so. Like I mentioned I also have Crohn’s & hypothyroidism, so fatigue isn’t a new thing or is problems with eating certain foods. However, this was different….
In 2017, I had my Lower Espophgeal sphincter (LES) stretched to help with a spasming esophagus. Helped some along with adding a calcium channel blocker. Then last year, July, I had another endoscopic procedure and had my LES stretched again. This time things went really bad for me. I was extremely nauseous, unable to eat or drink without making the nausea worse. Then my balance, which was never great, started to get worse. I now use a walking stick to keep me steady & feel safe walking distances. Or I would hold onto my husband. Last year, I could walk 5 miles in about 55-60 mins. Now I can’t do 2 1/2 miles in that time. I love to hike and challenge myself to walk faster, hike faster & further. I also used to lift weights now that just wears me out. I now find that any exertion causes me pain, I struggle to take deep breathes, my hands shake esp early in the day. Walking now fatigues my legs quickly. I wake up with my arms feeling like I’ve been lifting weights for hours! They’re so heavy. When I’m tired I’m starting to have trouble to focus. I also struggle to talk. I struggle to pick things up or hold onto to them sometimes. I’m beginning to have a small amount of salivation at the corners of my mouth. Dry eyes too. My voice leaves me or becomes very gravelly sounding. I can see the word in my head but I can’t say it or pronounce it correctly. Being a sign language interpreter this is a problem! I’ve cut back my hours at work because I don’t have the stamina I once had. I have decided to retire before my treatments begin. I’m slated to start IVIG in June because I want to go to GA to see my granddaughter graduate from HS at the end of May. If that hapoens. If not, we’ll celebrate her nonetheless. My dr doesn’t want me to be out around others when I start the infusions because of the suppression of the immune system. Again, my job would not work with that restriction. So for June/July/Aug I’m scheduled to get my IVIG infusions. So my quarantine will continue through Aug. My dr wants me to stay home during those 3 mons.
During my reading about LEMS I realized that the calcium channel blockers were not a good idea nor was taking magnesium both of which I’ve stopped taking. My husband & I feel that either the meds they used for sedation or the act of the stretching caused LEMS to come to the forefront.
I was encouraged to read that being able to walk, hike and travel doesn’t have to end. Life can and will continue. What it’ll look like is the big question.
I went through a series of tests before my Chiropractor suggested checking out the Vagas nerve. So I sought out a neurologist. After waiting 6 months, I got in. At our first meeting and listening to my symptoms he commented on seeing ‘fasciculations’ as was talking. He took 16 vials of blood and did a lot of blood tests. He told us at our appt that he suspected that my nerves weren’t ‘talking’ to my muscles to activate. It turns out that he was right.
Sometime in the next 2-3 months, hopefully, I’ll see a specialist neurologist who work with rare diseases. I’m still waiting for them to call and get that ball rolling. I’m also suppose to start working with an Occupational Therapist to help me to be able to swallow better.
I’m grateful to have this resource & all of you available to me. I get so overwhelmed with this and feeling like my life is over. Yesterday, was a hard day mentally. But now I know there is hope. I can, in turn, help my family know there is hope. Thank you. I’m looking forward to learning more.