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Wahls Protocol - autoimmunity suspected

Discussion in 'Your Living Room' started by Lawyer Mom CDN, Feb 10, 2024.

  1. Lawyer Mom CDN

    Lawyer Mom CDN New Member

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    Hello all. I am new to Menieres (2 months since onset) and new to this forum. I have experienced all symptoms of MM except for vertigo. ENT advises vertigo could be around the corner. Dizziness and nausea when ear pressure increases. Largely constant feeling of fullness and pressure that fluctuates between full and very full. Tinnitus fluctuates between a severe high tone (accompanied by sensitivity to sound) and a lower tone rumble and roar. Loss of hearing in the low range. Bilateral. Left is my good ear, right is the worst. I'm 33, a lawyer and mom of young children. My life has been turned on it's head. Holding onto God who is my hope in this life and for heaven.

    I've been prescribed Serc and Prochlorazine. I am not a good pill taker so Serc being 3x daily 6-8 hours apart is almost impossible for me. I've read through this forum and learned of JOH and the idea that MM could be a recurring viral issue. I've seen Benny Hill's vitamins. Went out and purchased both regimens and have been using for a few days. Thinking of asking my doctor for valtrex. I am aware this could also be a TMJ or upper cervical spine alignment issue, but I think it's very unlikely for me.

    I also have a sneaking suspicion that autoimmunity may be at play here. I have another diagnosed autoimmune condition (Ankylosing Spondylitis) and there is a load of autoimmune conditions in my family including MS, Lupus, and Hashimoto's. I have had about as extensive a blood work up done that the Canadian system can offer and everything comes up good. MRI is clean. I'm about to pay for a private genetic test to see if I have any issues with genetic mutations that might lead to deficiencies in vitamins etc. basically looking under every rock because as you all know, MM is terrible and I seriously need some relief and hope.

    So that's my background, but the real point of this thread is to let you all know that I have started the Wahls Protocol (1 week in) and I am hopeful it could provide some relief in the long run if my MM is truely an autoimmune issue. I bought the book years ago and did not have the willpower to stick with the diet and lifestyle changes. Well I definitely have the willpower now friends.

    For those who do not know what the Wahls Protocol is, it's a diet designed by a doctor of internal medicine who has MS. Terry Whals' MS progressed to the point that she was in a zero gravity wheelchair. She began researching study after study about the nature of MS and it's modalities. Using her diet and special rehab program she was able to walk again, continues to work at her hospital, swims, bikes, hikes etc.

    Wahls Protocol is not only an elimination diet. It is based on the Paleo diet, but includes high enough quantities of very nutrient dense foods in order to give your body what it needs to heal - so eating the majority of the vitamins and minerals you need rather than taking loads of supplements. And you will need to bring your appetite because there is alot of eating to do. The diet has been through clinical trials and the results Terry Wahls achieved have been replicated in study participants.

    I believe that our bodies are a deeply integrated system. So I'm going to try giving my body what it needs and take away the things that could be harming it. I'll be committing to this way of eating and intend to resume my previous exercise routine with some modifications. I used to weight train and I've recently bought a rebounder for lymphatic benefits (though right now jumping sounds like a bad dizzy idea).

    So I'll update you all along the way. I'm happy to be the autoimmune theory test subject here.

    Everyone suffering from MM is in my prayers. I serve a good God and I certainty have no control over this terrible MM, but I know nothing can separate me from his love. I pray he shows me the way out of this and in the meantime that I would have the patience, faith and strength to endure. God bless all.
     
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  2. Kevinb003

    Kevinb003 Active Member

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    Easy enough to set an alarm on your phone for 3x a day. Just mentioning to not give up on things that may help.
     
  3. Lawyer Mom CDN

    Lawyer Mom CDN New Member

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    Thanks Kevinb003, true enough. I stopped the Serc after a week because it was hurting my stomach and also I have never been a breakfast eater (Serc needs to be taken with food). I've still got it in my medicine cabinet and will definitely give it another honest try if some of these other treatment options fail to deliver. Thanks for the advice :)
     
  4. Paul101

    Paul101 Member

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    OK must have a look at this book
     
  5. Lawyer Mom CDN

    Lawyer Mom CDN New Member

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    Hi Paul101, I just ordered the book and cookbook and expecting it in today. Check back here for updates over the next 3-6 months. I think my aunt who has MS is going to join me. If it can help with something as permanent and severe as MS, maybe it'll do something for me? Wishful thinking? I'm not sure but I'll definitely be healthier so no real downside.

    - C
     
  6. Lawyer Mom CDN

    Lawyer Mom CDN New Member

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    FIRST WEEK:

    I'm one week into Wahls Protocol. I have not been 100% compliant in terms of getting the proper amounts/proportions of greens, sulfur containing veggies, and colored fruit and veg. Wahls says 3 cups from each group every day, but some people will have a hard time eating that much so it's ok to scale back so as to not overeat, but keep proportions from each group even. I've been fully compliant in terms of staying away from gluten, dairy, eggs, sugar, and pretty much everything else that's processed or not allowed. So I'll just have to make sure I'm getting everything I need to eat in moving forward.

    For those interested, I'm choosing the mid-level diet option called "Wahls Paleo", but if I do not see enough improvement in the next 3 months I'll go up to the next level "Wahls Paleo Plus" - which is pretty much a very nutrient dense keto plan.

    No improvement or change in symptoms to report at this early stage.
     
  7. JanieJiffy

    JanieJiffy Member

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    ---------------
    Thanks for your encouragement and reminder that all things fall under God's providence.

    I also try to follow the very difficult Wahls Protocol at least in part, along with taking Lysine. The diet is just awful-- NINE cups of veggies per day and almost no simple carbs! But even in following the diet in part, I see some improvement. Like you, I also have some mild to moderate signs of autoimmunity and am carrying some low-grade viruses, according to my naturopath.

    There is some suggestion in the literature that viruses can set off autoimmunity. It is very difficult to disentangle the 2 conditions.

    By emphasizing veggies I have seen my blood sugar nicely stabilize. That's also a factor in ear fullness.

    Keep us posted!
     
  8. Paul101

    Paul101 Member

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    Yes not know
    Yes u have try something. I have lost 50% hearing in both ears and am still waiting on ent now over 8 months let me know how u get on I hope ur lucky with the diet
     
  9. Lawyer Mom CDN

    Lawyer Mom CDN New Member

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    JanieJiffy,

    Thank you for this response! Yes, God is in completed control. I listen to a lot of John MacArthur sermons (and in fact run the continuous stream of sermons from the Grace To You app at night when I'm having a particularly bad time and need background noise to sleep) and once heard him say that Christian joy is the emotion springing forth from the deep down confidence that God is in control of everything and he is working it for our good in time and or glory in eternity. I hold this truth tightly. I am being tested like never before during this MM trial. It's certainly revealing much to me about my faith and trust in God. I definitely struggle with sadness and fear about the future now, but I try to leave all of it with the Lord as best as I can.

    I have also suspected that the autoimmune and virtual aspects of MM are intertwined. I'm hoping to try valtrex soon, but will also continue with Wahls. My hope at this point is that perhaps the valtrex can get me out of this immediate trouble and for Wahls to heal my system to prevent MM moving forward. I would like to avoid using any medication lifelong. But only time will tell where God leads and what he allows.

    Also agreed that Wahls is quite hard to follow - at least at first. I can only do 6 cups of veggies (greens, sulfur based, coloured) - 9 cups is just far too much for me. I am also fasting for close to 16hrs a day. So not a large eating window to get all those cups in.

    Have you noticed any improvement in your MM symptoms specifically that you think are attributable to Wahls? Stay the course, I think there's something to it.

    -c
     
  10. Lawyer Mom CDN

    Lawyer Mom CDN New Member

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    Paul 101,

    That's terrible that you'd have to wait that long for an ENT. Hearing loss is an emergency and I'm telling it to everyone who will listen (doctors especially).

    Hopefully when you see one they can offer you some real help! How long have you had issues with your ears/hearing? My family doctor was away for a few months when all of this started for me. He's back now and funnily enough I think he'll end up doing more for me than my ENT.

    Take care and don't lose hope!
     
  11. JanieJiffy

    JanieJiffy Member

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    --

    Hi Lawyer Mom,

    Interesting you mention John MacArthur. I go to as John MacArthur-based church-- the pastor is one of his proteges. Because I am one of the "oldies" -- almost 77-- I too must to think about my future destiny, besides the reality of the decline that comes from MD. It is actually a blessing to have to get right with my creator, face up to and repent for wrongdoing, and move forward by living differently.

    I looked into Valtrex but it does have some effect on the kidneys and so I prefer to work with Lysine at this point.

    I have indeed noticed an improvement in symptoms from a change in diet. Very good blood sugar levels, far less brain inflammation (sometimes even chewing something crunchy could put me into vertigo), and greater exercise tolerance. But I still feel very "discombobulated" on days when the barometer goes up and down. That makes it hard to plan things ahead of time because I do not know how I will feel in the day ahead.

    Nature is my connection with the eternal, so engaging with the outdoors on an active level is something I do not want to lose.

    Keep us posted on your progress.....!
     
  12. MrE

    MrE Active Member

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    @Lawyer Mom CDN I've been meaning to post a note but was waiting to get in front of a real keyboard. As a fellow Canadian, I know all too well, the strengths and weaknesses of the Canadian healthcare systems. It's one of those things that you don't realize how challenging it can be until you really need it. My Meniere's came on about 2 years ago and if I didn't advocate for myself and go to the US for some treatments I would have made very little progress. That said, if there's anything I can do to help assist you manage this disease let me know because I have tried just about everything, and humbly speaking I know a lot of the ins and outs now.

    You mention a suspicion around autoimmunity. Have you investigated Low Dose Naltrexone (LDN)? I'm not a doctor, but there are reports out there where it's been quite helpful for some sufferers. I started taking it in May 2023 and I noticed a positive improvement in some symptoms within about 2 weeks. Why LDN helps some people with autoimmune issues isn't fully known, but it is believe to regulate bodily responses which helps alleviate some inflammation. I suspect that's why it's helped me somewhat - just as prednisone and SPI-1005 has helped - all of which are anti-inflammatories.
     
  13. JanieJiffy

    JanieJiffy Member

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    Naltrexone sounds scary since it is used for substance abuse addiction... and what I am reading, says it can have dizziness as a side effect. Interesting that it has helped some people.

    What were the treatments you got in the US? I had no help at all from any ENT here; some wouldn't treat MD because it is such a puzzling disease, others suggested things I knew were wrong to do, like "drink less water" ...another said to go on a diuretic which did not help and isn't so great for the kidneys of an older person...the best help I have gotten so far is to go on an anti-inflammatory diet -- a modified version of the Wahls Protocol. That diet even ended my need for a regular chiropractic adjustment because I didn't have the tight neck muscles any more that had been pulling my cervical spine out of position. Since I have been on the diet I still have intermittent instability, especially during weather changes, but no more vertigo.
     
    Last edited: Feb 21, 2024 at 5:18 PM
  14. MrE

    MrE Active Member

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    LDN for the use that I'm describing is very low dose, most people top out at 4.5mg once per day, compared to the use for substance abuse addition where people tend to take 50mg or more. Again, it's well understood how it helps people with addictions, less so for other uses, but it seems to help people including myself. Your mileage may vary.

    Unfortunately, this condition is rare and some doctors have never encountered it. Being in Canada, the reality is that there's simply less people, and less people that have Meniere's. That further thins out the pool of expertise. As an example, my GP, has been in practice for almost 40 years and I'm her second patient with Meniere's. One ENT I went to never treated anyone with the condition. Another didn't want to listen to any of my case history and simply said I had sudden hearing loss (I wish I was so lucky).

    I've consulted with two US doctors, one of which, along with his father, pioneered the research that one of the major causes of the disease is viral (look up Dr. Gacek). I took an antiviral for 8 months with no change that I could attribute to the drug. I also participate in a clinical trial for the drug SPI-1005 which takes me to a doctor in Florida who has a ton of experience treating patients with Meniere's.

    I have treated just about ever theorized cause of this disease with the exception of TMJD, which I'm about to start since I've suffered from that for longer than I can remember.

    My treatments so far:

    Antiviral (Famvir for 8 months, L-Lysine as well, no longer taking)
    Diuretic (2 months, no longer taking)
    Low Dose Naltrexone (ongoing for past 8 months)
    Prednisone (I take this when my hearing in my good ear dips)
    Upper Cervical adjustments (ongoing)
    SPI-1005 (on 8 of 12 month trial)
    Betahistine (16mg x 3 times daily for 1 month. I might try this again, I stopped it because I was sick with an unrelated illness)
    HBOT (hyperbaric chamber oxygen therapy, 28 treatments)
    Lots of different vitamins (look up John of Ohio regimen)
    Medical medium diet
    Acupuncture (ongoing)
     
  15. JanieJiffy

    JanieJiffy Member

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    Wow, you should have been a medical researcher, not a lawyer, with your perseverance in finding a cure... you will be the ultimate test case on this message board....

    One thing I would like to add is that not all chiro treatments are equally effective. I have been helped only by a Palmer Method practitioner who uses a nerve scanner and drop table (the headrest drops slightly under pressure during the adjustment so as to minimize jarring). He makes the adjustment with a quick"karate chop" with the outside of his hand that is carefully targeted to the spot identified by the scanner. No twisting of the neck.

    If you have TMJD, then an anti-inflammatory diet should help with that too.
     

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