Homeopathic Remedies

[Lori Dunham]

Our 14 year old daughter has lems (newly diagnosed this past August).  I would love to know what the CBD oil helps with and what essential oils you use.  We are new to all of this.  She started ivig in November and it has made a huge difference for her!!!

[Ashley]

Hi Lori!

I just started using CBD oil about 6 months ago (during the IVIG shortage when I did not get treatment). I have noticed that it definitely helps me with my mood and feeling less “crappy” overall. I don’t have a lot of chronic pain, but when I am having pain, I have noticed it helps with that also. I buy several different forms, I use a capsule in the morning to get me through the day and then at night, I use the CBD oil sublingually under my tongue. I find it definitely helps me get to sleep when I am having issues falling or staying asleep. I get solumedrol with my IVIG and often find myself stuck awake for hours but have found the CBD oil to be one of the only things that allows me to get some sleep on those days. I would just advise you to be sure you buy from a reputable source that independently tests their products so you don’t waste your money! I have a great website I use to purchase mine and they also give a discount to military and first responders which is awesome! I will be happy to share that with you if you are interested!

I have a few different oils I use regularly. I love to diffuse lavender and an oil blend called “serenity” on the nights I get my IVIG because it also helps me to relax. I will also add a few drops of peppermint in there if I have a bad headache, or can also rub it (peppermint) on your temples and the back of your neck to help with headaches. I also swear by an oil blend called “Thieves” or “On Guard” (depending on the brand you buy).  I use this year round, but especially during cold and flu season to prevent me from getting sick. The oil blend was using during the plaque time period in the spice trade, and was one of only things that “prevented” the traders from getting the plaque. You can diffuse it, but they also offer a solution you can use to clean with and you can also ingest it.

If you have any more questions, I would be happy to answer them!

I’m so happy to hear that your daughter was able to start IVIG! It was definitely a game changer for me also! I know how hard it can be to be young with chronic illness.

[Lori Dunham]

Thanks so much Ashley for the information.  I would love the website for the cbd oil.  My husband is active duty military so the site that gives discounts would be great.  Grace has always had trouble falling asleep, staying asleep so maybe the essential oils or cbd oil would help that.  I’m willing to try anything.

Yes, IVIG has been wonderful for her and I am so encouraged to see people like you who are able to work full time, have a full life…thank you for sharing your story.  It is very encouraging to me, as I’m sure it is for many.

[Ashley]

Lori,

No problem! I am glad to help you! the website I use is called greenroads.com

To get the discount, you just have to create an account. The directions are on this page: https://greenroads.com/pages.php?pageid=856

I hope either of these will help Grace as sleep is extremely important to us with chronic illness and helps our body heal and reset itself! The website has a lot of information about its products and also offers them in gummy form, which may be something Grace would prefer. The oils often have a funny taste to them and it takes a little getting used to.

I’m happy to have encouraged you! IVIG has truly given me my life back, and I have no doubt that it is the only reason I am still able to work full time. I also am very stubborn and refuse to give up on my career at this point. It is definitely possible to live a full life and achieve your dreams with LEMS. I know a couple of others who are also my age with LEMS and still able to work full time! Let me know if you have any more questions or anything I can help you with!

[Carmen Willings]

Love this topic, Ashley! I have started ivig treatment, but I am also using homeopathic strategies as opposed to some of the medicine options for LEMS (I’m concerned about the side affects but I also have a seizure history which makes me concerned about taking them). Great idea abou the CBD oil. I had read others post about using Benadryl and NSAIDs before and after ivig. I’m trying to stay away from those as I started following the Autoimmune Paleo Protocol (highly recommend!). I have all the DoTERRA oils – but sometimes forget to use them consistently outside of my normal routine. I will try taking Copaiba (similar to the CBD oil) before my ivig next week and see if that helps. I also saw others recommend electrolite drinks. I’m going to try that as I’ve just been hydrating with water. I am stearing clear of sugar with AIP so I’m going to try Coconut water. I wonder if they would allow me to diffuse oils during my treatment?

As far as difficulty with sleep, I diffuse Serenity every night. I take the Serenity capsules and when I’m having a particular difficult time sleeping, I make my own capsules with 4 drops of lavendar and 2 drops of frankinsence – knocks me out completely!! My husband also massages essential oil blend protocols on my spine each night. I make a neurological blend, muscle blend and a third that I rotate depending on symptoms.

I’d love to hear more about homeopathic remedies others are using so I can incorporate them into my routine. Thanks again!

[Ashley]

Carmen,

I’m glad you enjoyed this topic! 🙂

I have heard of some having good results with the AIP but I have also heard that some did  not see any change from the diet. I have not personally tried it yet, it’s a little too restrictive for my taste but I do try to limit things that I know are triggers for me.

I am also fond of doterra oils, but haven’t used them this year as much as I used to. I am familiar with copaiba oil and used to use it frequently as well. Frankincense is my most highly used oil though! Which oils do you include in your neurological blend and your muscle blend? Have you used their deep blue rub? I have found that very useful when I have pain, especially for my legs!

[Carmen Willings]

Ashley, agreed! It is the most restrictive diet I have followed to date (I have to be GF for Celiacs and this makes that seem easy! I’ve also done Keto and numerous other diets in weightloss attempts). I think it depends on how strictly you follow it for success. That being said, I notice great improvement in some symptoms, but not as big differences in others. I’m hopeful the longer I follow it, the more it will impact my overall health. I do still get tingling in my leg but that is significantly less than I was experiencing. The peace in my gut is the most significant along with not getting chest pain with walking up stairs and inclines. I have noticed no change in my raynauds to date.

My sister got me hooked on DoTERRA during my big flare up in 2016. I craved the Peace blend and Vetiver! I switched over to their vitamin supplements as I figured I would be buying supplements anyhow. I really trust this company and I can earn points to afford the oils I otherwise couldn’t afford using points. I forget to use the oils for ways outside of my usual use – but I’m trying to be better about it! Especially since I’m trying to avoid OTC medications and my doctor has taken me off of so many because he felt they were making the LEMS worse. I had ivig yesterday and today. I prepped each day with 4 drops Copaiba and 2 drops Frankincense in a veggie cap. I also had a “Benadryl” veggie cap each day of 2 drops lemon, 2 drops lavender, 2 drops melaleuca and 2 drops peppermint. I have the ginger drops for any nausea.

I have the deep blue rub but I don’t  use it as often as I should – simply because the smell is pretty strong! Have you heard of the Symphony of the Cells? I knew my husband would never do the full protocol! haha! So instead, I put the oils of the protocols in roller bottles with fco and he massages my back every night before bed! Here is what I put in the bottles:

Neurological blend in 10 mL roller bottle: 8 drops DDR (I ALWAYS use this in every blend as it repairs damaged cells!), 6 drops Frankincense, 6 drops Thyme, 6 drops Clove, 6 drops Aroma Touch, 6 drops Lemongrass, 6 drops Melissa OR Arborvitae (Melissa is crazy expensive so it depends), 6 drops Patchouli, 6 drops Bergamot, 6 drops Peppermint. Top with Fractionated Coconut Oil (FCO)

Muscle/Inflammatory blend in 10 mL roller bottle: 8 drops DDR, 6 drops Melaleuca, 6 drops Wintergreen, 6 drops Aroma Touch, 6 drops Lemongrass, 6 drops Siberian Fir, 6 drops Helichrysum, 6 drops Deep Blue, 6 drops Peppermint. Tope with FCO

LEMS is so rare, I can’t find a protocal for it – but I did see a listing for Myasthenia Gravis so I may pull together those oils and give it a try!

If you don’t have someone to massage in your spine, use it on the nape of your neck, across your temples and on your big toes. Although the massage is nice, these are great locations for absorbing the oils. 🙂

[Dawn DeBois]

Carmen,

I’d be very interested in what the Myasthenia Gravis listing includes for essential oils!

[Carmen Willings]

The Myasthenia Gravis oils are listed in “The Essential Life 5th Edition” book I have. Recommended oils: helichrysum (topical or internal use), ginger (topical or internal), lemongrass (topical or internal), cypress (topical only), DDR celular complex (topical or internal).

[Dawn DeBois]

Very interesting Carmen, thank you!  I hope you are doing ok with the after effects of this week’s IVIG!

[Carmen Willings]

I ended up getting a monster migraine and low grade temp. I ended up taking Excedrin and really hope I don’t have any set backs after short term use of it! Ugh!

 

[Dawn DeBois]

Carmen, I’m sorry to hear about the migraine. It is something that often happens with IVIG. It’s all the proteins and antibodies being dumped into your bloodstream that brings it along. My neuro added 500 ml of saline before and after each infusion, as well as benedryl and Tylenol during and for a few days after kept things managed, especially once I knew to add electrolytes during and fir days following. Also, keeping your rate super slow helps to minimize.

I’ve never read anything about NSAIDS possibly adding to muscle weakness in Myasthenic conditions like LEMS.  That’s interesting and I hope you don’t have any issues. I’m on a prescription NSAID to keep my psoriatic arthritis from destroying my joints and have never had an issue. There is a list of meds and supplements for Myasthenic to avoid on the MGFA website.

I hope you start to feel the benefits of your infusions soon!

 

[Carmen Willings]

Thank you, Dawn! My neurologist added the saline before and I asked the nurse if she could give me extra after as well. To briefly vent – it is frustrating that I have to keep asking for a slower rate (120). If only they could have the information in the system and not debate it. Maybe they are anxious to go home?? My Monday nurse was great, but the nurse on Tuesday kept challenging my request and saying that once I get used to it, I should be able to “handle it”. This was also the nurse that stuck me repeatedly, said my veins were rolling and couldn’t get the needle in even after using the vein finder (mind you my veins look like they are on top of my skin!) so her challenging my request for a slow rate was really frustrating. Thankfully the head nurse came over and rescued me with one prick. Wish we could request nurses… *sigh*

You said you take a combination of Tylenol and Benadryl. Why the Benadryl? And do you find Tylenol to be better than Motrin or Excedrin? Just curious. Yes, my hemotologist took me off of asprin because he felt NSAIDs could be contributing to muscle fatigue and LEMS symptoms. He explained in technical terms that I can’t pretend to remember. I will ask again at my 6 month follow up. My cardiologist also told me to not take my heart medicine prior to the ivig so I didn’t take it those days. In hind sight, perhaps I should have taken it afterwards as going without for two days could be contributing to my headache. Just hoping I can find the magic combination for my next dose of ivig! At any rate I’m hopeful that since I’m feeling the negative affects – the positive ones are right around the corner! 🙂

[Dawn DeBois]

Hi Carmen,

What you described with the nurse on day two trying to stick your IV, that’s exactly why I’ve started the transition to SubQ. It started getting really difficult because the longer you are on IVig, the tougher it is to get your veins. The product is thick and it takes it’s toll.  I would have requested a port- which I really didn’t want- if I hadn’t changed.

As far as the rate that works for you- unfortunately, some places do try to push patients through. I learned to be very tough and straight forward, as well as watching the numbers on my IV to make sure nothing was being pushed faster. I reminded them that I was the one that would pay the price if it went too fast, usually with a killer headache at 2 am. For me, I experienced a few severe drops in blood pressure and chest pressure that scared my nurses enough to know not to push me to go faster. My top rate was 156- but that was after a slow progression up from 60, then 112, then finally 156.

Acetaminophen  (Tylenol) helps with the inflammation/reaction that your body can have to this foreign product being injected for hours into your veins. The same for benedryl- It helps prevent an allergic response by your body. I learned that if I kept taking both preventatively for a few days following my infusion, until my body had settled,  I didn’t get quite the same level of reactions.  When I discussed this with my neuro, she told me that Benedryl is always added to the cocktail that is given to head pain patients in the ER. Something about it helps to alleviate that level of pain.  It also leads to people sleeping more- which is difficult for IVIg’rs who are working.  I didn’t need to do this protocol after my subq last week. I only took a couple of acetaminophen’s sporadically for a lingering headache that happened a couple of times in the days after. The headache’s severity didn’t come close to the post IVIG migraine!

[RDT]

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.

[Ashley]

Rebecca, How did you find out you have impaired detox pathways? I would be really interested to find this out about myself! What else do you put in your detox bath aside from Epsom salt? I haven’t been much of a bath person, I wish I was. Last time I tried them, it flared my POTS because I enjoy them with really hot water and don’t want to change that! What essential oils do you find help you the most?

[Ashley]

Carmen,

First let me apologize for the length of time it has taken for me to respond to you! I am truly sorry! These couple of weeks have been rough for me because I injured my shoulder at work and have been in physical therapy a few nights a week on top of my regular schedule and I’ve found myself very stressed about multiple things mostly work because we are currently short staffed. With that being said, I have been feeling a little less “healthy” than my normal and have been struggling a little bit as of lately.

I’m sorry your last treatment didn’t go the best with difficult IVs and the migraine. I used to get stuck about 6-7 times to get an IV before I got my mediport placed. It was a nightmare, and left me anxious every month wondering if they were going to be able to get an IV. I do agree with Dawn in saying that our veins do get worse with IVIG or any treatment, although I was never an easy stick even before my diagnosis. Getting my mediport was one of the best decisions I have made so far, although I drug my feet and it does come with it’s own risks.

How much saline are you getting with your infusions? I have a history of migraines before my diagnosis and usually get them pretty severely, although I have found some things that really help me. I get 500 of IV saline before and 500 after my infusion, this has really helped me a lot! I also get a pre-medication cocktail that includes solumedrol, Benadryl, and Tylenol. I have found that the solumedrol really kicked down the severity of my migraine when I started getting it. It may be something that it worth trying for you, although I know you prefer to use homeopathic methods if you can. I also take 600 of ibuprofen around the clock on my infusion days.  I end up with a pretty low grade fever on most days and I believe that is to be expected.

I’m sorry your nurses are pressuring you to change/increase your rate, they should definitely not do that! I would stand your ground and be firm with them. It’s not worth you suffering overnight because they want to go home a little earlier- or whatever the case may be. I would just tell them that you already get a migraine after and do not want to make it worse. It is a known fact that a higher rate will increase the chance of a migraine, and your body doesn’t just “adjust.” If they continue to pressure you, I would encourage you to talk to the charge nurse or manager privately, or request the nurse that you know you like. This is a possibility, or you can request to not have the nurse that pressures you.

I’m interested in hearing why your cardiologist asked you not to take your medication during treatment. My cardiologist has never advised me of this, and I take all of my medication normally. I do have normal than lower blood pressure and it does drop a little with IVIG but that is expected. If your blood pressure is high during treatment, this could definitely be attributing to your migraine as well.

 

[Carmen Willings]

Ashley, thank you for all these suggestions. It is just one nurse that pressures to increase – same one that pressured back in October. The other nurses have been great! I’m still having neck ache and some headache a week later – nothing like last Wednesday/Thursday. I’m feeling a bit discouraged at the moment hoping the side effects are going to end up being worse than the LEMS symptoms. I have a seizure history but never had migraines prior to ivig. I will give it another try but may request to stop if this is what I have to look forward to each time. I had really been hopeful this would be a good solution. *sigh*

[RDT]

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&gt;)

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&gt; )

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.

[Dawn DeBois]

Rebecca,

You certainly are a wealth of information in the natural remedies topics! I wanted to caution you, and any other LEMS patients reading this, that Epsom Salts are made of Magnesium Sulfate, and thus can cause an exacerbation of weakness i LEMS or Myasthenia Gravis patients. Magnesium is our kryptonite! As you  mentioned, everyone reacts differently so maybe Epsom Salts don’t cause you any issue; but I wanted all of our readers to be aware.

Thank you for all of your info on detoxing!!  I have changed to a whole foods diet, working to eliminate additives and preservatives as much as possible. Your info makes me think of taking things one step further with detoxing things that are already in my system.

[Dawn DeBois]

Carmen,

I hope you are feeling better this morning and less discouraged. I do know the side effects of IVIG are tough to manage through; but I also found clear benefits on the other side of recovery. I hope you find the same.

I’m still doing very well with administering my immunoglobulin g subcutaneously and can’t wait to share my “results” with my readers because perhaps that is going to be a good option for those that just can’t deal with the side effects. of IVIG. I haven’t needed any Tylenol or Benedryl since I infused last Friday.

Sending you good thoughts my friend!

[Ashley]

Carmen, I’m so sorry you’re feeling discouraged. I haven’t had a headache last that long from IVIG to be honest. I usually have a small one for the first weekend after treatment but it is usually tolerable for me. Have you considered trying the IVIG with the Benadryl and Tylenol to see if you have better results? I have a feeling that it will make a big difference for you.

 

[Ashley]

Rebecca,

I am familiar with the MTHFR gene mutation, but have not been personally tested for it. I am interested in hearing more about this and appreciate you sharing your wealth of knowledge. What kind of detox methods do you preform daily?

I also have Sjorens and a few other autoimmune diseases.

As I said earlier, I have never been able to enjoy a bath, as it exacerbates my LEMS and dysautonomia, but I do know that magnesium in Epsom salts can cause serious issues for us with LEMs because it can worsen our muscle weakness. How do you feel after your baths? Just being in hot water for a prolonged period of time can cause weakness for me.

I also know the feeling of being immunocompromised. My body has a tendency of harming my white blood cells and without my IVIG, I have seen my neutrophil count (the white blood cells that specifically fight infection) drop to 0.5 which is extremely low. Luckily, IVIG keeps my numbers up and I actually haven’t had any sort of sickness/virus since starting my treatment several years ago (I’m knocking on wood right now…).

I’ve ingested oils from Doterra in the past and I found them helpful, especially for nausea. I use to add a couple of drops to my water as natural flavoring also when I was using them more. I’m also a big fan of Frankincense and Copaiba. I really loved their Digestzen blend which helped a lot with my acid reflux when I had symptoms on top of taking my prescription meds.

I do want to caution you and any one who uses Tea Tree oil that it is extremely toxic to animals and can be lethal if ingested, or in some cases even inhaled so be very careful using this if you have any animals at home.

I’m sorry you feel IVIG made you ill. Personally, I have not experienced anything like that before and haven’t had anyone I personally know experience “getting” something directly caused by IVIG. Honestly, it has been a lifesaver for me and has given me my life back. Without it, I definitely would not be as high functioning as I am and the risks clearly outweigh the benefits. I have also been lucky enough to not have aseptic meningitis after an infusion in the almost 4 years I have been getting IVIG (knocking on some more wood) and I do not know many who have gotten aseptic meningitis from IVIG because it is truly rare. I’m sorry you had to go through that though!

[Carmen Willings]

Dawn and Ashley, thanks for your well wishes. The brain crushing migraine lasted a day or two but I had a mild ongoing head/neck ache for a solid week after. I still have a neck ache but I’m beginning to think that is positional and from sleeping wrong. I plan to try Benadryl and Tylenol prior to the next infusion and see if that helps. If not, I will reach out to my neurologist for suggestions and other options. When do you both start taking the combo? Right before? A day before? What dose/frequency? Desperate to not have a repeat!!