I’m happy to convey this time the reason I’ve been so lax about posting hasn’t been because I’ve been ill. I haven’t been writing much because I’ve been so busy focusing on optimizing my protocol and my own health. The results have paid off! So I’ve been spending all my energy on rebuilding my strength and getting my life back in order rather than talking about ME/CFS, FM and my ever growing suspicions that I have EDS, inherited through my maternal line.
Slowly but surely now that I have the right combination of medications, vitamins, and supplements, I am able to remain upright longer and be more and more productive each day, mentally and physically. I’m also enjoying a newfound emotional stability that I haven’t been able to enjoy since my illness began to consume my life way back in 2010.
I’m still tweaking dosages for optimal health and I have a ways to go to get to a normal baseline (if that can even be achieved for me after 15 yrs), but this has gotten me a great deal more time out of bed, much improved vision, far fewer and less severe headaches, muscles spasms, greatly reduced the number of paroxysmal dystonia seizures I have, almost completely cut my nausea while increasing my appetite, greatly reduced my pain levels, fatigue, confusion, cognitive and memory dysfunction, depression, anxiety, insomnia, dizziness and light sensitivity. In whole, it has improved my quality of life exponentially while giving me a chance to get moving again and rebuild a little of the muscle mass I have lost (which is a lot).
Additionally, it’s giving me the chance to care and do for myself and my home a little more, which is so precious to me. You just don’t understand how precious these tiny little things become until you are robbed of them completely. Just being able to bathe myself the first time was a major triumph. Last evening, we had dinner out and went browsing in some shops and walking along the Ohio River. We spent 3.5 hours out and although I was really feeling it by the time we got home, I knew how to counteract it. That translates into another great day today, with energy to do some housework and enough left over to cook dinner for my husband for the first time in probably more than a year.
I hope the neuro-muscular specialist I see at the end of July will help me to improve even further, faster (if such a thing exists with ME), but I couldn’t be more pleased with the shift in my health right now. I’m hopeful this time it will prove more lasting, as my husband is back to work and we have the steady income to ensure I can not only keep everything I need in stock (medicare and medicaid won’t pay for much of what I take), but that I can add whatever else I may need in the future. Based on my history, I know I will have to carefully monitor my health and will probably have to regularly adjust my dosages and possibly continue to look for new and interesting ways to combat this disease. These are only a few of the ways I can think to do that, short of moving to a major metropolitan area complete with one of the top ME/CFS experts in the country.
I will also have to respect the boundaries that my body and these illnesses set, which means no more physical activity than I can actually handle in any given day. This can feel severely restricting and quite frustrating especially when you feel about 90% better than you have in the last two years, but without it there’s no point in doing any of this other stuff. That’s why I’m raffling off five free downloads of the new and exciting Ease ME/CFS Helper App and recommend anyone with ME/CFS or another mitochondrial disease use such an app to help them determine what level of activity is right for them and ensure they continue to maintain it.
If you decide to try any of these drugs or this protocol on the whole, I urge you to remember that we are all individuals with individual problems with the need to adapt things for our own bodies. I will say though that I find these all to be quite safe, as our body either manufactures or gets them from a regular diet and I have no problem recommending them to anyone: However, if you have any particular allergies or dietary restrictions of any kind, you want to carefully consider whether or not these are right for you and be sure that the product you choose is free of any allergens you may have. You also want to make sure they interact well with any medications you are on and let your doctor know you take them. I don’t clear every single thing I do with my doctors, but I always let them know I’m taking it. I only start one new treatment at a time with at least two weeks apart. This way if I do have an allergy or problem with it, I know right away what it is.
So here’s what I’m taking, along with the dose and schedule, what it does or prevents, and what form I take it in. I will also include links of the particular kinds I take of some of the more unusual stuff to give you a jumping off point and I think they are affordable, quality products that I chose very carefully, but I urge you to make your own choices.
|L-Glutathione reduced, capsule||500mg||1x noon||For energy production or ATP. See this article. I am switching to whey protein, as I feel I may be missing out on some of the somatic benefits by taking the glutathione supplement. It will also eliminate the need to take some of these other supplements separately. I’ll let you know how it goes!|
|Curcumin, capsule||665mg||1x a.m.||See my article on the wonders of curcumin and how best to choose it. This stuff is truly amazing and a must have no matter your level of illness. You csn also get more specific informationon all it treats here.|
|D-Ribose, powder||5g||2x a.m., noon||For energy production in the cells that make up the muscle. I will take a third dose if I’ve depleted my energy beyond what’s safe and feel a seizure or other ill effects coming on strong. See more info, here.|
|Oral Rehydration Solution, powder||1 packet in 1 ltr water||2x spread over day||For Orthostatic Intolerance. See my article on OI and ORS.|
|Acytl L-Carnitine||1g||2x a.m., noon||Energy Production. I can repeat this a third time as well, in an emergency situation. Combined with the D-Ribose, it calms everything down within 45mins-1hr. Read more here.|
|Vitamin C||1000mg||1x a.m.||Immune booster, also helps to process Carnitine|
|B complex with Additional B6 and B12||1x a.m.||B complex helps process Carnitine. I also always test low in B6 and B12, which can contribute to additional health concerns, so I take additional amounts. B complex offers very small amounts of these. Some doctors say they don’t process in pill form, but they do for me.|
|L-Lysine||1000mg||1x am||I should be taking this to make the carnitine easier to process, however it is also in whey protein, so I’m going to try that instead.|
|Vitamin D3||5,000mg||1x a.m. + add’l dose 4x per week||D3 deficiency. Most people with ME/CFS and FM are deficient in D3 and should be tested. You need to be tested regularly, as it is possible to have too much, as well. This is simply how much I personally require to stay in regular range. I have to be tested every 6 months.|
|Probiotic w/ Prebiotic||10 billion/ 15 strain||1x a.m. or up to 3 x a.m., noon, p.m.||An excellent probiotic with prebiotic is absolutely essential with ME/CFS and FM. I absolutely cannot maintain any sort of regularity without it and am constantly sick if I’m not taking one. This is the first line of immune protection and gastric health. I will be writing more on this soon, I hope.|
|Miralax||as needed||1x noon||Even with a great prebiotic, I still deal with constipation on a regular basis, probably because I still struggle with low blood volume and poor water management in my body overall, but also due to the EDS and because I’m losing feeling in my abdomen, which means I’m also losing nerve induction. Your doctor can prescribe this so it will be covered by insurance, medicare/caid|
|Magnesium||250mg||1x a.m.||deficiency, migraine prevention|
|Medical Marijuana (mmj)||Whole bud, Vaporized||As needed, usually 1-2x at bed or if I wake mid-cycle||pain relief, anti-nausea and hunger inducing, controls muscle spasticity, seizures, headaches, nausea and prevents insomnia. I would never sleep without it. See my post about it, coming soon.|
|Meds prescribed by doctors||These of course are things you’re going to decide with your doctor, but here are a few things I take that might help you; an additional anti-inflammatory, a blood volume expander (midodrine), muscle relaxer, toradol and tramadol for pain (neither are opioid or habit inducing), a mild anti-inflammatory, allergy medications.|
To help you decide about what doses you might start off with or how much of this stuff you might need, I’ll tell you just a little about my own. Untreated or while missing almost any one of them, I am in the severe category. I am forced to spend the majority of my time lying down because of my dysautonomia and being upright and/or expending too much energy greatly exacerbates my symptoms. These drugs, combined with rest, keep my symptoms down under a 3 on the scale of pain and symptoms. With their help, after being on all of them for approximately 2 weeks at the dosages listed, I only need to lay down on occasion. Without them, I am unable to tolerate sitting, standing or walking at all. Indeed, I can barely stand to exist and suicide is almost constantly on my mind. Just three years ago, glutathione and the vitamins listed was enough to keep me going, though. My recommendation is to start with either whey protein or glutathione and curcumin and built on through there along with whatever vitamins and minerals you need. A healthy diet free from processed foods and artificial sweetners can really go a long way, too!
Best of luck! Please don’t hesitate to ask whatever questions you may have. I have this blog because I really truly want to help others!