@dannybex Thank you so much for your detailed response. I’m so sorry the treatment made things worse for you. Are you doing any better now? I hope so. I was told IGeneX was the best test you could get. My son tested positive on three bands for lymes on the Western blot test so his functional doctor recommended the IGeneX test. It’s so hard to know what direction to go with this illness. It’s easy to fall prey to scams because modern medicine hasn’t, up until recently, taken much interest in it. We are left to sort through all the supposed treatments and theories in hopes it’s sound and produces positive results —oftentimes a gamble that doesn’t pay off in the end —it’s very disheartening. Thank you again for sharing your experience with me.
Not doing good at all right now (due not to ME/CFS, but untreated anemia that I mistakenly attributed to ME/CFS and a lot of extra stressors, one after the other, in 2023).
In hindsight, the anemia probably started around June, but I was also dealing with an ulcer/wound on my foot from venous insufficiency. It would sting really badly at night, so I stopped the b12oils and methylfolate (etc), thinking they might be making the stinging worse – which was a huge, huge mistake. Turns out I was getting hardly any folate in my meals, not to mention iron, so by December I crashed as hard as anyone can – and ended up in a wheelchair for the last 10 weeks – lost a lot of muscle that I barely had -- plus a week in the hospital, and now in an adult group home. Not exactly what I’d planned for this year.
I’ve had this illness/disease/condition for 25+ years, and was able to go into remission a couple times early on, and semi-remission up until about 2005. But when I ran out of funds, stress went waaaay up – plus there were a few years of quacks – including Klinghardt’s 2nd in command as noted earlier – that contributed to the worsening, and kind of spooked me off of methylation…for about 7-8 years.
Still, after about a year or so of slow but steady improvement, by late 2021, I was able to walk/climb up to the 5th floor of my apartment building, walk around the perimeter, walk down the steps to the mailroom on the other side of the building, then back up to the 5th floor, and back down to my apartment on the 2nd floor. I could walk into stores or banks and stand in line without worrying when the pain and weakness would set in. Overall, a 70% improvement that lasted about six months.
The mistake I made was thinking I didn’t need the supplements anymore. So I took less of them, and also cut back too fast on the clonazepam I was taking…and here we are.
But despite the rather dire circumstances, I know I can get better. Certainly not as fast as I’d like, but I have no other choice. The ulcer/wound on my foot has healed, and just yesterday I walked 15 feet with a walker for the first time in 10 weeks, something I couldn’t have done even a month ago. Still iron deficient, so a lot of restless legs and lack of sleep, but I’m committed to turning this around.
Aren’t you glad you asked? 😊
Anyway, I mention this only to counter the reports or studies that say “Only 5% recover”, or “if you’ve been sick for more than 5 years”, you might as well just give up, or something to that effect. There are many like me – many on this forum -- who’ve been sick for decades who have gotten better. Maybe not 100%, but better enough to live a more normal life.
Regarding your son: I guess that makes sense to try Igenex if he tested positive w/the Western Blot. I know -- believe me I know -- it can be overwhelming to sort through various treatments, protocols, this supp or that. What I learned to do is to look for studies on Pubmed or other journals that back up a particular nutrient's benefits -- be it vitamin, mineral, an amino acid, a probiotic, prebiotic, etc.. It doesn't have to be a study about lyme's or ME/CFS, although that can be a plus.
I'll pm you with a couple extra thoughts.
