dcd2103 said...
ltc1225 said...
So I was diagnosed with CIDP, small fiber neuropathy, the works
And I got treated with IVIG, but I have Lyme and Coinfections, I tried high dose IVIG for a while, I felt decent while doing the treatment but after I stopped I just returned to where I was before I started, so in the end it ended up being a temporary bandaid that didn’t help with symptoms. I thought it had some promise instead of antibiotics, but I am doing antibiotic treatment and after taking some breaks from it I can tell actual improvement. My LLMD was glad I stopped IVIG, they referred to it as a bandaid that is an assistant to the immune system but once we stop it we revert back to where we were with these infections and if we don’t address the infections enough IVIG won’t help and if we actually treat effectively IVIG won’t be needed. Just my opinion after going through with IVIG and treating with antibiotics
Not to highjack hateslyme's thread, but this is interesting. Can you elaborate on what kind of benefits youre seeing? What infections do you have, how they were diagnosed, which abx you are on for how long, and what symptoms you are seeing improve specifically?
Reason I ask is I am unable to find really a single person with actual advanced nerve disease like us, who has been able to improve their symptoms using antibiotic treatment. I've scoured every board. Every once in a while you find someone in the early stages with some vague complaints of tingling who get better, but no one with actual advanced disease like you (CIDP+SFN) or me (60% numb in my feet). Most everyone seems to say antibiotic treatment made them worse.
Glad you are making progress, gives me some hope.
That being said, the IVIG did make a big difference. I've been on SCIG now for 5m. I thought it wasnt working but it takes time dr just upped the dosage and the past two weeks I'm finally starting to feel some real relief in my feet. It's a great treatment as there's little downside, and if it allows you to calm the immune system while treating infections, what's not to like? Your dr being glad your off it is quite oddI don’t want to sound insensitive to others who have treated with antibiotics but if you’re supporting your gut properly through intense antibiotic treatment things will improve for most people. I’ve spoken to those who had to stop because of their gut and of course they weren’t doing the proper amount of probiotics, MCAS considerations were not addressed which leads to the inability to take these meds. I was throwing up from a doctor who had me take meds every SINGLE DAY for two years, no breaks. My stomach got destroyed. They didn’t consider the factors of the gut and the coinfections properly. Herxing is very real, it gets absolutely terrible and that is the sign you’re really digging into these infections. Personally I’ve heard of people stopping when the herxing gets very rough and doing that simply derails all of the progress people could make on antibiotics. It takes a leap of faith to believe and treat coinfections when they don’t show up on tests, but the testing is extremely flawed and people in the Lyme world don’t fully understand that. If you’re sick for a long time you need to address coinfections and biofilm and cysts. The majority of LLMDs don’t do this effectively.
My Doctor said the immune system needs to fight on its own and the IVIG tricks the immune system without letting it function properly. My doctor pulses meds and lets the natural immune system do the work. I had been numerous LLMDs before my current one. None of them pulsed medications and I soon realized that’s a huge no. I have discussed with people who are in remission from going to this doctor where I really never heard the amount of success stories from other doctors. This is what led me to my current doctor, Dr. J, you’ll see him mentioned on the boards here. His treatments are intense but I have so much faith because of the success stories I’ve been told firsthand and my improvements.
With this doctor you’re not supposed to share medications and all the details, you do sign a form to not speak or share treatment details and I do respect that agreement. What I can tell you it’s 3-4 antibiotics at a time, herbs included, pulsing is happening most of the time.
I was having seizures, I couldn’t walk down the hall, I was pretty much falling apart, nerve pain, unstable mood, crippling headaches, the list goes on and on. I am functional right now on off weeks but when we treat I get hit hard by these meds. I tested positive for Lyme, but the clinical diagnoses of coinfections is key as we can’t even test for all the infections out there (babesia, Bart, toxo)
He treated aids patients before Lyme patients and recognized the extreme problems and somewhat similarities in these diseases. I think it come down to finding a knowledgeable doctor you can trust, which is not easy. I couldn’t sit around any longer and even consider alternative treatments. Lyme and Co patients need to address the root cause and that’s partly why my doctor isn’t having me on IVIG .
People suffering from Lyme and Co may not all have the safe infections which is why many medications are needed. I followed the path of success stories and here I am getting my life back. I’m not trying to say other methods don’t work, but if you’re a chronic sufferer with complex issues antibiotics I believe are needed. I don’t know your whole history, but I’ve been sick for 5+ years in my 20s. The improvements can very much be noticed in off weeks. Also nerve pain medications could help, I figured you may have tried them but they help me through treatment