Orbiting - Thanks for the information. I always thought LDN modulates the immune system since it is used for autoimmune, which is Sjogrens, in my case. That's why I didn't think it would cause a...
Girlie - Yes, have compounding pharmacy. It is the one who made this first two months worth of .05 capsules, which I empty out to about 1/4 or less mg. I've had issues with LDN before (migraines,...
Garzie - I read on some forum a lady, who has Lyme Diisease, said she herxed from it and said LDN has antibacterial effects. I didn't think that to be true. My thought has always been what you...
It may not even be the LDN. It’s odd - feel my legs are going to go out from under me, but I can do 60-65 deep bodyweight squats in a row. Also stair repeats every other stair. But dizzy and have...
Dude - Thanks for the links. I had read one of them, but not the other. At a point where I can barely get through the day with dizziness, fatigue, a feeling of weakness and, as always, morning...
Thanks for all your responses. It's obvious we all have different reactions to not only LDN, but other treatments, as well. I wanted to do as Garzie does with the 50mg tablet, but my LLMD wouldn't do...
When I had a lip biopsy done a few years ago, the one spot on my lip stayed a bit numb for a few weeks. May not have been 5, but it did happen. Haven't had any problems with it since then....
Was wondering as I've now been on an extremely low dose of LDN (1/4 of 1 mg) and have very deep fatigue that won't let up and tremendously stiff neck with migraines in mornings, which is getting...
Interesting it seems top take a lot of people so long to get diagnosed, but nor surprising. I had not noticed, summer, you have been on since 2012. And a lot of our symptoms align, though mine I...
I have a good idea on some of you who have, but am wondering how many have been on this site for that long. It's been more than 10 years for me, and it is frustrating to still be dealing with issues...
I was finally diagnosed in 2013 after 11 years of doctors saying nothing was wrong but my head. I believe it was because they were using CDC criteria that needs 5 bands positive, which is ridiculous....
Thanks for posting that, astroman. Memorial Day is no longer observed as the day it was meant to be. It's not a day for sales on merchandise. It's not a day just to have a cookout. It's not a day...
This may be a dumb question, but could this mean less damage to microbiome or am I perceiving it incorrectly?...
I'm always a bit slow catching on to exactly what some studies are saying. So this is just part of artemisinin?...
Great to see and not surprising it was at Yale. It was two physicians there that discovered Lyme in 1975. There were studies, and the doctor who diagnosed me after others couldn't for 11 years, was...
Agree with what has already been mention - herx. I'm about to start treating again very slowly and anticipating bad reactions. Starting at low doses and slowly is a must with many people. Sorry about...
Your thought on treating Babs first is the same one I am having now. Always thought Plaquenil didn't suppress immune system in any way but rather "calm" it. It may be I have taken that wrong in...
SBS - It was actually Rochphin I had such a bad reaction to many years ago. Glad you didn't. Over the years, I've had about every symptom one can think of - especially chronic migraines. They have...
SBS - So glad to see you have adapted well. It's always a big question when new things are started. And good to know your symptoms of Babesia are better. Did you have a lot of the symptoms you...
Good idea. I've learned over the many years of dealing with all this "slow and easy" is a must for me. So many are like that. I wish you very good results....
Hope you adapt to the IV meds. Many years ago I tried it with Clarithromycin (spelling?) and started shaking and fever went to 106. That's when he changed me to Bicillin injections. Good luck with...
Happy to see that, SlowButSteady. All the testing can get confusing, then mix in an autoimmune disease, and really opens the door to just about anything. LLMD thinks treating the infections is worth...
loski - If I remember correctly, the qeeg tells a story about your brain (providing a map to follow to determine treatment with neurofeedback). I did that and, of course, the neurofeedback followed....
Thanks, Girlie. I had remembered your liver enzymes were high, but couldn't think of exact reason. He also wants me taking Cryptoplus one week and Artemix the next. Also with the zithromax and...
LB - It has always confused me on how a neurofeedback specialist knows how to program the system to help as you watch something (like a television show) on a screen. But, I think, it works on the...
saraeli, Little B, Neurofeedback involves a technician or specialist puts wires on certain parts of you head and monitors the brain process as you watch a show on a screen. It helped me many years...
The one I use is mainly for neuropathy in feet and ankles. It's worth a shot, Deep Sleep. Your re-posting reminded me to get back to using it on my feet, so I thank you. More than anything, I hope...
Agree with Rainy - Keeping your mind somewhere else, other than on problems, is hard to do with this, but going to an amusement park is a great idea. Would you have someone to go with you? That might...
Would it be wise to start off treating only Babesia to see reaction first? Girlie - If I remember correctly, didn't your liver and kidney numbers get worse when you started treating?...
My LLMD strongly believes Babesia and Bartonella are pushing Sjogrens Syndrome, making it worse and worse. In conjunction, that affects dsyautonomia. The gambit of medications and herbs he as...
loski - Didn't know that about spleen. Good information. Garzie - The assumption it's not an infection to worry about is typical of so much information that has been put out there. Seems most of...
So, Garzie, if I am understanding what you and Girlie are saying correctly, our immune systems are often already beaten down to some degree, taking away the thought a healthy immune system takes care...
If the Lyme or something if affecting nerves, that could be causing the stomach issues. Another question - is there constipation or opposite? Delayed gastric emptying can cause that. Ironically, I...
I just had never heard of that. Mentioned to him to make sure he isn't seeing a "dysfunctional" medicine doctor. And yes, it does sound like a CDC thought....
I have a friend that I talked into getting Igenex tests done for Lyme, Bartonella and Babesia. His immunblot for Borellia came out with only band 41 positive (IgM), but his FISH and immunblot for...
I have had bloating, to some degree, for, at least, 4 years. In my case, it is probably autoimmune related, which I'm not suggesting yours is. At the time when I think only Lyme was in the picture, I...
I'm with straydog on the second opinion, but it will do you no good if you go to another doctor who is not well educated on possible Lyme and is also strong in rheumotology. I've learned finding the...
Have had mild anemia for years since Lyme and low ferritin counts (18-20). Had an iron infusion last week, but haven't had any blood work done since. Looking back on tests from years ago, everything...
I've mentioned this in the past, but I have a Spooky2 rife machine that I never figured out. Have had it for, at least, three years. Feel like an idiot, but simply can't grasp the whole concept,...
Wanted to thank you for posting this. I like Marty Ross' approach and all he has to offer....
Garzie hit reality well with his comments. Jumping from one specialist to another just adds to the frustration, along with the long wait it takes. In the meanwhile, potential life threatening...
I’ve been asking my neurologist to up the dose. Hooefully, she will after this month. You mentioned dryness, I think, in a post. If so, have you been checked for Sjogrens, to be safe? As mentioned,...
Geralto - To answer your questions, I do think the IVIG has helped with the neuropathy, as in it hasn't gotten worse. I also believe it helps calm the cytokines that make the Sjogrens harder to deal...
I’ve been on IVIG for most of 18 months. After several years of negative autoantibodies, I finally convinced an ENT to do a lip biopsy, which was very positive for Sjogrens Syndrome. Also positive...
saraeli - Your thoughts on reflux, possibly, causing his problems is a good one. As you know and maybe you just experienced, it gets up in the esophagus and all kinds of problems can occur. And not...
Never have experienced wheezing, but have developed a symptom where it’s hard to catch my breath, sometimes, laying down or waking up from sleeping. Any exercise causes shortness of breath and faster...
The chart is a good help. Unfortunately, you can see on it the complexity of determining what is what because there are overlap symptoms. That goes back to what Garzie mentions " I don't think the...
Glad you found this forum and welcome to it. I went 11 years with no diagnosis except “it’s in your head.” That has happened to many people with Lyme. My suspicion is, as Garzie mentioned, the...
So glad you are finding answers and even more glad it wasn't ALS. A number of people have had that diagnosis before finding out it is Lyme. There are some very good, knowledgeable, technical minds on...
Forgot to respond to Girle and Garzie. My apologies. Girlie - The nephrologist I see has marked off many things I can take, with Rifabutin. And I have always wondered if Lyme is playing a part in...