No worries. LDI is an experimental treatment. It's hard to tell who will be a good candidate for it. We got lucky in our case. I wasn't a good responder, myself, to the LDA for allergies. It was hard...
I looked in the archives and found somebody who said his uncle who had a bulls eye rash, and later developed ALS-like symptoms of slurred speech and swallowing difficultues, improved a lot from LDI....
One CIFDS finding is that some people who have been diagnosed with CFIDS have mitochondria that have fragmented to defend the cells against HHV-6 (a particular variant of it). The fragmented...
LDI was purely immune modulating, and it allowed for a lot of nervous system healing to occur. But still Banderol and Samento brought increased gains. Banderol and Samento caused the persistently...
An update for the record. Ketotifen appears as if it may be impacting a whole lot of current symptoms, including possibly what remains of the facial nerve palsy. That will bear watching for a while...
That was a DARVO-style response. (Deny Accusation Reverse Victim and Offender)...
Regardless of whether the OP violated forum rules, why wouldn't he/she be warned first? To suddenly lock down a thread without warning comes across like flying off the handle. It has a very arbitrary...
The illness has finally cleared up. One week of a variety of nasty symptoms, followed by one week of a dry bronchial cough. It definitely wasn't babesia. It was definitely a virus. The dose of...
One more thing I thought of is that I remembered that azithromycin has anti-inflammatory effects. One thing that could potentially impact physical strength, is that azithromycin has been proven to...
Are you asking if herbs are able to treat intracellular borrelia as well as an antibiotic like azithromycin does? An easier question to answer might be if you are asking about babesia and bartonella...
Astroman I've had that same feeling of wondering if I really belong here, for similar reasons. But in reality chronic Lyme involves damage to the body and/or nervous system that has to be reversed or...
Thank you Astroman and RainyCloud! I have hope. We live in time of emerging therapeutics. There is even a biotech start-up that made a drug that can cause tiny hair cells to grow to regenerate...
I tried it a few years ago, but it caused lethargy, which I didn't interpret as herxing. I interpreted it as a side effect of low blood pressure. It happens to me, too, and my son must get it from...
My son's treatments are going well. No issues as long as we remain relentless. I can't let up with the low doses of Samento and Banderol. I'm not sure if he had co-infections. The symptoms I thought...
Fascinating stuff about Bruce Patterson, monocytes and microclots. It's new to me. I read up on it here and really liked this part:...
I agree with you, Garzie. After you put out the fire in the brain or nervous system, you need to retrain the brain or nervous system. Relentlessness is key. My son isn't ready to take a victory lap...
Thanks for sharing that information. I hope Lyme treatment--plus whatever kind of physical therapy and exercise you may need to do--will completely resolve your "ALS." More doctors need to be...
Thank you saraeli. I'm open to hearing evidence either way. I'm sure there are so many variables going on that can allow the microbes to get the upper hand over the host's immune system. The short...
The PK protocol is a fascinating one. And too expensive for most people. I looked into the PK protocol years ago. It was very interesting to read the story of the doctor recovering her grandson from...
I was just reading last night that borrelia don't like to grow in butyrate, they really hate propionate, but they like acetate. All three of these are short chain fatty acids that are produced by gut...
I get the same symptom of bad migraines complete with throwing up, and in response to anything I inhale that my sinuses don't like. It could be from cleaning the litterbox or from somebody spraying...
Thank you, your first hand detailed report is very valuable. So few Lyme patients have described symptoms so similar to my son's symptom history, except that you didn't have facial nerve palsy. I...
You're quite welcome pinkblossom. Somewhere in my ramblings maybe there will be a helpful clue or lead, or perhaps not. I ramble on just in case it helps somebody some time ;)...
Internal use of chlorine dioxide/MMS depletes minerals. The very same thing is frequently used in wound dressings to spray on the gauze (lightly). The wound care doctor kept on giving me feedback not...
BPC 157 exacerbated MCAS issues for my son as well. L-theanine helped with MCAS issues for him. I used to give it to him, but I took it away because he takes so many calming things, and I overhauled...
I know you didn't ask me, pinkblossom, but GABA/glutamate balance is very hard to test for. When I worked on getting my son's tics reduced, what I read in my research was pretty much that anything...
Since reading up on symptoms of the latest COVID variant going around, I've come to strongly suspect that's what this is. As the day wears on, he's developing an increasingly more severe headache. He...
Norketotifen is a metabolite of ketotifen. It is being studied for anti-malaria efficacy. It has also been studied for anti-influenza and anti-COVID efficacy. Norketotifen has all the mast cell...
I'm not sure if this is exactly the same, but it must be closely related. Non-invasive vagus nerve stimulation: the future of inflammatory bowel disease treatment?...
This is fascinating and full of potential. Years ago Dr. Jeff Bradstreet pioneered using a nicotine patch for children with autism, with some getting remarkable results from it. Nicotine stimulates...
That's very encouraging to know. Thank you. He had a lot of facial twitching as part of his herxing, too, while first ramping up on Banderol and Samento. Interesting....
This is great news. It's also nice to see that researchers at a place like the school of medicine at Yale are taking babesiosis seriously. I would bet some of them are either infected or they have...
My son has been on Ketotifen for a little over three weeks now. He finally worked up to his full dose a couple of days ago. I really hope it will jam the vicious cycle that's been going on. I've been...
To add one more idea to the good suggestions above: Topical Benadryl to calm down the skin irritation and itching fast. Just in case, it might be good to compare the rash to pictures of Shingles...
Long COVID is bringing attention to similar conditions, including Lyme and ME/CFS. Long COVID research has turned up MCAS, micro clotting, leaky blood brain barrier, and dysautonomia. Reservoirs of...
Could it be possible that chronic stimulation of Th17 has exhausted it? This is thought to potentially happen in ME/CFS. Surveying the Metabolic and Dysfunctional Profiles of T Cells and NK Cells in...
It must be individually variable. I'm glad you're figuring out how to help yourself. My son was one of the unusual Lyme patients who actually made enough immunoglobulins and antibodies to test...
Very interesting finding!...
Dr. Klinghardt claims that his Lyme patients usually don't test positive for Lyme until after treatment has begun. Some people "provoke" before they test by taking Samento for three months before the...
Bill Rawls recommends herbs as a solution in his video, not just for anti-biofilm and anti-persister activity, but also for immune modulation. Not only, that but he mentioned that when one species of...
In Eurasia borrelia garinii frequently infects people. It causes much more rapid and aggressive nervous system symptoms. It tends to invade the nervous system more rapidly than borrelia burgdorferi....
Wow, thank you pinkblossom!...
Bloating could potentially be related to gut motility. Anything that affects the migrating motor complex in the intestines could cause food to more slowly pass through the digestive system. The...
Thank you pinkblossom. Probiotics can be so tricky. Once he's been on ketotifen for a while I will keep your tip in mind....
This is more practical and easier to follow than the paper I linked to. It's an interview with Dr. Afrin. He says in the interview that some MCAS patients don't have a speck of allergy to them. "And...
I hope VisBiome helps you astroman. I can understand why you're willing to spend the money on it, since you're dealing with primary immune deficiency. I'm glad you can get it at a discount....
And yes, it is expensive! A cheaper option would be whatever kind of prebiotic fiber is best tolerated. I haven't found one that is well tolerated yet, and now isn't the time to experiment. If you...
Yes, VisBiome is the only probiotic that does not cause histamine intolerance type reactions in my son. I read about the lawsuit and learned that part of it involved the doctor who originated the...
It's still early. He's on day four today, only starting out at 1/4 of a dose. Then on Friday he'll increase to 1/2 of a dose. The very first night I gave it to him, he looked drowsier faster than...
Thank you Girlie. LDI and modified Cowden did the heavy lifting insofar as the worst Lyme symptoms were concerned. But the healing didn't happen without a lot of supportive stuff. Nightly epsom salt...