Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
De Meirleir diagnoses nearly everyone with lyme's disease these days. I've heard that quite a number of people don't get better with the (heavy) antibiotic treatment he prescribes. Makes me kind of skeptical...
In my case, the diagnosis seems to have been correct. I had a classic Herxheimer reaction from weeks 2-4 of IV antibiotics, which only really happens with very specific bacterial infections, including Lyme (syphilis die-off also triggers a Herxheimer reaction, but I'm pretty sure I didn't have that one ).De Meirleir diagnoses nearly everyone with lyme's disease these days. I've heard that quite a number of people don't get better with the (heavy) antibiotic treatment he prescribes. Makes me kind of skeptical...
I sent you a conversation.
Sushi
No, it doesn't test for co-infections. Just the various types of Lyme. And it's the "Elipsot-LTT", not the "LTT" test. They are different tests, so it's important to specify that.@Valentijn would the LTT test test for any co-infections, as well? If so, what other infections does this test for?
Can't see the conversation...
@justy I ordered my own tests through Infectolab and got strongly positives on the Ellispot LTT and also one band on the Immunoblot plus low CD57 cells at 63 well below the reference range. Also I had a borderline reaction to Ehrlichia. It was all quite a shock but I have decided to go down the route of seeing a trained herbalist who treats a lot of Lyme patients and she also works with a qualified doctor who has a special interest in Lyme disease. I see her next Tuesday so hopefully will start some treatment soon. I believe she uses Buhner herbs and I have been told she attends the Lyme conferences.
I don't really want to go down the antibiotic route because I have a dreadful time with them and get yeast infections from them very easily. Also most of them give me horrendous migraines after a few days (probably because of the borrelia). Hopefully the herbs will be a bit gentler on me. Abx also seem to block the effect of the steroid I am dependent on because most of them use the same detox pathways and that might be the reason why I struggle such much with them.
Good luck with your treatment.
Thanks for letting me know about this Sushi, I will definitely look out for this. I would be happy to try Dr Cowden's herbs but I guess the herbalist will make up a concoction especially as I know that all the herbs that can cause vasodilation are no good for me because they start off really horrendous migraines and then I need Imitrex to constrict the blood vessels. So I do appreciate the herbal route isn't going to be easy either. Just hope she is really open minded but will soon find out.KDM has me on one abx (for Bartonella, not Borrelia) and several herbal anti-microbial tinctures that work like abx. The tinctures are much harder for me than the abx! If you go the herbal route, most find that starting at a lower dose than recommended works better--at least for those of us who also have ME.
One of my friends followed the Buhner protocol, felt really good for a couple of weeks and then got too sick to function at all. I am taking Dr. Cowden's herbals and while he recommended starting with 1o drops, I had to start with 1/8 drop.
Best wishes with this,
Sushi