Hi, Barbara! Welcome to the forum! That's terrific that you have found an LLMD and got tested at IGeneX. It's got to be a wonderful feeling to have your diagnosis and to embark on a treatment program. Yes, it will get better!
I don't know much about the Marshall Protocol, but I have heard of it. I would say don't worry about the herxes unless they actually happen. It is good to be aware that a herx is possible so that you don't over commit yourself shortly after starting a new med or supplement. An important thing I have learned is to lower my expectations about how good I'll feel on any given day, and then if it's a good day, I can enjoy it. My PA told me that many of their patients little to no herxes. A friend of mine had herxes that only involved some brain fog and the need for an afternoon nap.
I have had aherx every time I started a new antibiotic, and I just had one a couple days ago when I took a full dose of an herbal product (Cat's Claw) that I had been off for two weeks. Usually I get a 'heavy head', brain fog, sometimes a headache, and sometimes get cranky. Sometimes I just have to go lie down for 3 hours because a handful of symptoms intensified.
When I got my first shot of penicillin, I had a huge herx in my ribs. They had hurt a lot before I got diagnosed, and they must have been loaded with the bacteria, as I had rib pain herxes multiple times in the first couple months of treatment. I have learned to appreciate a herx as it tells me the medicines are working and the little buggars are dying!
Occasionally they can be serious enough to call your doctor. Hopefully his/her office gave you an emergency number you can call to ask for advice if a herx or symptom is getting to be too much for you. This doesn't happen often, though, so odds are in your favor!
i was told by several medical professional friends who have Lyme and my LLMD that although the herxing is not the most fun, when you start treatment you usually get worse before you get better. I know that is not much comfort when you are worried but like Ricobard said, many of my herxing episodes now are only 3 hour naps and such. At least you can be certain you are on your way to getting better. I am not sure what the Marshall protocol is but we are here for you and welcome to the group. Good luck and let us know how it goes.
I never felt worse while on antibiotics than I did while sick ... everyone is different that way.
And speaking of different, Trevor Marshall's approach is different from that of more mainstream Lyme docs. He counsels on strict avoidance of sun -- meaning NO sun AT ALL, as I understand what I've read on it. He uses Benecol, another med I haven't heard of LLMDs using.
I think his idea is that sun exposure, which is needed for the body to create Vitamin D, keeps the Lyme bacteria alive and reproducing, so by blocking *entirely* exposure to sun, it breaks the chain of Lyme bacteria reproduction.
I looked for a while for the scientific rationale for that approach, but was not able to find anything. It seems a bit cult-ish to me, but probably all of us Lymies seem that way to nonLymies. I just like to know why the doc is doing what s/he is prescribing, and I've never reached a comfort level with Marshall's approach.
Let us know how you do -- we're all rooting for you!
I was put on the Marshall Protocol when I first started treatment, and it was catastrophic. I went from functioning but feeling grotty, to being bedridden.
It took 18 months to get me slowly back to where I had started, by taking a cocktail of antibiotics non stop.
Everyone I have spoken to with Lyme - and I wil be interested if other members of this forum agree - says interrupting antibiotic treatment only causes relapse and increases the risk of getting antibiotic resistance.
Also the Marshall protocol says you must avoid the sun so you can get your vitamin D levels as low as possible. This flies in the face of all respected medical research, which has found that HIGH levels - much higher than previously thought - are essential for normal functioning of the immune system. I can tell you from personal experience that this is absolutely true.
Finally, "Doctor" Marshall is NOT actually a doctor of medicine. Not many people know that, he doesn't exactly advertise the fact.
In my opinion he is a charlatan and his treatment causes only antibiotic resistant strains of bacteria and immuno-suppression.
You need an ILADS registered doctor if you are going to have any chance of curing your Lyme diseae. And not one of thoe will ever put you on the Marshall Protocol.
thanks for your comment .. that is pretty much my conclusion too, but since I haven't tried the approach or known anyone who has, I hesitated to say. I did go back and do some reading on Marshall's approach and it does sound like it leans toward the idea that Lyme is an overreaction of the immune system and so the *immune system* needs to be suppressed, but that seems backwards. I'd be very careful before going Marshall's way, and personally, I wouldn't do it, but that's just me.
I just read it and I personally wouldn't do it myself. I guess there can be a lot of protocols out there that want to take advantage of vulnerable Lymies.