I just found out last week I have Lyme after being ill since Aug.2011 told Dr I got bit by several ticks and one left a red rash....I have all the classic symptoms muscle twitching, fatigue, depression,etc. the list goes on and on,found a LLMD on my own and he ordered a test for Igenex and yes came back pos. for Lyme I will be starting Marshall Protocol in a few days.needless to say I am very nervous about the whole thing especially what I have read about the herx part. I don't want to feel worse than I already do.
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.
By chance, we lived near Marshall's office in sunny Southern California some years ago. We used to see pasty pale people walking around the area where his office was (in a kind of suburban-style office park), wearing long sleeves and pants, and fabric sun hats with wide brims in front and a long shade down the back, along with those big plastic sunglasses made so they can be worn over regular glasses, wrapping around so that sun would not get in around the edges. They seemed a little odd, esp. when it was 90 or 100 degrees in the blast of summer heat, but hey, it's California ... everybody is entitled to be a little odd.
It was only some years later that I realized where Marshall's office was and that these were probably some of his patients.
So I got curious and read a lIttle bit about the Marshall Protocol. I am definitely confused. It includes "post Lyme Disease treatment syndrome" with a list of various autoimmune disorders as conditions treatable with the MP. This is consistent with the IDSA's view that Lyme cannot survive a month or two of antibiotics and ongoing symptoms are a result of an overactive immune system.
But LLMDs believe ongoing symptoms represent continuing infection. Following a protocol that will interfere with the immune sysem sounds counterproductive to fighting a bacterial infection that has already somewhat suppressed the immune system.
And if you have never been treated for Lyme before, why would you take low dose abx that won't kill the spirochetes. It just doesn't make sense.
It also says that you need several years "to reach a state of remission!" I recommend that you go for an ILADS MD, antibiotics, and a real cure. Most people are cured in 1-2 years.
Sorry, Barbara! We don't mean to gang up on you. But we Lymies who have struggled to get a diagnosis and treatment truly want others with Lyme to find a doctor who will treat them successfully. The goal is the cure, not years of hoping for remission. This isn't cancer...it's a bacterial infection. True, it's a complicated one, but no one else in the world thinks that Lyme should be treated the same as sarcoidosis and psoriasis.
I don't disagree with your conclusions, and it's been a few years since I read up on the Marshall program (sorry, i can't bear the pretentious term 'protocol' .... sounds like it should be the name of a Robert Ludlum spy novel ... 'The Marshall Protocol'.)
I did read the explanations of Marshall's theory to understand for a brief moment the seemingly backwards approach he takes to killing Lyme ... his theory is that certain ordinary things like sunlight and Vitamin D are what keep the bacteria alive, and so blocking all that out starves the bugs into oblivion. Once I got to the point of 'Oh, so that's what he's getting at', my next thought was 'Not for me.'
Anyone who is interested can read at a website that may be hosted by Marshall and/or his supporters: mpkb [dot] org / home / mp
It is as clear a summary as I have read, and while it makes numerous assertions, it doesn't (to my reading) actually *explain* anything.
A book I have mentioned previously here is Bryan Rosner's 'Top Ten Lyme Disease Treatments'. Rosner tried the Marshall program and ended up modifying it, ultimately finding it somewhat beneficial for himself personally, for reasons he (sort of) explains in his book. He doesn't seem to understand the reason it may work any better than I do, but that doesn't mean there's not something to it .... however I personally want to know WHY the person recommending something believes it works so I can follow and either accept or reject the logic behind it.
Anyone deciding to pursue this treatment approach should imho read everything you can get your hands on about Marshall and his program, know why you are doing it, and understand it enough to know if it is pushing you into a bad situation as you follow the program. That's pretty much what I think Rosner did.
Anyone trying it, please post back with your results. We're all ears here ... and a few opinions to go with the ears, too. :)
The hard thing about researching the Marshall protocol is that the only publicly available information is stage one and part of stage two. It progesses onto stage three (and possibly more stages) which are only fully revealed and supposedly explained, to faithful adherents who have already followed (and paid for) the previous stages. This means it is too much like joining the Church of Scientology or some other cult for my liking.
I did not know this when I was first put on it otherwise I would have refused. I am only willing to try therapies that have been published in respected medical journals and subjected to peer review.
BTW Jackie, the description of the pasty people round his office made me LOL!! That used to be me! I live in Sicily where sumer lasts 8 months and the average temperature is 40 degrees. I used to go out smothered in so much sun block that I looked like a Geisha. My brilliant white face reflected the sunlight so brightly that I was causing near traffic accidents. Confused moths fluttered around me in circles.
The following year my new and good doctor put me on a controlled tanning programe to get natural Vitamin D along with my tablet form of it, and I went the brownest I have ever been. I was literally glowing with health. I don't think human instinct is so wrong - what looks healthy, generally is.
I hope you take our comments here in the way they are intended: to be honest and straightforward.
Many (or even most) of us have been dismissed by our doctors as fakers, or emotionally messed up, or having some ailment that will go away by itself if we just stop thinking about it.
Please do not take our comments here to put *you* down that way, or to say that your efforts to get well do not have value.
ALL of us here know what a long road it is to be so sick, to be ignored or disrespected by our doctors, and to work so hard to keep faith in finding effective treatment and a good MD.
I can tell you are excited about the possibilities of Marshall's approach, and it may be upsetting or depressing to hear our remarks and opinions about Marshall.
You will have to think for yourself on this and in all other aspects of Lyme, because there is no one single right way for everyone to get well, and whatever you do will be going against someone else's opinion. That's how cutting-edge and confusing a disease Lyme is.
Mainstream (nonLyme specialist) docs do not believe Lyme is a serious, long-lasting illness that can be complicated to diagnose and treat. The sneering and dismissive attitudes almost all of us have been through are painful and frightening.
You may also have been offended or upset by our various comments above about Marshall's approach, in the same way many of us have been offended or upset by so-called mainstream docs. We all know how that feels and do not lightly make critical comments about any doc who takes Lyme seriously.
The problem is that in any fast-changing area of medicine, there are some odd-seeming ideas put forth by those trying to be creative in helping their patients, but unfortunately there are also frauds and wackos who may or may not mean well, but in any event simply can't deliver on their approaches -- because their approaches to treatment may not work.
Mainstream docs tend to consider ALL docs who treat Lyme aggressively to be wackos. We Lyme patients are more broadminded, but we have our limits too, and to some of us, Marshall's approach just doesn't hang together logically.
It is for you to decide whether to proceed with Marshall's approach, and to feel free to change your mind if you decide to do so. There is no right or wrong in Lyme that is like black and white ... so very much of it is in shades of grey, and figuring out how much grey tone is too much is very difficult to do, even for scientists and MDs.
So we Lyme patients are left to figure it out for ourselves. Marshall may be right, and his approach may work for some people; I don't know. You will have to decide for yourself. All we can do is give our opinions, and we don't know everything ....
.... but maybe Marshall doesn't either. That's what you'll have to decide for yourself. You might want to read and think about it some more, or try it for a while and see what happens. We are all on the cutting edge of medicine, and it can be downright uncomfortable.
We support *you* in finding your way to getting well, and you've heard plenty from some of us about not agreeing with Marshall's approach.
Do what seems reasonable to you, and don't be afraid to change your mind. Maybe find another Lyme doc for a second opinion about Marshall's proposed approach. We don't have all the answers, but we are here to give our thoughts and opinions -- and to tell you we understand what you are going through.
You hang in there, and let us know how we can help, okay? Best wishes to you --
There's someone I believe is a naturopath answering some questions on other forums. In a discussion on low Vit D, she posted this quote:
Excerpt from Linus Pauling Institute - Vitamin D deficiency...
"In vitamin D deficiency, calcium absorption cannot be increased enough to satisfy the body’s calcium needs (2). Consequently, PTH production by the parathyroid glands is increased and calcium is mobilized from the skeleton to maintain normal serum calcium levels—a condition known as secondary hyperparathyroidism. Although it has long been known that severe vitamin D deficiency has serious consequences for bone health, recent research suggests that less obvious states of vitamin D deficiency are common and increase the risk of osteoporosis and other health problems (16, 17)."
I didn't want to pile on even more but, since it looks as if we have scared Mandy away and are just talking among ourselves, I may as well also share this.
I had an appt with my LLMD last week and he told me he has now had 3 patients who suffered such severe vitamin D deficiency (which is very common in Lyme disease) that they got broken spines due to decalcification of the bones. Two of these patients were children and one of them got her spine fractured in 3 separate places. Needless to say these kids are in wheelchairs and apparently will need long treatments of IV vitamin D and calcium to heal.
The doc has put me and my son (who is only 6) both on 2000 IU daily of vitamin D. He makes us have blood tests every 3 months to monitor the level, which he wants at the very top end of the healthy range.
The theory of the Marshall program as I see it seems to make sense at first:
Starve those buggers out, since they consume a lot of Vitamin D, cut off their supply.
They also are one of the rare bugs that live on manganese instead of iron, so avoid everything with manganese and magnesium.
Or maybe he's treating the auto-immune disorder PTLDS, and he wants to disable the immune system, which may allow him to operate under government guidelines.
The problem is that, as mentioned in some of the other responses, our body needs these essential vitamins and minerals as well, and the depletion of them due to spirochetal consumption may contribute to some of our Lyme symptoms, or some may be caused solely because of the deficiency.
What my LLMD has told me is that even if you try to achieve the lowest levels of these, the spirochete will still extract it from somewhere in your body.
You may not want to overload your body on Vitamin D, but a normal level along with whatever plan of action to disable the BB infection should be fine.
However, if you decide to give it a shot, I'd love to hear how it went, as I am not an expert, and I have heard this thing works in part due to molecular mimicry.
I don't understand the blanket aversion to antibiotics. They worked for me and others I know, with no significant or intolerable side effects. Lyme is a bacterial infection: kill the bacteria, the infection is gone.
Everyone is entitled to decide their own approach, so this is just my opinion. fwiw.
Most of us read up on it, did our own research, and decided that we needed to find an LLMD that would believe in our recovery, instead of a lifetime of pharmaceuticals treating our symptoms. Shouldn't recovery be the goal (cure or remission) not symptom management, if at all possible?
The IDSA has strict guidelines about the necessary short-term antibiotic course. Anything over and beyond that is unnecessary, and a potential health-hazard for no reason.
Remember, they still claim that there is no evidence Borrellia Burgdorferi can survive in the human body after that initial course of ABX.
I have read studied that would SEEM to prove that it can and will survive in areas of our body that ABX can't reach, such as the joints, muscles, organs, heart, and skin, or they will ball up into a cyst form most ABX (except Flagyl and Tindamax) can't kill, and that when the ABX are stopped they will resume exascerbating the infection when they are sure the coast is clear.
That would raise two questions in my mind:
Why use ABX at all? or
Are lifelong ABX necessary to prevent the return of infection?
That being said, my belief is that the proper courses of continued ABX, extended through a period of time from say, 3 months to 2 years, depending on the severity of the infection and how many co-infections have to be dealt with throughout that period, should lead to a good enough remission that someone with Chronic Lyme could go without a relapse/flare-up and the need for ABX for anywhere between 6 months to 10 years.
I have been on ABX for 8 months: 3 months of Omnicef, Bactrim, and Flagil, 2 months of IV Rocephin 3 times per week, Omnicef, and Flagil, and 3 months of Zithromax, Bactrim, and Flagyl. This week I will be continuing treatment with a new course of Omnicef, Bactrim, 3 days per week of IV Rocephin, Flagyl (on weekends), and Mepron.
CD-57 count has gone from 59 to 71, but doc will be looking for the significant jump once he believes he has treated me into a good remission. I am also taking various Byron White herbal protocols, for my Babesia, Bartonella, and Lyme.
You say: "Most of us read up on it, did our own research, and decided that we needed to find an LLMD that would believe in our recovery, instead of a lifetime of pharmaceuticals treating our symptoms. Shouldn't recovery be the goal (cure or remission) not symptom management, if at all possible?"
I was treated by an LLMD with antibiotics, and I remain fully well now 5+ years later. I don't understand your comment that pharmaceuticals require a 'lifetime' of treatment.
fwiw, the hoped-for usefulness of CD-57 as a measure of Lyme treatment status doesn't seem to have panned out, from what I read.
You also say (with my added *** marks for emphasis):
"I have read studied that would SEEM to prove that it can and will survive in areas of our body that ABX can't reach, such as the joints, muscles, organs, heart, and skin, or they will ball up into a cyst form most ABX ***(except Flagyl and Tindamax)*** can't kill, and that when the ABX are stopped they will resume exascerbating the infection when they are sure the coast is clear.
"That would raise two questions in my mind:
"Why use ABX at all? or
"Are lifelong ABX necessary to prevent the return of infection?"
My question to you: why not use Flagyl/Tindamax, which you appear to agree are indeed effective against the encysted Lyme and biofilm colonies? I was treated with Flagyl, along with other antibiotics. Result: Fully well.
You're right, and I probably wasn't clear about my pharmaceutical point. I have used those, and still am, and they are still working, according to my feelings of Herxing when pulsing them. The others may kill some, and may induce more into cyst form for the Flagyl to take care of.
The lifetime of pharmaceuticals I'm referring to are the ones we would need the rest of our lives if long term antibiotics weren't explored as a possible guide to effective remission. :)
i.e.--sleep meds, pain meds, fatigue meds, mood stability or depression meds, heart meds, blood pressure meds, etc.
I am now taking Omnicef twice every day. I am not sure why my LLMD pulses the Bactrim on Monday, Wednesday, and Friday, but it may be because he only wants one antibiotic to be the constant, and Omnicef technically will be, even when I don't take it the days I'm taking the IV Rocephin, because Omnicef is basically the pill form of Rocephin. I'm guessing he wants the Flagyl taken Saturday and Sunday because you have to take antibiotics at least 48 hrs. for them to work at killing off the spirochete. The Bactrim may be a Borrellia/Babs/Bart weakening agent. Pulsing with a constant probably allows a multiple array of ABX to be utilized without an overt chance of complications from long-term and/or multiple simultaneous usage.
Interesting approach. I personally would be cross-eyed trying to remember what to take when!
When I've read of pulsing, it has been done for X days on the meds, then Y days off the meds, lather/rinse/repeat, which concerned me that the remaining bacteria could recuperate on the off-meds days and potentially become antibiotic-resistant as a result. Bad news.
Given the rotation you are on, tho, it sounds like you have constant meds in your system, which (assuming they are all effective constantly in some fashion) should avoid the peril of creating abx-resistant bacteria (as can happen when cycling on and off all meds at the same time).
Someday, someday, there will be an antiLyme pill that we can take for a week and have the whole shebang wiped out of our system. Here's to that day arriving soon!
Do keep us posted on your progress -- and best wishes.
Thanks Jackie. After getting back to the IV Rocephin treatment today I was really fatigued and sleepy, but after napping, though still a little groggy, I feel better than I have since the end of the last IV Rocephin treatments. Maybe I can just keep an IV Rocephin bag on me the rest of my life-LOL.
This is good! but don't get toooo attached to the IV ... ha.
Are you keeping a daily log of what you take and how you respond? I still have my daily notes from when I was so sick, to record taking my meds, how I felt, what I ate, how I slept, etc. since my memory was useless.
I would take the log with me when I went to see the LLMD, and he liked to scan through it quickly before we would talk. I kept it on computer, so it was tidy and easy to print out and take with me, also easy to read. Columns for date, what time I took what meds, what I ate, how I slept, how I felt generally, and any odd things that popped up. Sounds like a drag, but actually very useful esp. with 'Lyme brain', and only took a few minutes.
I haven't done that, but it sounds like a good idea. Thanks. Did you ever do the IV Rocephin?
The herxing seems to be a lot more tolerable than with the Flagyl. The last Flagyl herx had me nauseous all day, along with a more uncomfortable fatigue, a wired tired feeling, muscle aches and stiff neck.
Do you think it's because IV Rocephin is mainly affecting spirochetes in the brain, instead of cysts everywhere?
My doc treated me and another family member with only oral meds (we both had Lyme and babesia). I don't know the rationale for oral meds only, and don't know if the doc used IV for any patients.
My vague understanding from the doc was that, in his experience, oral meds were as effective as IV, so why go through the hassle and risk of IV -- but we never had an explicit discussion about it. My brain wasn't into serious thought beyond remembering where I parked the car when at the doc's office.
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