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Is anyone following this? It’s a little hard-core. It seems expensive, and indicative that you don’t work, or have someone else to support you while you recover:
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
It all makes perfect sense, but again it just doesn’t seem like someone like myself could follow that, and not go bankrupt and/or be forced not to be independent. What do you all think of this?
Hi Mathew,
The Dr. B. Diagnostic and Treatment guidelines for Lyme in addition to the ILADs ones are considered a “gold standard” in Lyme treatments and I know it’s pretty overwhelming reading through these! 😯 So many folks are led to believe, “Oh, hey, I can take an abx for a few weeks and be better!” After all, this is what the conventional IDSA guidelines state.
However, perhaps you’ll take comfort in that LLMDs don’t bombard their patients by doing everything at once and these are just “guidelines” for patients who may have specific infections. E.g. One patient might only be dealing with borreliosis or another patient may be dealing with just babesiosis. Others may be dealing with a combination of infections. Also, as chronic Lyme is considered a long-term therapy, LLMDs will take a measured approach, trying one approach, first, and, if that doesn’t work, will move onto a new approach. They’re also pretty good at detecting how stressed a person’s immune function is and can suggest what measures may be needed to bolster things and to get better “bang fer yer buck” with the anti-microbials.
The key to Dr.B’s guidelines are in the “hints” in the title…because these are based upon his broad experience of treating thousands of patients and so everyone’s situation will be unique. Tickborne infections are so challenging to diagnose without accurate testing, so much depends on a person’s unique symptoms, which is why LLMDs tend to use therapeutic probes. If one therapeutic probe doesn’t work or produce an expected response, they move on to the next. E.g. in the case of babesiosis, there are many strains of the infection, and some strains respond better to certain meds or supps than others.The wonder of LLMDs, though, is that they are willing to use the full armamentum at their disposal to get patients well again, recognizing that not treating is riskier than trying what they can to get patients well again. A good LLMD will usually assess the full clinical picture and then suggest a protocol to the patient, which the patient can then assess for themselves and then try what is within their comfort zone and what their pocket can handle. So, the treatment approach is usually one that is agreed upon by patient and doctor, once the options are laid out. That said, there are some docs who take a more aggressive approach, so it’s worth reading Dr. B’s guidelines to really get a good Lyme 101 on what all the options are, so the patient won’t be feeling dysempowered, but able to engage in the treatment decision process.
Gosh…hope that makes sense? I guess the bottom line is to try not to get overwhelmed, but just to get as informed as possible. LLMDs, in general, tend to be innovative and encourage patients to get engaged in treatment decisions. When I first went to my LLMD, I was completely ignorant and had to leave much of the decision-making to him. As I began to get better, though, the relationship evolved into one of mutual trust – he, doing his best to educate me at a level I could understand and take in, gradually feeling stronger to research myself so I could discuss options with him at appts, and, thankfully, this formula leading to improving health in increments as time passed.
Wow! You’re doing so well to be doing this right out of the gate. 🙂
Well, I haven’t done all of this or admittedly, a lot of this. I see Dr. C next Wednesday, so I’m trying to prepare myself I guess!
I have added CoQ10 however, only 100mg as anything higher would definitely tear my wallet apart. Some of the supplements that are “required” are way out of my budget. I can understand they’re needed as they help boost the immune system, though.
One thing he stated was that Cal + Mag 2:1 should not be used as it isn’t even absorbed. I’ve taken mine for about 3 weeks and have noticed a slight diminishing in twitching / etc…however not enough. He also stated in that guidelines that B12 shouldn’t be taken orally (as a tablet or under the tongue) as it’s not absorbed. I know of one pharmaceutical compounding location in Victoria here (I believe I walked, er..limped..past it on Fort St.) but wonder as to the price. In the mean time I will stick with my dissoluble pellets.
I’ve gone so far as to start chewing organic turmeric raw.. (that’s not listed but I hear it’s really good for pain) .. My diet is (slowly) changing.. I just have to leave my debit card at home so I’m not tempted to “eat out”.
Compared to where I was back in January, I am doing much better however, as we speak, my deep “sighs” are increasing.. I have a multitude of symptoms that are still present,…I suppose I should create a progress thread. I never have, have I?
Granted, all of this is assuming it’s Lyme. I still haven’t been “diagnosed”. The IgeneX lab is pricey and I’m literally living off of $500 right now with no job. This may be over before it begins!
Anyways, gotta keep my head up. You’ve helped me and everyone else a lot, too Maz. Thank you 🙂
Lymies: What do you think of these guidelines? Have you been following (at least some of) them?
Hi Matthew
while I got sidetracked reading all the guidelines Maz beat me to answering you so now I can write less 😆 Thanks for posting them as I got a lot out of them.
I have seen the guidelines before but never really went through them as “I don’t have Lyme”. No doc–not even Dr. S thought I should be bothered with the testing but now that ” I do have Lyme” and have read through the guidelines they make a lot of sense to me. I am soooooo confused about what is the correct diet so it was great that he went into that. Curious that he included dairy?? I have ordered the book “The Lyme Diet” and can’t wait for it to arrive as it got great reviews. Anyone read it? I would reiterate what Maz said about not doing all the things at once. I truly believe when you meet Dr. C you will feel like the weight of half the world (there still is that money part 😈 ) has been lifted off you. I hope you find work soon! He has me on the Mino and Clindy, Cholestyramine, a lot of those supplements and is going to add in Rifampin and Flagyl when the herxing settles. Since you are in “my” town now would you like to meet for tea (herbal of course) and I will tell you more about this doc and the Lyme support group?
You can send me a pm if you like
kateSystemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C
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