First Promised Thread - my recent LLMD appointment - please read, you will learn something!!!

For those of you who don't know me - a very brief story - got infected in October 2013, began treatment Feb 2014, finished abx treatment Sept 2014, got pregnant Nov 2014, just miscarried this week - been a rough year! (Please note that the miscarriage was not lyme related)

Back in Sept when I had stopped my abx treatment, I took a break from herbs and anything of the sort because I wasn't able to handle them anymore (they were too strong!) I will discuss my weaning off therapy on another thread (the other one I promised, which I will write next as soon as I can!)

So after I stopped abx, all I remained on were vitamins and probiotics. What I also did, which many on here don't know much about was begin magnetic therapy. Magnetic therapy is good for those who are trying to get off abx and draw out the rest of the lyme/coinfection bacteria. However, the amts of the bacteria should be low enough that your own immune system should be able to take care of it, and this is exactly what I think has been happening with me. To quote the website, " our goal is to stabilize the body’s pH and stimulate the immune system through the use of magnets and bioenergetic therapies, which assist the body to regain its self-healing electromagnetic balance naturally." FYI - if anyone in NY is interested in the Dr I see for this, please message me and I will send you the info. Can't post it on here due to the rules!

Have I been 100% fine? No. But, I have been "in control" so to speak, and am going about all of the daily activities I used to do before I got sick, and have tons of energy! The symptoms I have remaining are very minimal. I have twitches that come and go. Some days are more than others, some days I don't notice them at all. (Most likely due to nerve damage, which can take up to a year to heal). When I wake up in the morning, the soles of my feet are tingly for a minute, and it goes away. My Dr confirms that is a sign of bacterial overgrowth, but NOT necessarily lyme. I said to her, what's the big deal if I feel that every morning for the rest of my life - it really doesn't bother me. She said, oh no it is a sign that you still have too much bacteria in your system - our ultimate goal is to get it down low enough so that you have absolutely no symptoms left. Have I herxed? Yes. I still herx - when? After I get the magnetic therapy. I detox and then am fine. I herxed when I was severely stressed during the month of December too, but I was not able to detox bc I was pregnant. Did this worry me? Yes. But my Dr was right - each time I herxed, I was ok shortly after. My herxes are very, very mild - just get pinchy, my twitches increase, and I just get achey. That's it. not bad! So, there are two possibilities, the spirochetes are still lingering and I am killing them off slowly, or my body has just changed and reacts differently to stress. I don't know. But I do know that I am doing fine without abx or herbs, so this is a good sign!

I also know that after this horrendous miscarriage this week (lost a ton of blood, ended up in ER, blood pressure dropped down to 89/55), etc, etc. I have not a single lyme symptom. I was so scared because I have read over and over that traumatic events cause the lyme to resurface. Well, it hasn't!!!

The only crazy thing that did happen only 2 weeks ago was, all of a sudden I could no longer tolerate my PC body Bio Omega caps (Phosphatidylcholine). Every time I took them, all of my joints hurt!! This is supposed to heal the body's cells in some sort of way. Well, this was another thing I had to stop taking. Now this is more of a toxicity issue, as was with the herbs. I just don't need to take them anymore. Which leads to a VERY important point -

The most important point with all of this is - so many of us say how our immune systems are weakened. YES - that is by far true, but so many Doctors forget that the immune system is absolutely necessary to fight off lyme and coinfections. This is why so many people who take too many things end up getting toxicity from some of the meds, but can't figure out which ones because they are on too many! Some people cannot tolerate more than one or two abx at a time, but are on two or three anyway, and it just isn't the right plan of action, because maybe the immune system is being weakened too much (we all know abx kill off the good and the bad) and it is no longer a part of the fight against lyme, so all we are relying on are the medications, and that is not good.

My LLMD is ILADS certified, and she is just awesome. I don't know where I would be right now if I hadn't found her. What was the key to noticing I really beat lyme? Two things for me - I began to gain weight, and my body temp went back to normal. I asked her, why the heck did I lose all of that weight (went down to 110lbs, I am 5'2). I seriously was thinking that the lyme bacteria was eating the food, LOL. Nope - she said my immune system was working so hard at fighting the lyme while I was in treatment, that it burned all of the calories I ingested. And you know what, that makes absolute perfect sense. So once I started to gain weight, my body temp went from 99.4 to 98.6 - not kidding. Now this may not be a good marker for everyone, but is sure was for me!!

So my plan of action as of now - my Dr gave me Floradix (an iron supplement to help with the blood loss), she switched my probiotic formula to Dr. Ohhira's Probiotics Professional Formula (has prebiotic and probiotic in it), I am remaining on my Vit B12, Vit D, Vit C, and coenzyme Q.

I asked her, well, should I restart the herbs (because she was originally going to switch me from the Byron white formulas - which I couldn't tolerate anymore - to the beyond balance herbs) But that never happened because I got pregnant. She retested my blood for western blot, and is hoping to either see the same or less bands, and she is also going to take a close look at my CD 57 level and Compliment C4A ( I think, or C3A) - the level of inflammation in my body. If the compliment level is high, she will restart the herbs. I have a phone consult with her in two weeks - I will post the results!!

Sorry this is so long!! I am sure there will be tons of questions posted, and I will be more than happy to answer them all!!)

Lyme pickle if I could make a suggestion.. I think you should do a full body detox. Liver,kidney, Gi tract, lymph, colon, etc. I noticed you hardly ever talk about detox in your protocol and I'm thinking that these syptoms you occasionally have is from all the stuff you are taking circulating around in your body along with die off that just can't find its way out. If youre 90%+ symptom free then clean your body out and take it from there.

thank you Chapelle for the update and info! once again, so glad that you are feeling good.

you made great points and gave great information.

what's resonating with me is:
the immune system point you made, about how we need to not be toxic so that our immune system can fight and handle things (infections, etc.)

this is something that I've really been learning about and taking to heart for the past few months with my son (well, whole family too). Detoxing, and building him up to help him stay healthy. it's helping, I can see it. We've made dietary changes and added spoonfuls of coconut oil, etc. and I know it's helping him.

the antibiotics he was on definitely fought back the infection for him, but now that he's off those (and ever so slowly doing herbs; he's been on a "break" from herbs for weeks now to detox again due to herxing) but anyway, now building his immune system through nutrition, supplements, etc. is our focus and he feels good!

his story could be a little similar to yours in that he feels really good, terrific energy, but still gets the occasional minor symptom now and then, yet not often (like knee pain one morning every other week) and one might think "oh maybe he could live with that", but like your llmd said I think it's important too to not leave anything behind. (if it were my body, like you, I'd probably say, "I can live with that", but when it's your kid then you want it all gone especially) But, to hear her (your llmd) say it like that, that it's "too much bacteria", is perfect. That describes it, but I hadn't worded it like that before. Thanks!

someone recently told me "it's a marathon, not a sprint". and I see that more than ever right now. like you said if we build ourselves up (and do our necessary treatments at the right pace) and keep moving forward, well… that's the way to go to getting better.

I hope your return to herbs go well! keep us posted!

Post Edited (stacestar) : 1/22/2015 10:59:10 PM (GMT-7)

Thank you for the post. I've just learned of someone in Vermont that uses magnets. I don't fully understand the theory behind it though. I will have to spend some time on the computer to find out.

Thanks for sharing your story, Chapelle!

It made sense to me from the get-go to do whatever I could to support my body (especially my immune system).

Herbs seem to have a good place in Lyme treatment - especially for those of us with lingering symptoms (that's where I'm at).

Have you ever tried Monolaurin? LDN?

Thank you for such a great post, Chapelle!! Very interesting about the magnet therapy!

I'm so very glad that you are now one of our "success stories"!!! You have been through a lot and have come out with a good attitude, and that is the best part!!

Hugs Chapelle!

Curious as to what kind of magnetic therapy you are doing. Is it PEMF or something different?

Thanks for this post, Chapelle! It's great to hear that you went through so much and are doing well. I'm impressed!

I agree with you on the point about not taking too much 'stuff'. So far, my Dr. has only prescribed two antibiotics at once. I will now for the first time after 6 months of treatment add in a third...but it will be only for two days per week.
Even my supplements....I have pared them down...and some of them I only take every other day.

Floradix is a great supplement for iron....not so harsh on the body as the pharmaceutical iron tabs/liquid.

Hi Chapelle,

Thank you so much for updating us!

It sounds like you are moving in a great direction!

I sent you an email regarding the magnet therapy. I'm so curious! :)

Thank you - I am glad to share the info.