1000Daisies said...
Mom of 2 said...
Hi everyone
Yes, the symptoms are back a year after stopping treatment. I unfortunately have a different mind set to all the treatment and I'll explain why. I'm feeling that my llmd is a cash cow and refuse to see him.
Summery;
I stopped all treatment 10/1/2015 after 1.5 years. I'd have enough of pills, both antibiotics and all the natural protocols. After stopping the treatments I had a surge of symptoms, but very slowly they went away. It took about 8 months for them to disappear. I was even sleeping better, after dealing with insomnia for 5 years. I also was able to go hiking again over the summer. I thought maybe my immune system was able to keep the bugs in-check. I wasn't 100% but I could live with what was left. Based on my experience it gives some credibility, in my mind, to the CDC's post lyme syndrome.
Fast forward to November 2016, I caught a cold with a low grade fever. I didn't think it was a big deal, a few days later symptoms returned. The cold was my first illness since the treatment ended. This is my experience thus far.
Just to let everyone know, I do not wish to be inflammatory. I only seek answers with an objective mind. Perhaps I have become cynical at this point.
It seems to me there are too many contradictions in Lyme and not enough duplicated clinical research. I would like to obtain any and all per reviewed research, but it has to have been replicated by others or there is a potential for faulty or contaminated procedures.
My personal thought process is, there isn't a magic bullet for killing lyme. Long term abx only keeps the bugs in persister cells. Since I have had Lyme for a very long time they are are so deeply embedded in tissues they will not be eradicated by herbals or anything else for that matter. I haven't seen any peer reviewed documentation scientifically proving all the herbs will kill Lyme. I have seen a surge in the amount of products being sold stating it will help cure lyme (Stevia, really?). I feel people are making fortunes off desperate people wanting to get better (me included) been there done that. Herbals are not regulated, so the people selling them are not held accountable for anything. I do feel once you have lyme you will always have it.
Can someone please show me documentation on the difference between a herx and a flare? I can't find anything, again scientifically proven, that lyme die off is toxic.
Sorry. But I now question everything and I have become a skeptic to the whole process. I will not allow myself to jump on the bandwagon to every lyme breakthrough without the results being clinical duplicated by peers.
I can relate, agree, and sympathize with so much of what you are saying.
I have gone down many failed treatment paths. Like many others, we have seen many medical practitioners who failed to help us. We have been difficult to treat (except for Kid#3 who was unbelievably easy to treat).
BUT - where I diverge from you is that I take a different approach. I don't need peer reviewed studies at all.
Every failed experience is a learning experience. It just makes me stronger and more stubborn to find the next thing to try. With sick kids, I will never ever give up. BUT I am definitely more skeptical at things we try nowadays.
But if I gave myself the limitation of waiting for peer reviewed studies, then quite frankly, we'd never be well in this lifetime. I'm not in any way saying this is you, but I'm on other boards where they won't do anything unless there is some study that backs up their thinking. But studies are so extremely limited by funding, by people's flaws, by time, and so much more. Why would I wait for that? Sure, I would love to have that information, as I am an extremely analytical person by nature.
So, I evaluate new options with my analytical skills, and I discuss that with my doctors. Then I go from there. For me, I am very grateful for the options.
Other points...
As for LLMD being in it for the money, sure - but there are many that are not. Our functional medicine MD doctor's office is reasonably priced (compared to many others here who pay several hundred or even over 1000 for visits). He does sell and recommend supplements, but I am never pressured to buy from them. In fact, I tend to buy locally, and that is totally fine. My point is that not all doctors are like that, thankfully. But finding them - well, that's another story, and yes, that can be very difficult. I have seen many medical practitioers before I found the set that I am working with now and that I respect.
As for Stevia, there are prior post threads about
stevia and the study related to it. It's not looked upon highly here on this board. One of our doctors does treat patients with it. It's like $10 for a small bottle, so clearly not a huge money maker. He said that he has seen good success with it in his practice. For my family of four, we say nothing good or bad with it. So, we moved on.
As for antibiotics pushing them into hiding, sure - I agree with that. But if you have a protocol with a cyst buster, that can be addressed. Seems to work for some but not so well for others.
There are people who get better on abx protocols, herbal protocols, and combinations (and even other things). There are people who don't get better or desperately struggle (like many of us here). There are so many things that can complicate our healing (methylation pathway impairments, heavy metals, detoxification, mold, coinfections which can be worse than lymes, parasites, and so much more), and each of us is so very different.
I can understand your frustration. (Sorry, I don't mean to be putting words in your mouth, but I sensed frustration.) I can relate because after all these years, I have been very much frustrated and disappointed too. But I won't ever stop trying for my kids. BUT I do not jump on bandwagons either. I am very skeptical of many treatments myself, especially after so many failed for us.Everyone has to be comfortable with whatever treatment path they decide to venture down. If it makes sense to them then why not. I do realize genetics plays a part in our healing process.
I think at this point I'm beyond frustrated. Now I'm angry, for so many reasons. I seek the truth about
Lyme, not conspiracy theories, just facts. What do we really know? Lyme has been around for over 5000 years, but only since 1975 have we "discovered" it. What have we learned in the past 32 years? What other bacteria took over 30 years to combat effectively? Imagine if it took over 32 years to come up with a vaccine against Zika or Ebola? Okay, that might not be a good comparison, but you get where I'm going