Before I write anything here I must iterate that I am not a doctor. This is strictly my opinion, as a Lyme survivor and Lyme warrior. Having not done any intense research I can only share my experiences. I have looked up some of the protocols to see what they include. Many of the meds included in the few protocols I’ve checked out I do recognize. However, I still believe treating with a Lyme literate doctor is the best route. My take on Lyme disease protocols is that they lack the personalized treatment needed to bring this complex disease into remission. I’ll explain what I mean further down.
I want to talk about this today because I see a lot of questions on support groups that concern me. They concern me because of the implicit nature that there is a one-stop, get-well-quick fix for this disease. This stems form the lack of information for Lyme warriors around the world. Unfortunately, there is a vacuum that is easily filled with misinformation. This is further complicated by a society of instant gratification. Folks everywhere are looking for that one medicine that will cure them.
The problem is that Lyme disease is a complex illness that can affect every part of your body. And, it affects each of us differently depending on a number of factors. I understand the desire to get well quick, trust me. However, it is my opinion that, in the case of Lyme disease, one size does not fit all. With that in mind, here is my take on Lyme disease protocols.
These are the type of questions I see that concern me
“What medicine worked the best for you?”
“Was there a medicine that was a game changer for you?”
“Have you tried the (fill in the blank) protocol? Did it work for you?”
“I’m thinking about going to (fill in the blank) retreat that says they’ll cure me in (insert number here) months. Has anybody done this and found success?”
Here are my answers, unabridged and earnestly honest.
What medicine worked best for you?
Every medicine I took did the job it was supposed to do. There was not one medicine that was the end-all-be-all. I firmly believe my doctor had a reason to put me on each antibiotic, herb, vitamin, mineral, tincture and supplement. It is true that I had a stronger reaction to some and at times reactions that were not so favorable. The blessing of having a LLMD, instead of a Lyme disease protocol, is that when that happened, she tried something else. There is no singular medicine that worked best for me. My doctor tailored my medicines for ME, according to my symptoms and needs.
Was there a medicine that was a game changer for you?
I have a similar response for this question. There were a lot of medicines that were game changers, for ME. When my doctor discovered my adrenals weren’t functioning, hydrocortisone and A-Drenal were game changers for me. Eventually, I no longer needed either of those meds but I still needed a little help with energy. So then, Rhodiola was a game changer.
Once it was discovered that I wasn’t producing progesterone or testosterone, those hormones were game changers, for ME. So were all the other meds I took. Doxycycline did it’s job superbly. Minocycline helped immensely. Bactrim was a key player. I firmly believe each and every medicine my doctor prescribed was a game-changer. I can say that confidently because my doctor treated ME, individually. Again, gratitude, gratitude.
Have you tried the (fill in the blank) protocol? Did it work for you?
Having never used any of these protocols, I have no idea. My guess is that maybe they work for some people but probably not the vast majority of us. The problem that I have with Lyme disease protocols is that there are so many variables to consider when treating Lyme disease. For instance, how long were you infected with Lyme disease before getting diagnosed? Have you been tested for co-infections? Have you developed any other underlying illnesses as a result of your infection? All of these variables, and more, won’t be addressed by ordering a protocol online and following a universal treatment regimen. Lyme disease does not affect everyone universally. Let’s look at these questions individually.
How long were you infected with Lyme disease before getting diagnosed?
This one question alone is enough to steer me away from a protocol. I went somewhere between twenty or thirty years undiagnosed. Therefore, Lyme disease had spread throughout my body. I had more symptoms than I could count. I lived with symptoms for years, not recognizing that they were symptoms. In order to treat me as a whole individual, my doctor sat down with me every two months and did an extensive review of my symptoms. These symptoms changed, sometimes dramatically, from one appointment to the next. This allowed her to treat my symptoms specifically. A Lyme disease protocol can’t do this.
Do you have any co-infections?
The medications that you’ll take for co-infections are often completely different from those you’re taking to treat Lyme disease. Sometimes there’s overlap but not always. Also, it wasn’t until I began treating my Lyme disease that my doctor was aware I had co-infections. She suspected it but starting antibiotics brought some of those co-infection symptoms to the surface, allowing her to tackle different aspects of my illness. There were times when she felt it was more important to get some symptom from a co-infection under control before returning to battle the Lyme bacteria. You won’t get this type of tailored treatment from a protocol.
Other underlying illnesses or deficiencies caused by Lyme disease?
This was a huge one for me. And, one that I would have been seriously under treated were I following a Lyme disease protocol instead of treating with a LLMD. That could be the case for you as well. Lyme disease commonly depletes certain vitamins and minerals. Not to mention the affects it can have on every system in your body. As I already alluded earlier, in my case Lyme had attacked my reproductive system, leaving me deficient in progesterone and testosterone production. Lyme also attacked my endocrine system, leaving my adrenals severely sluggish. It is really difficult for your body to fight an invasive bacteria if your adrenals aren’t functioning.
My doctor ran regular blood work to ensure I was as healthy as I could be, giving my body a fighting chance to kick Lyme diseases ass. She was concerned about mold toxicity, yeast overgrowth, liver function, iron levels, etc., etc. Need I say it again? Following an online Lyme disease protocol won’t make these discoveries.
As a Lyme warrior and survivor, I highly recommend a LLMD
I owe my doctor a debt of gratitude for the highly personalized treatment I received. I wouldn’t be where I am today without each of the multitude of medicines she prescribed. My heart goes out to everyone out there who is suffering and trying to find health and wellness. I am by no means judging any of you for your inquiries. I commend you for reaching out, asking questions and fighting for your body. It isn’t always an easy thing to do. Due to the difficulty of treating Lyme disease, physically and mentally, I can’t find any reason to use a Lyme disease protocol. I never would have made it through my incredibly difficult journey without the constant support of my doctor and the many awesome nurses and staff at my clinic.
My hope is that someday Lyme disease patients will be treated with the same respect as other chronically ill patients. Lyme disease treatment shouldn’t be such a mystery. My heart breaks for all you still searching in the dark for treatment that should be easily accessible. Hopefully, if we keep fighting for recognition, the veil surrounding this terrible disease will be lifted. Until then, I’ll keep writing, advocating and fighting for all of you. Here is a link if you need to find a LLMD. You can also search for Lyme disease support groups on Facebook that are specific to your area. Keep fighting Lyme warriors!!
