Hi there, I'm not a doctor, so please don't take any of this as medical advice. I'm simply sharing my personal story in the hope that others will find hope and healing in my journey. I'm an Amazon affiliate and may benefit from any link you click (thank you!). Again, my links are not intended as medical advice, but I'm simply sharing the products I've used that have helped along the way. Please find a Lyme-literate doctor you trust, and talk to them about any treatment or supplement before you start it!
Lyme Disease is such a strange illness in this day and age. It has been denied reality for so long, many have suffered for decades with mysterious chronic illness, never knowing the real cause. Most people who come to understand they have it, have done so via a non-traditional route, such as a naturopathic doctor, who is willing to do testing, or possibly step out on a limb to treat empirically, based on symptoms alone. Strangely the CDC's diagnostic criteria are so strict that very few people who have the disease will ever actually be told this by the mainstream "non-Lyme-literate" medical community. It never crossed the mind of my regular physician to test for Lyme when I came in presenting with severe immune dysfunction (Candida in my mouth and pain everywhere, especially my throat). She gave me an antifungal and then tried to send me off to a specialist, but nobody would take me! The ENT doc said he did surgeries but didn't know what to do with a severe throat infection that never went away, and the infectious disease docs at Mayo (who should have seen me) wouldn't take me without some kind of proof that I was as sick as I was. There was no way I was coming off the antifungals to let the Candida come back again just to prove I had it, so I had to go a different route, but in the meantime, I was left wondering for months why my body was giving up on me.
After learning I had Lyme, a few months later, I was at a Lyme conference, trying to learn more about why I was so sick, and the MD giving the talk asked all of us who had Lyme to stand up - in the room there were at least 200 of us. Then he walked through the CDC's diagnostic requirements, and had any of us who didn't fit each step sit back down. Of course the question of my living in a Lyme-endemic area and if I'd ever had a known tick bite or rash knocked me out of the running (I live in AZ and have never been bitten by a tick or seen a rash, to my knowledge). By the time he was done, only about two people were still standing, out of a room FULL of Lyme patients! This was to show how out of touch with reality the CDC's diagnostic criteria are - they essentially force doctors to skip diagnosing genuinely sick people, when Lyme is very often a likely, and treatable, culprit!
So my first question on receiving the news that Lyme was likely underlying my complete immune system breakdown was - what do I do now? Where do I even start?
Thankfully God had led me to a wonderful ND here in the Phoenix area, who started me on the NutraMedix Cowden Protocol. This was the best step I could have taken. I had a lot of wrestling to do with what I thought I knew of medicine (thinking that only pharmaceutical antibiotics could possibly be useful - NOT true!) before taking the plunge, but the reality is that this herbal protocol was the absolute best thing for me at that point. My digestive system was ravaged because of mold toxin exposure and the bacterial assault it triggered, I was so damaged that traditional antibiotics would certainly have killed me with the additional assault on my gut. The Cowden Protocol was safe, slow in buildup (because killing too much too quickly when you are overly toxic can make you much worse - I've done this lots of times; I'll post about that another time), and slowly but surely, helped me to start feeling better. When I started, in my pride, I thought I had done a lot of detox work already, and I was so sick digestively at that point, I was eating nothing but organic meat and non-starchy vegetables, so I tried to skip ahead a few drops on the SLOW schedule and up my dosage of the "killing" herbs a little faster than they recommended. It KNOCKED ME OUT for a day. Clearly, it was killing off a lot of bugs who produced toxins my body had no way to handle. So I backed off, followed the protocol correctly, and over the course of a year, was doing a lot better with certain symptoms.
Living with, and actively treating this multifaceted toxic disease for three years now, I've come to understand that different symptoms are caused by different things. There are the very obvious mold symptoms, very obvious upper respiratory bacterial (likely Staph) symptoms, very obvious Lyme symptoms, and very obvious other symptoms...I'll call those Bartonella, because that seems to be the closest fit from what my doctor and I can figure. Sometime I'll blog more on what exactly each of those are for me. But suffice to say that the Lyme and Bartonella symptoms mostly went away when I was on Cowden, until I tried to come off. Then within two weeks, I started to have the full body flu-y feeling and lymph node swelling (Bartonella), and the random intense pain in my spine followed by a month of soreness in that area (Lyme). So I had to keep on two or more of the herbs rotated for another 6 months until I finally decided to go after these bugs in a different way. But starting with Cowden definitely helped my body heal enough that I could tolerate the subsequent harsher pharmaceutical treatments.
First I tried Antabuse (Disulfiram), building up to 250mg per day for a couple months. It helped the Lyme symptoms go down to near zero. But I got
to about month two or three, and started having bad depression and anxiety - never things I deal with otherwise. My doctor said that was likely a result of the buildup of the Disulfiram in my system causing its own toxic effects. At that point, I came off for a while, before doing it again. Over the two courses, my Lyme symptoms reduced significantly. I still had some biofilms and infection I was dealing with in my sinus and left ear, and the resulting toxic drainage down my throat meant that I always had a pain in my neck on the left side in the C3-C5 area of my neck. This was one of the spots my Lyme lived and nothing I had done before changed that fact. However, with Antabuse and some supplemental help (PRP, platelet rich plasma injections in that area), the continual pain there has now completely gone away! The one caution I have regarding my experience with Antabuse (aside from tell your doc if/when you start getting depressed and consider if it's time to stop taking it) is that it can have bad reactivity with other medications - I had to stop one of my off-label, less-than-legit (but oh so helpful against the fungal infection I won't stop using it) supplements while taking it because they definitely reacted together to produce intense intestinal cramping. So if you're like most Lyme patients and have a cocktail of antibiotics or supplements and other things you're taking, be careful when starting Antabuse, and make sure nothing interacts with it that could really hurt you. Calling the pharmacist to go through your list is always a good idea. Aside from that, I didn't have issues with alcohol in foods or products that some people do - alcohol hand wipes were fine for me, as was eating vinegar or mustard, although I did have to limit my sugar alcohols - two or three xylitol mints in a row did make me sick to my stomach once.
Finally, after going through the Antabuse and reducing the Lyme significantly, I was still stuck on Cowden for the "other" flu-like symptoms, which also came on with the sudden inability to regulate my temperature - I'd find myself freezing out of nowhere, along with the body-wide aching feeling and full lymph nodes along my neck and just feeling generally icky all the time. Breast tenderness was also common with these flare-ups when I'd stop Cowden, and I wonder how much of my difficulty nursing my kids actually came from this particular bug - I think Bartonella, though it could be Mycoplasma as well...it's really hard to tell. Anyway, the bug without a name - I went after it next. Coming off the Antabuse, I found Samsara Herbs Tick Recovery blend that included several Cowden herbs along with a couple more Bartonella-specific herbs, so finally stopped Cowden and I started that alongside a new harder-hitting pharmaceutical antibiotic regimen. Here's a link to that herbal blend, below, so you can see what's in it. I still take a tiny spoonfull daily, just for good preventative measure, though I'm hoping to wean off it soon.
This time, my doctor prescribed dual antibiotics, Azithromycin and Sulfameth/Trimethoprim, which I was on for 6 months along with a biofilm disruptor (I'll talk more about my experience with biofilm disruptors, the good and the bad, in another post). Unfortunately, when I tried to come off, I was unable to stick it. The flu-like full body pain and other symptoms soon came back again. So he had me switch to Azithromycin and Rifampin, with Methylene Blue as a biofilm disruptor. He said I had to stay on them for four months, but I just couldn't do it. The damage to my digestive system was too harsh and they made my ear all goopy. For sure, taking Ohira's probiotic at this time made a HUGE difference, so my digestive symptoms were less than they would have been, but by the end of two months, I couldn't do it anymore and came off again, having to do an Ohira's reset for a week to get my bloating and other digestive discomfort slowly back under control.
This time, I was able to last about a month before the flu-like body ache symptoms returned again. I was happy that I had progressed, but so frustrated that nothing seemed to stick! So it appeared to be time to pursue cavitation surgery. Clearly there was someplace in my body, sequestered from my immune system, that was harboring these bugs, so that once the antibiotic pressure was gone, they came back out to play again! After the cavitation surgeries (which I'll discuss in a separate post), I had to go back on the antibiotics for another month because of the infection in the surgical sites - gotta love being immune-compromised from all this! But after another month, I said "enough" and tried my luck at living without the pharmaceutical antibiotics.
Semi-success...I lasted two months this time!
The symptoms this time around were triggered by my one toxic area - the never-ending infection in my ear - acutely getting much worse after trying a new treatment on it. So I know that the bugs that cause this - Bartonella?, Mycoplasma? - are still there, but as long as I keep my body from dipping back into the extremely-toxic zone, my immune system can handle it without all the flu-like symptoms showing up.
Here's where I know God truly gave me the next steps. I had asked for prayer because I was very distressed at the idea of going back on the antibiotics again because of the digestive side effects and, moreover, the worsening of my ear infection that would always accompany starting or stopping antibiotics. In response to my request for prayer, a friend recommended a rather "fringe" treatment I had heard of before in the Lyme world, but had never really looked into, but at this point, after reading the book on it, I ended up modifying and trying it. I asked my doctor about my plan, and he had no experience with it, so he couldn't say one way or another, but when pressed, he said he didn't see any harm coming from it (perhaps digestive, but we agreed I could tell for myself how bad the damage being done there was - if it wasn't as bad as the antibiotics, it was worth it to me to try it to get rid of the Bartonella). What was it? I have a medical-grade ozone generator I'll talk more about in another post, and I simply made ozone water and sipped a teeny sip every hour for about 6-8 hours each day for two weeks. Since then, I've backed off on it, to a sip here and there once or twice a day, and I have had zero Bartonella symptoms return (despite being hit with two acute illnesses my son brought home in the past month)!! I'm hopeful that this will work to keep it at bay so that I don't have to go back on antibiotics EVER AGAIN. I obviously cannot advocate anyone else trying this, since I'm not a doctor, but here's my testimony...it has worked to fight off an underlying severely resistant bacterial infection that nothing else has been able to touch, so you can make up your own mind about it. Perhaps I'll post someday more about the treatment protocol that gave me the confidence to try it.
I'm so thankful to God for bringing me the healing I've experienced over the past 3 years. I keep waiting and watching expectantly for full healing in the future. My ear (if it can ever heal) and the mold in our roof seem to be the two remaining pieces of the puzzle. For anyone with Lyme, take heart - know you can feel well again! It's a long road, but find the right Lyme-literate doctor who will support whatever crazy treatment you want to try, and who will suggest their own to help you. Herbs can get you far, but maybe not all the way - I am thankful my doctor is open to and welcomes all interventions when they are needed, herbal and pharmaceutical and proper use of medical ozone. As you can see, on my journey, all three have been absolutely indispensable to my healing path. And most of all, trust the God who heals. Seek him, trust his plan for your life, and He will guide you where you ought to go! On this path he has not failed - when I ask for answers, they soon come, and I start to progress forward again. I pray my journey is encouraging to anyone else out there seeking answers - don't hesitate to email me for prayer or with questions!