Outlining Treatment So Far

Well ,it’s been a long bumpy road, and there’s still no end in sight. I am frequently asked what I have done myself to treat these infections, so I’d like to get that posted so I can link to it when I need to without typing it all, as typing it all will be a marathon.

For several years after getting sick, I saw a string of Doctors while I got sicker and sicker. I live in an endemic area and reported symptoms of tick born illness, and a history of many tick bites. Physician after physician would tell me I did not have a tick born illness, regardless of clues in my blood work, and no matter how many symptoms I reported or how debilitating the illnesses became. I took a string of prescriptions from these doctors to go with my long list of misdiagnosis. I din’t keep good track as I didn’t know how important that was, and none of it ever helped. Eventually, I was bitten again by a sneaky tick and this time I got a bullseye rash.

My bullseye (EM) rash which had an oddly blistered center and burned like crazy.

I went to the emergency room, where the PA, after some research, diagnosed lyme disease and gave me oral doxycycline. I followed up with two general practitioners I was seeing at the time, and ended up with 6 weeks of doxycycline. It didn’t seem to do anything at all. My GP suggested I try an infectious disease doctor at a teaching hospital. So I went to see one at Albany Med. I now was testing CDC positive on standard lyme testing, and he also found I had anaplasmosis and Rocky Mountain Spotted Fever. However. he said, that couldn’t be the source of my illness as I had Doxycycline already. He thought I had Multiple Sclerosis and sent me to neurology. After a full work up, the neurologist who specialized in MS said that I absolutely did not have MS, but neurological lyme disease. Unfortunatley, he didn’t treat that and suggested I return to Infectious Disease for treatment. I did and infectious disease repeated the same bs that nothing tick born was making me sick.

Frustrated, I booked an appointment with a lyme doctor two hours away who immediately clinically diagnosed me with babesia in addition to the Lyme, anaplasmosis, and RMSF based on my symptoms. At this point I was so sick I didn’t think I’d make it, and I barely functioned at maybe 15-20% of what life was like before getting sick. It was terrifying. The lyme Doctor prescribed me a very common combination of mepron and azithromycin. Now, I always hated taking medication, and I’d never seen anything like this disgusting stuff. I couldn’t believe I had to swallow it twice a day, and if it wasn’t nasty enough, each dose must be taken with at least 28 grams of fat. The doctor recommended Peanut Butter for the fat. The stuff is a thick disgusting toxic colored yellow liquid that really looks like radioactive paint. The pharmacist warns you not to spill as it stains. It costs a fortune if insurance doesn’t cover it.

Not sure where I found this. it’s not my photo but it’s very fitting.

A friend who had taken it said she needed to be watched when on it. Sure enough, it made me feel like someone had turned my lights half off. nausea got worse, head and neck pain got worse, I couldn’t handle even dim lighting, and the brain fog was almost unexplainable. But I wanted to kill the bugs more than anything. I learned about detoxing and probiotics. I used them religiously and kept taking the meds. . I took these meds for two months, and then we added cefuroxime axetil to the mepron and azithromycin.

In my fourth month of treatment, the progress I had begun to make sort of stalled out. So my Lyme Doctor stopped the mepron and had me try flagyl instead. Many people pulse flagyl, but I took it every day. He stopped the azith and the cefuroxime and instead put me on penicillin Vk. Many people look at flagyl as a cyst buster for Lyme (it breaks down the round body form the bacteria go into to hide from antibiotics and defenses so they can then be reached by antibiotics) and it is, but my LLMD said that because babesia is a parasite with a tail, Flagyl wil kill it as it kills everything with a tail. Now the bugs were dying like crazy, but when they die, they make you feel worse, and leave pieces of themselves clogging up your body. Now it became practically a full time job to treat the bugs and detox enough to keep up. It meant epsom salt baths in the morning, Castor Oil packs at night, Milk thistle capsules every night, lemon water all day.

Month 5, we left the antibiotics the same, but now I developed a new fun issue. All of these antibiotics were destroying my body’ healthy flora. For the first time in my entire life…I had yeast and it was not fun at all. The doctor gave me one anti fungal to take daily and another to take every 3 days, and we kept on killing. I was taking I think 16 capsules every day.

Month 6, the LLMD decided it was time to give my stomach a break and try IV antibiotics. I got a PICC line inserted in my left arm (a catheter that runs from your arm up through a vein into your vena cava, allowing medicines attached to the line to be dumped right into the largest vein next to your heart rather than going through your digestive track.) I thought I’d be done with oral meds for a while, but because IV meds don’t work for babesia. it turned out I still had to take flagyl orally too. The Picc line meant I needed a home health aid to come to my home and change my dressing and take blood every week, and i wasn’t supposed to use that arm to lift anything over 10 pounds. I had to be meticulous about keeping the line clean and dry, wrap my arm for every shower, and I now had to drive to see the Doc every two weeks instead of once a month. I began infusing IV Rocephin in my PICC line every evening (a process that took just over an hour). ANd I took flagyl daily too. Rocephin is a very strong antibiotic, and it tends to destroy gallbladders in particular, so I also had to start taking a prescription med called Actigall. to protect my gallbladder from the rocephin.

an IV Rocephin infusion

Month 7, I still did daily IV infusions, took actigall and antifungals to counteract the side effects, and my progress began to stall again. So we switched tindamax for flagyl (cousins with similar but not identical actions) and then also added a new antibiotic called sulfamethazole and trimethoprim.

Month 8 I had daily IV infusions, actigall, antifungals, tindamax, and we switched the SMZ-TMP for clindamycin.
Month 9 remained the same except we also added ivermectin to the rest of the mix at my request.

Month 10 I continued the IV rocephin, the tindamax and the clindamycin. Now I had developed new hallmark signs of another infection bartonella, and been given a clinical diagnosis, so we also added rifampin for the bartonella. (rifampin comes with a fun side effect of usually making all your bodily fluids including your tears blood red. So I was really looking forward to running around with blood red eyes, but of course, I didn’t even get the fun side effects from rifampin. It just didn’t affect me at all. I started stalling out in my progress again.

Month 11 we kept on the IV Rocephin, switched tindamax back to the nasty yellow toxic paint mepron, tried rifampin for one more month and continued to take actigall and antifungals. At this point, I was maybe at 40-50% of my previous self. This was a big improvement from 15%, but I’m not so patient, and this wasn’t enough progress for me. Additionally, every time I went for my two week check ups the doc would frustratingly ask me what I thought we should do. (isn’t that why he wore the stethoscope and got the big bucks rather than me) and I started to get really frustrated. I started adding herbal treatments to my antibiotics.

Month 12 we dropped the rifampin since it wasn’t helping. Continued with the toxic yellow paint (mepron), the actigall and the antifungals. I also continued to slowly add herbs to the mix. Halway through this month, we dropped the mepron and went back to flagyl, although I honestly don’t recall why.

Month 13 we continued the yellow paint med, the IV rocephin, the actigall and the antifungals and the herbs. At the beginning of this month, something amazing happened. My blood work, which for over 5 years had included abnormally high white blood cells and platelets suddenly went normal. My General Practitioner joked he should frame this and hang on the wall. I completely agreed. This time, the Doc kept me on the IV roocephin, the actigall, the antifungals, and gave me more yellow paint mepron. I was maybe feeling about 60% better, For the first time, I thought I might finally be coming out the other side. two weeks later, the routine twice weekly blood work since the IV infusions began showed an issue. My blood glucose level was supposed to be under 99. Mine had suddenly skyrocketed to 199.

the Lyme doctor did not know what to do with my sudden high sugar. So he decided the IV rocephin was probably the culprit. I really didn’t feel like I had the IV long enough to finish killing the pathogens and that I needed another month or two. But I didn’t argue, because I was a little freaked out by the elevated levels. The doctor immediately pulled my line out right there in his office. Then he seemed to have completely given up on me. After all these months of heavy combination antibiotics, now he just wanted to give me oral doxycycline again. This made no sense to me, and didn’t seem worth the exorbitant price tag to see him. So I decided I needed a new plan.

This time, I gave up on ALL the doctors. I still see my General Practitioner for testing and things, she does believe I still have active tick born illnesses, but doesn’t have an idea what to do for them when they are not recent infections. But mostly, I decided that I had given the doctors more than enough time, and I quit expecting them to fix any of it. I decided I would have to fix it myself.

So, I read all of the books by Herbalist Stephen Buhner. I had already begun incorporating herbs the last couple of months. But now I dug deeper. Buhner is an amazing gift to the world. He’s compiled herbal protocols, based on science and research, for lyme and all of the coinfections. And he has summarized these protocols in a do-it-yourself manner in all of his books for nothing but the cost of the book. What an amazing thing to do for all of us suffering. So, I took his books, and studied in detail and then wrote out all the protocols and herbs I needed for my symptoms. I began them slowly. But quickly worked my way up. I bought most hers in bulk powders, and put them in capsules so I didn’t have to taste them. I was taking almost 100 capsules a day once I got up to the full protocols. And some liquid herbs that didn’t come in powder too. I won’t put his exact protocols online, I think people should get his book for that. But I will lump all the herbs together in one big list:
Japanese Knotweed, sida acuta, cat’s claw, Chinese Cat’s Claw, Red Sage, cryptolepis, chinese Skullcap, Andrographis, Kudzu, lion’s Mane mushroom, cordyceps mushroom, Greater Celandine, ashwaganda, Monolaurin (lauricidin*), Serrapeptase, EGCG, Milk Thistle Seed, motherwort, isatis, rhodiola, Sweet Annie, Lemon Balm, Arnica Montana, byronia Alba, Lemon Balm, Lysine, hawthorne berry, angelica, houttuynia, Bee Pollen, NAC, Pomegranate, and Olive Leaf Extract.

This is how I organize all my herbal powders. Then I sit down with my box and go through it and take everything I need 4 times a day.

So far, the herbs have helped immensely. But I have had to stop them periodically, like when I discovered I was pregnant. But I still keep coming back to the herbs. I’ve now started growing the herbs i can myself, and I take those herbs and make my own herbal medicines. It’s really been an incredible learning process that is nothing I ever expected to do, and they have probably been a part of what has saved my life during this battle. Here’s some of my herbal medicine:

So far, this tale still doesn’t have an ending. I am fully into taking Buhner herbs, but I don’t know what else I need to do to get to remission. I do know, that if Doctors had listened to me when I first got sick and treated me properly, then it would have been much simpler to fix, but since they denied I had anything tick born for so long, the bugs are all spread deep, and very effective at evading any defenses. it’s ridiculous that I have had to take all of these things and still haven’t been able to beat them yet. But I am hopeful that I will prevail one day.

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