Where have I been this last year?
Well, life has been crazy. I haven't been on here in a long while. So, I'll just give a quick recap of the highlights of my Lyme journey and the big moments that have impacted me and kept me from writing as well.
Last time I wrote about my Lyme journey I had just gotten a prescription for LDN and I was hoping it would help with something, pain, sleep, something.
LDN has definitely been helping me sleep. That alone, helped me gain energy and start to heal. I felt like I was finally making progress on my health and I really attribute a lot of it to finally being able to get good rest, thanks to taking LDN.
By the way LDN definitely gave me the weirdest lyme dreams for two weeks before it settle down. And it takes about a month for you to start feeling the effects of it since it's in such small doses. Just thought it was worth mentioning in case you're considering taking it.
Dad has Cancer
Then somewhere near the start of this year, 2022, my dad was diagnosed with cancer. As one might imagine that was rather stressful and emotional for my family and myself. The extra emotional stress really made my health decline again. I had a huge relapse on progress and symptoms worsened and some that I'd put in remission popped up again. I had to do a lot of crying, letting my emotions out whether they were angry, or sad, writing, and so forth to help with that.
Everyone deals with things differently, but allow me to say that you have to let out those feelings without judging yourself for them or your body will store it and suffer. And if you're trying to heal from a chronic, or shall we say, long-haul illness, you can't bottle up those feelings. I had a lot of people reach out to console our family about Dad's health, which I appreciated. But I also had a fair number of people do so in a way that invalidated all my health concerns and feelings. Cancer is bad, but so is chronic illness, so the people who told me I wasn't allowed to feel anger towards my father for not taking care of his health during this process, did not help me at all. If you feel anger, you have to feel it. You don't have to yell at your father, but you do need to process it and let it out, not stuff it down. Am I proud of the fact that some of this made me mad at him, no? But was it understandable? Yes. So I had to let it out so I could move on and heal.
I digress a little, the point is that some people very much showed me that they don't understand anything about chronic illness or how hard it can be, or how much work it is to stay even marginally healthy for me. I've learned to really appreciate the people who notice, or care, how hard this road is for me. I've learned how few and far between these rare individuals are and I've tried to tell them all how much they've meant to me in this process.
My immediate family and I were fine, we took the blows and supported one another and talked through our feelings and came out ok. My dad and I understand one another and now, at the end of this year it's looking like he will beat cancer back and all will be well for him.
Lyme Treatment Strategies and COVID-19
Ok, I don't know exactly when during this year I stopped taking things, or started other things. But I'll try to cover the main points.
After my health declined I worked really hard to rest and do everything I could to take care of my own health. I got my health back up a little, but strongly plateaued and was not making more progress, nor was I as well as I had been at the start of the year.
My doctors and I decided that maybe we should start thinking about doing essential oils and giving my body a break from antibiotics. And we started looking into SOT.
I started taking essential oils and then promptly got Covid-19. A thing I'd been fearing for a few years. I was knocked out hard, so tired and it did start to go into my lungs. But with my doctors' help, I beat Covid-19 in a few weeks and did not have lingering symptoms, thank God.
Needless to say, while I was flat out, I was having enough trouble eating and drinking that I didn't continue with the essential oils program. So, I decided it was time to do testing. Sometimes if you've been treating it's hard to get a positive test, because the treatment is effective in removing active bacteria. But if you haven't been treating, or your immune system is down, you might be more likely to get a positive test, because the bacteria has started to grow again.
SOT Therapy - Supportive Oligonucleotide Technique Therapy
Briefest rundown of SOT therapy because I have brain fog and don't actually know that much science. SOT is personalized medicine. A lab goes looking through your blood sample for the actual strain of bacteria you have. They take that and use it to make a very tiny thing that will bind to it and prevent that strain of bacteria from replicating. Thus, if your main problem is with Lyme and you do Lyme SOT you should get a lot better, if you have other problems, or damage from having Lyme, you have to deal with those. That's the theory anyway.
I still firmly believe that Lyme and co-infections are my main problems, not damage from treating them, or not treating them, or mold, or whatever. So, since my doctors agreed, we decided to order an SOT therapy for one of my infections.
In order to do an SOT therapy, you are required to get a positive blood test for the thing you're trying to treat with an SOT, as well as a blood sample to be sent to the lab that is going to make this treatment for you. Having gone off of every medication for a couple of weeks due to illness, it seemed like the perfect time to do a blood test.
I had even more of my old symptoms popping up. So I decided to do the comprehensive, full panel for all the co-infections. $900. Ouch, but so worth it.
In this age of online searches and webMD, I've heard of people convincing themselves they have things they don't. I, apparently, have done the opposite. I went and read through a bunch of co-infections symptoms and lists and decided I didn't really have any of them. My symptoms, I concluded, could be explained by the big three, Lyme, Bartonella and Babesia.
Well. I was wrong.
Testing and Results
My $900 test came back and I had everything (not exactly literally, but it feels that way). I had so many things I can't even remember what all I had. I even had things I'd never heard of, despite all my internet searches. I had Powassan virus, a thing I'd never heard of and apparently is very rare. Yay. I win at disease Bingo.
So the testing was pretty conclusive, in the four years I've had Lyme and co-infections, I've tested a few times and never tested positive for Bartonella. We suspected I had it based on symptoms, but couldn't prove it with tests. Finally, this time, now that my immune system was weakened from Covid-19, I got a positive test result for Bartonella. So, Covid-19 actually did me a favour. Don't get me wrong, Covid and I aren't friends, but it was good for me in the end.
For fun, I'll just list out some of the stuff I found out I had. (This isn't even fully inclusive)
Borrelia burgdorferi
Borrelia mayonii
Borrelia bavariensis
Borrelia californiensis
Borrelia turcica
Borrelia hermsii
Borrelia andersonii
Babesia microti
Bartonella henselae
Bartonella vinsonii
HGA - anaplasma phagocytophilum
Human Monocytic Ehrlichiosis (HME)
Rickettsia typhi
Powassan Virus
Tickborne Encephalitis Virus
West Nile Virus (I guess I really did have it after all)
Mycoplasma pneumoniae
Cytomegalovirus
Epstein Barr Virus
Parvovirus B19
Toxoplasma gondii
Streptococcal A (this one was high actually, so I may have a chronic strep infection too)
I mean, my God, no wonder I'm tired all the bloody time. Look at what my body is trying to handle all by itself. It's a ton of work. Poor thing. No wonder I struggle to feel well, and no wonder I'm sick. Look at all those viruses! This isn't even a full list. These were just the moderate to high infections listed on my results.
Now, my testing was so conclusive that my doctors and I looked at the highest infection and didn't even have to debate which infection to try SOT for first. We started with Borrelia burgdorferi, because it was a very high infection according to this test, and Borrelia is usually very immuno-suppresive. So this is how we planned to start, by attacking that strain of Lyme first.
Borellia Burgdorferi - Lyme - SOT
We sent a sample of my blood and the test results to a lab in Greece that would make my SOT therapy for me. The lab sent me back my very expensive, "personalized medicine", treatment. It was so tiny, that the whole treatment looked like one tiny bubble.
Day 1 - November 7th
My doctor fixed the SOT up into an IV bag and administered it and I had a terrible herx reaction to it that night. (Proof that it's working).
That evening I had a bit of a headache, expected from the IV and steroid, so I'm told. Then I felt a little bit of an ache in my knees, but that's not unusual for me. At 9pm the pain started to grow and then it moved to my right hip. Then my left hip. Then it settled for a good while in my lower spine. I was super excited about this because I'd never had spine pain before and I thought, "oh, that's new! It's doing new things! That means it's working!". I cannot overstate how excited I was about this development.
The pain was fairly intense, but I was jazzed. At 3am I had violent twitchies. My right leg in particular was spasming so hard for about an hour that it was just kicking repeatedly. It finally quieted down and I slept.
Day 2 - day after SOT
I felt tired all day, couldn't keep my eyes open, but I also couldn't sleep. I had less joint pain, but more muscle aches that were generally all over. I felt a little nauseous and a little like I was coming down with a flu. I had sore lymph nodes under the jaw and that general muscle achiness that you get.
Day 3 - Nov 9th
This day I had a low-grade headache all day and aches. But nothing else. Definitely feeling better than the day before.
Day 4 - Nov 10th
This day I had bad headaches. I ached everywhere. I essentially stayed in an Epsom salt bath for the majority of the day.
At 2 am my spine was hurting again, slightly higher up this time than before. And I had pain in my left elbow joint.
Day 5 - Nov 11th
This day I didn't have too many symptoms. I had a low-grade headache and I was a bit tired.
Day 6 Nov 12th
I felt like I was coming down with a cold again and I had a headache again.
Conclusions on SOT
I have no other notes on what the other days were like. But I seem to have a memory of it being similar to this. Every other day I had pain and aches and the next day would be a low grade headache and fatigue all day.
For SOT to be effective they want you to not take anything that is antibiotic or antimicrobial two weeks before you do a treatment and for one week following an SOT treatment. The idea is to let the bacteria come out to play so that you can really destroy them.
Since I had gone off everything during being sick with covid, and then stayed off for the blood test. I hadn't taken anything for almost a month when I went in for my SOT for Lyme. The herx reactions to the SOT seem to have tapered off through the month of November.
I was warned that many people see a dramatic increase in their Bartonella symptoms if they do an SOT for Lyme. I guess that once Lyme starts to die off there is a bit of a power vacuum and Bartonella seizes the chance to really proliferate. I'm not a doctor, that's just how I think it works. But I also have brain fog, don't trust me. Do your own research.
ANYWAY, the point is, I did in fact have a huge increase in my Bartonella symptoms. My twitchies got out of control. They are so bad they really have be considered muscle spasms. One night, Dec 9th, I went out with some friends and my legs were out of control. I could barely walk for the spasming was almost throwing my legs out from under me. My boyfriend eventually had to carry me to the car, because I couldn't make it the two blocks under my own power. That was the worst night for spasming and it hasn't been as bad since. But I have to say that night, has made me rather cautious about planning to do anything. Let's just say, I definitely am not doing any hiking these days.
My conclusion is that the Lyme SOT is definitely doing its job. I'm having herx, or die-off reactions and my symptoms are shifting are time goes on. Lyme has a 90 day life-cycle, and SOT's job is prevent it from replicating by binding to it. The SOT treatment lasts in the body anywhere from 3 to 6 months. So we still don't know how things are going to shake out in the coming months. It's only been about 2 months since I did the SOT treatment. But I'm excited about the possibility that it is really killing off lyme and shaking things up. I haven't had much luck getting die-off or remission with antibiotics thus far.
The good news is that after the first week has passed from doing SOT, you can double down on treatments with antibiotics and anything else in your arsenal. It feels like I'm making progress and I feel very hopeful about my future for the first time in a long time.
The bad news is that even though this test I did was so conclusive that we didn't argue about which thing to tackle first. And even though a lab was able to find the exact strain of Lyme we asked them to look for in my blood, and make me a personalized treatment, I am not considered sick by the CDC. According to the CDC I do not have Lyme disease or any of the other diseases I tested positive for. A lab was able to find a strain of Lyme disease in my blood sample and make me a treatment but I am not officially sick. So, even if Lyme disease was an acceptable way to get disability, I wouldn't qualify, because despite the fact that we found it in my blood, I "don't have lyme disease".
I don't want to get all bent out of shape about it, or make anyone else angry. So, I won't say anything else on that topic. I just thought it was important to mention.
Next Moves - Attack Bartonella
But, let's stick to the good news for now. I'm making progress. I'm responding to the treatment and I'm hoping to start seeing improvements moving forward. Right now I'm playing disease whack-a-mole. Knock down Lyme a bit and up pops Bartonella.
The next plan is to attack Bartonella. I've ordered another SOT for the strain of Bartonella I seem to test the highest for. Let's see when we get that back what happens next. I'll try to keep better notes and keep this space updated a little more often.
