6 months later, here’s my journey into treating Lyme disease holistically…
“So, how are you feeling overall?” my doctor inquired.
“Depends on the day.” I smirked, “Maybe about 15-20% better overall though.”
“Good. That’s exactly where I’d expect you to be.”
15-20% better is where I should be? That was both encouraging and discouraging news all at the same time. I was encouraged that my body was responding appropriately to treatment. But I was discouraged because I was ready to 100% better yesterday.
If you have Lyme, I’m sure you can relate.
I’ve actually had two appointments since I last wrote a treatment update (You can read my first update on Beginning Lyme Treatment here.) Naughty me. I was planning to write an update much more frequently.
There simply aren’t enough people writing about their Lyme protocols and what’s working and what’s not. And there’s simply not enough hours in my day to do everything I want to do…especially when I sleep half of those hours away. 😉
Treating Lyme Disease Holistically: Improvements
Before we get into the protocol, I’d like to focus on the positive. Just talking about everything I’m spending way too much money on is depressing. There are some good things that are coming because of all this money spent.
- I’ve not been having much calf pain. It’s 90% better.
- I’ve not had any chest pains for the last 2 months and my heart hasn’t been racing either.
- My general fatigue and stamina has gotten better by probably 10-15%. I still have some really bad days where I feel like I’ve been drugged, but they are much fewer and farther between.
- Muscle and joint aches and pains—probably 30-40% better overall.
- I stopped gaining weight about a month into treatment. Over the past 2 months I’ve lost about 5 pounds. That’s not much, considering I gained about 75 pounds over a 9 month period, and not enough that I can fit into any of my clothes. But it’s better than gaining, so I’ll take it.
6 Months Later: Continuing Fatigue
I still have good days. I still have bad days. My good days seem to be even better, and my bad days not quite so bad. The most irksome symptom is the fatigue and lack of stamina. I really can’t do anything that uses much physical energy without it completely knocking me out.
One Saturday I was having a really good day. I thought it would be a great idea to get outside and work in my yard. I worked outside the better part of the day. Of course, I had to sit down a lot and take breaks, but I’d get up and keep going. Even with the breaks, I paid for it the next day.
I didn’t make it to church and spent the better part of Sunday in bed. I felt like I could hardly function. My body had exactly zero energy. It’s frustrating when you can’t even do things that seem like such normal activities.
I’m ready for my energy to come back. But I know it will likely be one of the last things to improve because my body is using it’s energy to get better. Despite my urgings, my body really doesn’t care if I want to spend a day making freezer meals or pulling weeds.
Treating Lyme Disease Holistically: 6 Month Protocol Update
After My June Appointment
1. We added a detox protocol due to severe reactions to Coartem. You might recall, from my first protocol update that I talked about how awful each round of coartem made me feel. It was so bad that I had to make sure someone was around to help the kids. It pretty much kicked my butt.
My doctor believed (and rightly so) that while the coartem was working to kill the babesia, my body wasn’t detoxing quickly enough. So, I took the next round of coartem off, while I began a detox protocol to get my body ready for the next round.
The detox protocol consisted of taking the following daily:
- molybdenum (150 mg)
- boron (3 mg)
- Vitamin E (400 IU)
- Sparga (titrated from 1 up to 20 drops)
This detox protocol made all the difference with my continued rounds of coartem. While I was a bit more fatigued than a typical day with each round, I didn’t have any severe reactions to the medication.
2. Periodic accupuncture was added to my protocol. I was a little leary of this one. While I’m all for alternative treatments that work, becoming a human pin cushion didn’t really sound like a fun time.
My doctor highly recommended trying out accupuncture if I could find someone within a reasonable distance as it could help with detox. Despite my hesitation, I was actually able to find someone to work with me who comes to our town a few days each month.
The verdict is still out. I’m not sure exactly how or what this particular treatment modality is doing. When I have so many different things going on, it’s sometimes difficult for me to figure out which thing is actually working.
3. I also purchased a fairly inexpensive infrared sauna to incorporate into my detox protocol. Are you seeing a pattern here?
Detox is a big deal with Lyme. A lot of my protocol revolves around detox. It’s just as important to get rid of the biotoxins left behind from Lyme (and Lyme’s friends) as it is to kill off the little suckers.
4. Since it had been 8 weeks since my first LDI shot, I received my 2nd LDI shot and we also added an LDI shots for strep as well. I was very disappointed. Unlike the first shot where I felt great afterwards for a few days, I didn’t notice anything different.
5. Des Bio Bartonella series therapy (after finishing the Borrelia/Babesia series therapy) and Des Bio Lyme plus (10 drops daily) were both added to my regime. This is a homeopathic treatment I’m working through for Lyme (borrelia) and the other co-infections I tested positive for. (You can read more about it in my first post)
6. After talking to a number of different people and my doctor recommending it on multiple occasions, I finally bit the bullet and purchased a frequency generator (a.k.a. Rife machine). My doctor can’t officially prescribe or recommend using frequency generator because it’s not FDA approved, but “off the record” she said that her patients who are using these are getting better faster and aren’t relapsing.
Sounds good to me. But I don’t completely understand how they work, and I don’t like that. The information online is very limited because people can’t make health claims about the machines. Seems people are pretty tight-lipped about Rife machines due to fears of the FDA shutting them down.
I did have the opportunity to personally talk to a number of different people who are using them, and nobody has had anything other than positive to say about them. Some people are using these for their treatment exclusively.
I decided between the recommendations of my doctor and other individuals who are using them, it would be a good idea to add this to my protocol. I’m still reserving judgement on how this is working for me. Again, it’s a bit difficult to tell since I’m doing so much.
Treating Lyme Disease Holistically: After My August Appointment
1. Because it was clear I was now tolerating the coartem better, we changed the dosing schedule. Prior to this, I had been taking 4 pills in the AM and PM for 3 days in a row twice a month. I’m now taking 2 pills in the morning 2 in the evening every Tuesday, Thursday, Friday and Saturday.
2. On the days I’m not taking coartem (Monday, Wednesday, and Friday) I’m taking Artemis Plus. These are herbs that are apparently good for targeting parasites (babesia).
3. I received my third LDI shot in August for Lyme and my second for strep. Can I just say OWE! These suckers left some seriously nasty, painful red bumps (see image below)
This LDI shot seems to have helped energy some, but it still wasn’t the huge burst of energy I received from the first shot. Maybe it will be lucky #4? 🙂
4. With the Des Bio Bartonella series therapy completed, I now began the Des Bio Mycoplasma series therapy (yes, I really do have this many co-infections! boo.)
5. Low Dose Naltroxone (LDN) was added to my protocol. No, I’m not a drug addict (though it might seem like it from this list). Ha! Naltroxone (not low doses) is used to help individuals addicted to opiates (heroine and morphine) as it’s an opiate antagonist. Thus, those who take opiates while taking naltroxone won’t experience their high. When used for this purpose, they use anywhere from 50-300 mg.
I’m currently taking 1.5 mg of LDN. While patients have been using the low dose version of naltroxone in the US since the mid-80’s it’s still considered “off-label” to use it as such. It’s been used as part of treatment for a wide range of diseases and seems to help with many of them, but exactly how it works isn’t completely understood.
It’s been used to help auto-immune diseases, to stop the growth of cancer cells, treatment of MS, and more. Part of the hope with adding LDN to my particular protocol is that it will help even out my sleep. I tend to sleep a LOT and I don’t feel refreshed from my sleep. My fatigue has eased up some since starting, but I can’t tell if it’s from the use of LDN or from one of the other therapies.
6. Lithium? Yeah, lithium. I was a little confused when the doctor said she wanted to add lithium to my protocol. I even questioned my doctor, “umm…you mean the stuff used to treat bipolar disorder?”
Nope, not that at all. The type of lithium she recommended was lithium orotate, which is a mineral that helps protect your central nervous system.
And finally, I got to discontinue something! WooHoo! I’ve been taking chlostryamine for several months and I’ve been given the go-ahead to stop taking that.
Do you have Lyme? What treatment modalities do you find that are working/not working for you? Would love for you to share!
Treating Lyme disease holistically is hard work, but small strides have been made, and I remain positive about my health.
You can check out my other posts on lyme disease here.
Unfortunately our whole family has Lyme in varying degrees. We have a gb4000 rife machine but it really was too strong and we couldn’t handle the die off so we are waiting on using that more. We are all currently on the cowden protocol and homeopathic remedies…it is slow going but we are all making progress 🙂
I’m sorry to hear your whole family has lyme! That must be incredibly frustrating 🙁 I’ve not had too much trouble with my rife machine. My technician who scans me and helps me set up protocols builds into my protocols lots of detox frequencies, so I think that helps.
What homeopathic remedies are you using? Do you believe the Cowden herbs or the homeopathic remedies are making more of a difference?
3 of my family of 7 have Lyme remission 3 years now. Did 2 years natural and antibiotics. Rife, infared, essential oils, all organic non gmo food, full mineral and vitamins and herbs daily. Research GCMAF i think it can cure us instead of just remission. started a couple months ago. This may just be the cure.
I just googled GCMAF because I’d never heard of it before. Sounds interesting, but it doesn’t look like there is much info out there on it. If you have some more good info, I’d love to see the links for further research. Thanks!
I’ve been following your journey with a lot of interest.
I left a first comment before I read your two other articles, so sorry if it doesn’t seem logical ^^
How are you feeling now? Did you get any better? What about the Rife machine and The Homeopathic treatments?
Can’t wait to read you,
I felt like the homeopathic treatments really made a difference, but I don’t feel as if I’ve had an adequate chance to really evaluate how the rife machine has contributed to getting well.
I found out in November that I’m pregnant and my doctor had me stop all treatments immediately. I’ve actually been feeling a lot better since I’ve been pregnant (except for the hyperemesis, but that’s unrelated to my knowledge). The doctor I was seeing does not treat pregnant women at all. I have a lead on a doctor that I’m hoping will see me and help give me some direction for treatment during pregnancy. Unfortunately, there isn’t a lot of great research out there on how to treat during pregnancy other than through the use of antibiotics.
Oh that’s some great news, congratulations! I know that Doctor horowitz wrote about pregnancy and lyme disease in his book ” why can’t i get better” but i think it’s more for people who take antibiotics.
I just found out a very interesting video about alternative ways to treat lyme disease, if you havent seen it already : https://www.youtube.com/watch?v=jdTLXPFR3T8
As to me, I just received my blood test results and I am positive for:
-Epstein Barr Virus
I’m surprised to see I don’t have Babésia and Bartonnella. Since the blood tests are never 100% reliable, I think I would like to treat them as well.
I’m so confused right now. Just like you, I don’t know which path to go: antibiotics or Homeopathy….
I would recommend you try to find a good integrative doctor who is lyme literate. My integrative doctor gave me several options and also looked at my 23andme report to help me figure out what treatment plan was best for me personally. You’ve gotta find someone who knows how to customize a plan just for you…and you can’t really just attack everything all at once either. You nee somone to help you find the best place to start. 🙂 Best of luck! Let me know what you decide to do and how it’s working out for you.
Can I please have the name of the llmd you see? My daughter was recently diagnosed and we are struggling to find any doctors.
Feel free to send me an email if you’re still looking for a doctor. I recommend checking the doctor search on the ILADS website for doctors in your area.
Dr. Jan Dilley
Trisha I find your journey very interesting and appreciate your sharing the protocols you have found that work for you. I’m working with several lymes patients and use Des Bio as one of my protocols. We also incorporate EVOX into our protocol because every disease has an emotion connected to it. Since emotions are 95% of why we have disease it’s good to find what emotions are causing us stress, since stress weakens your immune system considerably. If you know of an EVOX practitioner I would recommend scheduling sessions with them. Another great device to help is the ERE and you can find additional information on that device at my website. (www.drjandilley.com) To find out more, you can click on product recommendations and then click on ERE. If I can help please let me know, otherwise I look forward to updates on how you are doing and what other protocols you find helpful in fighting the disease. The battle can be won!
Thanks so much for the recommendations. I’ll be sure to look into them. I need to write another updated post as much has happened since this one 🙂
Mizpah @ Raw Food Solution
I’ve found that Japanese Knotweed has made the biggest impact on my symptoms of brain fog and pain. It is the only remedy that has really produced a significant improvement.
But absolutely detox is the key and for me eating a predominantly raw food diet is absolutely essential. Nothing else works without the diet and it makes the herx symptoms less severe.
Sleep is a big deal and something I continue to work on. I couldn’t do without taking relaxing herbs and L-theanine. I went undiagnosed for 17 years so it can take some time to repair the brain damage from so many years of inflammation. You definitely have to be patient with this illness and learn to celebrate the small improvements.
I take Ubiquinol and Co Q10 for cellular energy. They help me a ton when I have a huge energy crash. They don’t completely take away all fatigue (I have Borrelia, Erlichia, Bartonella, Babesia, and Mychoplasma, and 2 types of nematodes), but they definitely help a lot. I take them daily anyway, then a couple of extra of each when I have a crash. They give energy to the cells, which help the body be able to push the toxins out. Zyto testing showed my cellular energy to be non existent. I still have to take other things to help drain the toxins from my body, but the cellular energy was a huge help.
Have you every used an ionic foot bath? Pulls out tons of toxins without using your cellular energy. The machine does the work, and your body doesn’t have to.
The Rife machine is based on using the matching frequency of the infection. That frequency kills what it comes in contact with. I don’t use Rife, but have used Ondamed, which is the same type of thing, and I currently use frequency combined with cold laser. It definitely kills it.
Glutathione is another thing that helps my energy some, along with sickness from die off. Many Lyme patients are low on it from what I understand.
I’m going to check into some of the things you have listed to see if something is here I need to add. I am treating mine holistically, as well, except that I finally had to give in and get a prescription parasite treatment…..which is still not killing it very quickly.
Thanks for sharing some of what you’re doing on your protocol. I actually just added ubiquinol coq10 to my regiment and I can definitely feel an energy difference. I love it! I still have a difficult time getting up in the morning, but I really feel that the coq10 helps me once I get it in my system and gives me some good steady energy through the day.
I’ve tried the ionic foot bath and done some research on it. I’m not overly impressed with them myself, and really haven’t been convinced they’re of much value.
Hello! Im 22. Ive been on abx but i cant tolerete them anymore. Also with suplements, LDN…. im going to try ldi, it has work for you??
It worked moderately for me, but I ended up only doing a few treatments before discontinuing them.
Twelve years chronic, three months into treatment. Lyme/Babs/Borelia. Still learning and taking it all in! I chose the mix of Antibiotics and natural supplements, main one being Byron White. I feel I have a good LLMD. I started feeling better within 6 wks of treatment. I am at ten now, and have gone backward.
How are you now and what do you attribute your success/feeling better to? My treatment is much more simple. Rotating antibiotics, Byron White, Oral Glutathione and vitamins/minerals. I can add what ever I would like, but so overwhelmed with the choices. Can you shoot me some knowledge?
Hope you’ve had success!
My treatment has gone very well and feel I’m nearly 100% better. I feel my lyme is in remission, but will always have to be careful to take care of my health. Because I tried so many things at one time and hit the lyme as hard as I could, I really don’t know for sure if there was ONE thing that I can attribute my success to. I do think hitting the babesia hard with coartem and then transitioning to Artemis plus really helped. From what I’ve read, I think the babesia was probably giving me some of the worst of the symptoms.
I’ve tried to document my protocols in blog posts. You can see them all here (reverse chronological order) and see my most recent update here.
Hope you are having success with your lyme treatment!
I am curious….. the article says holistically treated, but outside of the frequency machine, red light therapy and acupuncture treatments….. it seems as though you are on a medical regimen. Am I correct in assuming this?
I’ve been looking into Des Bio as a Lyme treatment and came across your blog. Thank you for doing this and allowing open communication.
How are you on your journey? How did your pregnancy go? It seemed like every pregnancy hit me harder now that I know what I have, to a certain extent
I did find a lyme literate doctor, and she is integrated but primarily treats with antibiotics and I don’t want antibiotics anymore .. They always make me feel better but once going off make me feel worse.
It was 2009 that I was diagnosed with lyme, 2 weeks antibiotics is how it was treated and I was “fine.” UNTIL mold . I had no idea for the last 4 years why my health completely crashed..to the point of adrenals shutting down, organs enlarging, thyroid issues, heart issues, you name it. MOLD.
Have you tested your house? This is critical with Lyme. Mold affects 25% of the population, with a genetic altercation that our bodies can’t detox how it should and needs to. I have that, yippee right? But I am a physical therapist and like the labs for “validation” if that makes any sense.
When we finally moved out and lost everything, as though lyme isn’t hard enough, I started to improve but I started Plexus and this has been life changing, for energy, brain fog, better sleep, waking refreshed..until we found out our brand new house has mold. Ugh. One more battle. That’s why I started researching Des Bio. My body needs help with all of the toxins being thrown at it.
Hope to hear from you and how you are doing 🙂
What essential oils are you using and how?
I’m currently on box 2 of Bart, Bor, and Bab. I use the bathroom a lot. I’m very tired and I have a lot of anxiety.