A lot has happened since my last progress report. There have been a lot of ups and downs; moments of thinking I had turned a corner before falling back into days in bed. I think this is perhaps the most frustrating part of the battle against Lyme disease: the nonlinear progress and the unknown timeline.
I’ve still been unable to go into work, as my fatigue and nausea have been too overpowering to handle much social interaction.
The Babesia treatment prescribed by my doctor was cryptoleptis, artemisin, and Plaquinil. In my last progress report I mentioned that I had a strong reaction to the treatment and so was going back to minimal doses of each before trying to increase. As it turned out, my body wasn’t particularly happy with that approach either.
I first tried taking one pill of artemisinin a day, but after a week was in too much pain to continue. I then tried one pill of Plaquinil a day, and yet again, after a week was in too much discomfort. I finally decided to start on the cryptoleptis at 1/4 tsp per day. I figured that as a liquid I would be able to titrate the dose in whatever small increments I needed. However, after a month I was still only able to tolerate 1/4 tsp twice a day, a far cry from the full teaspoon three times a day that I was supposed to be taking.
I suspected that most of what I was feeling was a herx — my body simply reacting to the endotoxins being released as the bugs died off. I needed to find a way to deal with these reactions so I could tolerate treatment. A fellow Lyme disease warrior had emailed me and mentioned using Pekana detoxification drops to successfully decrease the severity of herxes.
After doing a little research, I found that many Lyme disease warriors mentioned these drops as a key part of their regimen. I emailed my doctor to ask if she had heard of these drops and, if so, would she recommend them? She emailed back to say yes, she was very familiar with the drops and would be happy to order them for me.
She started me on 1/4 tsp of each, three times a day. I really should have known better than to start with a dose that high on products that are measured in drops, but I was desperate to start feeling better. After a few days, though, I felt worse. I tried cutting down to one drop of each three times a day, but my body didn’t seem to like that either. My hopes were dashed as so many had praised this treatment and it seemed that I couldn’t tolerate it. I stopped taking the drops and continued looking for help.
Realizing that I wouldn’t be able to get better until I could increase my dose of cryptoleptis, and after weeks of feeling just horrible, I finally decided to go back to the chiropractor I had seen before. While my back was fine, she had a knack for identifying organs that were in distress, and so I asked her to quickly check my organs before I left. She immediately picked up on my liver, which she said had a lot of heat coming from it.
Having been to many acupuncturists and other practitioners of traditional Chinese medicine (TCM) in my life, I’ve always been diagnosed with some sort of liver imbalance. That’s apparently quite common for people with my constitution, and since the liver is very important in TCM, I figured it was time to get back to see an acupuncturist.
I had been seeing an acupuncturist late last year after I had a bout of an still-unknown infection in my abdomen. I had gone to the doctor after being in such pain that I could barely walk, and they feared my appendix was about to rupture and rushed me to get a CT scan. The CT showed that I had fluid in my abdominal cavity — a clear sign of infection. It also showed lesions on my liver, which they suspect to be granulomas. I would later find out that granulomas on the liver are consistent with bartonella infection.
With my body in such a mess at that point, I went to an acupuncturist to boost my immunity. It was clear that my body wasn’t able to fight off whatever bizarre infection it had picked up and I was concerned. However, I stopped going around Christmas once I felt a bit better.
I decided to go back to the acupuncturist with all of the new information about my diagnosis and treatment. I explained that my chiropractor had pointed to my liver as needing help and asked her to check it out. She took my pulses and looked at my tongue before revealing her findings: she agreed that my liver was stressed and also diagnosed spleen qi deficiency. In TCM, the “spleen” is actually the combination of what Western medicine calls the pancreas and spleen. The TCM spleen is responsible for converting food into energy, and so it stands to follow that weak spleen qi means food isn’t getting converted into energy. She warned me that this type of imbalance can take a while to resolve, so it’s important to be patient. She also said that my body seemed to be stuck in fight-or-flight, so she would attempt to calm everything down.
I felt better immediately after the first treatment — it was like my entire body just released a lot of physical stress. The pain and nausea were better, and I continue to go to the acupuncturist once a week as it seems to be the only thing that can keep my herxes somewhat manageable.
As a result of the acupuncture treatment, I was able to slowly increase my cryptoleptis dose to 1/2 tsp three times a day. This week I’m increasing two 1/2 tsp twice a day and 3/4 tsp one a day.
I also started taking Spleen Activator Concentrate to help with my spleen qi deficiency. My last visit to the acupuncturist yielded the first improvement in my spleen, as she said my tongue showed improvement (the tongue being an indicator of blood flow).
It’s worth noting that during this time, all of my liver and kidney tests from my doctor came back normal. So while there was nothing Western medicine could find that was wrong with my detoxification system, TCM disagreed.
My last blood test included testosterone and was still very low. This after I had been taking 1 pump of Androgel every day for several months. The doctor was concerned that this could be a contributing factor to my ever-present fatigue and advised that I increase the dosage to 4 pumps a day by increasing one pump per day per week for three weeks. If you’ve been reading this far, you can probably guess what happened next.
After about a week I had a severe reaction to two pumps per day. I had pain in every part of my body and intense nausea. Testosterone isn’t supposed to cause herxing, and my doctor had never heard of such a reaction to it. Naturally, I immediately stopped taking the Androgel to let my body calm down, and eventually stopped my whole treatment as I still felt horrible after another week.
It took about three weeks before whatever was going in my body calmed down, at which point I decided it wasn’t worth using the Androgel. My testosterone was still low even after using it, so clearly it wasn’t doing much, and I had been on the only dose my body could handle.
My fatigue is still present and varies from day-to-day. Even on days where I have a bit more energy, it’s mostly gone by 4pm. I’ve always immediately taken a shower when I woke up, but for the most part I only have enough energy to take a shower in the morning about 50% of the time.
My chiropractor back in Massachusetts has been keeping tabs on my progress, and when I told her my latest, she said she believed my biggest problem was that I’m just not detoxifying properly. She encouraged me to do detoxification foot baths.
On the recommendation of another Lyme disease warrior, I had tried doing bentonite clay foot baths, but found that they made me so tired that I could barely function for 2–3 days afterwards. Clearly the bentonite clay approach was too severe for my body to handle.
The detoxification foot baths she wanted me to do were electronic, using positive and negative current in water. I used to do these at her office when I lived in Massachusetts and I do remember feeling better afterward. I was unable to find someone close by who offered the foot baths, so I opted to by the IonCleanse Solo to use at home. It’s quite expensive at around $2,000, but I trust the opinion of this chiropractor immensely as she’s helped my family and me through several rough health situations.
As of yesterday I had done my sixth foot bath and have felt a difference. My body feels lighter and I’ve had a bit more energy than usual. I’ve had to take additional minerals, since these are also removed during the process. So far I’ve been able to tolerate these treatments much better than the bentonite clay foot baths and I’m hopeful that over time I’ll see more of an improvement.
This period has seen a marked worsening of my voice. I went from being able to have several phone meetings a week to barely being able to speak. At first it felt like a big lump in my throat that would literally stop my voice. Every conversation was basically me coughing out each word, which left me with an even worse sore throat.
Because of that, I had to severely cut down on the number of phone conversations I had. That was very frustrating as phone and email were my primary means of communication with work. I was able to augment that by picking up IRC chats with colleagues and delegating some meeting responsibilities to others, but this has been very frustrating as it makes me feel even more isolated.
I eventually came across a post about Gollum juice, a recipe used by the voice actor for the character Gollum in the Lords of the Rings movies. The raspy, scratchy voice really did a number on the actor’s throat, and so he regularly drank large concoctions of ginger, lemon, and honey to soothe it. I started making my own combination with these ingredients and started to see immediate improvement.
My voice still feels very weak compared to when I was in the office every day. It still tends to give out fairly quickly and I sometimes have trouble starting to speak, so I try to keep long conversations to a minimum. At the very least, my throat doesn’t hurt as much and my coughing is greatly reduced.
My sleep has been all over the place. I went through several weeks of actually sleeping fairly well before falling back into a pattern of insomnia. Acupuncture seemed to get me back on track but I still tend to have a couple of really bad nights each week that pretty much guarantee I’m useless the next day.
I upped my dose of NutraSleep and added 2000 mg of NAC right before bed. The NAC seemed to make a difference because when I ran out, my sleep started to worsen within a couple of days. Once I received my next shipment, my sleep improved within a couple of days. NAC is important fuel for the body to make glutathione, so I rationalized that I was giving my body the best chance to detoxify during the night by adding NAC.
My progress from the last update hasn’t been as large as I had hoped. After gaining some weight I’ve struggled to gain any more. My blood pressure has remained at a good level, but my energy is still very low. The major symptoms I’ve been fighting through at this point are body pain, headaches, and nausea, all of which I believe are the result of either herxing or my body otherwise struggling to detoxify.
I continue to search for ways to release the toxin burden from my body as I truly feel like the Lyme/Bartonella/Babesia symptoms are minor right now as compared to the detox symptoms.