It's been a long time since I've posted here. I'm posting now as I am looking for insight into a couple of questions. I'll try to keep this as brief as possible, but I am happy to elaborate on any part of my medical history. I will state my questions upfront so that you can keep them in mind while reading:
1. I don't react to medication. I don't have any of the "telltale" Babesia symptoms, and instead I have less-specific symptoms like crushing fatigue, weakness, and headaches. I don't herx. I don't have new or worsening of symptoms when treating with antimalarials.
This has caused me to doubt my diagnosis, but I have labs showing active infection. Does anyone else have a similar experience to this?
2. Has anyone else dealt with treatment-resistant Babesia Duncani and *cleared it completely*? If so, what did your treatment look like over time? I am wondering if I need different meds, higher dosages of the same meds, longer periods on the same meds, different combos of meds...
My background: 28 y/o male, diagnosed with Lyme & Babesia since 2010. Sick since 2009.
My symptoms: Severe fatigue, constant headache. (In the past I've had unexplained GI pain, unexplained UTI-like symptoms.)
Starting in 2011 I treated with Malarone (6 tabs per day), along with various other antibiotics. While I didn't have any positive Babesia labs at the time, my positive response to Malarone seemed to indicate that it was clearly Babesia that was at least partially causing my symptoms. I continued to treat with Malarone and was even on a maintenance dose for years.
I was hovering at around ~90% improvement between 2012-2018, but in 2018 I relapsed and have been much more sick again.
After this relapse I did a full tick panel at iGenex and the Babesia FISH was positive, along with a positive Babesia Duncani IFA titer. I was excited to have clear evidence of an active infection, but treatment with Malarone was not helping.
I then went down the herbal route, went to Mexico for treatment at a clinic, etc. etc. My symptoms fluctuated but never resolved.
This January I started self-treatment with Disulfiram. I slowly increased my dose for next 6 months, reaching a target dose of 375mg.
I did not have many of the side-effects that people warn about. No neuropathy, not sensitive to many foods or topical alcohols, no body odor. During this period, my symptoms waxed and waned. Sometimes I felt as though the DSF was definitely helping, but I would also go through periods where my symptoms were back at "square one".
A couple months ago I started to develop weakness in my legs that I thought might be a different presentation of "neuropathy", and stopped the DSF. At that point, the fatigue and headaches were bad enough that I went to stay at my dad's house and was essentially housebound for two weeks.
After an appointment with my LLMD, I started Mepron/Biaxin/Primaquine. I also did another tick panel, again with the Babesia FISH positive, Babesia Duncani IFA even higher than before (1:160). My Lyme IgM is also CDC positive, showing an active infection.
I have now been on the Mepron/Biaxin/Primaquine combo for 3 weeks. I saw notable improvement after just two days of Mepron: I went from lying in bed all day to being up, walking around the house, cooking for myself. However, I have not seen much improvement since then.
I have also started two herbs: CSA tincture (ok, this is three herbs in one), and Liposomal Artemesinin. Again, many people talk about severe reactions to small dosages of Artemesinin. I did not have any reaction when taking it for three days.
I am seeing my LLMD again in a week. I suspect that we will potentially increase my Mepron dosage, maybe rotate some of the other meds. Trying to remain hopeful, but after dealing with this infection for over a decade, I am a bit exasperated and ready to throw everything at it.
If you've made it this far, thank you for reading. To reiterate, I am wondering:
- Why do I not react to treatment the way that most people seem to? Why do I not herx the same as others? Does this mean I should consider higher dosages? (I will consult with LLMD before making changes.)
In the past I would have looked for other causes of symptoms (viruses, mold, etc.), but I now have extremely clear evidence of active Babesia infection.
- To other folks who have also had similar difficulties treating Babesia Duncani but were finally able to recover, what was your experience?
I am also happy to receive any general feedback or answer questions, however the questions above are the ones that are front of mind for me.
Thanks again, Adam
(Breaking up the post for easier reading for many here - Robin)
[ 09-19-2020, 04:55 AM: Message edited by: Robin123 ]
Posted by Lymetoo (Member # 743) on :
I know some patients do not have herxes. Maybe you have a strong liver that is able to clear things.
I took many rounds of clindamycin and quinine over a period of two years (I think), but seemed to finally clear my babesia with artemisinin and zithromax.
In a month or two I was done. I didn't have the ducani, I don't think.
Posted by daisys (Member # 11802) on :
After initial treatment, I didn't have obvious symptoms or distinct herxes, besides low energy and brain fog.
My energy level has been not more than 3 on a 1-10 scale. After being on anitbiotics for 11 years (switched every 6 months) I felt I had plateaued, probably with resistant bugs.
My husband and I researched options, and decided to switch to a rife machine. It's been over a year, and I have a routine that does produce herxes, and I do have a lot more energy--some days 5-6.
I have Lyme disease, babesia, bartonella, and a handful of other infections. I still have to rife for those main infections on a regular basis, or they build back up.
There is a rife forum with a lot of information, actually more than I can process even with my mind more clear than for many years.
Posted by Bartenderbonnie (Member # 49177) on :
I never had any symptoms of Babs UNTIL I was I done treating my Lyme and Bartonella. Out of the blue, full-blown Babs. Horrible. No sleep, constant sweets, crying jags, headaches, bone crushing fatigue and pain. It is a very tendinous opportunistic infection.
I treated with malarone, Mepron, plaquenil, azith, dr Zhang's artemisinin and allicin (garlic). I did not herx on any of these meds. I did start feeling my symptoms disappear.quite quickly! Within 1 month of finishing treatment (6 months) it comes roaring back. Nothing subtle about this bug.
According to Dr B's "Avanced Topics in Lyme Disease", he states that some patients will be unable to clear infections and will require open-ended treatment. He also states to check for Immune disfunction (IgG subclasses 1 -4), pituitary disfunction, and other diagnosis's.
Posted by tickbite666 (Member # 43399) on :
Your treatment sounds similar to mine. For years I though I was treating a Mepron resistant strain of babs. Didn't breakthrough until getting real aggressive against Bart.
I'm just coming off 9 months of Dislulfiram. Last June I went from 375 to 500 and it was way too much so backed down to 250. Still got some neuropathy that I hope will pass after I wean off.
You sound like you and your LLMD are trying all the right things. Hope you get back to 85% or so again, then try too find the right level of abx and herbs for maintenance.