Hi guys,
I have been frequenting this site for a few months, and finally decided to join. It seems like a helpful/supportive community, and I wanted to share my story and ask some specific questions I have had a hard time finding answers to.
Earlier this year I was backpacking through Asia, and on May 4th, while in Laos, I had a strange falling/fainting sensation. This triggered panic attack like symptoms, such as hyperventilating, chills, and sweats. Tough to say whether those were symptoms of Lyme or if I was just freaked out being in the middle of nowhere while experiencing this strange head sensation. I awoke the next morning feeling fine, but over the course of the next few days I started feeling the same sensations, along with brain fog and severely exaggerated hangovers from alcohol.
I came back to the US in June with the following symptom profile:
- Fatigue
- Brain fog
- High incidence of PVCs (25,000+ per day)
- Alcohol intolerance in the form of exaggerated hangovers
- Frequent lightheadedness
- Burning sensation on one specific part of my back that would occur every few days or so
- Waking up each morning with same part of my leg numb/asleep
- Malaise - randomly throughout the day I would start feeling a general sense of being unwell
- Slight joint pain in hands and knees
- Depersonalization/derealization
Upon returning, I was checked and cleared for all of the common diseases I could have picked up in Asia. Given that I never had GI issues or a fever, I didn't expect that I had an exotic bug. I tested negative on several ELISA tests for Lyme, but was positive for EBV. The doctor told me I only had EBV, although the symptoms didn't fit. I was fortunate to find an integrative MD soon afterwards, and tested IGG positive through IGENEX, with my IGM being negative but with indeterminate results for bands 31 and 34. I was IGG mid-titer for B. microti, meaning I may or may not have an active infection. I also tested positive for candida overgrowth via stool test. I was still somewhat skeptical of the Lyme, but found a biologist who did a live blood screening and showed my spirochetes in addition to a low load of babesia like organisms. The biologist also showed what she claimed to be biofilm communities of Lyme and Candida, suggesting I have had the infections for quite some time (I grew up on East Coast of US). Lastly, I tested multi-susceptible for HLA haplotype.
Here is what I have tried so far:
Parasites:
- Started my treatment with a 3-week course of Albenza, Ivermectin, and Biltricide
Lyme:
- LA Bicillin shots - 1.2 MU 3x per week started mid-September
- Full doses of Cowden and Buhner herbs started in early October
- Boulouke - 2x a day
- LDN
Babesia
- Mepron + zithromax (3 week per month) started mid-September
- Tindamax (one week per month) started mid-September
- CSA started in early September, but unbearable herxes
Candida:
- OOO
- Diflucan
Detox:
- 2 hours infared sauna everyday
- 2 hours exercise everyday
- At least 150 ounces of water per day (the majority of which has lemon in it
- Epson salt baths 3x per week (don't do much for me)
Diet:
- No carbs, sugar, alcohol, or dairy in 2 months
EBV
- Valtrex for past two months
Other:
- Probiomax 350 - 150 billion units probiotic per day
- Argentyn 23
- Immunotix
- Detox supplements such as NAC
- Support supplements such as alpha lipoic acid and magnesium
Throughout this time, I have definitely felt sick, but after reading about
others' experiences, I would say I am quite functional. I can do most things I want to do, other than stay up late and eat/drink what I want. My symptoms, other than my heart, are all neurological. At this point, I believe my Lyme herxes are over, which is strangely quick. I never reacted to Bicillin or the Cowden herbs.
Here are the times I have herxed (my herxes generally consist of pressure headaches, derealization, and brain fog)
- First time taking Tindamax and Minocycline (was only on mino for two weeks before parasite protocol) - felt awful for about
a week
- Accidentally took 60 drops of Stevia and had a terrible herx for a night
- Buhner Lyme herbs I felt a little herxy for a few days
- CSA - after a few days of it building up in my body, I had an awful herx that lasted for about
a week
- Flagyl - I was put on this a few weeks ago for an unrelated issue, but had the exact same reaction that I had to CSA
That's where I am at now. I think I am getting somewhat better, but that might be due to the fact that I have been feeling much more optimistic since I confirmed I have Lyme. This might sound strange, but I was terrified I had some bizarre exotic illness from Asia. I probably feel about
the same as I did when I started treatment, which was manageable.
BTW - I have had cardiac MRIs, PET scans, and electrocardiograms done, and there is no structural damage to my heart. While I do have an alarming number of PVCs, my cardiologists/electrophysicologists are not too concerned in the short term. If they do not improve with Lyme treatment in 6-12 months, I will consider ablation.
Questions
1) I am concerned that the Mepron/Zithromax is not working. Given that I herx terribly on CSA and Flagyl, both of which have coverage for babesia, I would expect to herx on Mepron as well. Can the Mepron be working without causing a herx?
2) I am curious about
my Babesia diagnosis. I was on malarone when I initially got sick in Asia, and I have had almost zero babesia symptoms. I finally had my first drenching night sweat last week after about
a month on Mepron, but that's about
it. I suppose derealization/depersonalization can be attributed to it as well. If I had had dormant Babesia that was activated in Asia, would the Malarone not be enough to stop it from activating?
3) Has anyone else had this high of an incidence of PVCs?
4) Say I have had Lyme for a long time, given my biofilm levels, although I felt perfectly healthy before this whole thing started. I know Lyme is very difficult to treat if you have been symptomatic for say 10 years, but if it was dormant this whole time, is it as hard to treat? Basically, is Lyme as entrenched in my body as it would be if I was actively sick for the past 10 years?
5) I find it odd that I do not herx anymore, and never really did, from the medicines specifically targeting Lyme. Could this mean that something else is the main cause of my symptoms? Possibly Babesia or Candida?
6) What else can I be doing that I am not already doing? I feel that I am hitting this from all angles, but would love input.
7) I have seen two LLMDs, both of which doubt very much I have bart. Based on symptoms, does bart seem likely at all?
8) I have seen a lot of different information on HLA haplotypes. It seems to only impact detoxification, not actual killing of Lyme. Any thoughts on if this will make treatment more difficult?
9) Is it common to have almost zero muscle/joint pain, but this degree of neuro symptoms? Does this indicate anything.
10) I have an hour or two on my good days where I feel like 95%. Given this and my lack of severe symptoms, are these positive indicators for my prognosis? Or does this not have an impact on how long it will take to get better?
11) I have not had flu-like symptoms or any stomach issues throughout this process. I see that most people here have severe GI problems. What does this indicate?
Thanks for reading such a long post! I would appreciate any feedback or answers that can be provided!
Post Edited (hammer8) : 10/26/2017 8:58:08 AM (GMT-6)