So here is my story (keeping it in point form to condense it all sorry for the stream of consciousness style):
- Went camping northeastern Canada 13 months ago, probably got bit by over 1000 separate insects, was completely insane
- Weird rash 2 weeks after, went to ER mentioned Lyme disease, didn't believe it and diagnosed as lymphangitis and was given two weeks of cephalexin, the ER doctor sort of freaked out and said to trace it with a sharpie and if it progressed to come back immediately to the ER
- Got progressively worse over the next 5 months although the rash went away in about
a month, thought I had allergies, sore throat EVERY day tested for AIDS over 5 times every doctor thought I had an std or staph infection, couldn't sleep, constipation, sharp stabbing headaches behind and above eye, finger numbness, dizziness, nausea, visual disturbances, eventually couldn't drive anymore then couldn't walk or remember where I was anymore, towards the end I wasn't eating and would stay awake for 3 or 4 days without sleep only drinking water, incredibly intense painful acne which I had never had before in my life, I though I was dying. All throughout I also had increasingly debilitating lower back pain
- Saw about
12 doctors including a world class research level infectious disease specialist who basically laughed at me and told me i most likely spilled a Margherita on my chest which is what caused the reaction and he then proceeded to refer me to a psychiatrist. Every doctor I saw basically laughed at me, told me chronic fatigue, people like you are wasting medical ressources, get some sleep, burnout you need to rest, etc. My family physician who I love even lost faith in me and basically told me to find someone else, from beginning to end I probably did over 50 individual blood tests including obscure tropical disease stuff. Every single tests was negative and all CBC type tests were all within normal range.
- Keep in mind, prior to this I had not seen a doctor in over 5 years. Not once (other than the occasional ER visit for stuff like a bike fall/stitches)
- Couldn't live on my own anymore, pulled out of school (3.90 GPA doing a double major) moved back to my parents house and basically spent every ounce of energy I had trying to find someone who could help me. here is where my life fell apart, left my lover that I loved so deeply for nearly 5 years, everyone around me started ridiculing me and insulting me, my girlfriends father was a doctor and told me to grow up and that it was psychosomatic, etc, I had suicidal thoughts every waking minute and was in so much pain, started going bald as well, had hair to my shoulders and shaved it off completely, smoked marijuana once or twice and unexpectedly had what I now know were extremely intense herx reactions, resting heart rate of 190 bpm vomiting etc. thought I was going to die and I have probably consumed marijuana over 3000 times in my life never once has anything like that happened, this really struck me because I knew something was terribly wrong at this point
- Finally found a LLND about
2 hours drive away and went through detox treatment followed by all kinds of herbal stuff I wont bore you with the details
- Being a ND my practitioner cant prescribe so I basically self medicate and obtain meds on the grey market, I did igenex and Bb and babesia duncani were positive.
- After I started getting back to about
50 or 60% better following her detox/herbal protocol we started only doxycycline, 200mg/day for about
- Did an MRI showed 2 herniated discs L5/S1 and L4/L5 and bulging cervical disks as well as degenerative disk disease, pain is 24hours a day first thing I notice when I wake up, 5 to 7 / 10 pain every day.
- Tried physiotherapy for a few months and didn't really make progress
- Then minocycline for about
- Then Cryptolepsis up to about
150 drops/day, was very rough at first made HUGE improvements with this back to about
70% most days. Started working out again, able to do almost everything, but still very important that I sleep a lot otherwise I would feel terrible
- Now Clindamycin and quinine although I am not too sure on the dosage. Initially tried following the CDC guidelines for babesiosis and thought I was going to die the side effects were so bad (Clindamycin 600mg 3x per day and quinine 650mg 3x per day) I went completely deaf and my resting heart rate was around 175 bpm, immediately discontinued after a day.
- Currently doing 3x 300mg clindamycin/day, 200mg quinine/day, 200mg doxycyline/day, cryptolepsis 150 drops/day, oregano oil, ashwagandha, activated charcoal, nattokinase, ADP emulsified oregano oil
Here are my current symptoms:
- Currently I still have a very hard time sleeping, I need melatonin otherwise it won't happen
- Still get headaches every now and then. Sharp localized pain above my eye usually left side
- Very dizzy when walking
- Back pain is incessant, 24 hours a day, probably my biggest issue right now
- Eye pain sometimes
- Often feel fatigued or sleepy during the day (used to sleep 5 hours and could work for 18 hours non stop not a problem)
- Throat feels weird every single day without exception, like I have a lingering cold or throat irritation sometimes going up to my sinuses and ears. Tonsils have been inflamed ever since I got back from the camping nearly 14 months ago
- Whenever I up the dose on something I start coughing up this extremely thick mucous substance from my nose and lungs.
- Doing bloods every month, everything is perfect including liver enzymes
- Planning on starting school again in about
a month, feeling a little uneasy about
Overall I have to say I feel infinitely better from about
8 months ago, but I am nowhere near 100%. I understand I may never get back to 100%, but I sure as hell will try everything I can.
Anyone have advice on where to go from here?
How long should I continue Clindamycin/Quinine?
Clindamycin/Quinine dosage recommendations?
Better to do a huge 10 day dose as prescribed by CDC or long term low dose?
I am honestly so sorry for everyone suffering from this stuff and I wish I could help you all. To anyone out there in the "life is falling apart phase" don"t give up, you truly will get better, your #1 priority must be finding an LLND/LLMD asap no matter what the cost.Any help or advice is greatly appreciated. <3
Post Edited (deepcan) : 8/7/2018 10:16:07 PM (GMT-6)