Posted 12/9/2017 6:40 PM (GMT -6)
I've been reading the forums for a while and have gotten some excellent advice and finally decided to register as I am in need of the hive mind's assistance.
Here is a timeline of my Lyme Story and symptoms for background info, which you can read or you can just scroll to the bottom to main question/purpose of this post.
9/26/17: While at a client's house, I felt completely normal, and then in the span of 5 seconds I felt like I was about to faint, start to stutter and shake, had severe anxiety, and end up with a panic attack (I did not recognize it as such at the time). I tried to drive myself home but felt like I was going to faint at the wheel, pulled over into a parking lot, and was taken to the hospital by my wife. They ran bloodwork (all normal, I actually requested a lyme test at the time but they said I'd be better off going to PCP for that) and had CT scans of the brain to rule out the usual suspects like a stroke/TIA, brain tumors etc. I was kept over night and discharged home and told to see a neurologist. For several weeks prior I had dull headaches on and off that weren't relieved by ibuprofen like I would expect, but I didn't think much of it. I also had strong neck muscular pain and spasm for about 2-3 months prior to this as well, but I had written it off as related to my back, as I have a history of severe scoliosis of my thoracic spine with 2 fusions as a kid. I just figured it was all related to that. I have no recollection of ever being bitten by a tick or having EM.
9/27/17 - 10/3/17: I see neurologist and have every test under the sun ordered, MRI with contrast of head and neck, EEG, Echocardiogram, EKG, etc. All normal. My lyme symptoms (still undiagnosed at the time) then became constant and were mostly all psych, severe anxiety (I have a hx of anxiety and have been taking Klonpin for years and had just weaned down to only taking it PRN 1 month prior to this), mood swings, depression, headaches, and fatigue. My neurologist orders bloodwork and at my request they add the basic Lyme test. Neurologist prescribes an SSRI (Zoloft) which I take for 1 day and quit as it made my depression symptoms worse, and I felt it was the wrong course of action as 1-2 weeks prior I was not a depressed person. I see a psychiatrist who ups my dose of Klonapin from .5mg 1/2 pill twice a day to 3 times per day which helps. The anxiety is so bad that I had become agoraphobic. I was able to see a few clients a day (I am a home care physical therapist) but I resorted to having my wife drive me to clients after she got out of work at my lowest point). At this point, I am afraid I am becoming a psych patient. I develop terrible insomnia, brain fog, and spend most of my time at night researching what could be wrong with me
10/4/17: I log on to check the results of my blood work, all normal except an "equivocal" result for Lyme IgM, and that the sample has been sent for Western Blot for confirmation. I realize at this time that it must be Lyme, and start myself on 100mg of doxy 2x/day (my brother has a running prescription for acne). I have some familiarity with Lyme as my best friend has been battling Lyme/Babesia for about a year and immediately call his LLMD and get an appointment for 10/13. Several days later the Western Blot comes back positive for Lyme IgM (23 and 41), negative for IgG (4 positive bands 39, 41, 45, 66). My neurologist calls and says it looks like I have Lyme and asks if I have any symptoms and that they aren't sure if they want to do anything else because I don't have the typical joint pain. I realize that they have no clue what to do with lyme, politely ask for the copy of the Western Blot to take to the LLMD, and have never talked to them again. I thank God that I advocated for myself and had some experience via my friend and my occupation, otherwise I may have ended up in a psych ward.
10/5/17-10/13/17: I am on the doxy and have some pretty rough herxes even at that dose (though I have some familiarity with Lyme, I was not familiar with herxing), people tell me I look very sickly (appetite had been poor for the previous few weeks) and I almost pass out from anxiety/herxing through my sister's wedding on Columbus day, but by the day I see the LLMD on the 13th I can notice that I am slightly better.
10/13/17: I see LLMD, he explains a lot to me, and prescribes me with the cocktail: Doxy 200mg 2x/day, Azithromyicin 500mg 1x/day, and Tindamax 500mg 2x/day 3 days on/4 off, plus the supplements: Magnesium, L-theanine, B12, and a probiotic (Culturelle 10billion from CVS). He tells me to come back in 8 weeks.
10/14/17-12/3/17: I start the cocktail, have a rough time with the doxy with my gut, chronic diarrhea, but am determined to fight through it. The 2nd weekend on Tindamax I have the worst herx of my life with extreme anxiety that left me in bed all weekend. After that, my symptoms continue to improve, and other than the recurring diarrhea, I start to feel like myself again. At about the 5-6 week mark I can identify no symptoms and begin to think I've beaten this thing. I had my PCP write me a script for the Western Blot on 11/11 and I went from 6 positive bands to only 3 (IgM 23, IgG 41, IgG 66). Around the last 2 weeks I begin to wonder if I can stop the antibiotics as my only symptoms that I can identify are antibiotic related (diarrhea, oral thrush which my PCP gave me oral Nystatin to treat around week 5) other than the return of some brief dull headaches. I keep on the antibiotics until this past sunday 12/3/17, as I am due to see the LLMD on 12/8. At this point, I had been on doxy for 8 full weeks, 8 weekends of Tindamax, and 7 weeks of Azithromyicin.
12/4/17-12/7/17: I am off all antibiotics but still taking probiotic, L theanine, magnesisum, and finishing the Nystatin. That first Monday day is fine, I notice a few dull headaches and nothing else. Tuesday I can feel an increase in anxiety and still have some headaches with an uptick in fatigue. Wednesday is the same and then I begin to feel a slight return of the depression. Thursday morning 12/7 I wake up feeling everything as if I had started back at the beginning and become very discouraged and I resume taking what's left of my cocktail. The only improvement I had noticed was that my bowel movements had become more normal.
12/8/17: I am already feeling better after resuming the cocktail, I see LLMD, and tell him this story, and as I stress that I felt completely normal other than the gut symptoms until I stopped, he explains to me that it can take a few more months to clear all the Lyme up, but that I am on the right track based on the improvements on the blot and that I had felt symptom free so quickly. He resumes my cocktail but switches the Doxy out for Amoxycillin 850mg 2x/day and reduces the Azithromyicin to 4 days on/3 days off at 500mg 1x/day and wants me tested for C-diff. He tells me to exercise more (prior to onset of symptoms I worked out regularly) to help sweat out toxins and improve circulation. He takes blood work to another Blot test, plus liver function and other items which I am still awaiting results from. He estimates that I am looking at 4-6 months to be cured based on my progress thus far, and will send my bloodwork to Igenx once the last IgM 23 is non-reactive and my symptoms are gone for a few weeks.
Thank you all if you made it through reading that story, and now for the reason I registered on the forums:
The biggest question I have, is if it was a mistake to switch out the Doxy for the Amox since I responded so well the first time around (the reduction of the Azithromyicin I am less concerned about). I did take it for a full 8 weeks, but then again the symptoms returned almost immediately upon stopping, and I was concerned about my gut and that perhaps I was developing a resistance to it (is that possible after 8 weeks?). I have noticed an uptick in brain fog, some irritability, and anxiety thus far but I've only taken 2 doses of the Amox 850mg (well, just popped the 3rd as I typed this). Could this possibly be a herx? Are my symptoms coming back because I went off the doxy and it takes a while for the Amox to kick in? I am beginning to think that maybe I should have just upgraded the quality and dosage of my probiotic (I started a 20bill capsule that requires refrigeration on Thursday at the insistence of my buddy with Lyme who thought the culturelle was worthless) and kept on the previous protocol since it worked so well instead of switching to amox and a lighter overall Antibiotic load. Anyone have thoughts, advice, or experiences? Thanks so much!