My backstory/New Member

Hello all, I just created my account and am excited to get to know some of you and share my journey.. I have actually been reading information on this forum for quite some time and I just decided to join and post. This will be quite long and very complicated but any and all encouragement, tips, and advice are appreciated very much.


Im a 24 year old male from eastern Kentucky, Growing up I was athletic and participated in any and every sport I could get involved with unfortanatley it also got me involved with Anabolic Steroids since I was 17 I have used testosterone from sketchy websites on about 5 different occasions. I no longer play sports but i landed myself a job with the department of justice. I continued to abuse steroids and lift weights consistently. I love my job and was hoping/ expected to work a long and fulfilling career in the federal prison system. last Christmas my fiancé and I were happily surprised with the news of her pregnancy. during the summer she had scheduled maternity photos at a local state park, on june 19th of this year we traveled there for the day long photo shoot, the pictures turned out beautifully but about 4 days after that day I discovered a red spot on my leg that honestly looked like a bad spider bite. for 3 weeks I tried to "pop" the place because I was unsure if it were a spider bite or a seriously infected hair. I didn't realize it at the time but about 9 days post bite is when I had my first symptom. a swollen hip joint on the leg I was bitten that was so inflamed you could feel heat coming from it by hovering your hand a few inches over it, Toothaches that jumped around my mouth, a swollen achillies tendon. While all this was going on, I brushed it off as your normal wear and tear on your body. my fiancé was scheduled for a c section on july 9th, I was working vigorous amounts of overtime and on the day he was born I chalked up the worst headache of my life to being nothing more than stress and exhaustion.. 8 days later on july 17th I was sitting at home with my new family, my fiancé gave me my weekly shot of testosterone and i followed that with a dose of letrozole (estrogen blocker) i sat up with my son all night and at 8AM when i lied down to go to sleep i experienced an audio hallucination; Someone screaming my name and when i opened my eyes my face, right arm, and leg were all numb. this of course, sent me into a full blown panic attack and off to the ER i rushed. By the time i had gotten there and calmed down all my labs and test had came back normal and they chalked it up to me messing with my hormones, the only thing that shocked the doctor was my low resting heart rate of 32 (my HR is usually 50ish) i was told to follow up with a cardiologist and the next month was made up of 10 emergency room visits, muscle spasms, depersonalization, more panic attacks, the onset of POTS and many many more symptoms. After being told this was all due to my hormone imbalance i was told to wait it out. for the entire 2nd and 3rd month i spent seeing countless family doctors 2 neurologist, an ENT and finally i stumbled across a 20 something year old ER doctor who told me he did not believe my issues had sprang from a shot of testosterone but he believed that the bite that i was calling a spider bite was infact a tick bit and that i had lyme disease he ordered the test, 5 days later i had a band 41 positive western blot and he began treatment with DOXY 200mg daily. after a month of treatment many of my symptoms either went away or they lessened greatly. my depersonalization persisted through and i am still battling that as i post this. Last week made 6 weeks i have been on doxy, i am about 60% what i was before all of this.. I visited a certain lyme doctor 9 hours away in DC and they put me on a maintence dosage of doxy (M,W,F) i have been feeling okay, minimal anxiety but tonight it was like it came back full force. i am aching all over.. chest, teeth, arms, hands.. am i back sliding? is the lyme coming back? so nervous i am going to have to take more time off from work.. i don't want some of those terrible symptoms to come back..

Welcome to the forum!!! that's fascinating about the ER doctor pursuing lyme and treating based off the one positive band, usually they are way way way more conservative. Given the response to doxy it sounds like lyme/coinfections is in the mix. Monotherapy is usually not enough, I'd also consider getting examined for coinfections like bartonella and babesia. Tbh the current lyme doctor you are seeing doesn't sound like they are cutting it, I'd consider trying to see another llmd who can thoroughly check you for other infections/issues and then pursue a more comprehensive treatment (whether it be antibiotic, herbal, combo thereof).

There are some great herbal protocols out there. I def recommend checking out Stephen Buhner's website where he lists some of the basic protocols. Could also try provocation method to indirectly test for pathogen presence, ie take antiprotozoal herbs/meds and gauge the response. If there is a flare it is usually indicative of underlying protozoal infection (like babesia).

The Stephen Buhner books are good resources, as is Dr Richard Horowitz's book on these diseases. I've found them very helpful in better understanding my situation and they have helped me figure out what strategies make sense to pursue.

Good luck in your recovery!!!

Thanks for all the warm welcomes! I am seeing a PA at Dr J clinic in Washington DC. in regards to confections I was told by my doctor that she suspects bartonella. I began having skin tags on my neck about the time I started getting sick. A lot of my symptoms have improved with just doxy but I also understand that some of my issues may not be lyme and coinfections because of the lifestyle ive been living since I was 18. Partying 3-4 times a week, smoking, abusing steroids like I mentioned above. I am sure my body is worn down from all the abuse I have self inflicted on it so I am very open to learning about overall healing mentally and physically.. if it is okay below ill post what medicines I will be treating with starting in January.

week 1. Augmentin and Bactrim 3 days a week 2 x a day
week 2. Flagyl 3 days a week 2 x a day

Once again if that isn't permitted just LMK ill delete. I was also told to stay away from sugar, Gluten free, Detox like crazy, other medications I am currently taking daily are as follows:

Wellbutrin XL 150MG
50-100 of Probiotics a day
Multi vitamin
Vitamin D-3
Vitamin C
zantac 150 twice a day
lorantedine 10mg
glutathione

would you folks think adding my own natural herbs and supplements along with my ABX treatment would be okay? ill do anything to get better. This has honestly been the worst 6 months of my entire life. like I said before, the doxy has helped a ton but I am still only a shadow of my former self. My lyme doctor seems to be confident ill rid myself of every infection I am dealing with but they are also telling me im looking at 18+ months of treatment. I have listed my email in my profile, if anyone has time and would like to share their story id be very appreciative of that! Thanks to all!

I haven't taken any of them since june. so I do not believe those to be a factor.. I believe we are speaking of the same clinic.. that's why I decided to drive 8 hours to see them.. ive heard their treatment is very aggressive but some of the best around. they did tell me to take the 4-6 weeks to stabilize and manage pain. I am not in enough pain to begin taking Neurontin like they want me too. I actually used their patient portal last night and requested that I begin my treatment ASAP.

Also, My physiological issues have probably been my worst.. do you deal with depersonalization dahlias? it has been my worst symptom.. I cannot enjoy anything even my good days are plagued with that foggy vision and eerie sense that something bad is about to happen.. I hope that goes away with treatment.

I have that sense of impending doom, but it's hard for me to tell how much of it is due to circumstances vs. infections, lol.

I used to feel somewhat disconnected from my body, but I think it was more a visual issue for me. I remember feeling like I was looking at someone else's hands chopping vegetables, and I'd be startled at the sight of my own hand lifting to pick something up. I had some pretty severe visual issues from inflammation.

Glad you reached out to them about this. I'm not sure how good they are with responding to the portal. If you don't get a response tomorrow, you might want to call. Which NP did you see? (Just initials.)

Post Edited (Dahlias) : 11/25/2018 10:51:59 PM (GMT-7)

I don't know CW. Keep us updated about the response!

thanks girlie.. I will definitely check before adding anything on my own.. I know they plan to also treat me with herbs and supplements as well but I suspect that will be some time down the road.

I see that you have been treating since 2014? have you made a near full recovery? Any guidance is appreciated!

the antihistamine is for allergies. im not sure if its a coincidence or because of all this but my eyes have been so itchy since this all started. the list of meds is from the J Clinic.

Glad to hear you are at that clinic, that offers a great opportunity to treat the infections. While some of the lifestyle stuff may be regrettable, it is in the past. A lot of those symptoms that you mention strike me as being caused by infections. Do they suspect babesia? some of those symptoms could be caused by it, it was for me. I think they treat every patient for babesia at Dr J's clinic, so either way you are in good hands.

As others mentioned, if it was me I'd wait a bit before adding in my own stuff, especially since you are starting treatments in the near future (and they can be incredibly aggressive). Can always add stuff later on. It will be interesting to see how you respond to treatments, that can be telling and like I mentioned responses to meds can be hints that one is going in the right direction.

Timelines for recovery vary widely. You got sick relatively recently and you are young, those are positive things

Hoo boy, I relate to what you are saying in that last paragraph. I've dealt with some anger issues with how I was treated and disrespected by doctors. Had my own pride issues, certainly living this experience has been a huge serving of humble pie. I do still carry that chip on my shoulder a bit, but I like to use it to motivate me to keep pushing forward. Plus I try to contextualize this experience by reminding myself that we can learn and grow from our suffering/challenges...

Oh yeah, def could have had the lyme for a while. What I should have said was you got very sick only more recently (relatively speaking), and that is good because you are getting on top of it as quickly as possible.

It is difficult having to navigate this stuff especially without full confirmation via testing. A lot of it is empiric and trial and error.

Better to overthink things than underthink ;) that's my view. Plus a healthy amount of research will allow you to make the most informed decisions possible as you navigate your health journey. I blindly trusted doctors for a long time and it cost me big time.

KentuckyOConnor said...
I tell my fiancé a lot, I’ve never been depressed in my life until about 2 months ago. You know how it is.. feeling bad all the time is enough to bring someone down and then with all the BS your friends, family, and doctors say it drove me straight into depression and I’m still dealing with it now, I think it’s what made me push to figure out so hard about what was going on with me.. it’s hard not to be prideful. We fly through this life with our heads down, I feel like I’ve hit a wall and now I’m forced to look up and all around! You guys are awesome tho, thanks for the quick reply and encouragement. How long have you been treating?

I have never been depressed/down in my life either, until a few years ago when I got lyme symptoms.

This has really affected my husband.....I've always been happy...and now...it overwhelms me to be experiencing all this pain...and other symptoms..

I am also definitely glad I found this site. It’s nice to know I’m not alone.. (although I hate that anyone has to go through this)

So, like I said.. currently I’m on doxy. I traveled to DC on the 13th and they want me to manage my pain with neurotin and trileptal.. and I begin my first true round of ABX after a month on that protocol.. I do not think I need something to manage my nerve pain, it isn’t to that extent.. my biggest issues are the POTS, depersonalization, Headaches and fatigue. we have a little saying here in eastern Kentucky and I find it fitting.. I work in a maximum security prison and I cannot go to work “blew in the creek!” I’m definitely ready to begin treatment so I plan on calling after I post this and asking if we can start my antibiotics.

Since treating with Doxy I’ve had some symptoms disappear, some that come and go, and I’ve had new symptoms.. 2 symptoms that have started within the last 6 weeks are my palms and my feet burning? It feels like I’ve fell on gravels.. or like I’ve come in from the cold and stuck my hands under hot water...cold water relieves the pain.. does anyone else experience that? Also, if I go a few days without doxy my pots begins to creep back and flare up.. is that to be expected or normal? And will the regimen of augmentin, Bactrim and flagyl keep that at bay like the doxy?

Lastly, I know about the studies on how oral ABX is just as effective as IV.. but I can’t help but wonder if IV would knock this out of me quicker or be more effective.. I’m thinking of asking about it.. does anyone know how much the insurance will cover of the IV treatment? I currently have blue cross blue shield..