Skeptical

Hey guys, so some of you know my backstory and for those that don't my introduction post should be on the first page at the bottom still.. but ill do a brief summary to kind of feel everyone in.. so here's what I have going on..

June 15th-18th I was bitten by what I thought was a spider, no rash, never found a tick.. all the while abusing anabolic steroids.. over the next month had headaches, toothaches, hip swelled up, achillies tendon swelled up.

July 18th (exactly one month to the day of the bite.. weird I know)
Woke up to an audi hallucination of what I thought was someone screaming my name, chest tight, face numb, hand numb, leg numb.. panic attack ensued, trip to emergency room all was well other than heart rate of 34. (my normal is about 50) Muscle spasms, facial numbness/tingling/burning, severe headaches, severe neck pain, eye floaters, erectile dysfunction, ringing in ears, tongue numbness/sore, body aches, body temp was around 95, terrible depersonalization, Panic attacks for 15+hours a day

rest of july, august, September- Spent running around to 5+ family doctors, Pshyciatrist, Neurologist, Cardiologist.. Received POTS diagnosis, Last ER visit I had a doctor suspect lyme, write me a 2 week course of doxy.. 6 days later had a band 41 positive on a western blot began treatment

Nov 13th traveled to DC to visit DR J clinic.. haven't began their protocol yet but plan to in the next 2 weeks.

I haven't had a new symptom since I began the doxy, my depersonalization has reduced by 80+%.. no more headaches, my neck isn't sore, I don't have the full body aching, for a while the burning sensations were gone and my Pots symptoms have came and gone...

Yesterday I was driving to the store and my right foot felt numb, I tried to brush it off but by the time I got inside the store my leg from my knee down to my toes felt like I had just sat down on the toilet for too long.. it didn't effect my walking but it had that tingling feeling.. when I got out to my car I checked and had a strong pulse in my ankle so that wasn't of concern.. over the last few weeks my neuropathy went from gone after about 3 weeks of doxy and then it stayed gone for about a week and now my hands and my feet are on fire, my left leg (the back where my calf muscle is) burns terribly.. when my hands and my feet burn it does not discriminate with what side it is on, both hands and both feet equally burn, I have had some burning in my right leg but 98% of the time it is only in my left one.. I am still having tongue numbness and then of course last night I had the new symptoms arise..

JSC gave me lab papers to go get done but unfortunately my fathers insurance stopped on the first of November and now im waiting for mine to pick up on January first so my hands are tied on what I can do.. I cant help but shake the feeling that lyme isn't my whole issue.. the weird neurological symptoms that keep popping up are leaving me very discouraged..ive already had a brain MRI and im being told that since it was clean MS couldn't possible be a problem, My ANA markers were okay although my chest is so sore I cannot push down on my sternum.. my sex hormone levels are within normal range with the exception of my testosterone being on the low side.. and as far as I know I have no vitamin deficiencies.. a couple of times a day I have a sharp pain in my lower back that feels as if someone has stuck a knife into my spine.. the only think im eyeballing at this point is my thyroid, my levels dropped/flunctuated quite a bit the last 2 times I had blood work but that's been over 2 months ago.. could my thyroid be out of wack? heart palpitations? burning? anxiety? I don't even know were to begin.. could anyone please tell me if you experience these things? they scare the me a lot worse than they bother me. I cant help but think about some crazy underlying disease (crazier than lyme) that's causing all this..

It sounds like lyme and coinfection symptoms.
If I’m remembering correctly, Dr J thinks you’ve had this longer than what you thought.

You are starting the abx in a couple weeks? Did that change ? (I thought you were waiting until after Xmas to start them.)

Burning pain is not uncommon - it’s one of my symptoms. I also had really bad anxiety.
I have POTS too

Yes your symptoms could ALL be from lyme and coinfections.

KentuckyOConnor said...
I finally called today and asked to go ahead and begin.. im waiting for the call back but I expect that they'll let me.. I cannot do the pain management protocol. not with where I work.. thanks for replying.. im freaking out.. Hows your POTS? all ive noticed is that my heart rate isn't getting anywhere close to as low as it was before the doxy..

So you’re not taking the Gabapentin?
My POTS is one of my lingering symptoms. My heart rate goes up when I stand from sitting - or if I bend down - to pick up something off the floor - for instance when I’m vacuuming.
It will rise to 100-110 bpm .

Your situation sounds like a typical tick borne disease story. It is good to carry some skepticism and ask questions as you find your way. I think you should trust in your LLMD. You are going to one of the best. If you do not have any response to treatment, then I would ratchet up the skepticism.

Hi KentuckyOConnor,

Sorry you are having a difficult time. If I were in your shoes I would not take any medicine (conventional or herbal) until I spent a couple of months just concentrating on detoxing. Some sites state that anabolic steroids can stay in your muscles as well as other parts of your body for over a year. That's why I suggest taking detox baths, using an infrared sauna, dry skin brushing, etc. I suggest removing the traces of the steroids before doing anything else as those are toxins that will continue to make you feel ill.

It doesn't make sense to me to take antibiotics right now as that will only aggravate your system and create more toxins.

The article below explains how toxins are the primary cause of your symptoms:

https://docs.google.com/viewerng/viewer?url=https://docobook.com/download/lyme-toxins-the-primary-cause-of-your-symptoms.html?reader%3D

Below is a good site for detoxing:

https://www.tiredoflyme.com/detox-methods.html

Hope this helps,
Denise

Thanks for all the replies guys, I definitely think that the steroids played their own significant part in how ill I have been but unfortunately at the level of functioning I was at without the doxy it’s not an option to not be on anything that would allow me to progress. I am also pretty upset, yesterday I called and voiced that I did not want to take the neurotin or trileptal and today I receive a call back telling me my doctor insist that I take both.. not sure what to do, a nurse is supposed to call me back with an answer to another question I asked. If I choose not to follow through with the “stabilizing” period could they refuse to continue on with treatment? I’m just really not trying to go through the whole period where I trip out worrying about side effects, feeling all mushy, more anxious, can’t afford to do it. I work 50+ hours a week.. I’m tryed to insist that I don’t feel that I need it, I have terrible sciatic pain with burning hands and feet like mentioned above but that’s the last of my concerns.. if that’s all I had going on I’d be on cloud 9. Annoyed today..

Thanks Denise! Interesting read.. I am going to amp up my detoxing. My symptoms seem to come and go on a 5 day basis.. it’s like I feel good for 3, bad for 5.. could it be herxing from the doxy? With me having the POTS symptoms do you think I would be okay to sit in a sauna? I’d like to try it soon. Maybe take it slow.. also, I am contemplating seeing an Endo to get my levels back to normal, do you think that would be a good idea at this point? The hormone replacement therapy? Or let it ride out and see what my body can do for a year or so?

1000Daisies said...
Welcome to the board, KOC. I did read your other post, and I'm impressed with your honesty and courage.

Since you are on a lyme board, you are obviously going to see us focus on lyme here. However, I'm very much an advocate for thinking beyond lyme. I actually believe some of the so-called coinfections are much worse than lyme, and yet lyme gets all the focus. And we all know that lyme doesn't even get enough focus! UGH. Calling them "co-infections" seems like such an injustice.

I am a broken record here, but I do believe it's important to step back and look at the bigger picture. Viruses are often not given the attention they truly deserve for the havoc they can wreck on our bodies. I read a book earlier this year, and it really made me appreciate how much viruses are a bigger factor than we realize and understand. For viral threads here, there are usually few responses and not a lot of information.

Those are just a couple of examples. I definitely believe in functional medicine, looking at the bigger picture and root causes, which isn't always lyme or lyme alone.

Thank you! I completely agree with you. I do know that prior to being sick I have had Pitted Keratolysis on my feet (leather work boots!) that I plan on treating soon. but I think once your body becomes overwhelmed viruses and bacteria alike flourish. im having terrible inflammation and my allergies have been awful since I began dealing with all this.. itchy eyes, runny nose. ive got to get my hormones back in check, I think once I do all of that I will see a lot of improvement.