Continued symptoms

Does anyone else get the weird chest pains? I’m doing a lot better. I can’t say that I’m not seeing any progress, but I’ll still have a numbness/crawling feeling all over my head, I still have muscle twitches that have gone away but every now and again they will come back. My depersonalization has diminished to the point that it’s only noticeable when I’m tired or have been awake for a while, the burning is gone.. I still have those weird feelings all over, my chest, stomach, neck, face, head.. I also pretty often keep a headache... I’m sure it’s Nerve related... the whole “POTS” thing is still coming and going... and not to mention the horrible ringing in my left ear that I’ve had for 6 months that drives me crazy sometimes!

My questions for some of you is this, are all symptoms curable? I’ve saw improvement in mostly everything I’d say. But I’m wondering where should I even set my expectations. Mentally and physically, should I be aiming to get back to the old me 110%? Or is that just not a realistic goal? I just need to know, I feel like I’m close to being able to begin some type of exercise and I can’t wait! I’m getting fat lol! Hope everyone is doing okay! Been a minute since I’ve gave an update.

Are you on Babesia treatment currently? The 5 days in a row protocol?

You may consider watching the movie "Root Cause'" its on amamzon.

my current LLMD has me on the azithromycin, flagyl, and amoxicillin.. I go back on the 23rd of april for my 3 month check up. hoping I can break through and see a big difference when I go back. I feel like I improved quite a bit a month on doxy and then that was as good as i got for 3 months, and now its like ive been at either a stand still or barley a crawl. this is the reason for my last post.. its hard to not become discouraged when i feel as if im not seeing any progress.. like i said, the POTS comes and goes most of the time, but i just have the weirdest head pain in the world, from sharp, to burning, to feeling like my entire head is in a vacuum seal.. ill still get bouts of air hunger, the muscle twitches are at random now and aren't constant and the derealization comes and goes, it still gets pretty bad but i also have moments that its almost gone.. another issue im having is horrible weight gain. when i first got sick i went from 240 (muscular 240, like 10% BF) to about 205 in 3 months. im not sure if its the gabapentin or wellbutrin or just the lack of me doing anything but ive shot up to 255 now and probably 20-25% body fat. ive lost so much muscle mass, but like i said, i cant work out, i get light headed, my heart races for hours after i do anything strenuous. im not sure what to do, i hate to lie around and get as fat as a bear and i know its probably an uncommon problem for someone with lyme. im also concerned because i know deconditioning to a person with POTs is like throwing gasoline on a fire. ive considered pushing through it and seeing if i can make some progress but everything is so tight right now, im functioning just barley good enough to keep working and im afraid to try and push myself to the point that im missing pay checks. im strongly considering trying to see an autonomic nervous system specialist and see what they say, i hope the POTS eventually goes away,call me crazy but i really think the derealization has something to do with blood vessel dialation and constriction. if i could shake that i would be so much more functional, im not sure if all of you deal with it but i literally feel like an alien sometimes.

my pots is weird too. ill wake up sometimes and i feel like my heart is racing so bad, sometimes i can walk up stairs and im fine and then sometimes i cant walk 25 foot on a flat surface, if you remember im not seeing jemsek anymore.. im wondering if this doctor will even want to treat any co infections, what medication should i use for that?

KentuckyOConnor said...
my pots is weird too. ill wake up sometimes and i feel like my heart is racing so bad, sometimes i can walk up stairs and im fine and then sometimes i cant walk 25 foot on a flat surface, if you remember im not seeing jemsek anymore.. im wondering if this doctor will even want to treat any co infections, what medication should i use for that?

Yes I had forgotten you switched to another LLMD.

Well if you were with Dr J he’d likely be treating you for Babesia now... or soon.
Maybe have a discussion with your current LLMD - about coinfectioms treatment - find out what his plans are.
Azithromycin, Amoxy and Flagyl are fine for lyme - but not Babesia... or Bart.

Would you be able to gently use a rowing machine? That's what my cardiologist/POTS specialist recommended, to at least work on core muscles. I found one for $30 on Craigslist.

I also think a lot of your symptoms sound like babesia.

It's great that you've seen so much improvement. That's a great sign. I think most of those other symptoms can be gotten rid of, may just have to find the right combos of therapeutics (maybe specifically hit bartonella at some point if you haven't already). Could be combo of babesia/bart causing some of those symptoms... can take a lot of consistent, effective treatment and rotations before some of the core symptoms ebb away. And always good to check other angles like mold, metals/mercury, etc especially if one is stalling with the pathogen angle. But it seems like you are relatively early in the treatment cycles... The fact that you are seeing improvement with antimicrobials is a good sign though that you are on the right track.

Quin said...

Girlie said...
My muscle twitches are gone too - but now and then (every few months) they come back for a day or two. I don’t worry about them - nerves take a long time to heal.

I get some pain periodically around my heart area - pulsing - and I don’t know if it’s my heart or just a chest muscle.

The muscle twitches and blood pressure thing seems more like HPA axis dysfunction than nerve damage.

No blood pressure issues.

Rarely get the twitches - so not really a problem.

I’m not sure what has caused my weight gain... I guess it could be antibiotics but I’ve never been so stationary in my life so it’s probably a little bit of everything.... I’d love to try the rowing machine I’ll look into that.... I know my doctor now tested me for co infections but they all came back negative... I know that doesn’t really hold any weight on if I have been infected with them or not, but the whole not being able to walk is the POTS flare up.. the fact that I have seen improvement in my pots symptoms gives me hope.. my thinking is this; if I have a few moments of normalcy then 100% normalcy should be possible. To me, If nerve damage was causing my POTS/Autonomic dysfunction would it not be constant? To me the fact I have days my symptoms flare up would suggest an active infection right? I do know that I normally don’t have just one symptom come back, if my ear is ringing my head is hurting and my skin is crawling, my heart is racing and my depersonalization is better.. I don’t really have an inbetween.. I’m either decent or I’m dying, I’m not sure where to turn from here.. I’m all in on Lyme causing all my issues. It’s the only thing that makes sense, although I have seen such great improvement I suppose I’m just impatient.. and I’ve also found that the line between feeling “the best I’ve felt in 6 months” and a trip to the ER is about 60 seconds wide. I think the shortness of breath is definitely more of my autonomic nervous system. I could be wrong and it could be bartonella or babesia. I also feel like I’ve had some lymph node swelling, whenever I began doxy the lymph nodes in my neck and under my arms swelled up, it lasted about a week and went down, and now occasionally the ones in my leg get sore. I’m not sure if you all remember but the doctor I’m seeing now I feel like has kind of underplayed my symptoms. I’m telling you, when this first began I was literally having the worst panic attacks 18-20 hours a day. Intrusive thoughts, suicidal thoughts, mood swings, the debilitation fatigue, when I brought this up to him and told him how terrible my quality of life has been he basically told me I shouldn’t speak to my wife about how I’m feeling mentally.. which is bogus... I know for a fact the dude is a clown.. he claims to have had Lyme but seemed suprised when I told him my pshyciatric symptoms.. I let it go in one ear and out the other. I’m using dr. J clinic pulsing schedule and all of their clinical advice I was given. My insurance just pays for the clown I went and saw and he gave me antibiotics so just for that I am thankful, I’m gonna keep seeing him as long as I’m seeing small improvements.. BUT if any of you have any suggestions on where I could go next, I would appreciate it. I’d love to find another doctor my insurance covers (blue cross blue shield) and I’m really looking for a place that’s pretty personal.. I’ve said it before, I’ll eat a hot steamy plate of dog crap a day to get better I’m sure most of you would agree with that..

yeah the expense mostly.. I had spent the initial 950ish on top of the 8 hour drive + stay.. waited almost 3 months, was never given the first antibiotic and then was told I would need to pay another 450 for a follow up phone appointment that wouldn't guarantee I would start antibiotics after that. I was already extremely displeased with how non-personal my experience was with them and the fact that they told me my symptoms were caused by an active infection but was never given anything to eradicate said infection was mind boggling to me. I completely understand the calm your nervous system jazz.. but at the end of the day masking symptoms isn't a cure. if im taking 19 pills for 11 different symptoms and 8 more pills to cover up side effects from the first set of pills but now im feeling okay that isn't a cure to me. I want to take my antibiotics, I want to feel if my face is numb, or my heart is racing, or if im fatigued. how would one even know how far along you were progressing if it were any other way? I guess I just don't want a band aid. I am a person who 8 months ago was hesitant to take a Tylenol more than a few times a month. I want to get back to as close as I possibly can to that person.. although their reputation would suggest otherwise, my personal experience felt unorganized, not personal, and as harsh as a thing it is to say, a money racket. I cant afford what they asked of me..and honestly the way it worked for me I felt taken advantage of. but to answer your last part girlie I was seeing an NP! I would love to see Dr. j, but from what ive heard all of his NP's use his approach.. they're all very cookie cutter with how they go about it from some of the people I have spoke with.. and ive also heard dr j is far more expensive to see...... from what it sounds like id be paying more money for the exact same thing I just left.. sorry to sound so disgruntled, I just know how sick I am and I know you guys are just as sick and for me to have felt like I was apart of a money racket really frustrates me.

KentuckyOConnor said...
yeah the expense mostly.. I had spent the initial 950ish on top of the 8 hour drive + stay.. waited almost 3 months, was never given the first antibiotic and then was told I would need to pay another 450 for a follow up phone appointment that wouldn't guarantee I would start antibiotics after that. I was already extremely displeased with how non-personal my experience was with them and the fact that they told me my symptoms were caused by an active infection but was never given anything to eradicate said infection was mind boggling to me. I completely understand the calm your nervous system jazz.. but at the end of the day masking symptoms isn't a cure. if im taking 19 pills for 11 different symptoms and 8 more pills to cover up side effects from the first set of pills but now im feeling okay that isn't a cure to me. I want to take my antibiotics, I want to feel if my face is numb, or my heart is racing, or if im fatigued. how would one even know how far along you were progressing if it were any other way? I guess I just don't want a band aid. I am a person who 8 months ago was hesitant to take a Tylenol more than a few times a month. I want to get back to as close as I possibly can to that person.. although their reputation would suggest otherwise, my personal experience felt unorganized, not personal, and as harsh as a thing it is to say, a money racket. I cant afford what they asked of me..and honestly the way it worked for me I felt taken advantage of. but to answer your last part girlie I was seeing an NP! I would love to see Dr. j, but from what ive heard all of his NP's use his approach.. they're all very cookie cutter with how they go about it from some of the people I have spoke with.. and ive also heard dr j is far more expensive to see...... from what it sounds like id be paying more money for the exact same thing I just left.. sorry to sound so disgruntled, I just know how sick I am and I know you guys are just as sick and for me to have felt like I was apart of a money racket really frustrates me.

“but at the end of the day masking symptoms isn't a cure. “

“I want to take my antibiotics, I want to feel if my face is numb, or my heart is racing, or if im fatigued. “

“how would one even know how far along you were progressing if it were any other way?”

Dr J believes that the pain, lack of sleep, etc affect the immune system. Those issues should be addressed so that’s why they prescribe pain meds.. or anti-anxiety meds... etc
Those support meds generally don’t resolve the symptoms totally so you can still gauge if the therapy is working or not -
They often don’t start abx right away.

Dr J has his method/protocols streamlined - based on his research and patients success over the years.
But he does evaluate each patient and formulates a protocol that is individual - based on their symptom picture, response to the protocols... etc.

As far as cost goes - I don’t see his fees higher than most llmd’s.
I don’t see it as a “racket”
I think Many (most?) of the experienced llmd’s charge 300+ per appt.
Now with DrJ my appts are spaced 3-4 months apart.

Kentucky - Sorry your experience with the clinic wasn’t a positive one and you wasted your $$

I hope you do find a LLMD that you have more confidence in.

jb1994 said...
$950 is higher than any doctor for Lyme I've ever been to.

I'm glad I found one in my area that charges $225 an hour. He seems knowledgeable too. I see him today.

How many lyme doctors have you been to?



My initial consult was $890 at the J clinic. That is the only one that costs that.
Dr J is also an Infectious Disease Specialist as well.
I had a 3 hour appointment - good physical exam along with discussing symptoms etc

Price drops for second appt and then again for third appt.

I would expect to pay more for the lyme docs who have been at it for many years with good success.
I would guess that Dr H is not as reasonably priced as some either.