HealingWell
Search Close Search
☰

LLMD in my area that uses IV Treatment

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/15/2019 10:30 AM (GMT 0)
Currently being treated by Dr J Clinic in DC and will begin their oral ABX regimen next month.. but 97% of the progress I have made has been on my own or through some of you and as most of you know I haven't exactly been pleased with how non-personal the treatment is there... im hoping someone could point me in the direction of a LLMD within 8 hours of myself that works more with IV ABX primarily? just gonna keep my options open and explore other treatment plans.. Feel free to email! thanks....... located in eastern KY.
Posted 1/15/2019 2:49 PM (GMT 0)
IV treatment for lyme should be reserved for only the most extreme neuro Lyme cases, or for those with zero gut tolerance for oral ABX.

Give ABX a chance it sounds like your sx are light, and you are starting treatment fairly early after the infection.
Posted 1/15/2019 5:15 PM (GMT 0)
SX aren't light at all.. extreme depersonalization, POTS, Heart rate as low as 32, muscle twitches, muscle cramps, mood changes, suicidal. fighting everyday to come to work, need it.
Posted 1/15/2019 6:56 PM (GMT 0)
As Tickbite mentioned - most LLMD's don't do IV abx unless necessary - ie severe gut issues or critical structures are affected (that's the criteria that Dr. J uses)


You haven't even started the abx, yet? Maybe stick with Dr. J for awhile longer and then decide?
Posted 1/16/2019 1:21 AM (GMT 0)
I've done IV abx for 6 months with a previous LLMD and now I am at Dr. J's clinic doing orals. I basically didn't improve at all on the IV abx. Stick with Dr. J's protocol. It isn't so much about IV vs oral that will get you better, it is about using the correct medications, which the JSC is very good at. For example: While on IV I was also taking oral dapsone and oral rifampin. They gave me the biggest herxs compared to any of the IV drugs I took.

I've been there. Stick with the JSC and spend your spare time looking into MCAS, mold, and other issues.
Posted 1/16/2019 3:01 AM (GMT 0)
Dr CC in Missouri Columbia will do I’ve if you like
Posted 1/16/2019 5:27 AM (GMT 0)
i just feel terrible yall, im not sure what to do. struggling everyday to come to work, and I cant not work. I just need some relief. called to finally make my app and feb 14 is the soonest they could get me in.
Posted 1/16/2019 8:04 AM (GMT 0)
How come you didn’t schedule your appt right after your last appt?
Posted 1/16/2019 8:17 AM (GMT 0)
they wanted me to do 6-8 weeks of the "calming my nervous system and controlling pain" plus, its 490$.. I had to make sure I had the funds and at the time I couldn't pay it because I had spent around 1500 total on my first visit, haven't had insurance ive been paying out of pocket for my meds, luckily as of jan 1st I have insurance again.

Not sure what to do girlie, ive been on the edge for going on 4 months, I spent 3 months wigging out, panic attack, full blown POTS and for 4 months ive been dragging my butt into work, barley able to function grinding out these 8 hours. im ready to go lie down in an emergency room and beg them to admit me until Im better but I know too that wont help. its insane to me im so sick and I cant get help. something has to give, at times I feel so close and then when I crash I swear I could literally die.
Posted 1/16/2019 8:30 AM (GMT 0)

KentuckyOConnor said...
they wanted me to do 6-8 weeks of the "calming my nervous system and controlling pain" plus, its 490$.. I had to make sure I had the funds and at the time I couldn't pay it because I had spent around 1500 total on my first visit, haven't had insurance ive been paying out of pocket for my meds, luckily as of jan 1st I have insurance again.
.

You do know that you don’t pay for it when you schedule it, right?

I can sympathize with the financial drain..
My in-person appts are about $5,000
3 flights each way for two persons, hotel for three nights and meals, appt cost (all in U.S $$) and then the meds.

I can’t work yet.
Getting closer tho - but I get stressed out just thinking about going back to my job after 5 years.

I hope you have some improvement in the next few months - that will give you a “boost” to keep on going.
Posted 1/16/2019 8:36 AM (GMT 0)

KentuckyOConnor said...


Not sure what to do girlie, ive been on the edge for going on 4 months, I spent 3 months wigging out, panic attack, full blown POTS and for 4 months ive been dragging my butt into work, barley able to function grinding out these 8 hours. im ready to go lie down in an emergency room and beg them to admit me until Im better but I know too that wont help. its insane to me im so sick and I cant get help. something has to give, at times I feel so close and then when I crash I swear I could literally die.

Sorry you’re suffering so much - it’s really sad that we don’t have the support we need.
Hang in there - in a couple of months you may see some improvement ... hope so!
Posted 1/16/2019 8:44 AM (GMT 0)
Yeah, i know but i didnt wanna schedule it and still not have the funds. i may call back in the morning and ask if theres any way possible they could call in my antibiotics, for the most part my pain is under control.. nerve related anyway. at this point id say my worst symptoms are in order:

Depersonilization/Derealization- Mine go hand in hand, ive seen some improvement but throughout the day it comes and goes, sometimes its so bad i feel like im smothering

Fatige- This also comes and goes, tonight im so tired i feel like i could sleep for days and days. and when it really hits im so fatigued its unreal.

Headaches- Still get these, they arent really your traditional headaches although i do still get those. i have ice pick headaches, i feel like someone is stabbing me in the eye up towards my temple, they only last for a few seconds but when they do i cant think i cant move anything i almst feel like im having a stroke.

Muscle twitching/Muscle cramps- both have improved with treatment but i still find myself having flare ups of both, mainly in my face and my legs.

Joint pain- ESPECIALLY in my ankles and my hips, my ankles are so sore i cant roll them around when im lying down, woke up tonight and it feels like i curled my right ankle.

Racing heart/POTS symptoms- Pleasantly, these have improved the most out of all my symptoms. 3 weeks of doxy kicked my POTS' ***, i still have my moments but they are manageable.

Neuropathy- in my hands, my legs and my face. ill get a sudden warm flush all over my body as well, my legs will feel sunburnt but arent tender to touch


I just cant shake the mental part of this, i can deal with being a little tired, i can deal with my heart feeling a little racey and i can deal with a headache every now and then. What i cant deal with is the feeling of pshycosis, the depression so bad that i want to die, feeling as anxious as someone about to be mauled to death by a lion, and being so mad at the world.

Im just like most of you, ive been from doctor to doctor, ive been told a lot of this is in my head, ive also been told its ALL in my head. before this i was such an outgoing happy person, i feel like the world, my family, my job, co workers, medical professionals, my friends, They have all turned their backs on me. being treated how i have has made me more mentally ill than the any of these bugs drilling into my brain. I need some relief guys.. i cant keep doing this
Posted 1/16/2019 3:01 PM (GMT 0)
I'm so sorry it's been such a struggle. I hope you can really get going on treatment soon. In the meanwhile, keep doing what you can with the herbs, for me there is a benefit to feeling proactive especially when I'm not feeling well. May want to look at allicin (I like zhang brand), seems to have broad spectrum activity against all three b's. Just be careful with herxes.

I'm glad you got an appointment for the relatively near future, 1 month isn't too bad. Especially if you are able to keep doing some treatments on your own in the meanwhile.

Keep hanging in there! I'm sorry for the lack of support, that is brutal. We are always here, I always found it helpful to connect with other patients, to vent and share our stories with people who get it. It's awful when our suffering is ignored or delegitimized, especially by people we trust or care about.
Posted 1/20/2019 5:49 AM (GMT 0)
Kentucky, - very sorry to hear you're dealing with this. I know how it goes. I have all of these symptoms. Just take it one day at a time.

sheeks - what's your experience with dapsone been like? Has it helped any? How long you been using it?
✚ New Topic ✚ Reply