Furious and offended

Llmds nurse calls me today and says I'm a complex case and have lots of anxiety and says maybe I should see another llmd who can better treat the severity. I dnt think she knows what shes doing, she said this office is different and based on all the anxiety and neuropathy I'm having, he feels it's real complex case. I'm in shock because she claimed I left to many messages as I my treatment hasn't even started yet. She pissed me off. Saying she wasnt comfortable and I need to hold off or see someone else. Says doctor sp will make an exception this 1 time and refund me my $1400 if I want to take take it else where and that he hasn't given a refund in years. I'm listening in disbelief and fear getting more scared as shes telling me this. I felt so hopeless, offended too to say the least. I cant believe I waisted money on this crap 1st time seeing am llmd and this happens and it's a bad experience for me. She said I'm having too many neuro physc symptoms and maybe it would be better if someone more educated would treat me. Bt went onto say shes sees my commitment in making all the appts with all my socs and keeping up then felt more comfortable to treat me as I agreed to hold off . I felt so insulted to say the least. I'm sensing shes a bit of a b****and just doesnt like when patients tell her their concerns or tells her things she doesnt seem to have knowledge of. She said this office is different and some llmds prescribe phsyc meds bt would rather have a phsyc do it as they would know better how to treat that which I completely get. She just got annoyed by my questions I'm guessing and she didnt even have knowledge of what clinda was used for as she stated. I'm not trying to be a know it all bt she stated she clearly may not be fit to treat me because I seem like a complex case for the simple fact that I asked her if I thought taking clinda a month before my testing could possible make my toxo or babs test come bk false neg . Shes like pissed about my concern or got annoyed . Whatev she had no right to try and single me out and try to more or less threaten me when saying " can I hold off and plus stop the jk for now I think its causing your symptoms, (when she knows my symptoms started 1 week after clinda and I hadn't start knotweed until a month later so impossible) and says "can u hold off and wait for your other doc appts . or maybe take best if u see another llmd" she gave up easily and didnt seem committed at all which is what got me nervous. I had a panic attack just from her calling. My doc called her and told her I wanted a referral for cardiologist (which my own doc can do bt was lazy i guess) so when I told her my doc should have sent the referral on her part Caitlyn says " is it ok if I send it out , or do u want to see another llmd maybe and they treat u better" it's like she was trying to be a smart a**. I had to be a kiss a** and agree to try and hold off mind u my brain is on fire amd other body parts , the ER gave me gabapentin and told me to let my neuro know right away, so when I told him he says there's nothing he can do about it and my mom was my witness. Hes the doc who laughed and says " oh yea who diagnosed u with lyme and lyme causes everything now" hes a d*** . My concern is taking gaba and running out since its from the er and my neuro refused to prescribe me anything for my nuerapathy and thinks nothing of it. I walked out and called my old neuro up and booked an appt with her because shes much better and know a little about neuro lyme which is better for me. Gaba may help with my neuropathy if I can just get that under control then it would be ok. I wouldn't recommend caitlyn from doctor SP office at all. Someone else in the forum mentioned she was bad at answering questions which I agree. I asked her clearly if I dont have babs then why would interact to clinda so strongly? My mom also was on clinda and had to stop it. My mom also has the burning slightly and babs sweating. She goes right around questions and act like something else may be causing it. I had no choice bt to suck it up and agree to hang in there until treatment because I only know of 1 more llmd Dr. M in CT and he stopped taking new patients like a hear ago and he was booked out almost a years wait ! Pls pray for me and for all this to pan out , I need support thanks

Wow I’m really sorry. I’m really glad I didn’t succeed in trying sp’s office now... everyone says I’m a complex case. Some of the llmds might take you virtually now. I know dr f in central vs was going all virtual. Of course they ran away screaming when they heard dr j hadn’t been able to fix me.

Bailey said...
Wow I’m really sorry. I’m really glad I didn’t succeed in trying sp’s office now... everyone says I’m a complex case. Some of the llmds might take you virtually now. I know dr f in central vs was going all virtual. Of course they ran away screaming when they heard dr j hadn’t been able to fix me.

Thanks, and sorry you're going through that. Seems like all the llmds are running away from us and its terrifying, I feel like am I ever going to be treated and get better, or are they going to leave me for dead? Not trying to sound crazy bt that's how I feel.
When I say complex case what is it u have , like bart babs and lyme or?? Why didnt they succeed in treating u may I ask?

Bailey said...
If you can’t find a doc through ilads ty emailing the global Lyme alliance. They gave me more options and responded quickly.

Thanks

Oh sorry mednerd, just realized you asked me a question... technically I’m still being treated but my abx largely haven’t been changed in 8 years... most changes and problem solving has been stuff I’ve dug up myself. When I have issues the doc office often is like umm we don’t know what to do so we didn’t call you back. Like this last round when I had, at times, crippling sound sensitivity they literally said that to me. I think basically I got to the end of my doc’s protocols and did not get cured so he doesn’t know what to do. Relationally we are close so he’s not like kicking me to the curb per se and he actually personally will answer my emails quickly, but I try to respect him snd use his staff for as many issues as possible.

I was trying to add the expensive docs to the team to get more ideas and at first it seemed like everyone agreed to work together as a team, but now expensive docs, I’m not sure they’re really consulting my current doc and I’m worried about how the relationship is going to work. Initially I thought dr J would be great at making sure they didn’t do anything too crazy to me, but I’m not sure they even spoke with him like they said they would. I’m not sure if this changed because they were trying to save us money or what but they sent me messages saying make sure dr j will write any prescription they want for me because of state licensing. I get state licensing but strongly feel that’s a conversation that needs to be worked out doc to doc because if I were a doc, I wouldn’t want to promise to write any prescription some other doc told me to. My mom thinks I read the message with the wrong spin and I hope she’s right.

Anyways right now my mom is working hard on trying to find a cheap service to come draw my blood at home since labcorp is being a pain about letting my mom get the tubes and draw it herself (I have a picc).

My favorite LLMD (or MD period) is in CT, Dr K in Orange, CT. He is awesome! But he often books a few months out.

Sue the criminal racketeers that causes this crisis in the first place ie., Steere, Haplerin, Kaplan, Shapiro, the ALDF, etc. Then you'll be able to afford your treatment. Lots of LLMDS are starting to charge stupid fees, I hate it.

LLMDS can help but antibiotics don't always work. The sickest patients who have Lyme are usually immune tolerized and have anergy. Antibiotics will increase this if the infections remain after treatment. If you are going the antibiotics route; Oxygen chamber, exercise and healthy eating is a must in my opinion.

birthdaysuit said...
Sue the criminal racketeers that causes this crisis in the first place ie., Steere, Haplerin, Kaplan, Shapiro, the ALDF, etc. Then you'll be able to afford your treatment. Lots of LLMDS are starting to charge stupid fees, I hate it.

LLMDS can help but antibiotics don't always work. The sickest patients who have Lyme are usually immune tolerized and have anergy. Antibiotics will increase this if the infections remain after treatment. If you are going the antibiotics route; Oxygen chamber, exercise and healthy eating is a must in my opinion.

This made me laugh because it so true. Who tf charges $15 per question lol? Especially if my doc needs to communicate to them. Sometimes I think llmds are making fortunes off us and turning this into a business rather than helping sickly ppl. Antibiotics dont always work and then u have ppl like me who are sensitive to herbals. Hmmmm wt to do wt do, stay sick the rest of my life .

Getting concerned about Medical Nerd. Haven’t seen a post by him in a while, which is unlike him.