Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
So I got very sick. EXTREMELY sick. I had gone off herbs to try to prove to my cardiologist that they are not causing my heart symptoms and fainting (like he insinuated).
I usually have at least 3 weeks before I relapse badly. This time it was one week. I started vomiting uncontrollably, fainted 19 times in the first 6 days and had a severe headache, dizziness and transient tremor. Every doctor (cardiologist, PCP etc.) told me to go to the ER.
I went to urgent care because ER's have not been helpful and my dad died in one. They literally don't help. Especially in my area. I couldn't drive that distance safely either.
At urgent care I got the doctor that I saw when I initially got sick 3 years ago. Unfortunately he had my prior records and I had debated Lyme with him years ago so there was no hiding it or concealing it. I'm writing approximately what was said at the appointment. It was one of the most frustrating experiences I've had.
This doctor had insinuated years ago that I had an eating disorder or nothing was wrong with me and sent me to a rheumatologist who threw my file at me, refused to test me for co-infections and screamed that I need a psychologist after I stated facts/studies that contradicted his opinion.
He started off by asking me why I didn't go to the rheumatologist 3 years ago. I told him that I did and it was a bad appointment. He demanded to know why and said that doctor is excellent. I told him excellent doctors don't throw files and scream at patients when a patient is able to contradict their opinion with scientific studies and by the way, you were both wrong about co-infections not existing in this state. I tested positive and go ask a vet how many dogs who have never left the state are testing positive for babesia and anaplasmosis.
I also brought up my argument about how if Babesia isn't chronic then why are people who test positive indefinitely deferred from donating blood alongside very few other chronic conditions.
He demanded to know who diagnosed and treated me for Lyme and co-infections. I said I'm not telling you. He wanted to know why and was becoming very irritated (like I wasn't?). I said that clearly there is controversy over how to treat it and you are on the opposite side of the controversy. I don't want to discuss Lyme with you. I'm vomiting, unable to take midodrine to keep my BP up and I was told by the cardiologists' office to try to access a saline IV for re-hydration. That's all I'm here for. Not to argue about Lyme.
He told me he will run tests but won't treat me. Go to the ER. Your case is too complex. Sign this form stating you are refusing medical advice (what advice?). I said give me the form but I'm writing on it before I sign it what's really going on here.
What are you writing!!!?
That you are refusing to treat me for dehydration and vomiting which are well within your scope of practice as an urgent care doctor. He has a mediator in the room at this point and I'm crying. I said I have called every doctor and nobody will help me. I've been fainting for years, see MAINSTREAM cardiologists for 7 months and nobody will do anything or even give me advice. I can't even get treatment for vomiting and dehydration!! This is outrageous.
WILL YOU JUST LET ME DO SOME TESTS? I agreed. I did blood tests (normal apparently) and a urine test which DID show signs of dehydration. I reentered the exam room for an EKG and the nurse (a cardiac one) demanded to know what happened and why I'm so upset.
I told her I didn't want to talk about it but she insisted. I said I have Lyme and I can't even get treatment for a simple acute symptom because doctors automatically think I'm crazy. She told me she has it too and was telling me local LLMD's. I was so grateful for her. She literally prevented me from breaking down completely.
Eventually he changed his mind and did a saline IV after trying to scare me with every minute complication and risk that could possibly occur.
I felt okay for one day and then worsened. He had given me tablets of Zofran but I couldn't take them. I had to resort to OTC ginger, meclizine and DGL. I have never been so sick in my life. I was very scared that I was going to end up hospitalized. I couldn't eat or drink anything. I couldn't even crawl to the next room without fainting. All over trying to prove to another skeptical doctor that herbs don't cause my symptoms.
I can imagine what this UC doctor is writing in his summary to the cardiologist and my PCP. Now I'm afraid to go to the cardiologist because he is not lyme-literate either and I don't want to repeat the situation or have him believe whatever the other doctor wrote (likely that I'm crazy or mentally unstable).
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Wow, I'm so proud and amazed. You're an inspiration. You were able to stand up for yourself, despite the opposition from the doc AND while feeling like crap.
That nurse sounds like such a blessing. I'd start with HER list of doctors (maybe one has a referral to a good cardiologist). Forget going back to the PCP if you can and that doc who won't listen to you about the herbs.
I'm sorry these doctors are such a$$ clowns.
You shouldn't have to PROVE things to these doctors by going off herbs. They are skeptics and will turn a blind eye when the proof is staring at them in the face.
Good luck! Sounds like hell.
Posts: 2839 | From California | Registered: Jul 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Thanks. It wasn't my PCP. This was a closer urgent care doctor that I was told to go to because the situation was getting serious. For me to call or ask a doctor for help ever means that something is REALLY wrong.
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Good for standing up for yourself and not keeping quiet about your situation. Not everyone is all bad though. Don't skip the appt because of what you might think he might have wrote.
I think the best thing you could do is try and get into another cardio guy. But if you can't get in, I'd stick with this guy. But drs are just like everyone else. They're going to refer you to their friends, not the best guy, sometimes. There might be another heart guy in the same hospital who doesn't respect that guys opinion.
I can't say much else except I've been there. Absolutely. Fighting with specialists of all kinds.
Most ER drs get paid hourly and could give a crap about anyone, not just you. At least the ones I've ran into.
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Well the cardiologist doesn't know the urgent care doctor but I think he's likely to take the word of another doctor about the situation over mine. So I'm pretty worried..........
I know he didn't write anything good and the cardiologist doesn't know me well. He also didn't want to advise me. Go to the ER....that's the advice. If he's the specialist addressing fainting and he can't even control it reliably what's the ER going to do?
I don't think my PCP will take this guys word over mine (hopefully). I already spoke to him and he hadn't gotten any info yet from the urgent care center.
I've known him for years and he knows I get angry sometimes but I'm not crazy. Just aggravated that I always have to hide everything and haven't had any improvement in any symptom for years.
My life was literally ruined when I contracted Lyme and I'm very upset about it so to have doctors tell me that my condition doesn't exist enrages me.
What herbs did you stop that seemed to make your symptoms worse? Maybe we can help you figure out what is going on from your list or offer other suggestions.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I stopped everything. All herbs and supplements. Trying to prove a point. Still haven't been able to get back on from the vomiting. I have Lyme and recently found out I tested positive for B. Duncani.
CSA, Banderol, Samento, Silver, B12 shots, Hypothalamus PMG, magnesium, Mora, Cumanda, Enula, etc. They were on a rotation.
Maybe you could test each supplement separately to see what you can handle.
Posts: 13116 | From San Francisco | Registered: May 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I would never go off supplements I knew were helping me to prove to some idiot doctor that the supplement was not the cause of the problem.
You know your body better than any doctor ever could. Stick with that, and with doctors who are more interested in doctoring than in covering their own a$$...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Yeah, I know but I've come to the point that I don't say anything anymore without proof or studies to back it up. That way it makes it VERY difficult for doctors to argue with me.
For example with the fainting, I literally took dated timed photos of my BP monitor to show that my BP was dropping to 80/40. They wanted to correlate it to theirs thinking it was inaccurate........mine ran much higher than theirs.
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