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Doc Talk – v. 2
So it’s getting close to that time again, the 3-4 month mark where I go for follow-ups with both of my doctors: the one in town and the one out of town. First, we will head to the out of town doc here in a few days. This will not be a face to face visit. It will be our (mine and my hubs) 2nd Group Visit, Group B (2nd visit of 4-5). Right. A Group Visit. This is my life as a Chronic Lyme patient. Welcome.
You may be wondering what that is all about. I am still wondering myself. The first one was interesting. Patients checked in every 15 minutes. Vitals were taken and then heart test was completed. Then, we all headed to another larger area – there were about 20 of us – and we had about a 2.5 hour visit. During this visit, our doctor provided all kinds of information to us about Lyme disease and multi-systemic issues it may and can cause. Much of this information I already knew but it was helpful to have the information presented all at once.
Then, after hearing all of the info, we were given a lab request sheet. We were told to mark some of the labs we thought we should have done based off of the information and based on what tests we have already had in the past. Now, while this wasn’t a bad idea, my main concern was “HEY, is this covered by my insurance?” And of course no doctor can anser that question. From the list provided, and after reviewing what labs I’ve had done in the past, I was still looking at at a sizable list.
There was no face time with my doctor. I did have a couple of questions, but with so many other people vying for her time, plus my fatigue, I was ready to go. Now for the aftermath.
Luckily, this was summer because, I kid you not, I spent some 10 hours figuring out what exactly the labs codes meant, researching diagnostic codes, then researching the code numbers for the labs (my doc’s lab request did not have any lab codes on it, and THEN, talking to my insurance (yet again!) about what might be covered or not. All of this BEFORE I went to the actual lab to get the tests completed.
I can tell you that if it had not been summer break, I just would not have had any labs done because I would not have had anywhere near that kind of time to research.And, wait for it….I also received a separate bill for the little heart exam before this Group visit (I had NO idea this would be billed as a separate charge to my insurance, who then did not cover it) and I think it is like $130. I owe that to my doctor;’s office and must pay it before my 2nd Group visit next week.
Oh right, I also just received another separate bill in the mail for the dermatologist visit I had this past July. Yes, I paid when I left in July. Yes, they told me they were sending off the biopsy. No, they didn’t tell me it would be YET another bill. As a matter of fact, when I left my appointment that day, they had me pay $130 on top of the $50 co-pay because I was having a biopsy, and I wasn’t going to get charged separately for the lab work. Really? Because I just had a $350 bill just show up from some LLC lab place that I am assuming processed the biopsy? Not quite sure but that is my guess. Yes, I can call the doctor’s office. Yes, I can call the lab that has billed me. Yes, yes. It’s just so time consuming and energy zapping, and hours more wasted……I cannot imagine what navigating this whole health “care” system is like for patients way more ill and sick. It’s ridiculous but even more than that, it is CRIMINAL. Highway robbery. In our own country.
So needless to say, as we all already know, health insurance sucks, the health system in this country sucks. I know more people than not who have been railroaded and screwed by our healthcare system and most of this has been in the past 3-4 years. As patients, we can’t get prices beforehand, we can’t really “shop” around as heath insurance companies tout because from at least what I have seen, every step of the way, not one person or entity can give you a real “answer.” They shift us around and around, and it isn’t until we get the bill that we can remotely begin to try and figure out anything and by then, everything is so convoluted, it can take days, weeks, months to try and sort anything out and even then, it is rarely to the patient’s benefit.
Anyhoo.I am trying out one more Group Visit. We’ll see. Although the information shared last time was good, honestly, there wasn’t too much I didn’t already know.And the bottom line cost of that visit, the trip, the labs, the supplements, etc. at this point are not outweighing the benefit I gained (it wasn’t much if indeed anything) so I may need to reconsider doing the Group C meeting.
Well, my people, I hope your September is going well. Stay cool and take care – B
Thanks for Spreading the LOVE!!!
13 Comments on “Doc Talk – v. 2”
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Read Between The Lyme 
What a completely crazy system is this!?!?
Don’t you have enough on your plate being ill or sick?
I’m so glad to live in a country where the law regulates the minimums the insurance has to cover. Anything that’s on top of this the doctor HAS TO make clear to you that you have to pay for yourself and the costs. And you have to agree in writing.
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Wow. That would be so great to have the information, especially about costs, ahead of time. It is ridiculous here. And many with health insurance choose to go wothout treatment because again, the costs can be so exorbanant! The out of posket costs are insanely high and that is while paying the monthly premiums. But patients are stuck in the middle. I mean what do you do if you really need care? Also, in our country, insurance does not cover any real holistic or integrative approaches/treatments. The entire system is set-up for corporations to make money not to actually help patients. Thanks for reading and commenting! Where do you reside? 🙂
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Holistic or integrative approaches aren’t covered here either. Except for very few exceptions.
I again notice that although our system is flawed, it still is pretty good.
I am in Germany 🙂
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Oh, yes, I’ve heard of Lyme patients from here traveling to Germany for treatment!! Maybe one day, I can do that too!
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I keep my fingers crossed for you 🙂
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My September has been infinitely better than yours apparently. Hang in there, my friend.
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I hope all is going well for you, Hugh! I’m hoping in another week or so, things will settle down at work and that will help.Take care.
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I pray for and I hope things work out for you. I know it’s tough hang in there. Keep in touch and let us know what’s happening. Thank you for sharing.
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Thanks, Donna! I hope you are doing well yourself.
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Hello friend
The paperwork juggle is just starting. I’m not sure if you live in Canada, elsewhere or US, I’m in US. I’ll just share my opinion, this group crap sounds crazy, expensive…travel cost on top of. You made a comment that I pray isn’t the way I took it. You said you don’t ever get face time with your doctor? Is a PA handling your case? Did you skip IV Therapy and months into the pill protocol?
If your doctor’s office is coding you as Lyme patient your waisting time sending to insurance, they don’t cover. That’s why you can’t pay by credit card at office. The WITCH HUNTER Lyme doctors are on the loose until the CDC gets off it’s ass. A rule of thumb I learned about insurance thru this process. It all starts at CDC, if they say treating Lyme only take 4-6 weeks of antibiotics….that’s where everyone else get a break or has to cover. If the CDC don’t approve long term antibiotic treatment or Lyme takes longer than CDC thinks patients are screwed. CDC-the from there Medicaid/Medicare or any other government medical facility. If Medicare doesn’t cover the Insurance doesn’t have to cover. That’s part of the huge brawl at the center of Lyme Treatment.
I had a terrible doctor locally, after 5-6 months didn’t go back. I was told my lead level was high and I might have to do these horrible sounding test. As I was dialing the office, I noticed it was another patients paperwork. So much for HIPPA.
I was on IV Therapy for 9 months, none covered, cash on the spot. $100,000. That doesn’t include the travel to & from DC every month, supplements or RX’s. RX’s have not been an issue, they pay.
I’m going to DC in a couple of weeks which is the first time since ending IV’s. I’m on RX’s, so bull headed will not take the couple of hundred dollars of supplements we bought.
I have improved in areas, not in others. I have Lyme and it’s two co-infection friends. They live in my brain so my memory was taken from me. I talk to myself loudly all day to help? program my brain not to forget where I left my water.
Is your local a general and does basic evaluations of your health? I’ve blogged about Lyme for over a year and talked to many great folks, I’ve never heard of Group meetings. It maybe standard where you are, the hair went up on my neck when you described, in my mind lack of value for the cost. Are you new to this doctor? Which side of the Lyme argument is he/she on? Pro-it requires a very long time to cure Lyme or Con-six months at most and you’ll be well? That can make a huge difference. I was assigned a PA and I’ve seen only her and only communicated with her. Each visit is roughly 2.5 hours long. No doubt you could go on for two hours about what your body is doing or isn’t; I’ll stop there. I’m open to answer any questions I can.
I will give a tip on the massive amounts of paperwork, we have the clear folder that opens to 10 or so file slots. We don’t leave the office without a receipt, and other signed paperwork and directions written out for the medicine. We separate it our. I keep all RX pharmacy receipts in a rubber band, makes it easier at tax time. Keep all receipts, cab everything, if you hit the magic number you get a few bucks back on taxes. If you search on my site loos for Lyme Update, I’m working on one now, I thinks it’s #18.
I hope something will answer a question or be helpful.
Take care.
🙂
M
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HI!! 😀 So happy to hear from you! You are very kind to comment. I’m sorry if it was confusing. I live in US. I have two docs, one local and one out of town. The out of town doctor is the one I see for face to face appointments as well as for these new Group appointments. Both doctors are LLMDs. My local doctor has had me on oral and iv antibiotics. I’ve been treating almost 4 years now. There is definitely progress but it’s chronic. About 9 months ago, I added this 2nd doctor for a more holistic and integrated approach. I’m off off abx and still trying to get my stomach on track. Right now, I’m on an herbal protocol and using drops to address viral loads. My co-infections are all viral: EBV, HHV6, Mycoplasma. Like you, I try to keep all of my receipts etc from each visit, pharmacy receipts, labs. I have graduated from a regular folder to a hugev3 ring binder lol. I will for sure check out your blog about this. I need to get better at organizing all of the paperwork! Thank you for all of this great information. Are you seeing Jemsak in DC? I’m considering Klinghardt as I have a friend I could stay with up in that part of the country but damn. It just so expensive I just don’t know how I could manage paying for treatment after the first round ($3-4000), and his treatment plan is for 2years minimum. I’m sure you get it especially if you are already seeing an awesome Lyme doc in DC. OK I’m off to check out your blog for info. Again, thank you, friend! xxoo!!!
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Personal opinion of course….see Jemsek, you want to get as well as possible. he is the man. I’m not sure you know much about his background, he was semi-famous in the medical community for his AIDS discovery. It was from there he started putting pieces together on how close both diseases left a similar destruction behind. Expensive no doubt…a 2-3 year plan is better than 4 to ? plan. He is a firm believer of supplements, they are very knowledgeable how they work in the body and exactly why you need to take. We are blessed and could go the fast track if there is such in Lyme. I’ve been ill for years, only seeing Jemsek little over a year. I have no doubt if I stayed with my local LLMD, I would die. Jemsek runs a tight ship, very specific protocols, everything is driven by him. He has a great team of PA’s and I only have a few issues but there administrative related. We are over $100K in and it was hard for me to swallow, but what is my life worth? I’m probably looking at another year or 18 months. Without the IV’s it is so much less expensive. I’m a hard head some times and plan to push my PA to only see her every 4 months. There is no reason to see more while on medication. We do phone con no, we can in future. My gut says she’ll say three months and I have other plans. The only thing that could change, my port has to come out. We’re doing surgery at George Washington Hospital, we plan to tie the whole team down and get me scheduled for surgery.
When we’re talking about this amount of money and you’re that sick, you have to step back, not narrow in on each visit cost (our’s 6-7K) for nine months. Yet I have turned the corner and see wellness ahead. What wellness means, I don’t know. You will suffer more mentally and physically is paying less and going longer seeing two doctor’s.
For me one great doctor for all Lyme related gets better results. My husband and I can rarely have the exact thought, how can two doctor’s who are not a team with the exact same drummer deliver the best for you.
I have accepted my wellness is not like before. I’ll have some physical damage from all the meds, my guess. The bastards are in my brain, eaten my memory including best memories. How much will I get back? How can a arm grow back after an amputation. I have to be real, there are several women who were treated in 80’s that are in terrible shape. Today it’s different but we don’t have a cure, how can my doctor make brain cells grow back.
I wish you luck, do some gut wrenching soul searching, look at youtube videos on Lyme and then listen to more. Its help me mentally prepare for being my own advocate and Im honest. I tell her, no I do’t take that supplement. Right now the only thing for me is a Probiotic. Will the others help, sure…..everyone has a limit. I’ll take meds that eat my stomach but draw the line with setting an alarm every hour to continually take supplements.
I will say if I didn’t blog not sure how long could hold my mental illness together, it could get bad. It hurts like hell to write, my hands burn. everything hurts and I won’t take pain meds unless feel like death. I’m already addicted to 5-6 drugs, don’t want a pain med addiction, hard to kick that habit.
One thing I learned last month is in Texas there are no rules that say how many days you have to wait until able to refill Controlled Substance. Past experience is Insurance allowed 3-5 days before end of script. WELL….CVS corporate decided they would put a very strict rule of 2 days. No-one is told that when drop off. How can a drug store say because there is still a drug addiction problem in our country we are not going to consider Chronic Illness to disability and leave you with only two days. The reason I had to go 100% cold turkey withdraw from Xanax. Another post a long story. Managing my RX’s is a huge stress, at 53 my body can not live in hell with devil on my back from their ignorance.
Thanks for allowing the off load session. My Lyme post are brutally honest, no way would I gloss over the hell of Lyme. People still can’t get it that ticks are not the only way to contract, or I don’t use DEET, I didn’t either…look what avoiding DEET did for me.
I’m struggling with the memory issue and somehow last week managed to change something and not receiving comment emails. Another line on list.
I pray you have people who love you around to care for your needs. My husband is a trooper, it was a little rough at first, he has come thru still paying exact precision to every detail when changing my bandage.
All I do is let God drive the car.
Take care, let me know if I can help. I’m don’t have have any more answers than the next person who has Chronic Lyme.
🙂
M
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I’m in Texas too!! OK I’m at work.I promise to read all of your very thoughtful words this evening and I thank you!!
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