Wasted Trip to Infectious Disease Doctor Almost Laughable

My primary care sent to an infectious disease doctor this week because of long-term high EBV results. The infectious doctor was very nice, but had no listening skills.

He asked about EBV tests and went over past tests. For enjoyment, I went ahead and mentioned I had tested CDC positive for Lyme Disease, at one point, and still had a positive IgG band 23 and 41. I hardly got the words out of my mouth before he said "You must have been treated because you are now negative." He also said band 23 can also be a number of other diseases. When I asked him which ones, he never answered. When I asked him why I have lost all my body fat, he started to ask if I had ever had an HIV test. Before he could finish, I said "6. Didn't rally need but one to be safe."

I immediately followed up with "What else can cause loss of body fat, other than HIV and Lyme?" He did not have an answer but said "we will just have to test for a large number of things." Nicely I said to him "You won't find anything because it is Lyme. Your final answer will be it is idiopathic. That means you don't know. And I will still have skin that has aged 20 years in the past 7 years or more.So why not consider Lyme?"

Keep in mind I was very nice when I said all to him. He then told me we are going to do a lot of tests and focus on EBV.

How many times have we all been through that or something similar? It's not even aggravating anymore - it's just a shame.

I need to go to a podiatrist about my foot because I believe I am developing two bunions. Don't know if that can be Lyme related, but I do know I won't mention Lyme. I'll just pay the doctor my $70 co-pay and hope he or she help with the pain.

I've gotten used to how it works,,, or doesn't.

JovaLyme, you're absolutely right, and I hope it didn't seem like I was making light of mental illness. At the time, I was diagnosed with PTSD and anxiety, which all of my symptoms were attributed to from then on. It was frustrating for me, alone in a new city, with encephalitis and POTS and glands on my face swollen to the size of a clementine, to be told "You just have anxiety." Firstly, anxiety can be serious and disabling and should not be trivialized, but also ... it was not what was going on for me. :-/

The infectious disease doctor I met was kind of great, just not about Lyme. He listened patiently, looked at everything I brought to him, asked a lot of questions, and it was clear that his mind was working hard and creatively the whole time. He was sure that I had Ehlers-Danlos syndrome and referred me to a geneticist for a diagnosis. To be fair, it would have explained everything I was experiencing at the time ... except that I don't have any joint pain or hypermobility, and I have multiple positive tests for tick-borne illnesses. But it was a solid effort on his part. (He was recommended by ILADS!)

ha ...white coats. saw 33 ducs but it was the compassion/lack there - of 2 nurses who helped me . one had als dx and her mom died of als she was nice enough to tell me the truth at a functional docs office . then once at the er a scornful sleep deprived np gave me a dx of cmv associated cachexia. it got me thinking and researching...its a dx known most in the end stages of aids . and i then found its was all that aids research that found out that patients with bartonella and hiv all had the wasting syndrome ! it then would take their lives quickly and tragically . so i then hit the new retro-virus theorys , unleashed by a medicine or age genetically, sounded a little far fetched . more believable is that a gram neg that was no long held in check by a collapsing immune system took over and destroyed nerve endings causing the circulation loss and subsequent flesh and collagen loss . it was an id doc who refused to treat a positive absolute borrelia test and pushed me out the door saying mitochondrial dysfunction. so what else could be intercellular, disrupting cell functions? i emailed everyone on here and lymenet that had made a post about the "mysterious wasting " in replys some wasted despite some doing treatment with oral for years and years , some sad -like a fellow who change his tag to skin&bones ....some mentioned gut absorption after abx as possible problem but it was two folks that fave me hope i was on the right track. one in europe who said lots of riffy and zith halted his als like lyme and and a gee on lymenet who narrowed his down to what he believed to be a type of mycoplasma. he nuked it and probably much more with years of florouquinalones ! unwilling to risk more nerve damage myself i chose bee venom , plasma rife and zhang as my triple go to's ...and with some success , no regrowth of lost tissues but wasting has halted and i even put some holiday weight on . keep digging keep asking questions...it was a giemsa stain on a simple slide that showed me how riddled my red blood cells were . no wonder they had no o2 or nutrients ...as an aside my partner and i later saw the id doc at the grocery store...before i unleashed a barrage , i was convinced that no amount of verbal assult could push understanding into his closed, thick head. ...maybe thru a bullhorn but i had forgotten mine.

Post Edited (bluelyme) : 11/30/2019 12:45:33 AM (GMT-7)

running wild said...
When I asked him which ones, he never answered. When I asked him why I have lost all my body fat, he started to ask if I had ever had an HIV test. Before he could finish, I said "6. Didn't rally need but one to be safe."

I immediately followed up with "What else can cause loss of body fat, other than HIV and Lyme?" He did not have an answer but said "we will just have to test for a large number of things." Nicely I said to him "You won't find anything because it is Lyme. Your final answer will be it is idiopathic. That means you don't know. And I will still have skin that has aged 20 years in the past 7 years or more.So why not consider Lyme?"

That’s brilliant!!!

Even more amazing that you said it nicely!!!

I get completely overwhelmed in the doctors office and come across offensive/defensive or just can’t communicate well at all. I even have trouble with my very supportive PCP and my Lyme doctor. I get so overwhelmed that I don’t know how to make the best of my appointments, and don’t know where to start or what to say.

Black Tara - Do you have any way to have all the blood tests done to check for different possibilities?

WBF - I learned to stay calm and not show a lot of frustration through coaching and during my divorce. Looking reasonable and calm goes a long way, sometimes. And I do not check the box for anxiety or depression when seeing a doctor because that leads them to write you off even earlier.

bluelyme - Did you ever get a good idea of what caused the loss of collagen/fat whatever you experienced? I never have, though I deeply believe it is Acrodermatitis Chronic Atrophicans. Mine has been fat or collagen loss only. Muscle spared, but I lost about 20 pounds and skin is so thin.

skinny joe - Good point. That is why I post some things and share experiences. I appreciate when others do.

Running Wild, wow you're brave for even going to the appointment. The moment the gp mentioned an "ID doc" I'd run like hell in the opposite direction. I would've had more respect for him if he had said, "I don't think I'm a good fit for your case."

It's astounding to me how backwards I realize the mainstream medical community is. They teach cookbook medicine. If your disease/conditions don't fall into a narrow band of symptoms they're familiar with, you're as good as very sick, if not dead.

Post Edited (ElizKA26) : 11/30/2019 4:15:09 PM (GMT-7)

running wild said...
My primary care sent to an infectious disease doctor this week because of long-term high EBV results. The infectious doctor was very nice, but had no listening skills.

He asked about EBV tests and went over past tests. For enjoyment, I went ahead and mentioned I had tested CDC positive for Lyme Disease, at one point, and still had a positive IgG band 23 and 41. I hardly got the words out of my mouth before he said "You must have been treated because you are now negative." He also said band 23 can also be a number of other diseases. When I asked him which ones, he never answered. When I asked him why I have lost all my body fat, he started to ask if I had ever had an HIV test. Before he could finish, I said "6. Didn't rally need but one to be safe."

I immediately followed up with "What else can cause loss of body fat, other than HIV and Lyme?" He did not have an answer but said "we will just have to test for a large number of things." Nicely I said to him "You won't find anything because it is Lyme. Your final answer will be it is idiopathic. That means you don't know. And I will still have skin that has aged 20 years in the past 7 years or more.So why not consider Lyme?"

Keep in mind I was very nice when I said all to him. He then told me we are going to do a lot of tests and focus on EBV.

How many times have we all been through that or something similar? It's not even aggravating anymore - it's just a shame.

I need to go to a podiatrist about my foot because I believe I am developing two bunions. Don't know if that can be Lyme related, but I do know I won't mention Lyme. I'll just pay the doctor my $70 co-pay and hope he or she help with the pain.

I've gotten used to how it works,,, or doesn't.

I had the same problem like you, went to any infectologist and said that i had facial palsy for the first time of my life and it was one of the red flags from CDC for lyme, i said i was bitten also. He replied: you have to be on a weelchair to have Lyme...! I said: everything said from you, bye.

Most doctors are arrogant and with pride. They didnt learn how to be humble on college, they dont teach that.

Worst of all is that their pride kill people who keep getting underdiagnosed by them. They can be assasins everyday and when people die, they say: oh it was idiopathic, it was from his age, he was weak in health we could not do anything, he had heart issues.

Many people die this way because of doctors incompetence. Believe me, i have been there.

All your points are good ones and valid. from my experiences.

Astroman mentioned a friend being prescribed steroids and damage done by them. It reminded me of 2011, when things really broke open and got much worse. I had strange, small "bubbles" on one of my knees, and it looked like start of poison ivy. I went to doctor, as I also had developed a bad fatigue. He gave me a cortisone shot, and within a day or two I felt better and bubbles went down. But on about day 3, they came back much worse then quickly became open, circular dry wounds. Then they got larger. I went back to the doctor, and when I walked in he looked exasperated. He asked "What are you doing back?" He treated it like I was crazy.

At that point, the wounds had gotten larger' like the size of a quarter to a fifty-cent piece, and were on my legs, arms and back. I was so irritated and felt so bad, I pulled my shirt, dropped my pants (to underwear) and yelled "This is what I'm doing back!" I then asked him what it is, and he couldn't answer. I then asked if he didn't know, why in the hell did he give me a cortisone shot.

It turned out to be Sweet's Syndrome, a very rare happening that often comes with leukemia or leukemia can develop within five years (that's why I really wanted to have the two bone marrow biopsies I had). It also turns out Sweet's Syndrome can come after or with an infection, which I now know was Lyme. But it took 11 years to diagnose Lyme.

Then another doctor diagnosed Sweet's Syndrome 2 weeks later and put me on prednisone, which, literally, made me crazy. I think he started me at 40 mg, and I didn't sleep three ours a night for two weeks, even as he lowered dose. I was on it for months, and we all know how bad that is for Lyme. Ironically, he tested for Lyme as I remember him telling me I did not have Lyme Disease, based on tests. He meant I didn't have the ridiculous CDC required criteria for Lyme. I thought I was dying and became obsessed I was going to develop luekemia.

Sorry so long, but this is a great example of what Astroman mentioned about 20 year old medical books and other comments made by others. While there are some very good, caring, out of the box thinking doctors, the norm is what we all have experienced. Lyme leads to so many other problems, and other problems lead to other problems,,,,,,,,,,

That was a good move, Astroman. What are we waiting for? There is only positive to getting tests now instead of, possibly, letting a health condition get worse as we wait for,,,, whatever. When my primary referred me to a hematologist a month or so ago, the hematologist asked why I'm back after having a bone marrow biopsy again two years ago. I didn't mention Lyme, but just (nicely) said "Take a look at my most recent labs."

She did and immediately ordered more tests. I told her I don't believe I have cancer but with EBV in the mix, I wanted to rule out the worst first. She was great and understood that. And so good to hear a doctor being okay with you being your own advocate. My primary is like that, and she is so appreciated.

Getting that "no cancer" answer takes a lot off the mind. Glad for you. But waiting for the results,,,,, I'm not good with that. It's become like PTSD.

if someday you need a surgery you could end wishing it was better to have a group of monkeys doing the surgery than doctors it self.

https://www.bbc.com/news/10194990

And the most horrible truth is this, doctors are killing by negligence, when will be the next time you go to hospicide?

https://www.cnbc.com/amp/2018/02/22/medical-errors-third-leading-cause-of-death-in-america.html

Post Edited (isitlyme) : 12/1/2019 1:45:52 PM (GMT-7)

UnsightlyCignet☄️ said...


I can't believe you had to test for leukaemia astroman
.

I was a little is out of context, but without going into the vast array of immune cell levels mine are still pretty messed up. But I feel good. Bone marrow, spleen and liver also come into play here. There is not one type of Dr that understands all of the immune cells in detail. The specialized immunologist could not say it wasn't a bone marrow issue or not, I figured thats part of his job, no? My GP said a cancer blood Dr knows this part though. Leukemia (and or ?) non-Hodgkin's disrupt these cells as well and there were more tests to follow thru with that. The cause most likely is what lyme did to these (the long lasting after effect). As far as I know, there are no lyme Drs studying this area. Everyone just stops at the CD57 test, the tip of the iceberg. So when you cant pinpoint the cause, its best to knock off other possibilities that can be pin pointed. I'm over 50 with good insurance....and I use it!!

Good point, astroman. Getting someone to take kidneys serious before they are too far gone is another story. I started noticing my creatinine and GFR had been off for years when I started pushing to look into it more. JovaLyme's situation is a great example of that and advocating in the face or stubbornness by a doctor.

Speaking of kidneys - astroman - I responded to your post on the very slow kidney site.