posted
Has anyone come across doctors like this and don't you just hate it? When their patient could have a life altering problem and they dont feel right at all, the doctors are so fast to talk to them like they are crazy, throw some SSRI's at them, and send them on their way.
I have been to a bunch of doctors like that in the past three months in the search of trying to figure out the cause of my symptoms both mental and physical, and they all jot it down to either the after effects of mono, or that im just a depressed and anxious person and was born that way,
when ive never had anxiety or depression in my whole 25 years aside from the usual performance anxiety or in certain social situations, other than that I have always been outgoing and laughing all the time,
now I am a mess and lost interest in everything because of my derealization/depersonalization and all these other physical symptoms.
I tell doctors that i was bit by a small deer tick, they give me the elisa test, comes out equivocal and they don't even follow up with a blot test. I even went to one urgent care doctor who said " Here is some amoxicillin its the cure for all TBD'S." My jaw dropped when he said that cause i knew it was not true.
Luckily I am heading to a LLID doctor on tuesday, only one in the state pretty much so i have to live on a prayer at this point that she can find what could be causing my symptoms and derealization and be able to treat it.
Anyway back to the topic, has anyone even had to deal with these types of doctors who just would not go the extra mile for you and basically just acted like you were a morbid depressed and anxious person?
I feel its like everyone knows their own body, and everyone has been through some sort of anxiety or depression, even more than run of the mill at times, If someone truly believes something is wrong with them or they have an organic cause causing all the mental symptoms,
doctors should actually listen to them and try to identify the cause searching high and low instead of acting cocky and acting like the person is not normal and needs ssris or benzos to be able to function.
In alot of cases, yes the psych meds are great and doctors are helping many people get back on their feet with them, but a mental cause is not always the case, and i think if you truly have an organic cause for the problem that seems foreign to your mind and body which causes your body malaise and sends you into DP/DR or something similar,
you should be able to say whatever you want to these doctors without being labeled as a mental case and you should be able to receive an answer to what is causing it all rather than thinking you are going crazy.
I cant even imagine how many people that were stamped as having a mental illness that could have Lyme or even other physical illnesses causing all there problems when they could easily get an answer and receive proper treatment that can end their suffering for good and they can be able to enjoy life again without having to be on psych meds all the time.
It makes me sick to think that there are people out there suffering but being labeled as anxiety/depression/mental cases all because no physician cared to go deeper into the cause for them.
............................................... Breaking up the text for easier reading for many here -
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It is very lazy medicine, it you can call it medicine at all. Sorry about this. A lot of people have had this done to them. Why is it so hard for these doctors to understand that mental symptoms can have a physical organic cause? Then too, are they going to figure it out in the average 15 minute appointment? Probably not.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I've been told I'm depressed, suicidal, overweight, and a white female.
wth does that have to do with anything? I so understand what you're saying.
and the funniest was one who told me to loose 100 pounds and, get this, get a breast reduction.
I swear some of these docs get their degrees from walmart.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: " . . . Luckily I am heading to a LLID doctor on tuesday . . . ." (end quote)
Are you sure? Just want to be sure. Are they ILADS educated, aware, minded (or whatever you call being up on all the science of it and support methods such as ILADS does) & beyond?
They need not be an ILADS member but they need to know all that's been explored at all the ILADS conferences and by the articles over the years, especially most recently.
They need to know about, and have read Dr. H's new book on this, as well as be familiar with Burrascano's protocol.
That's really important. They need to know AT LEAST as much as any ILADS LL doctor - and the variations of each, and why they each say what they say. So that you can get an individualized
clinical ASSESSMENT, not rely on tests.
Do NOT rely on some other doctor or even their office (or your insurance co.) saying they are a lyme expert or even if they use the term "lyme literate." Even "yes, they treat lyme" is not a guarantee.
I got badly fooled by that more than once with two different ID doctors before I figured all this out. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Keebler, I sure hope so cause this doctor is my last hope for right now since i can not travel out of state currently. Although I was referred to her by two people on this site so i am hoping that is a good thing since everyone here is very educated.
if the whole thing goes south I will have to explore other options, but I am hoping that this doctor knows enough to help me out, because I would bet tons of money on it that all my symptoms have to do with that tick.
Unless it IS something else like i randomly developed a psych disorder out of nowhere due to the random onset of DP/DR or another random physical illness that does not involve TBD'S.
I was told everything I am going through is from Mono but i find it way too hard to believe that since i never had any of the classic mono symptoms but i was diagnosed with it by monospot test so it confused the hell out of me.
My first thought at the onset of DP/DR that it was a problem with my brain, still questioning that but since i did get bit by a tick it makes it a bit easier to filter out other things, too bad its so hard to diagnose and treat :/
posted
I have had doctors that even had my family believe that i was just depressed, anxious, lazy, lost interest in things and just need to get out and do things when i know deep down that there is an organic cause for what I am currently going through,
its not that i even lost interest in what i used to like, i just think it is unimportant to pay attention to most of those hobbies right at the moment so I can try to search for a cause of whats going on and learning more information on it because this means the most to me right now .
It is ridiculous, we pay them good money, they ask us if we have been having normal moods or if we have been able to do daily tasks , we say one wrong thing and its off to ssri land and being sent out the door.
(Hi - please break up your paragraphs into a couple lines so it's easier for many people to read - thx - Robin)
posted
I was treated for Chronic Fatigue for years, my doctor retired so I coordinated treatment with my PCP. She thought I was nuts cause all my tests were "within normal range." What she never quite grasped was my normal ranges might not be the same as someone else.
I was fine for about 5 years, then progressively got worse. She finally had had it with me and gave me the 20 minute depression talk.
As someone who comes from a family with depression, I am well acquainted with it and the physical pain it can cause. I KNEW this was not it.
So I spent a year going to specialists, and finally after reading cure unknown after realizing that my vertigo, joint pain and muscle pain wasn't normal, had an AHA moment.
Because I constantly had ticks being pulled off me my whole life, I worked as an environmnetla educator in a deer tick infested woods and pulled mutltiple embedded ticks off me AND had a bulls eye rash.
So I found an LLD, went back to my PCP for coordination...and as sooon as i said " I tested positive for babesia" it was all over.
I think they have like, memos that go around in boston about the wackado lyme patients. She insisted I had a psychiatric disorder, and my pain was due to lack of exercise my depression caused. Also, she insinuated I might be on drugs (meaning, I was crazed).
..............................................
Breaking up the text for easier reading for many here -
posted
Oh yes, this is how we are all being treated until we get clued in. Now I dish it back - when they say it's all in our heads, I say "Of course! The borrelial spirochetes LOVE brain tissue! They can be found in the brain very quickly after exposure and they begin to mess up all our neural networks!"
What's really fun is when I don't shut up and proceed to give them a physiology lesson about abnormal biochem, starting from the brain on down!
So.... once you get yourself educated about what these bacteria are doing in us, and yes, they cause all your symptoms mentioned, you too could have fun eventually responding in their offices! And when they walk out on me, I go and educate their staff, who can't walk out.
So you see, it's time for us to understand what's really going on and let others know.
But until then, you need to work on you. You can check with area support groups listed at the left to see if this doctor is Lyme-literate. You can also join your state chat group at http://health.groups.yahoo.com/group/georgialyme - ask to be added, then ask there. www.ILADS.com could also probably tell you whether that doctor listed with them.
Now that you've come this far, ie here, to a knowledgeable board of folks, it would be a shame for you to go to yet another doctor who might not know what they're doing. That's why I strongly suggest you get some feedback from some other Lyme patients.
Each symptom will improve with the right treatment for you for a BACTERIAL infection, not a mental case! Good for you for figuring you had something else going on.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
In case it helps there are some websites like vitals and ratemds.com where reviews can be left about doctors. I think it is a solid resource to get info on doctors. If a doctor has reviews saying they are arrogant or lyme illiterate it can save people time.
Also it is possible if people catch on maybe eventuallt doctors reviews will effect their business though maybe not since some people may just go to any doctor they find but for people who need good one it likely could make a difference. I learnt that lesson though and it leaves a place to put info on doctors out there.
Posts: 135 | From USA | Registered: Jun 2014
| IP: Logged |
posted
Thank you all for the information. I did hear that DP/DR can have no cause but im just not buying that, what i have been going through mentally is just way too odd for it to just be brought on by stress or anxiety.
Especially the eye symptoms like the black floaters and after images, its just all too weird. It happened about 3 months ago and the day that the DP/DR like symptoms came on suddenly it scared the hell out of me, it almost felt like an out of this world feeling like I was about to leave the earth.
That was my first symptom to come and ever since it happened I am messed up emotionally and mentally and can not enjoy anything like i used to cause now i feel doom all the time.
I can see why these doctors would slap a mental disorder on me because i probably sound crazy, but like i tell everyone, i know my body and mind and i know something is absolutely not right going on inside of me.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I've seen over 100 doctors in the 30 years it took to get the correct diagnosis (Lyme + Bart). Most of the doctors I saw thought I was a nutcase. I can count on 1 hand the number of doctors I've seen who actually helped me out of that 100.
And it is only getting worse now that Big Pharma is practically writing medical school curricula.
-------------------- -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
| IP: Logged |
posted
It will get better with treatment. A good doctor takes a thorough history and gets a comprehensive bloodtest to see your blood chemistry. They also know all about how our various systems can get messed up. It affects your brain too, your hormones, your moods - all chemistry gets messed up.
Treatment falls in three categories: treat the infection(s), detox and fortify the body. Treatments of the infections have a lot of options, beginning with antibiotics but not stopping there - herbs, supplements, oxygen, energy machines, etc.
You basically need to get to a good Lyme doctor and we don't know at this point what the status is on the one you're going to.
Btw, I drink mangosteen juice to stop all my eye symptoms. It's an anti-inflammatory juice that can be found in healthfood stores and online. I like the Mango-Xan version as it's the most tart.
We are all different in how we respond, so we can only try something and see if it works for us. I advise starting out slowly with anything to see how we do.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Here's a thread on what else to have these idiot (or good) doctors test for.
Yes, I've been told it's in my head, until my tests came back with 13 infections and my IgE levels were 10 times more than normal.
People I knew where still asking "if I was sure??" after I had the tests for proof. Don't expect support from any of these naysayers.
Good luck. A lot of us have been through what you've been through. It's a weeding process to find a good doctor who will test and treat you for the right diagnosis.
Listen to your body. You're your own expert.
Here's further reading if you do have psych symptoms:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- chaZ,
You say in reply to question if "LLID doctor" is really LL ?
" sure hope so cause this doctor is my last hope for right now since i can not travel out of state currently. Although I was referred to her by two people on this site so i am hoping that is a good thing since everyone here is very educated." (end quote)
Did you get the name from someone's list -- OR did those two people (or people who contacted them) have personal knowledge of this doctor?
That can be a very different thing. Sometimes, doctors' names wind up on a list - because they've "registered" in some system as "treating lyme" (even if they really don't and stick with IDSA) -- and those lists can find their way to the lists here that some folks use for referral.
Personal experiences, state & local lyme support group feedback is very valuable.
[ 07-21-2014, 04:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Looking back at your posting history . . . attached tick . . . symptoms . . . equivocal ELISA . . .
Be sure to consider as you get a Western Blot (IgM and IgG):
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
[ 07-21-2014, 04:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Keebler, she got the message about doctors, so you can let this go. The situation in that state is not good, but she has said she can't go out of state at this point. The state lyme assn and others have given accurate info about docs here, so she has been warned/informed already.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks, poppy. I did not know that the state lyme assoc. had given that recommendation.
chaZ said it was " from two posters" here. It is very rare to have an LL ID doctor (though I sure hope some are learning more).
I know that, sometimes, names get on the lists that don't belong there. Just didn't want that to happen again. And to be prepared, just in case.
I had not seen the threads posted above in chaZ' posting history, so just wanted to be sure that information was available in time to understand the IDSA - ILADS differences.
chaZ,
Sorry if this is a lot. Good to know, then, that your state lyme group has referred this doctor. I'm sorry that my eyes must have missed where that was stated.
Just keep this thread handy for later times when you want to look up something or read more about the why & how of it all.
I wanted to mention that MAGNESIUM might help with some of the symptoms . . . it's not to treat lyme, per se - but a good support since lyme can deplete our magnesium, making it so much harder in so many ways.
Topic: MAGNESIUM - LINKS sets -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Giving a lyme doc name in a state where it is said not to exist or is rare is difficult and has provisos, ifs ands buts, which are not easily explained. And shouldn't be online. Furthermore, the situation is fluid and can change quickly. These things are best handled by state support groups and some others. They can sift thru the info from the patient, make sure they are the real deal and not a troll. And will know the latest on how a doctor treats, as well as the political constraints.
So when new people get advice questioning those who are closer to the situation, it confuses them. I know you meant well.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There was no indication who sent the name, so I had nothing to go on other than just two people from here -- and that could be any one. We don't know who sends anyone PMs.
And, looking back, I can't find a mention the state lyme group was contacted. Still, you might have seen that in some other communication not in this thread - I did not see it in the posting history, though. But I'm glad you knew that.
There are some lists floating around that have some names on them that shouldn't be there, from time to time.
I just wanted to be sure that the state group was contacted, and those who sent the PMs were asked by PM - if this was personal knowledge, someone else gave a good review - or just from a list. That was mentioned as a good measure for anyone getting a name.
I wasn't asking for any name to be posted. Never intended that.
I've been to various specialists that I'd been told were LL and they were not. I never want that to happen to anyone else again, ever.
In this case, you say that the state group did give a referral but I had no way to know that. That's good news. A relief.
Looking back at posting history of chaZ, I see that you were one of the two who sent a PM. The other one who sent a PM is not apparent in that thread or could have been someone who did not post -
- but knowing your connection is also a relief. Hopefully, the other person is also as well informed as you are in the specifics for that state. And your knowledge of the state groups communication indicates all will be well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I agree with Keebler - we'd like to know that this doctor is indeed a real LLMD and not someone who doesn't know how to treat chronic Lyme.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Thank you for all the information everyone and I will keep myself informed about these things happening and I will have to stdy up more on the info Keebler has presented to me.
Yes Poppy is a member I was messaging with not too long ago about this recommendation on information about Lyme in GA, and since the situation is not good with Lyme in this state I do trust that Poppy has given me good information for the time being since i can not get out of state at the moment.
I am new here so I am sorry if i was not supposed to give out any names and i do apologize if i broke any rules, but Poppy has provided me with some information about Lyme in GA that was very helpful so thank you Poppy.
And to everyone else i can not thank you enough for all of your help, this is a great forum and I am always looking to learn more on the subject to keep myself informed.
Posts: 24 | From atlanta | Registered: Jul 2014
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic