posted
I posted a few weeks about my primary who tells me that lyme is not real, that my llmd has been doing me a disservice, and today he told me my llmd is poisoning me, and that he wants to talk to him next time I see him and wants to see medical evidence that i have lyme and why im being poisoned with antibiotics for years.
So, my reaction was basically giving him lymemds blog, defended my positive igenx test, low vit levels.... that i was a perfectly healthy person before the tick.
Know what he said he think i have?
Anxiety.
Yep, I asked so u are telling me i have blurry vision, tremors, neuro symptoms.etcetcetc all from anxiety.
yes he says.
Wow, i said i find it amazing that u think its not real even in the face of all the evidence of my being ill and believe me, i was not this sick before the tick. I also said i find it amazing two docs can think completely different things.
Bottom line, i told him to check out the blog, talk to me doc and then make an informed decision.
Eh so anway you probably wonder why i went back to him?
Well i keep having reactive hypo symptoms and wanted to get checked out since my llmd is 5 hrs away.
He doesnt think i have a problem, said we could test for sugar but the plaquenil might make me less hungy and not eating could be causing symptoms.
LLMD told me to eat several small meals and let him know nxt week.
My blood pressure was like 88 / 48 or something weird like that. He said i was small and since i typically have normal pressure readings they arent concerned and maybe its from low blood sugar.
LLMD nurse concurred...
so i guess we shall see but im definately not going on lexapro like primary wants.
Posts: 319 | From nj | Registered: Jul 2008
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sutherngrl
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Isn't this just so typical? How are they allowing these ppl to graduate from medical school? If they don't understand it, then its anxiety? That is just way too pitiful. They dare not do one ounce of research during their entire career. Once you get that degree, the learning is over. Pretty common!
My GP keeps calling it "autoimmune". He thinks my LLMD is treating me with antibioitics for autoimmune issues caused by possible lyme, in other words....post lyme syndrome is what I think he is thinking. He believes I'm ill though; but just hasn't bought into the idea that LD has actually lasted this long.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
i wouldn't go back to him. i stop seeing any doctors who treat me that way.
Like my 4 year old would say when he is finished with something or someone- I X'd him!!!!
Find a new doctor and do what I do- don't talk about lyme! they just don't get it.
Maureen
Posts: 871 | From NJ | Registered: Mar 2007
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sutherngrl
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posted
Oh and the slightly humorous part of it all is that these idiot docs don't mind poisoning us with as much anti anxiety and anti depressant medications as we could possibly want. And they also don't mind doing a clinical diagnosis for anxiety and depression either. How bizarre!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
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- i wonder if you even were able read some of the posts people have for you. We tried to explain - in great detail - exactly why this doctor is not going to help you. There was also a thread with suggestion for the reactive hypoglycemia. He can't help you. He won't help you. No amount of "education" on your part is going to work. He's been honest with you and you should listen to him: walk away, he's not going to help you.
If you have reactive hypoglycemia, that is primarily something you have to control with your diet and monitor with your LLMD as time goes along. Lyme causes havoc with all systems and, mostly, we just have to do the best we can with excellent self-care.
Sadly, and I know it was not your intent, but you may have inadvertently put your LLMD in jeopardy by giving your PCP his blog. You might start looking for a new LLMD. Your doctor very well could file a complaint and his future, the future of his family, his staff and his patients is not more at risk.
It has happened many times before. We've lost many LLMDs by their patients giving away their identity. Sad, but it's how it is out there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
hey maureen- yeah thats what im thinking. Everytime i go, its because i want to get seen right away and everytime I come home, im more nervous and want to go to the er to get more tests bec i question my diagnosis.
So in a sense, he is right. i def have anxiety!! lol
southern girl- good point. he has no prob putting me on lexapro!
Posts: 319 | From nj | Registered: Jul 2008
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Keebler
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posted
- Anxiety goes with lyme. It's from the toxins. It's from the neuro cells become overly stimulated from the toxins. It just goes with lyme. But there are better ways to treat it and, again, this doctor is not going to help you with that.
Adrenal support, liver support and treating the infection help. For some there are other drugs that help (but you need to be careful that they don't add to liver stress).
Also, of course the social, economic and personal effects also contribute to anxiety. That can be helped with certain talk and body movement therapies.
==========
Oh, backing up, I see you don't believe you really have lyme. Well. That's another whole matter. Then you and your PCP agree. Lyme does not exist? Your LLMD is wrong? If that's what you think, is that why you gave your PCP his blog so your PCP could "check up" on him?
Do you return to your PCP, then, for him to find another diagnosis. And he says it's anxiety. The E.R. will probably say the same thing - or worse.
Whatever your test, history, symptoms, I am familiar with the LLMD you have and I assure you that you would not be in treatment for lyme were that not the case.
What do you question about your diagnosis? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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disturbedme
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posted
I agree with Keebler. That's the first thing I thought of when you gave your primary doc all of your LLMDs info and blog, etc., etc.
Your primary could file a complaint against your LLMD and that could get him in trouble... It scares me to even think of losing another LLMD.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Keebler- I have read all your posts in response to what I've posted about. Really I have. thank you all for posting. im sorry you dont feel i have listened.
I didnt think it was a problem with getting a non lyme issues tested with my priamry, i figured i'd go and get a blood sugar test.
I figured he would focus on the issue at hand. But I dont think he even believed these symptoms either.
Now i know for sure i cant see this doc anymore.
When I asked my llmd two weeks ago why i had neuro symptoms after I ate, he said he didn't know.
I didnt really explain in detail that I thought it was a blood sugar issue, so that is why after having the attacks the last few nights, I wanted to get my sugar tested. LLMD is too far away so i went to my primary.
Anyhow, so my llmd did say to monitor my diet so thats what im doing.
As for his identity, I figure he put his blog out there to educate so I thought if this primary could read it, he might learn something. My primary doesn't know his name and it doesnt say on the blog either.
But u are right in that I will make sure I dont tell my primary who he is.
Posts: 319 | From nj | Registered: Jul 2008
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Keebler
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posted
- But you just said you gave your primary doctor your LLMDs blog. With that, he can find his name in a heartbeat. It's very easy. And, yes, he will likely want to report him to some agency or organization. It's happened dozens of times. These doctors who don't believe in lyme want doctors who do put out of business.
Insurance companies even give them a bonus for turning in names of doctors who treat lyme. Then the insurance companies file a complaint that goes to the court system.
========
You can get a free glucose meter. You never need to see another doctor again for that. Just google: "free glucose meter" and you're on your way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
keebler- I just question my diagnosis whenever I see this primary and when I dont see myself getting better.
its tough to remember, but I have to try and focus on the good weekend I just had and not why i feel so bad today.
I gave him the blog to prove I was not crazy and that I do have lyme, and that it exists bec that is what I think.
I do doubt myself sometimes and worry that maybe there is something else causing the issues in addition to lyme... especially when i get the anxiety.
But whenever i leave my llmd, i always feel condient in him and my treatment. I have to try and keep that in mind.
Posts: 319 | From nj | Registered: Jul 2008
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My primary, who yes is a different doc since he is in my state and my llmd is 5 hrs away, asked for me to contact him when I was in my llmd's office so he could talk to him.
At least he doesnt have his name or phone number.
Posts: 319 | From nj | Registered: Jul 2008
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Keebler
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posted
- He can get his name in a flash. WIth his blog, he has ways to do that. He doesn't need anything else.
What books have you read about lyme? I will try to fill in the spaces with others when I see what you've already read.
It is normal to have what we come to realize as unreasonable expectations regarding how we think this should all go. Lyme is one of the most toxic infections known to man. No treatment is easy. There is no fast cure. You won't feel better for a long time. I assume everyone knows that - but if you've not read many books yet - maybe no one told you what to expect.
And, you will still need to eat, frequently. You will still need to get the nutrition in or you will have low blood sugar - but also because lyme really messes with the whole endocrine system. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
keebler i just read what i wrote about about how easy it is to find his name.
I hope that he doesnt file a complaint. i didnt mean to get him in trouble and didnt think there was a problem, since the blog is public. I thought i was doing a good thing by defending myself and hoping he would learn something.
Posts: 319 | From nj | Registered: Jul 2008
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posted
All of what i know about lyme is from my docs blog and what i've read on here.
You're right, I guess I did have an expectation of being better by now, especially since i was on medication right away and stayed on it for the last 1 1/2 yrs after i got infected.
My doc even thought I'd be better by now. So yeah, I guess now that its been a while, i feel defeated and discouraged and yeah, want some improvement.
I did have some this past week. I will say my depression and some neuro symptoms were better. Now they might be flaring due to my cycle.
I have been eating regular meals today, high fiber...etc so I hope it takes care of the hypo issue. I also hope the lyme hasnt caused an acutal endocrine disorder.
I am seeing an endo next mth to make sure all my hormones are in check and all, but so far my blood work was normal, even my Vit D levels are normal now.
Posts: 319 | From nj | Registered: Jul 2008
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Keebler
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- I know you didn't mean harm. I know you are trying to defend yourself. I understand.
And I know it's hard to believe that there are doctors who just won't help. But so many here have been through this over and over and I do wish you would have weighed that experience. Still, I've tried over and over, even after others told me to just walk away from the idiot doctors who could not help.
So, what I suggest now is that - first thing tomorrow morning - you inform our LLMD of the doctor's name who has his blog. This LLMD is somewhat public or he'd not have a blog.
But, he should be aware that the doctor expressed a desire to talk with him. If your LLMD makes the first move by calling HIM, that might actually turn out to be a good thing. It may not. But, let your LLMD know that the doctor wants to talk and give your LLMD that other doctor's phone, etc.
I also think it is important that you tell your LLMD that your primary says he is poisoning you. That is a key piece of information for your LLMD to have so that he can be prepared for anything being fired at him.
This is just what I would do. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I will let my llmd know what he said. I did tell his nurse today about his "poisoning me" so Im sure she will tell him tomrrow. Firday when I speak to her again, I will tell her to let him know primary wants to talk to him with me there.
I thought that was interesting, the primary said for me to call him while I was in with the llmd...
But yeah, he did at one point seem interested in seeing evidence or studies and didnt seem to know anything about vit d levels..etc So maybe llmd will inform him.
But yeah i will let him know. I did tell him last time what primary said and he didnt seem too concerned, but yeah better than he is aware of who has his blog.
Posts: 319 | From nj | Registered: Jul 2008
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posted
trigal, thanks. It is pretty terrifying. Im on zithromax and Plaquenil.
Since I've been on the Plaq, I hadly eat and so Im fasting for hours and I think that might be causing the problem
So im going to eat frequent, small high fiber meals to see if it passes. If it doesn't then ill have to get back to my llmd.
Posts: 319 | From nj | Registered: Jul 2008
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Keebler
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posted
- Please do not wait until Friday. I think he should know tomorrow. Just call and add that to the conversation you already had with the nurse about this. It will just take a minute of your time to tack on that detail and it could save him immense time and trouble.
If you tell him on Friday, he can likely do nothing until next week. If he wants to have a conversation Friday is the worst day to try to make that happen. He should have the courtesy of knowing as much as he can as soon as possible.
=========
QUINOA is an excellent food for you right now. www.quinoa.net -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'll call tomorrow but he won't talk on the phone. I will leave a message for him. Hopefully he will get back to me.
If not, I did tell the nurse who told him about what I saw the doc for, so i think she may have told him what he said. He already knows what my primary said last time, so he is aware of that at least.
Posts: 319 | From nj | Registered: Jul 2008
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sutherngrl
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It is very rare that one doc will file a complaint against another. Its almost always insurance companies that do that.
If a LLMD wants to write a blog about lyme treatment, he sure isn't worried about being found out. He's already out there. Its a public blog!
If anyone needs a complaint filed against them its your reg doctor for ignoring your symptoms and trying to make you think its all in your head.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
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posted
- You wrote: " . . . I also hope the lyme hasnt caused an acutal endocrine disorder.
I am seeing an endo next mth to make sure all my hormones are in check. . . . " end quote. -----------
Lyme always causes endocrine stress. Treating the infection is #1. Support is also helpful. You need to discuss that with your LLMD.
Is the endocrinologist you plan to see next month lyme literate? Has he been referred by your LLMD? If not, you are likely wasting time, money and setting yourself up for more disappointment.
Lyme changes everything - everything. Any specialist that you see is best if they are LL, especially for things that are often affected by lyme.
On another point, you said you've not read books or article other than what your LLMD has told you or what you've read in your threads here.
I have to stop now as I'm just toast. Reading so that you have a full understanding of this is very important. I hope you can do that. I'd start here - SELF-CARE guidelines, first.
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
------------ As important as any supplements, sections regarding self-care:
Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES
and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.
----------
[Regarding supplements, I know your LLMD's primary focus is treating infection. After reading below, and from Dr. S's book below, then you can ask about things that you think might be worth a try for support measures beyond all the self-care methods.]
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- This book is specific to lyme and other chronic stealth infections.
The author discusses the endocrine connection and effects of STRESS on a person with such infections. You can read customer reviews and look inside the book at this link to its page at Amazon:
TerryK
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posted
Keebler is right on in her advice. The only thing I would add is not to bother with the phone conversation between the doctors. It's clear that your doctor does not approve and I dread to think of what he will tell your LLMD or perhaps threaten him? Besides, why make it easier for your primary by giving him your LLMD's phone number.
If you are changing doctors (and I strongly recommend that you do), why bother with the stress of having this conversation for both you and your LLMD. Your primary has no reasonable intentions with this conversation.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sutherngrl
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Doesn't your LLMD address all of your medical issues?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Keebler- thanks for all the info. I'll take a look at it. I will also try to find out if the endo is lyme friendly.
Southerngirl- I understand what you're saying too. I figured llmd wants the blog out there to inform, and thats what my primary needs... some informing lol.
I will let my llmd know what he said and that he wants to talk to him. Hopefully, they will talk and it will be fine.
Posts: 319 | From nj | Registered: Jul 2008
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TerryK
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Oh, I meant to mention that I had severe reactive hypoglycemia for years. I controlled it to some degree with a low carb diet. I eventually became pre-diabetic.
It all improved a great deal with treatment and the addition of mangosteen. Don't know for sure which made the most difference but I'm not pre-diabetic or hypoglycemic now.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
terry- I dont plan on seeing this primary again. I need to find a lyme friendly primary, since my llmd is so far away. And no, I haven't given my primary his number and won't and maybe u are right, maybe there is no point in them talking. I will tell my llmd what he said and leave it up to him.
I never thought this could be a bad thing. I feel terrible.
Sutherngirl- thats the issue, llmd is so far away that I need a primary to go to in between appts.
Posts: 319 | From nj | Registered: Jul 2008
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posted
terry- its funny bec this was not one of my original symptoms and only has developed since November when I started Plaquenil. So while I got used to my other symptoms, I haven't gotten used to this.
Glad to hear u are feeling better now!! I hope these symptoms subside from regular meals. So far so good today. Posts: 319 | From nj | Registered: Jul 2008
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Keebler
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- I used to pass out - dozens, if not hundreds of times - for years. My blood sugar was often around 60 and while one EMT rushed me off in an ambulance because he thought that was far too low, the E.R. doctors told me I should not have come in even though the EMTs strongly suggested it and my body was shaking as if I'd been stuck in a mountain snow cave for a month.
I had seizures and was kicked out of the E.R. for that. I'm telling you - only LL doctors are going to understand this. It's not good enough that an endocrinologist be lyme-friendly. He or she should have knowledge, skill and experience in lyme, other tick-borne infections and even other chronic stealth infections.
True, not everything is lyme. But for a patient who has lyme, it is imperative that all their doctors know all about what they face and understand how lyme affects the body. From there, they can explore other possibilities but they can't proceed without that basic knowledge.
Being lyme-friendly (as in not tossing you out on your ear) just will not cut it. Lyme Literate, ILADS-educated. It really matters, even if they don't treat lyme or agree with all manners of ILADS' doctors . . . they need the basics first.
As southerngrl asks about your LLMD addressing all your issues - YES - whatever is lyme-related, discuss with your LLMD. You can't just be going off here and there on your own. It will not serve you and is often unnecessary. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow, thats terrible that u had to go through that.
It's just insane that Docs can speak ill of other docs like this. I guess last time I went to my primary and he said bad things, I figured he wasn't informed. So when I went in today I thought I could logically talk to him..
guess not.
I just posted for a llmd in my area so I have someone as a back up to see if I have an urgent issue and can't get down to se my doc. I see him once every 2-3 mths and sometimes I have new issues happen and can't take the trip.
Maybe I can also ask him to rec someone here.
Posts: 319 | From nj | Registered: Jul 2008
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Keebler
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- Your local lyme support group should have the names of some primary doctors who can be back up for you, not treating the lyme but support with the suggested testing or routine matters. This is where lyme-friendly can work but most who are lyme friendly go on to learn more and become more literate.
You will also need to learn a lot about self-monitoring and self-care. We just have to weather a lot of storms ourselves. Knowledge is key. The links I've posted are but a few.
While I do not suggest trying to figure out all the differences in infections, etc. you must learn the basic patterns so as to roll with the punches. There are other sources that can help you with that, too.
I hope others will post whatever books they think will help you with your SELF-CARE and understanding at this point. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Terry, good point about a phone call not necessarily working out. Still, the LLMD has the right to know right away that another doctor wants to talk with him. From there, he can decide what to do but he should know. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'll check out my local support group too- good idea.
thank you Posts: 319 | From nj | Registered: Jul 2008
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sutherngrl
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posted
Well I have a primary too, since I travel 6 hour round trip to LLMD; but I only use him in emergency situations. And I talk about lyme as little as possible with him.
He knows I have it, he knows who my LLMD is because he has faxed him test results before, but I don't try to educate him on LD. He is a doctor and in my opinion, its his responsibility to learn about all illnesses including LD.
Of course he like most doctors doesn't totally buy into "chronic" LD; but he knows I'm ill and he accepts that I found a doctor that knows more than he does about LD. In most cases that is the best you will ever get from a primary physician.
You will wear yourself out trying to educate them. Save your energy to get well.
Use your LLMD for all your needs as often as you can. I travel every 2 months and that is often enough to get most issues that arise attended to by my LLMD.
They can even order certain test and labs over state lines. When I thought I had pneumonia, my LLMD sent me to my local hospital to get a chest x-ray and they sent him the results. When he wanted to check something in my blood, I went to the local labcorp in my town. Its a little harder but it can be done.
Don't feel terrible! I dont' think you need to do that. Just learn and move forward. Thats the best thing you can do for yourself!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Yeah I just need some I can go to for urgent situations, someone who won't make me feel bad or accuse my doc of horrible things. It only makes me doubt myself when I shouldnt, plus may cause an issue for my llmd.
My llmd is great with working with my from afar but sometimes it can take a few days to get him after getting throught the office staff. That is my only issue and if I need to be seen asap even for the flu or whatever, I need someone who won't judge me and cause problems.
Posts: 319 | From nj | Registered: Jul 2008
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posted
The trouble is that lyme is so complicated and all lyme doctors are overworked. And there aren't enough lyme literate specialists to help them, or enough lyme literate primary care docs to pick up the loose ends. This is why you are having a problem.
I second the motion that you contact your local support group and get names of primary care docs that would better serve you, and not cause you or your lyme doc trouble.
Posts: 8430 | From Not available | Registered: Oct 2000
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Topic: My my primary told me I was doing myself great danger going to a lyme doc - 08 March -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler- Yes, I remember my post from a few weeks ago and read everything that was written. Thanks again for all the suggestions and advice.
Posts: 319 | From nj | Registered: Jul 2008
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posted
Hey guys Try living in Vancouver, BC. Apparently ticks stop at the border. I think its a passport thing.
Anyways I had a long talk recently with my GP. I told him after 25 years - he helped me raise my kids - that I really love him and I would never turn my back on him the way he has on me. Utter shock on his face.
So seldom in life are we given the opportunity to stand up and make a difference. I said oneday you will be so sad that you didn't REALLY LISTEN. You are being given the chance to let your voice make a difference and to feel pride in what you vowed to do.
He said w/tears in his eyes he would do whatever it takes to find someone to help me. Thankfullly I already have a LLMD in Seattle but for a while I think I adjusted the mindset of someone just a little.
So lets not write off all our GPs. Lets work on informing them
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- laurisabelle222 wrote:
March 8: GP: "These lyme docs are just makin money. What you are taking goes against current medical advice. You are doing yourself a great disservice. You need to get to a Neurologist."
March 31: same GP: " . . . primary who tells me that lyme is not real, that my llmd has been doing me a disservice, and today he told me my llmd is poisoning me, and that he wants to talk to him next time I see him and wants to see medical evidence that i have lyme and why im being poisoned with antibiotics for years. . . ."
======
Once in a blue moon, it's nice when a doctor finally hears us. JOLA's experience is heartwarming - but also sickening that only after failure and neglect - and payment for such - that he then says he'll do what he can. But he's not gone after the education to do so. He's not taken the time to learn about lyme. Maybe he will . . . . there is still time (or is there?).
Still, in the meantime, we need to listen to doctors who flat out tell us they don't believe in lyme. We should believe them and walk away. They are supposed to be providing medical expertise. We pay them. It's a business transaction, we're not dating them. They are not members of our family.
It is crystal clear that this particular GP is not one who is going to want to learn about lyme. We need to LISTEN to what they say and not expect them to change just because we want or need them to do so.
We also would do best to stop trying for their approval. Dismiss them. Move on. Stop paying for ignorance, even if they are "nice" - they are still perpetuating ignorance (and, in some cases that leads to "medical" abuse) - and we are still paying them to do so. There are psychological and medical dangers to that.
You gotta know when to fold 'em. Know when to walk away. After you get better, send them a postcard with ILADS' website. -
[ 04-01-2010, 05:04 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Thanks to Pinelady for this link that shows us we don't have time to wait around for uninformed doctors' approval when we need educated LLMDs:
Buchwald F, Abul-Kasim K, Tham J, Hansen BU. - Sweden
Fatal course of cerebral vasculitis induced by neuroborreliosis.
Neurol India 2010;58:139-41
Excerpts:
May 2008 . . . a 25-year-old male
. . . possibility of neuroborreliosis was excluded. He was put on aspirin 160 mg once a day and dipyridamole 200 mg twice a day. His state continued to improve and one week later he was discharged. . . .
. . . About five weeks after discharge, his condition slowly worsened. His original symptoms progressed in severity and, in addition, he developed dysphasia and paresis of his left leg. . . .
These findings were strongly suggestive of neuroborreliosis. . . .
. . . He was treated with oral doxycycline 200 mg twice daily for 12 days.
His vasculitis was initially treated with IV methylprednisolone 1 g for three consecutive days followed by oral prednisone 60 mg per day. In spite of this treatment, his state continued to deteriorate. . . .
. . . He returned to our emergency room about 3 weeks later . . . consistent with cerebral vasculitis . . .
. . . patient delayed institution of appropriate specific treatment might have resulted in the fatal outcome. A contributing factor was failure on the part of the patient by not calling on us in spite of three weeks of deterioration. . . .
-Full letter at link above. =========================
Note for reference: Steroids such as methylprednisolone and prednisone should never be given to lyme patients without adequate prior use of specific antibiotics at specific levels. ILADS-trained doctors would have known this.
oral doxycycline - 200 mg twice daily for 12 days is not enough to treat lyme. But, the IDSA guidelines seem to have traveled the globe.
As well, there is repeated mention of the use of spinal taps for this patient. That is really unnecessary when looking for lyme, it can impede diagnosis and put the patient in far more pain - and debt.
These doctors followed IDSA, no doubt about that. Had they been knowledgeable of ILADS' research, the outcome might have been very different, indeed.
But they probably have never been exposed to the real research such as with ILADS' authors and they likely (yet erroneously) thought the IDSA was on top of lyme.
So, do we still want to stick with doctors who stick to the IDSA guidelines? -
[ 04-01-2010, 05:20 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
So ask your PCP what the medical establishment would do if you had cancer? They would poison you and tell you this might cure you!!!!!!!!!
Ask this doc what's the difference. Tell him you can't live your life with lyme, just like one can't live their life with untreated cancer.
You have to come back at these doctors and let them know you have a mind of your own. You are in charge of your health and well being. Period.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Just a further footnote: I knew someone with reactive hypoglycemia, so I read some things about it.
It appears that some people suffer with this condition chronically, but it has the same problem as Lyme, that mainstream doctors don't believe in it so they dismiss the patients.
The difference is that blood sugar levels can be very accurately measured while symptoms are going on, unlike Lyme--the tests for the presence of Lyme and coinfections and for the existence of some of the symptoms are unreliable or nonexistent.
Just wanted to mention this as a reason why your primary might also dismiss hypoglycemia, as well as Lyme.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
The primary care doctor "should" know who her specialist is. We can't be seeing doctors and not telling our care providers who are prescribing medicines.
However, if a PCP is going to that length of claiming the doctor is toxic and 100% wrong, then leaving that physician is necessary.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I agree completely with Metallic Blue's first statement above.
To be clear, my comments are not intended to keep a good GP out of the loop. It is very important that the GP understand as much as possible and be aware of all meds and doses. And, it is desirable for the GP to have some sort of a respected working relationship with a LLMD - very desirable.
My main point on this topic is that if a GP is firm - and repeatedly so - in condemnation of lyme treatment, no amount of codependent "oh, please understand me" pleas on the part of the patient is going to convince them to learn more. Walk on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yup, Keebler. Bottom-line, you've got to move on to another GP. Ask around Lymenet if anyone lives in your area and sees a Lyme Friendly GP. Lyme Friendly means that they don't treat the disease or specialize in it, but they allow the Lyme Disease specialist to do the work and they simply assist by helping the patient maintain their blood work, or get access to medications. Medications may not be covered by insurance if the prescription comes from a different state -- or even a different country. GP's should be sensitive to that fact and prescribe medicines based on the initial prescription of the specialist. The GP should "NOT" stand in the way of the specialist or the patient.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
What were you taking for anxiety or other issues before you started taking the Xanax?
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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The Human Side of Lyme - An Inhumane Disease of the Brain
Excerpt:
. . . Chronic or persistent Lyme disease--neuroborreliosis--seldom is identified by the symptoms of its most frequent form--subacute encephalitis--an infected/inflamed brain as well as an infected nervous system. However, this is the form in which it most commonly exists.
. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How the toxicity of lyme (and liver stress) can relate to anxiety:
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
=========================
ADRENAL EXHAUSTION / dysfunction can contribute to anxiety.
Lyme patients are nearly always affected with a hit to the HPA axis (Hypothalamus-Pituitary-Adrenal triangle of sorts between the hypothalamus and the pituitary in two parts of the brain ordering the action of the slave adrenal organs that sit on top of the kidneys). As well, the entire endocrine system takes a huge hit.
What can help:
=================
Great information about treatments options and support measures, including those to help adrenal/endocrine function:
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