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Stupid Doctors? or am I really crazy?
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Stupid Doctors? or am I really crazy?

I have been suffering from progressively worsening bilateral hand and hip pain for a year, have had new onset of stiff neck head aches with intractable vomiting (I am not a headache suffrerer) in the last eight months, had right lower jaw pain with swollen glands, have xrays showing severe deterioration of the joints in my hands (I'm 53), positive ANA and rheumatoid factor, mri of cervical spine and lumbar spine showing narrowing of the spinal canal. Have seen a rheumatologist who said that she thought that I probably had hepatitis that gave me osteoarthritis...Hep. A, B, and C were neg. as were liver enzymes. hip joints show no arthritis. She won't do a lymes test because my esr and cbc were normal. She told me to take motrin...my thumb joints are so contracted that I am losing function. I went to see a new pcp since mine quit to teach before I finally went to see her and I was left with a brand new nurse practitioner. The new pcp also refused to do lymes test for same reasons. They are diagnosing me with 1. jaw infection (not confirmed by xray), 2. osteoarthritis. 3. new onset atypical migraine headaches. 4. Radiculopathy. 5. Carpal tunnel. doesn't it seem odd that a relatively healthy person would develop all of this in one year? TX? why Motrin of course.
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18 Comments Post a Comment
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1554647_tn?1316830820
Hi there, You can pay out of pocket for a Western Blot lyme test through IGENEX.  You have to find a doctor, or naturopath to draw your blood and sign off on it.  Your best route would be a lyme literate doctor. (LLMD), You can google them for your area or go to lymenet.org under the flash discussion.  You might have to pay out of pocket too.  

The test your doctor would run is useless for the most part anyways.  

It is totally weird that you would develop all those different things in a year.  It should be looked at like a multisystem problem, rather than a strange coincidence that all those things happend around the same time.  duh

The problem I find with specialists is that a lot of them rarely look at the bigger picture and can only see through the eyes of their speciality.  I feel like I have been chopped into little pieces by all the specialists I have seen in the last year.  

Anyways, I wish you the best... keep us updated
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Avatar_m_tn
everything you are experiencing could be lyme related. While lyme has many symptoms and the symptoms vary from person to person, all of your symptoms are those that lyme can cause. I would suggest you find a doctor asap who would be willing to test you for lymes. An LLMD (lyme literate doctor) would have no problems testing you and would not tell you that you are crazy. Most standard medical and infectious disease doctors dont know a thing about a lyme and laugh at you when you ask for a test and they prolly say something like, "this is all in your head", or "there is no way this is lyme" I would search the internet for an LLMD in your area, or you can go to www(dot)ilads(dot)org and contact them for help finding a doctor near you.
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Avatar_m_tn
and I 100% agree with ness!!!! :o)
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Avatar_f_tn
thanks for the info, guys. Urgent care drew a lymes test and gave me a cortisone injection today because I looked like such crap and they felt sorry for me...I've had more help from the urgent care center than the specialists...infectious disease clinic said that they would not see me for Lymes because they "don't treat it, because people in the south don't get Lymes disease". Guess they have never left home.
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Avatar_f_tn
Sorry to hear you're getting the standard 'we don't have Lyme here' speech.

Btw, if you do have Lyme (an infectious disease), a cortisone injection might make you feel worse, since it suppresses your immune system, which is trying to fight off the infection.  

Let us know if you need help finding a Lyme specialist.  They tend not to advertise their speciality.
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Avatar_f_tn
but PS, sometimes people with Lyme find that small adrenal supplements are helpful against fatigue.  Beyond that, I'm clueless.  Sorry!  But my first reaction would be suspicious of cortisone .... not medically trained tho!
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Avatar_f_tn
Good to know...I haven't perked up quite like I thought I would after a cortisone injection, but it is helping my joint pain some...I didn't know about the controversy so I kept wondering why none of the Dr.s would even consider it...Its just a blood test after all, and they have certainly done about a hundred of those so far...but the one infectious disease clinic said that they would not take me without a difinitive diagnosis or unless review of my ALL of my records (including neuro, rheumatological, dental, PT assessment)  convinced them to see me. after the review, they are agreeing to see me but made it very clear that it was only for "fevers" and nothing else..(why would they want all of those records if they were just seeing me for fever?).I think maybe that they are taking this seriously but will not admit over the phone that they might possibly treat a possible tick born disease. I don't care what they want to call it as long as they can make me feel better enough to be functional.
Can u get these adrenal supplements over the counter?
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1554647_tn?1316830820
Not to be a pessimist, but I wouldn't waste my time with the infectious disease doctors that won't let you through the gate.  Even if you 'convince' them you have lyme, they will likely only give you a short treatment course.  You may need a longer course.

Also, what test did they do? The Elisa ***** and unfortunatley you can't get the Western Blot unless you get a positive on the Elisa..(that is rare).
IGENEX Western Blot seems to be the gold standard in lyme testing as far as my research is concerned. Although it is not a perfect test either and it is not a diagnosis, just a tool toward it. You can get a test kit yourself and then either go to a llmd to get the blood drawn, or find an open minded naturopath.  (They are easy to find.) Also, there are naturopaths that specialize in lyme, so you may have to ask one naturopath to recommend another.  


I am in Canada, so I thought I would try the route of regular infectious disease doc't because we have free healthcare...anyways...by the time I paid the babysitter and the big parking ticket I got...it was a royal waste of time and money.  I felt the doc't had a script and a text book. ' You didn't see the bullseye and you don't have arthritis therefore you do not have lyme.' She would also not consider my positive western blot from IGENEX, because she contacted the to get infomation on their testing methods and they did not call her back.  I told her to use google to find out and what a is involved in a Western Blot....or maybe she should consult her infectious disease doc't 101 text book from the first year of med school.....sorry.....I digress.

I am crossing the border and paying out of pocket now. It's what has to be done. There are many many Canadians doing the same thing.  Every week there is an article in my local paper of that story.....the sad part is that because the diagnosis and treatment is happening states side, Public Health can't include it in the lyme statistics on this side of the border and therefore we still only have one lyme tick in Canada.  :)

  
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Avatar_f_tn
Wow, I thought things looked grim here in the states...sounds worse there...Don't know what I'll find with infectious disease but the rheumatologist and internal medicine Dr.s wouldn't even consider it or test for it even tho the int. med dr. is my best friend's spouse and my best friend was the first one to say that lymes was what she thought I had. Considering going to a veterinarian at this point!
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Avatar_f_tn
Sorry to collapse both your postings into one response here ... but:

Your question about getting adrenal supps over the counter:  no, I don't think so, and given the suppression of the immune system that all steroids cause, I would on general principles avoid them while my immune system is trying to defeat a bacterial infection.  I personally would be verrrry careful with immune suppressants ... I suspect from experience and hearing other people recount what they have been through that there can be a smoldering Lyme infection for a long time that the immune system can hold in check until one more little thing, like a different serious illness, or a major life upheaval, or whatever happens, and then the immune system collapses and can't any longer suppress the Lyme.  Like a juggler who can somehow keep 12 balls in the air, but that 13th one rips it.  Bacterial infection + immune-suppressing meds = usually not good.  The instance I mentioned has unusual circumstances.

ID docs and the rheumatologists are the original Lyme deniers, so don't be surprised if you get the same shove out the door.  I agree with Ness.  I think the reason they may treat based just on a diagnosis of 'fever' is that the politics of Lyme are such that docs can lose their licenses in some jurisdictions for 'overtreating' Lyme, so they may want to call it fever to cover themselves.  Let them have their little charade if it gets you some help.  They may however chicken out after not very long, and Lyme can take months and months of treatment, so I wouldn't necessarily count on that doc for long term treatment.  Be prepared with a Plan B if the doc cuts you off.

Funny you should mention vets:  they take Lyme very seriously.

Ness, if you could capture and kill that One Lyme Tick in Canada, you'd be a national hero!  Hurrah!!
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1554647_tn?1316830820
It is my mission. :)
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Avatar_f_tn
I did the little song and dance to get the name of an Ilad Dr. But the closest one is 5 states away so I don't see that working for me...If you have a positive response to the first few months of treatment, wouldn't they keep treating if you relapse after discontinuation of therapy? It doesn't make sense not to!
What is the reasoning behind revoking the license of a physician who treats Lyme? I'm not sure I understand. I've seen physicians who treat patients with over 10x the reccommended dosages of narcotics not get their licensure pulled even after years of doing this with hundreds of patients
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Avatar_f_tn
From what I've read, Texas is a hard place for LLMDs to practice, so they are sometimes hard to find, but can be hiding in plain sight.  If you search/google LLMD Texas, you will find lots of hits to read through for leads to a doc.  There isn't a list anyone can hand you, that I know of.

The whole Lyme controversy is very political, and some states don't have 'freedom of conscience' laws that allow docs to practice as they see fit.  Theoretically that makes sense, that you don't want quacks doing nutty things, but this principle has been applied to progressive Lyme docs too often.  

Selective enforcement happens, so the narco docs you mention sometimes get ignored, maybe because other docs can understand that intractable pain needs extra meds ... but when it comes to Lyme, it's all politicized, and the IDSA/CDC docs have their backs up and their territory staked out.  It makes no sense, but that's just the way it is.  Someday it will be different, but not this week or this year.  

Just go with it, find a doc you are comfy with, and do the best you can.  It's what we've all had to do.
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1554647_tn?1316830820
How far is five states away in driving/flying time for you.  The doc't I am going to see is two provinces and one border away.  She is really set up for out of town (and out of county) patients.  She sees you every 4 months with phone consults in between. (unless you are on IV) So maybe a LLMD you find will also be set up for long-distant patients. Did you try lymenet(dot)org?
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Avatar_f_tn
yes...that is where I got my Dr list. closest doc is about 1200 miles. I saved names in case of no other options but really hope to find relief closer.
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Avatar_f_tn
so is the objection to treatment soley based on the disagreement of use of long term antibiotics? I see long term antibiotic use (misuse) for the most inappropriate  complaints (coming from pt histories and med lists of ER patients). Why is lyme being targeted?
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Avatar_f_tn
it's not just long term use of abx that is part of the argument ... but that's the point that's easiest for the nonLLMDs to focus on.

Lyme is held hostage to the docs who first studied it a few decades ago.  Wormser and Steere are two of them, and they are still very powerful in the medical world.

About finding an LLMD, 1200 miles can't be the closest doc to you.  From Waco TX, 1200 miles gets you to California, Chicago, North Carolina, or Salt Lake City and all points in between.
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Avatar_m_tn
I enocurage you to go thorugh information on the ILADS website, Dr. Jones KIds,  CanLyme.com, and Turn the Corner Foundation.  If you haven't already, get with a Lyme literate doctor above all else.  At this point, I think  medicine- overall- has been overtaken by politics and lawyers, and doctors are now trained based upon the needs of systems as opposed to the needs of patients; its a willful stupidity .
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