I told you my husband had lyme disease about 15 months ago, and the doctor put him on a 30 day course of antibiotics. Now, he has been on 800 mg of ibuprofen for 7 weeks,and if he doesn't take it, his back, neck and head absolutely kill him with pain. Wakes him up at night when the ibuprofen wears off. Also gets fevers and night sweats.
The first visit: 7 weeks ago--the doctor said he had a sinus infection.
The second visit: the doctor gave him neck, back and chest x-rays
The third visit: (today) the doctor gave him more blood tests and wants to start him on physical therapy because he might have "pulled something".
At today's third visit, my husband "reminded" the doctor that he had lyme disease 15 months ago, and told him that it felt like the same symptoms. The doctor said that he would not have this kind of pain, that you only get "joint pain" with lyme disease.
He said if nothing shows up on the blood work, he will be sending him to an arthritis specialist! Now, you don't have to tell me what a crock this is, I read all of the material, I know. Problem is, as much as I try to tell this to my husband, he does not have the nerve to say anything to the doctor. He has that good "old fashioned" sentiment of trusting the doctor, and has a hard time questioning him. He also pokes fun at me and calls me "Mrs. Web MD" because I keep telling him how wrong this is.
I have a list of lyme doctors in my area. Any suggestions as to what my next move might be???
Can you guys post some messages here, to convince my husband that he needs to stand up to the doctor? That lyme disease is not just "Joint Pain". And PLEASE tell him what his next step with his doctor should be....maybe he'll listen to you!
Just so you know, the blood tests that were ordered today are:
Complete Metabolic Panel, CBC w/diff, aNA w/Reflex Titer, Rheumatoid Factor, SED Rate by MOD West, TSH, UA Complete.
I don't se ELISA or Western Blot--I don't see anything that would test him for lyme disease, or anything related to lyme.
I am not an expert on this (yet) but if you see something in these tests that pops out at you, please let me know.
Thanks again for all of your help.
Teresa
In 1995 I got a very odd rash, like bug bites over the body. There were a lot of them , they grew in size and they did not itch. So thinking this was odd I went the Dr.
Answer, "I don't know what it is, if it goes away I'd forget about it" So I did.
A few months passed. Started to get joint Pains... no big deal just getting older, no need to bother a Dr with this non-sense.
More time goes by. Now ankle hurt so much can walk.... hell I can fix that with some good stiff, high ankle boots, just lace them uo real tight... no problem...
A few more months passed. Started to get severe Sweating episodes, loosing my hearing and still more noticable joint paint.. Now its time to go to the Dr.... "Sweating with overweight people is normal"... "Joint pain comes from putting too much strain on the joints"," hearing loss must be from too much noise"... "always becarefull of to lod a noise" (never mind that I work in an office with NO noise.
A few more months passed and now start to have problems with the knee and periodic vertigo. So off the to the Dr again... This time "some people have vertigo with nothing wrong wth them, I can give you some pills to help with that" and as far the knee thing goes, might be arthritis starting...
A few more months. Hearing declines more, things like a mild cold knocks me into bed for a week and relentless headcaches start. See Dr for followup. Nothing wrong.
More time goes by, this time all the other stuff is still there but now can't feel anyting on the left side of the body.. To the Dr again. Now things are looking a bit more serious, suspect a brain tumour, get an MRI with no result. Now Dr says sorry I can;t help any more... good luck.
More time goes by... Now need a cane to walk, have slurred speach, cannot drive, can only see semi normally out of one eye, have lost 80 db hearing, have gained 40 lbs, have constant muscle pain, can't think (hard to explain but you can read written pages but can't understand them,) can't lift anything more than about 10 lbs due to extreme weakness and pain.... Go to a new Dr that I was reffered to, Waited 3 months to see this guy.
"well from your tests I can't see anythig wrong with you, I would suggest swimming exercises"
More time goes on and I decline ever further, so I find the teacher of the last guy I went to see.
After a ton of tests he " I know there is something wrong with you, but I dont know what it is... it looks like some degerative brain disease", (never mond the jont swelling and muscle problems). "I have some associates that I would like you to see...."
To the next Dr. more test .... I get a phone call, Your CJD (mad cow)test came back positive. What do you want to do? ****....
Two weeks later see a CJD specialist. No you don't have mad cow. "I don't know what you have. I can recommend some pills for the symptoms."
Another Dr. this time a MS Dr....
No you don't have MS, I don't know what you have. Good luck.
More time passes. Now thing are getting very very bad. I mean really bad. No one to goto as All the Dr'd either say I don;t have anything or (the better ones) say they don't know what it is.
So I start to experiment with various Drugs. Steriods, antibiotics, anti siezure. Finally identify a trend and track it down to an infection, ultimatekly leading to Lyme.
Total time from first symtom to diagnosis 7 YEARS and over 15 Dr's.
The real piss off is that ALL of the imaging tests as well as the joint problems AND the rash wher striongly indcative of Lyme disease. NOBODY PICKED IT UP BECAUSE THE TEXT BOOKS ARE A FEW YEARS OLD. **** again.....
Now what did I learn from all this....
Dr's are not scientists and do not read up on all of the current research. It is not there job, they have to focus on serving the masses, not some new, poorly understood disease.
Dr's are very good at identifying things they have seen before but for something new forget it, they do not know what to do.
Dr's are used to seeing lots of people all day and sometines all night who have nothing wrong with them, or at least the problem these people have is so minor they should just stay home. I am very sure it sometimes is hard to tell who is really sick from those that are not.
If you want to be treated for a particular disease in the best way possible, find a DR. who treats many people with the same disease, othrrwise you will end up with a cook book treatment. Sometimes is works sometimes it does not. In fact the rate of re-occurance are quite often published with the treatment cookbook.
If you are unfortunate enough to have a reoccurance then defintely find a Dr that treats many people with the same disease. If not you are betting your qulity of life on a book that it likely outdated.
Dr's are generally pretty smart but some have a real bad ego problem (this seem to decay with age). This can get in the way of a proper diagnosis, and if you encounter one of these guys NEVER, EVER EVER TELL HIM WHAT YOU THINK YOU HAVE. If you do, it will be ruled out immediately.
What I learned about other things...
If you have a persistent and verifyable problem, FIND THE CAUSE. Don't tough it out, Don't mask it with drugs, get and answer somehow, especially if it is getting worse over time.
Don't place you trust completely with a Dr. "TRUST BUT VERIFY". If he a reasonable person you can ask questions and he will answer them to the best of his ability. If he is a jerk he will get mad.... this happens in all the professions from fixing cars to plumbing... Enough said.
Finally if you have already been treated for Lyme and are now having weird symtoms with pain that does not go away. YOU MAY BE ONE OF THE UNFORTUNATE ONES WHO HAVE RELAPSED.
This is known to occur and in fact is very well documented. Remember, if a Horse gets Lyme disease the horse gets 2 year to a lifetime of antibiotics. If a dog gets it he gets a minimum of 6 months and more if the symptoms do not totally go away.
Monkeys... I don't know.
People... 30 days
Why is there such a difference when they routinely use animals to study drugs and human diseases... Something is not quite right here.
[This message has been edited by david1097 (edited 25 January 2005).]
He can follow up with his doc's suggestions and tests (always good, you never know, could be something else!) and tell his doc that he is also going to "check in with another specialist to follow up on the Lyme just to be complete." or even "check in with another specialist to follow up on the Lyme just to *appease my wife*"
This way your husband can continue to feel compliant and respectful and also rule out other possibilities while at the same time checking on the Lyme with someone YOU trust and would help him if it is the stupid Lyme again. Also, perhaps his doc will "tolerate" the LLMD stuff since your husband is following his suggestions and/or "blaming" the LLMD consult on you. I don't know if this will cause marital dischord, but if you just want to get him to the LLMD, it might be worth a shot...
Might he go for either of those suggestions?
Good luck with your negotiations!
What would happen if you made an appointment with LLMD and 'then' tell hubby he is going to see somebody who will actually fix him, maybe!!! IF he hasnt run out of time. The LLMD should convince him that he needs what he needs to get well. Sounds like hubby believes docs so believing the right LLMD should come easy. If nothing else call him a specalist to him for headache, back, neck and shoulder pain.
Just wondering, "IF" he can read set him down and let him read the list of symptoms first then find some threads who have same in commons. If nothing else print them out and let him read it right with the newspaper. I would think "HE" should be greatly interested in getting his life back the way it used to be. Or is he a rock. If he is intelligent, even slightly educated, preferably highly educated, curious as to cause, he should be here instead of you. Calling you out man. Lets here it from Mr. Wild Thing??????? If "I" can punch these keys, he can too. (I punch them one at a time)(one finger, slowpoke)cuz I B --just don--(smile)
Can anyone send her a paper about Lyme pain?
Take him to the LLMD but I wouldn't tell the duck. They have egos that are as big as all outdoors.
b
If he is has Aetna, and needs a referral, I guess his doctor needs to issue one? Is that how it works, or does everyone just pay out of their pocket? What about tests like ELISA and Western Blot--I get the feeling that Aetna won't pay for these either?
Patticake-You and I think alike!
David-I feel like he is going to end up going thru what you did..it's already starting...can't find anything...etc. I do hope you are feeling better, such sad stories here.
Duramater-I like the "blame the wife" approach, because believe me, I'm ready to call him right now!
JustDon-You are funny! Wild Thing is short for my website: www.wildthingstodo.com When MR.WILDTHING'S mood improves, I has to read your reply.
Thanks to you all
Teresa
quote:
Originally posted by david1097:
Remember, if a Horse gets Lyme disease the horse gets 2 year to a lifetime of antibiotics. If a dog gets it he get monimum of 6 months and more if the symtoms do not totally go away.Monkeys... I don't know.
People... 30 days
My LLMD said [and I'm sure there was a study done on this] that the pain from Lyme is worse than post-operative pain. And I'm here to tell you that was true for me.
I've had several surgeries and my Lyme pain at its worst was impossible to bear. Lyme can cause severe muscle pain, something this duck seems to not understand!
I have Aetna [a PPO] and a referral was not necessary. Most people pay out of pocket, but Aetna covers 80% of my LLMD's fees. Thank goodness!
Please print this out and hand it to your husband if he won't come here to read these. We want him to get after this NOW so he doesn't suffer needlessly the rest of his life!
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oops!
Lymetutu
I echo was everyone else has said, I hope he finds a LLMD soon.
Good luck to you both.
Good to know you got some help from the folks here. They are soooooooo great.
I can help lead your hubby to the watering hole.. but I can't make him drink.
I CAN however.. dunk his fat head under the water and hold it there till he agrees to get help.
OK.. no I can't really... but I would rather do that than be at his grave side praying for him after the fact. Not saying the Lyme will kill HIM too.. but I have lost over 10 personal friends and family memebrs to this disease.. and that is MORE than enough.
This stuff can be VERY serious. It isn't anything to mess with. If he suspected cancer.. would he be the horse's rear end he is being now?
I KNOW you are frustrated and you also care deeply about him or you wouldn't be so frustrated. Heck.. I am frustrated hearing what is going on.. and I care... and I want him to have help.. and I don't even know him.
Ya know.. if all else fails...
Perhaps if you use the "oldest trick in the book" on him.. it might work??
He DOES know Lyme has been found in the semen, blood, urine, tears, the cervix, breast milk, etc? It is the "cousin" to syphlis... and many LLMD's are now having to treat spouses of original patients who had Lyme disease because it is being passed back and forth.
To protect YOU...
Perhaps consider taking a STAND.. with your hands clasped tightly to your belt and zipper.. with a, "you ain't getting none tonight" look on your face..
Well.. that may MAY be the tool you need to make your point?? I've heard it sometimes works when all else fails? 
Ok..
For the facts..
The duck your hubby is seeing...
He ordered..
"Complete Metabolic Panel, CBC w/diff, aNA w/Reflex Titer, Rheumatoid Factor, SED Rate by MOD West, TSH, UA Complete."
Well.. it's called "fishing".
He now wants to find anything he can to discount the possibility of Lyme.. and the duck will keep running him around until all tests ever devised will be done on him.
It happens all the time to folks here.
And it is a HUGE waste of precious time.. the infection is spreading as time goes by.
And it is a HUGE waste of money... eventually the insurance company will suddenly stop paying and your benefits will stop... and you wil be stuck with the bills.
If he gets worse.. he may end up like many of us here who had jobs and can no longer work. Many folks have lost everything due to the disease "side effects". Don't let him "play" with your future.
And it will be intrusion after intrusion of tests that will become more costly, more dangerous, more painful, and more invasive as time goes by.
And when all is said and done.. you all will end up with him worse.. and no money.. and worst of all...
NO ANSWERS!
It is VERY common to see this happen.
Your husband will end up.. if he is lucky... being diagnosed with A.B.L.S....
Anything But Lyme Syndrome.
Oh.. and Shelley hit the nail on the head...
Babesiosis.
It is BIG time in PA... and if he has it... it will become much worse as time goes by. It is very difficult to get rid of.. and the earlier the treatment .. the better.
I don't know all of his symptoms.. but some point to that.. and I am sure Shelley saw it immediately also.
As for the blood tests ordered..
Complete Metabolic Panel, CBC w/diff, aNA w/Reflex Titer, Rheumatoid Factor, SED Rate by MOD West, TSH, UA Complete.
The duck is checking for thyroid problems.. arthritis... lupus... and other conditions that can make you tired and hurt.
You are right.. there are no Lyme tests ordered.
I would totally skip having this done.. and get to a LLMD for an evaluation.
These LLMD's ARE doctors, regular ones (but more special)... so if it isn't Lyme.. or babesiosis.. etc..
THEN they can check other things and help spend your insurance companies money just as nicely as that duck wants to.
Now.. if he would like someone to talk to.. or would like to holler at me for the nasty things I said..
Let me know.
I can speak with him.. or email him directly... which ever he prefers.
I DO want to help.. and I DO care.. and I DO know more than that duck about Lyme disease.
And I am free! I have NO monetary gains from doing what I do... unlike some folks in the medical profession.
And certainly I have more things to do in my spare time than sit here trying to convince him to get better help ASAP.. but I do this because I can't stand to see ONE more person go through what thousands of others have had to endure.
Have you seen our alligator pit?
I will try to find the link and post it for you.
This will give you an idea of some of the other DUCK mistakes that we see EVERY day here.
Anyhow.. my fingers are worn down now from typing. Both of them!
If you have any questions.. please let us know. We will do all we can to help you and hubby. We care.
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If you get the choice to sit it out or dance...
Lymelady
I use to come home totally wore out and my hands would cramp also legs at night.
Year 1992,93 94 95 96 97 98,99,2000.2001 I now get pain all the time tick bitten every year never had a bullseye rash never.
Deffinately worried about lyme I get terrible joint pain go to bed feeling fine or at least just acheing and wake up in severe pain in wrist or knee, foot, shoulders, pick a joint!!
Now I can hardly do my job marking timber cant catch my breath feels like lungs are half full of water I know its lyme! What can I do Iam desperate this craps gona kill me I hurt so bad.
Should inject here I was bitten every year since I worked here some imbedded others just attached no bullseye ever.
Heres the Irony I was tested every year for lyme disease by four different hospitals every test came back negative.
Thank God I knew of another guy that worked in another district that had lyme and got treated. I called his office and they said he wasnt there I said I would call back later.
Well I stepped out of my office and looked up the hall yep thats right there he stood I walked up to him and said hows your lyme he said Iam all better thats great I said.
Where did you get treatment and he gave me the Drs name Dr J in hermitage Well to cut it short I sure feel alot better now!! Its been a long road and I may not be done 3.5 freekin years of abx's and my wife also I believe got it from me and was treated the last year I got treated.
Point is this crap wont go away on its own it just keeps coming year after year GET your Butt to A LLMD Now tough guy!
I later came to find out I had 3 strains and some coinfections and my immune systen just couldnt keep up. The Dr my LLMD said when were you bitten why didnt you get tested before? I blew him away I said I had been tested every year! He just dropped his head and shook it.
I know I would either be dead or at the very least crippled if I hadnt found him.
Please dont waite any longer .GET A LLMD
[This message has been edited by treepatrol (edited 26 January 2005).]
You said " I have a list, what should my next step be?"
Honestly? Start calling doctors on that list.
YOu're not gonna be able to convince your husbands GP Of lyme. He wont listen.
1.) NO one can tell him there isnt lyme in PA.. or how did he get it 15 months ago?
2.) PA is I believe still the third ranking state for lyme disease.
3.) My Pennsylavnia resident butt was told by my X Pennsylvania family doctor that
"Oh stop it, you can't have lyme disease, if you did, you would be lying on the floor unable to move in joint pain"
4.) I had all the SAME symptoms as your husband. It took me nine months to get diagnosed.. with lyme. It still sounds like he may have babesia.
The longer one hesitates, the more the lyme disseminates. 
If you like your PCP, continue with him, but at a low pace.
He's a good resource for general medical intervention. Don't burn any bridges.
Then go see an LLMD. Just don't tell your PCP cause he just might have a fit and drop you (that happened to me.)
Some of the excellent NY LLMDs might be within your reach (depending on where you're located in PA.)
"Real" "true" physiological back pain, e.g. due to bulging disk or pinched nerve, typically lasts for 2-4 weeks.
And in combination with fevers and nightsweats, I'd strongly suspect Lyme.
Lyme induced pains, on the other hand, either come and go at any frequency, or may persist continously for months.
Michael
I was the "Mr" in our similiar situation here. Finally my wife told me that she had scheduled the appointment and that I should go "for her" - regardless of what I really believe. The appointment and tests were about $400 total (we haven't tried submitting the bills to insurance yet).
Turns out I do have Lyme. Well, it's four weeks later, and I am feeling much better although this is clearly a longer road than I imagined. I coach youth sports (well used to) and the pain, fatigue, and headaches are incredibly frustrating.
If he is like me, NOTHING that anyone says on here will make any difference. Just ask him, "Are you getting better with your current treatment? and "Will you do this for me?"
Worked on me...
We've ALL gotten the run around to different specialist for the same tests he's getting.
I've had 4 spinal taps in 2 yrs. I WILL not and DON"T have to do that ANYMORE!!!!!!!
TinCup is right it is a waste of time and the ins. company WILL stop paying.
We see it everyday here. Just go up to the search button and type whatever you need to know..
You will see that we've all been through or are going through the same things.
That's what makes this site so special to me...I have a place to go in my darkest of hour and will find
loving and caring people here, who JUST want to HELP
Ya'll are in my prayers, jamie
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