![[Smile]](smile.gif)
I don't take any pain meds although I want them...the reason is this: I won't know what is working and what is not without the pain as an indicator. Many doctors are of this opinion, so it might not be just the addiction angle.
Keep us posted and hang in there
![[group hug]](graemlins/grouphug.gif)
Ky
Posted by jaime1978 (Member # 11786) on :
thank you all for your replies. My biggest concern is that he's not treating for co infections right away. I don't know if maybe he's waiting for a pos. western blot or what.
I thought I have heard that you need to treat co infections first, or the lyme will never go away.
I am not sure about the whole pee in a cup thing either.... I hear nobody even does that anymore...that's going to cost me nearly 200 bucks, and if it's unreliable, with that little of abx, why bother?
I just didn't like the way he was trying to write off my symptoms as something esle...(nipple discharge as pituitary, air hunger as anxiety.....)
I know my air hunger IS NOT my anxiety. and no doc I have seen has a friggin answer for the nipple discharge, .....
I just thought he would have looked at the list I had printed out....I had nearly EVERY SINGLE THING CIRCLED on there. I have or have had almost ALL the symptoms of lyme and coinfections....and been like "wow, I'm guessing you are probably right on with this one"
I guess I will just stick it out, wait for the WB to come back...pray it's pos. so I don't have to keep screwing around.
thanks again for all your support.
j
Posted by Tori (Member # 11647) on :
Jaime,
Chronic pain can contribute to many, many symptoms. What pain meds are you on? Some in high doese can cause respiratory depression which can cause "air hunger". Even if the dose isn't high you may react this way.
You are right, your pain needs to be treated. Your LLMD needs education regarding true opiod addiction in chronic pain patients. There is almost always a physiological addiction to opiods but that can easily be overcome when the cause of your pain is eliminated. You need to be titrated down on pain meds but only when the CAUSE is under control.
Xanax long term is definitely NOT a good idea especially when it comes to physical, psychological addiction and cognition. An antidepressant that is used to treat anxiety is a better solution. If you absolutely need it, you can take a PRN (as needed) dose of Xanax 1-2 times a day. Cymbalta is a newer antidepressant that has been proven to treat pain somewhat effectively.
No matter what course you want to take with psych meds, you should only rely on a psychiatrist to prescribe them , not a general practitioner.
Good luck.
Posted by CaliforniaLyme (Member # 7136) on :
Jaime, they have persecuted and prosecuted a couple of Lyme docs by going after them for "over-prescribing" pain meds- case in note Dr. S who had a patient o.d. on pain meds!!!
So that may be why too!!!!!!!!!
Ditto on the Babs-tx lessening emotional upheavals for me as well-
HUGS to you, kiddo-
Take care-
Sarah
Posted by lou (Member # 81) on :
Give the doc a chance. You are in this for the long haul, provided you can get anyone to treat you, and that ain't easy. So, consider the political context and how that might influence a doc's procedures. I don't see much wrong so far. Think your hopes and expectations might have been a tad high for the first appt. If you have been sick a long time, it isn't going to be resolved over night.
And if you really want a doc who uses a lot of alternative type stuff, maybe this one is not right for you. I personally don't believe in all these alt meds, so I would avoid any doc that used them extensively. They have no track record, unlike antibiotics which are currently the main thing we have to counter bacterial infections. Not saying supplements aren't useful. You definitely need to take probiotics, magnesium, etc.
Posted by dlp252 (Member # 10711) on :
I don't know, I may be in the minority, but I liked that my doctor was also checking for other things. Fortunately for me I had had a lot of testing prior to seeing him so was able to provide him with all of my labs...nothing had to be repeated.
He checked my thyroid antibodies which no one had ever checked before. He checked my vitamin/mineral levels, mold exposure, and of course for lyme.
Turns out in addition to lyme I have mold toxicity and lots of imbalances in vitamins/minerals and elements.
I think in order to get well, he has to have the whole picture. I started seeing him in April, and haven't started antibiotics yet, but in my case I've had a really bad history with antibiotics, and I'm not as sick as a lot of people I read about, so he is being very cautious.
We also have not checked for co-infections yet and I think that's because we haven't reached the agressive treatment stage yet. He is really working to strengthen my immune system and ability to detox anything we kill off in treatment.
I'm comfortable with all of this, and if I weren't I'd try to find an LLMD who was more agressive...so basically, I do agree with what most are saying...you have to be very comfortable with your doctor and your treatment.
Posted by jaime1978 (Member # 11786) on :
No I don't want xanax as an every day type of med. I have never been a big "pill" "medication" person. More of the natural sort of gal. When I first was dx with the fibro and MCTD and had to start taking all these meds, it was very hard to over come. I am extreamly carefull, my regular doc loves me, as I am not one to keep going "up and up" on pain meds. I even ask him to lower them for a while so I don't have to keep going up and up.
I have tried cymbalta with very high hopes, it was a nightmare for me. I am going to ask my regular doc about neurotonin or lyrica today, as I have a tremendous amount of nerve pain. the xanax I want only to take on really bad anxiety days (as I am sure many of you know that the lyme causes part of that, and some days can be a living hell)
my problem with this doc was not the pain meds....when I got his initial info the paperwork stated that he does not presribe narcotics or depressants and such, so I wasn't going there looking for that at all, my doctor takes care of all that part of the deal.
My problem as far as that went was his saying about being on narcotics for more than three months that I am surely addicted. At this point I don't care if I am, I am sure my body is psychcially addicted, but there is also mental addiction, and if it gets to that point I will worry about that then. RIght NOW my main concern is getting WELL. I have already missed a large portion of the first 5 years of my kids lives. I'd like to be an active part of the rest of thier lives. They are my world.
I assumed (wrongly) that going in there with my list of nearly 60 symptoms, that it would be a no brainer. Not that he'd sit there and try to say my nipple discharge could be pituitary related (I've had all that checked, 3 different docs, no answers, only answer left is lyme), that my air hunger is anxiety.... I do get a bit of air hunger with anxiety, but those of you with air hunger know that it doesn't just happen with anxiety....etc.
I figured he'd at least test for co infections, seeing as I am the one paying for the tests for igenix. I am under the understanding that if you don't treat co infections first that the lyme will never go away.
I guess I will try what he's doing for a few months and go from there. Wait and see what the igenix tests come back as....and the pee test with the abx, waste of $200 if the abx aren't strong enough to bring what ever out that is supposed to be coming out...
I'm very close to taking matters into my own hands. Just read a post about vet meds. Do that with herbal stuff, etc.... the medical world just frustrates me.
Posted by sixgoofykids (Member # 11141) on :
Lyme is a very complicated illness with all the side issues it can have.
I have babesia, a minor heavy metal problem, bacterial overgrowth in my intestines, etc. All this has to be treated or I will not get better.
You have to have a good LLMD to help you through this. Don't write off all LLMD's because you had a clash with one.
Mine is the FIRST doctor in my life who has validated that I'm sick, that I need treatment. He's very comprehensive in his treatment, and I like that.
I am happy to buy the supplements from my doctor ... first of all, I was taking a lot of them to begin with. Secondly, I know what every one of them is for and I agree with his suggestions. Thirdy, I want him to have the finances next time he has to defend his Medical license to treat me!!!!
Is your doctor an ILADS doc?
Posted by lou (Member # 81) on :
If you take matters into your own hands, do not do this without telling your doc. It is not fair for him to have patients secretly self-treating because the results are going to be blamed on him. And some docs do not want the responsibility of this....you may be put into the non-compliant patient status.
Patients with a chronic disease who do not develop coping skills and patience tend to do worse.
Wondering if the anxiety that can be part of lyme psych problems is what is going on with you, in addition to frustration over the failures of the medical establishment in general to handle lyme.
If you are unhappy about the cost of the test he did order, why would you be upset that he didn't order a lot of coinfection testing? That will also cost $$$, and might not even be definitive. Look back over older posts on the subject of coinfections and you will see that people test negative even when they have them sometimes. There aren't enough tests for all the types you could have.
Posted by Lymetoo (Member # 743) on :
Coinfections should not be treated until the Lyme bacterial load is down a bit. As long as babs is treated in the first few months, you'll be fine.
Think of this:
The dr SHOULD be covering all bases when looking at other possibilities for your symptoms.
You could also be a "plant"... He may just be protecting himself in that way also.
Posted by Nebula2005 (Member # 8244) on :
Dear Jaime
I hear you. The first doctor I went to for Lyme treatment put me on vitamins for two months, stalled doing a Lyme test, was irritated with my symptoms and then told me I didn't have Lyme. I cried all the way home from my fifth appointment with him, until I was too mad to cry.
I have a lot of nerve pain, too. I can get relief from a very small amount of hyrocodone or butalbital, yet the last doctor I saw (a real jerk) wanted me to take two kinds of antidepressants instead of prescribing a pain medication.
I use pain medication for pain, not for fun. I've never built up a tolerance.
The studies on pain and Cymbalta were done on diabetic nerve pain. They were flawed: they were financed by the manufacturer and some of the doctors were shown to have conflicts of interest.
Cymbalta has terrible side effects. Xanax does, too. If they help people, that's good. but I know what helps me. Knowing this makes me suspicious to doctors as an abuser. I hate being treated that way!!!
I've been disappointed by every doctor I've seen trying to get help. Like you, I am very tempted to treat myself by myself. If it weren't for the pain, and the unbearable herxing, I would have done that long ago. (Even herbs make my symptoms worse).
All I can say is--you have to start somewhere. You fell into this the same way I did--you already know too much.
Probably the Omnicef won't set you back. I know how frustrated you are. I think what you plan to do makes sense. Follow what he has you doing until you think it's time to find someone else.
It shouldn't have to be this hard. I've been sick with this for many years. My kids grew up with me and my health problems. My son was only three when I started getting sick. I don't think they were hurt by it, but it could have been a lot easier had I not had periodic health crashes.
You've figured out what's wrong with you, and much sooner than I did.
Sending you hugs.
Posted by mrsdizzy (Member # 11690) on :
Jaime1978,
I understand your frustration. You're sick and the last thing you want to hear is comments about pain meds. I totally understand this, and it would have ticked me off too. That is the last thing on my mind when you're in excrutiating pain.
I think patience is the key. It's a rough road, one day at a time.
The good thing is you can always switch LLMD's, I know I did. I would first give it another shot, don't let it get you down, you have enough to worry about
![[Razz]](tongue.gif)
I admire you for taking such great care of your children, they need you more than anything. You're a beautiful person in this situation for a reason.
Hang in there girl!~
Posted by Tori (Member # 11647) on :
Jaime- I completely understand your frustration. You sound like you are adequately educated about Lyme and know what you want to see happen. It does sound like the LLMD is covering all the bases.
Almost every doc has a different opinion when it comes to pain. As long as he leaves your pain meds alone, I wouldn't worry about it. Tell him that you need the pain meds to function right now just as much as you need the abx. When the abx start to work, you will need less pain meds.
(Beware- I just found out at work from the Head Pharmacist that the efficacy of some abx can be altered by some opiods like Methadone)
I have nipple discharge, too. My pituitary was checked also. If it is Lyme related, you are on the right track in clearing it up and it should get better with treatment...
I know you are excited to get better and quickly but this is what good doctors do. They gather as much data as they can and proceed with the right treatment.
Neurontin worked well for me for neuralgia but beware-hydrocodone can increase serum levels and increase any side effects from the Neurontin. Usually, this is only bothersome until you find the right dose. I was at 1200mg/day when I started taking only 1-2 hydrocodone w/APAP 5/500 a day. I starting having gait, cognitive and vision problems. I, not the doctors, figured out it was the Neurontin + Hydrocodone combo causing it. (The interaction details are in the Pfizer drug info). Now, I only need 600mg/day of Neurontin.
Good luck....keep your head up. It sounds like help is near.
Posted by djf2005 (Member # 11449) on :
jaime-
sorry to hear your suffering.
i can relate w the pain.
i actually have been off percoset for a few months and just got some more because the pain is too great
addiction does suck, and i do think i had withdraw, BUT i also agree that it is no fun to be in so much suffering
once i feel better, than i will worry about that
at my peak, i was taking about 5 percs a day (5mg)
i think i am going to allow myself one a day, or maybe just at bed, whenever i start again
i am leary to take them, but so much pain is just not right.
hang in there, praying for relief of your pain
Posted by lucy96734 (Member # 8372) on :
I would give it another try but not rule out finding a LLMD that you trust and feel good about.
As far as pain medications go... My LLMD doesn't prescribe them but isn't against going to another MD for them. He will only prescribe abx, etc for Lyme and co-infections because he doesn't want any reason for further scrutiny.
I went to a wonderful pain management MD at a center that only treated pain. They helped me survive my 5 year quest to find out what was causing the pain. They had many safe-guards and requirements but listened and treated the pain to help people live their life as comfortably as possible.
I was on fairly heavy narcotics (percocet, vicodin, and actiq (fentanyl) along with elavil, NSAIDs, topomax, and muscle relaxers.
I took them daily, on schedule for about 5 years and I was able to easily wean off them when I started Lyme treatment and the pain left.
When I was in pain I did need them. When the pain slowly went away I slowly started taking fewer and now I don't take any medication other than abx.
Use care but do not feel guilty about needing to treat your pain.
Posted by Kayda (Member # 10565) on :
Hi,
It may be because he was threatened by the state Medical Review Board. If he got a letter or phone call, he may have gotten scared and is trying to attribute all these symptoms to something other than Lyme.
LLMDs risk their licenses every day.
Kayda
Posted by pattilynn (Member # 8065) on :
Jaime,
My llmd did exactly what yours did...ordered the WB and the urine test. He put me on Spectrocef and I collected the urine and sent it in. It was negative. He did not order co-infection testing. Which, by the way I have heard is very expensive and not all that reliable.
I too have the nipple discharge and it has stumped every doctor I have seen, even my llmd. My prolactin level was also normal.
I would just try to put aside what he said about the pain meds and just try his treatment. I have severe, chronic pain but I do not take any pain meds.
I think people who do take pain meds are always looked at under a microscope by doctors, pharmacists etc...I think the person taking the meds takes high offense to any comments regarding their medication.
I really don't think he did anything wrong regarding lyme. I think lyme testing should be first and foremost and then look into co-infections.
I could be wrong but I think possibly he angered and offended you with his statements, comments about being addicted which probably ruined the whole appt. for you.
Posted by mrsdizzy (Member # 11690) on :
I know for me, I would have felt the same way, it's not easy especially when I work 60 hrs a week (except I'm out now on leave). Sometimes we have to do what we have to do!
I wouldn't worry about the pain meds, who cares what he said about them. I get the same reaction with my weight (which I'm changing).
Hope you're ok Jaime!
Posted by Michelle M (Member # 7200) on :
This isn't that far off base.
My LLMD told me optimistically, "6 months" -- as a guess. To instill hope, I'm sure. Which I was definitely in need of.
And here I still am, over two years later!
Now, the six-month projection didn't mean he would dump me if I wasn't better in six months.
If I'd been better in six months, yippee for me!
If NOT, then stop and re-assess.
I agree about lowering bacterial loads before treating co-infections. I was positive for babesia WA-1. Beginning treatment for that about knocked my socks off. I cringe to think of the pain if I'd done it concurrently with a lyme-swollen brain early on. OWWWW.
Just as lyme mimics many diseases, the reverse is true also. You don't really want to be treated for lyme if you don't have it.
My doc does not push supplements either, though encouraged me to use Theralac after rave reviews from other LLMD's at the annual conference. He sells it at cost.
Keep faith. Things will get better.
Michelle