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» LymeNet Flash » Questions and Discussion » Medical Questions » cried the whole way home from first LLMD visit

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Author Topic: cried the whole way home from first LLMD visit
jaime1978
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Well, went to my LLMD visit. I don't even know where to begin. I was pretty upset the whole way home. I am not sure I can put this into coherant sentances, so I am just going to ramble....

it's sounds as though most his patients are treated for 3-6 months....

I had given him the list of symptoms of which I circled nearly every single one of them....I really thought that by his looking at that, he'd say "wow, I'd say you probably have lyme"..... he kept trying to give each ones a different reason for having....ie...I have breast discharge and haven't nursed in over 3 years (he said pituitary can be involved in that....I know that, but I've had prolactin levels checked and they are normal), the air hunger, he said could be my anxiety.....

anyhow, he gave me a month of omnicef 300mg twice a day, I'm supposed to pee in a cup on day 3, 5 , and 7 to send to igenix. they also took blood for a western blot for igenix.

I'm just not sure about this guy. It's a starting point I guess.... he said of course to take probiotics in the healthfood store, but he doesn't market supps of all kinds....he doesn't believe in that , and thinks its just a way for some of these docs to make money.... but I do believe we need to build up our immune system. I am very much into "natural" things

he also kept making comments about the pain meds I take...which I believe to be not that much, he's worried about addiction, and at this point, that's my last worry. GET ME WELL FIRST, then I'll worry about that, let me live my life comfortable as possible, and enjoy my little precious kiddos as much as I can with this horrid disease...after having talked with some people who don't seem as sick as I am or have nearly all the symptoms I do and somehow get morphine, etc... so it makes me feel as though he's not all that compassionate, and God knows he wouldn't help to play around with those meds to make me comfortable. Not that I want morphine, that's not what I am saying.

But people who take pain meds are made to feel like criminals, the way I see it, if you need it, take it....nobody would think twice about telling someone not to take thier blood pressure medication

Problem is finding a pain doc around here who isn't injection happy with steroids!!!! and we all know how good that is.

He did say I would be a hard case to treat since I've had it for so long

Right now I am mentally exhausted. I really need to find a psychiatrist, I do think I need to be on xanax for my anxiety, and I hear it does help with the pain, but my doc is no fan of that long term....he's given me some here and there, but sparingly. I don't know which way is up anymore, where to turn or what to do.

I guess I'll take these abx, go next month, see what the test results are, and see what happens. It did sound as though he'd treat me even if it's negative, so that's good....but if he only goes for 6 months, that's bad.... he did say he does do IV and injections too....so maybe there's hope...maybe I'm just emotionally charged right now.

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Lymeindunkirk
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I sent you a PM. Forgot to say, have your doc check for adrenal fatigue. Stress like an infection in your body, affects the adrenal glands and totally screws up the hormones. I know from personal experience. good luck.
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sixgoofykids
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All the LLMD's have a different style, if this one doesn't fit what you think it will take to make you better, then I'd try another.

I've had this for 35 years and my doctor and he made me feel completely comfortable that he could make me well.

He's also BIG into supplements .... he's generally a holistic doc but thinks Lyme requires abx.

I do not take any injections or IV abx, and I AM getting better.

I go to NY for treatment.

I really think your LLMD should be someone you are confident can make you well.

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EtherealGirl
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Jaime, I'm sorry you're feeling blue. Like others have said, if this one doesn't work for you, try another. You'll get well, I'm sure of it!

Holly

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Aniek
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Jaime,

A few thoughts. It's possible 3-6 months is because most of his patients were infected very recently.

Stay with your convictions and don't stop pain meds. If he doesn't know them, he's not the best to prescribe them though. But he clearly doesn't understand addiction and pain meds. That is a red flag for me.

--------------------
"When there is pain, there are no words." - Toni Morrison

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Lymetoo
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quote:
Originally posted by jaime1978:

anyhow, he gave me a month of omnicef 300mg twice a day, I'm supposed to pee in a cup on day 3, 5 , and 7 to send to igenix.

If that's for the Lyme Dot test, there's no way it will show positive with that little bit of abx.

Oh well....I'm not a dr! I'm very glad he at least uses Igenex!!

It's ALWAYS a good idea to choose a dr AFTER finding at least 3 "happy satisfied customers."

As others have said, you can always switch drs.

The xanax is not a good idea long term, but I know how bad the anxiety can get....it could also get worse when you herx. Just keep it to a minimum.

Hang in there, kiddo! You're gonna make it!! [Smile]

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lymebytes
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Jaime,
Xanax is a life saver and my pharmacist told me how to get off of it very easily if you are on it long term.

Find a doctor who prescribes the Xanax and and pain meds - whatever you need to stay alive through this hell!

Hugs,
D

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www.truthaboutlymedisease.com

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Geneal
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My anxiety and panic attacks really lessened a great deal

Once I started treating Lyme and babesia.

I am sorry you had such a disappointing day.

Let this be just a starting place for you with the only way to go is up.

Hang in there.

Hugs,

Geneal

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pattilynn
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Jaime,

If the doctor you saw is the one we talked about, I've heard he is excellent. Most doctors fear prescribing narcotic pain meds. I don't take any but I can tell you my llmd would NOT prescribe them. He will treat lyme though. Maybe others can give examples here but chronic pain management is best left to the pain specialists. I would do what he says and see how your test results come back. I've heard nothing but good things about him.

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kelmo
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Don't worry about a doctor that doesn't carry supplements in his office. Our LLMD carries maybe two that he's comfortable with. He may expand to another. He never pushes them, but information is available in the exam room.

This doctor you saw is right, there are some doctors who bank on that stuff.

As long as he is not opposed to supplements, then you will be fine. Just make sure you let them know what you are taking. Introduce them one at a time so you can watch for reactions.

I've called mine and said, "I want to try this....what do you recommend". He'll do research and call me back with a brand he recommends.

I'm so glad you were able to see someone who at least will treat you. There is hope in treatment.

Don't worry about being on anxiety medication. My daughter is on a couple. She has a good psychiatrist that she has been seeing for a long time.

When my daughter was finally diagnosed with bartonella, her psychiatrist did research, and finds medications that fit with her LLMD's treatment plan.

You'll be fine, you are on the road.

Kelly

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luvs2ride
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Dear jaime

I'm sorry this appt you were so excited about was such a disappointment.

I think others are right to suggest you use this doctor for lyme and a psychiatrist of the anxiety meds.

I have just started a great alternative therapy for my joint pain that is working real well so far. It is safe, simple and cheap (as far as these things go).

I have a separate post about it, but you can go right to this website to read about the doctor who put it together and there is a list of practitioners too. My chiropractor uses it and he said I would know immediately whether or not it would work for me and it did.

http://www.frequencyspecific.com

I hope you can give it a try.

Luvs

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When the Power of Love overcomes the Love of Power, there will be Peace.

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merrygirl
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Jaime,

I am so sorry for the way you feel.

I too have a lot of pain and take pain meds. I do get nervous about addiction. I did post something to this efect today.

The way I look at it is they made Pain meds for pain. I have pain so I take them. I am sorry but I forget who said it but they made a great point on the post.

I think that as long as you know in t he back of your mind about how often and how much medicine you use, you will be able to recognize a problem. I can say I have had an rx or Xanax for years. I personally can go weeks without them or I will need them every day for a week.

I will be seeing an llmd for the first time in 3 weeks. I am anxious.

I am personally not into the whole herbs and homeopathic medicine thing. Not saying anything bad about it, but not the way I am. I think it is good he is not pushing pricey herbs in your face saying you must have these to be better... I couldn't afford it.

I think you are a good starting point. I am new to all of this so what do I know. I dont know how long you have been sick. I hope you get better. Melissa

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TerryK
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Is this doctor a member of ILADS? That is important since he will have the benefit of other LLMD's experience and ideas and it gives one a better idea of their thinking although as someone else said, they all have their own way of treating.

I believe many if not most of the LLMD's treat until symptoms are gone. Dr. B's guidelines say it's reasonable to treat until one is symptom free for 2 months. I think it is unusual to set a pre-determined treatment length. Plus, if you have co-infections, 6 months will not be enough. Setting a pre-determined treatment length is a big red flag.

Personally, I'd want someone who treats until I'm well. Setting a pre-determined treatment time is what got many people in trouble in the first place.

Terry

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kylasrain
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Jaime,

I am sorry to hear how upset you were after leaving the dr.'s. I have been there so many times. Looking back at some of those visits, I realize that most good dr.s have a protocol to treat in steps...first looks for other explanations, then run some tests, etc. Looking back, I realize that my dr. had done the right thing. Patience is key with this horrible disease. I have felt like I was going ou of my mind and I'm in a better position than most people here. Take it one visit at a time and remember, pain screws with your emotions too.

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]

Ky

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jaime1978
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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

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Tori
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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.

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CaliforniaLyme
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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

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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lou
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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.

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dlp252
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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.

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jaime1978
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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.

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sixgoofykids
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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?

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lou
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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.

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Lymetoo
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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.

--------------------
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Opinions, not medical advice!

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Nebula2005
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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.

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mrsdizzy
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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]

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!~

--------------------
"don't ever write anyone off, you'll never know who or what they will become"

Posts: 115 | From la la land | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
Tori
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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.

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djf2005
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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

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

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lucy96734
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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.

--------------------
Lucy

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Kayda
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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

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pattilynn
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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.

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mrsdizzy
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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!

--------------------
"don't ever write anyone off, you'll never know who or what they will become"

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Michelle M
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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

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