I cried the whole way home from LLMD visit

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.

he also kept making comments about the pain meds I take...which I believe to be not that much, and should be on more....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.

Problem is finding a pain doc around here who isn't injection happy with steroids! I am lucky that my family doc prescribes what he does, but I know he won't go any higher, it's like the DEA is up everyone's butts around here, it's really sad. And I can't really talk to my regualr doc about going behind his back to a lyme doc right now, for fear of him dropping me, then I would have no meds at all.....

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 don't really want it to take every day, but there are days it would be a good thing to have on hand

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.

Pain medicine is almost as nonexistent as Lyme treatment. Mainstream docs don't treat pain. Docs who do treat pain are investigated, lose their licenses, etc. The rest are in it for the big money - injections, whether or not the patient really needs it. Docs who actually listen to the patient and treat their pain adequately just can't be found. I lost two pain docs because they got scared, and the one I have now works for someone who insists on injections. My doc believes that injections are not the best thing for all patients, and forcing it is unethical. So, he just informed me that he is going on his own because the practice he is in pushes the injections. So, you are right and it's so frustrating.

There may be other reasons for a couple of items on the list - I mean, some of the symptoms belong to so many different illnesses, I probably had a handful of them even before my bite. But YOU know your body the best and YOU know what is causing the symptoms. I don't tell any doc about the air hunger even though it causes me to hyperventilate sometimes. I know that they will say it is anxiety and docs love to blame everything on mental (behavioral) health. But I know the cause, after it just showed up after a cortisone injection last winter.

Putting myself in your position, I would be so frustrated because again, the expectation is the LLMD is a doc who finally listens and believes. I imagine that many LLMDs hate getting Lyme patients. It's hard to treat and it's dangerous for their practices. So, if he can give other explanations for your symptoms, he will. He may even think that you bringing him that list exhibits an anxiety disorder.

Hang in there because everything may work out just fine. My LLMD has never taken a medical history and has no idea about my illnesses (fibro, CNS, arthritis, degenerative spine) nor does he care. He is a naturopath first, LLMD second, and you would not believe the voodoo (that is all I will say publicly). If there were more LLMDs around, I would have left. But I have to deal with it because it is what is available right now.

The good thing is that he belongs to ILADS and has spoken about Lyme at conferences. He is knowledgeable, and he is totally convinced that I have Lyme, even though he didn't see my bullseye from the 90s. He had that checklist, and I could check almost everything, just like you. So, all docs have their positives and negatives and your doc may be completely different next time. At least he gave you abx - that's a great start. What lead you to believe he only treats for 6 months?

If I could recommend something...Cymbalta was magic for me, for treatment of anxiety, pain and depression. It's an antidepressant and I loved it until the day that I realized it was responsible for causing my horrible rash. Many antidepressants make me break out, but I didn't realize that this one was the culprit because I took it for 5 weeks before the rash started. If it's going to show up, it usually does before that point. SAMe even gives me a rash!!! I don't think Xanax is good long term - and I can tell you that it really messed with me (although i have a friend who loved it).

I know that you were hoping for someone different. So was I. We'll just muddle through for awhile, see what happens (and in my case, try to keep from going broke). At least there is support here. I would be such a mess without the support I get from you - and others - on this board.

Hugs!!!

Lori

Thank you for your reply.

I think I was emotionally charged...expected more...but looking back, things are probably fine and how it's normally handled. I guess I would have to wonder if I walked in to his office and he automatically said "yeah, you have lyme"

He's probably got to follow protocol and rule out other things as well...I'm certainly not "writting him off". He's got 15 years experience, and I'm sure he's a great doctor. We'll just take it step by step and see what happens.

I certainly don't want long term anything, be it pain meds or sedatives. My hope is that with the proper treatment, the need for such things will diminish. I've always been a "natural" kind of person. So when all these medical issues started arising 10 years ago, it was a hard pill to swallow (literally too...lol), that my "alternative" therapies weren't helping me.

I'm hoping that I can get my body going in the right direction and get on the right path here....and I think I am...of course I know things won't happen over night....not after 20 years of being infected....

We will both get through this Lori....one day, one step, one minute at times....

gentle hugs,

j

Putting you on an abx regime, even though it's a short time, is how I started. I was on 4,000 mg/day Amoxicillin for 1 month. I had to do the urine test (LUAT) too. The results came back negative. The reason for the abx & the test is to find out if bacteria is being killed off by the particular abx & are showing up in your urine. I freaked out when I heard it was negative; I started crying so badly & the LLMD explained everything. I thought the "diagnosis" for MS was correct instead of the Lyme I thought it was.

As for the blood tests to Igenex, another good thing! I had my blood work done through them before I went to the first appt with the LLMD; all he had to do was read the results. Those came back Equivocal (meaning possible). The LLMD didn't have to order that test, it was already done, but he would have had it done if I hadn't beaten him to it.

The other good thing is that you have a doc willing to give you at least something for the pain. I never found anything that worked to take the pain away. I was forced to use over the counter meds because my LLMD refused to prescribe pain meds. My new LLMD does; they're all different. Definitely, the DEA is watching everyone to keep tabs on who's prescribing what. A local doc here was nabbed by the DEA for prescribing narcotics & not keeping records for his prescriptions. He lost his license for 2 years; he's back in practice now, & you bet your bottom dollar he doesn't send a script out without a full medical check up & a good reason for prescribing anything narcotic.

Unfortunately, all you can do is wait this out. It's draining, but time will tell. This LLMD has your list of symptoms, knows what to do & in the long run you'll be better off for his diligence. Another blood test he'll probably want or need to run is for Lupus. That's another disease that looks very much like Lyme.

Keep your chin up, try not to worry too much, & find something to keep you from dwelling on this. Right now there isn't much you can do. You've done your homework, given him a list of symptoms, now you wait for tests. In the beginning it's a huge pain in the rear, but it will turn out ok. If not with this LLMD, then there will be someone else you can go to; maybe a further distance from you, but there is always someone else. He didn't blow you off; that's a huge start!!!!

Take care & like I said keep your chin up!!! Ruth

After that, I'm going out to L.A. to see a pain specialist. I've seen pain specialists here since the first year of symptoms. My GP even prescribed Vicodin for a little while. It's something no one doctor wants to do. Now the last one is going out on his own and says that he'll go broke doing medication management. He only wants to do injections now, and wants to cut me loose. So, got a referral to a clinic in L.A. and I'm flying there after Missouri.

Most doctors are clueless about pain management and they just won't treat it. They figure, why should they lose their licenses because of some patient? Our law enforcement is out of control with this. People all over are in needless pain. No one who is seeking medication for pain is an addict. An addict is simply someone who is looking for a high. All I've ever gotten from my pain medication is relief.

Finding a pain physician is harder than finding an LLMD. At least there's a list of LLMDs that is available to those who need it. The pain control underground is a bit more difficult to access.

Some states understand it better than others. California is probably the best but still, my friend in L.A. sat with her mother while she was dying. Her mother was in excruciating pain, but they would not give her more medication because they were afraid she might get too much. It was painfully obvious that what she was getting was not nearly enough. But they still would not increase it. And she died in this horrible pain.

Jaime, I thought you had a doctor for awhile. Is he no longer helping you? Or was that the injection guy? I hear that most LLMDs don't prescribe anything for pain, but pain control is necessary with this disease.

Post edited by: erleichda, at: 09/20/2007 13:38