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Went to see the Lyme Dr yesterday...was not very impressed

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Posted 7/7/2009 12:52 PM (GMT 0)
I'm sorry I was just expecting a little more for this doctor. He was running an hour behind, that was something I did not like from the start. Anyway when he did get in with me, he glanced at the first few pages of my labs that I brought with me from my positive testing from my primary. He asked me if I felt better, I said not really then he goes on to say he wasn't to give me a PICC line and try anti-biotic's for the next 30 days thru IV. My question is this...how does he know that I still have Lyme? How does he know its not my regular fibro symptoms rearing their ugly heads?

 

I'm not thrilled at the idea of the PICC line, if I need it then I will do it, that is not the issue, the issue for me right now is, how do you know I need it. Plus I did hear him mention that he isn't a big Fibro person and feels way too many things are under the Fibro belt.

 

I'm thinking of waiting to see the new Fibro doctor on the 16th. (He actually has fibro himself).

 

Any sugguestions?

Posted 7/7/2009 3:02 PM (GMT 0)
Hi JIJ Maybe I came across differently than I meant to. I am grateful that I have insurance that allows me to have the doctors that I have, why my gripe is, I’ve been on so much medicine for the last 5 years really longer but heavy duty stuff last 5, that will this round of IV anti-biotic’s do anything for me. With My symptoms being the ones that occur in both Fibro and Lymes how does he know putting me on such a strong dose of IV won’t do more harm than good? He already gave me something to take for my gallbladder and something for my liver to help them out during the IV period. Honestly, if I could take a round of anti-biotics and be rid of all the pain from my neck, back, headache, stiff joints in knees, elbows and fingers…I would do it. On the other hand, I just think that he should of at least ran more blood tests for see if the anti biotic that my primary doctor gave me did anything. He only asked me if I felt better and I can say no I really don’t feel better. I’m no doctor and I could be way off, it just seems to me that he would be more fact finding before he gives me a PICC line
Posted 7/7/2009 3:41 PM (GMT 0)
Hopegirl, and meds they give you and you dont want em, send em to me. as i am in Tx and the flipping Drs here do not belive in lyme "there is no lyme in Tx" is there fav saying.

i sit here every day rotting away from a disease i didnt ask for, and then to add to it the Drs responces and there I DONT CARE adatuds blows my mind. if you have 100 test (WB) each one can show up differently.

its not that i'm not happy your getting treatment, i wish you well and everyone else well too. but at times when i'm down the most. and see a post about Drs who want to help and someone who doesnt want that help. its like pass it to me please.. it may be the only way i can get help.

in the end its your choise if you take what the Dr offers. 30 days isnt much in the grand skeim of things. and if you know you have lyme for sure, then i say go for it. if it makes you feel better then that GREAT! if it doesnt then you can stop. and try something else.

praying for everyone
Posted 7/7/2009 4:24 PM (GMT 0)
RD,

 

I will most likely get the treatment. Living in PA where Lyme (I think as of 07) has shown to be the 2nd largest state (next to NY) for the number of the disease, it seems like honestly you either have someone in your family or a neighbor that has been diagnosed with it. Wow, they really don't believe in Lyme?

 

So what do they do for you?

 

Honestly, its not that I don't want a doctors help, yes I was irritated that I had to wait an hours before my doctor got to me, I used my lunch hour and with all the missed time from fibro and lyme, I'm not in the best position right now at my job to just come and go and it takes 1/2 to get there so I spent 2 hrs away from work- but for me, I always want to know if there alterative plans, things like that. I just can't take everything a doctor says to me as carte blanche that's all. If I took every pain pill that the doctors have offered me for all my pain symptoms I've have for the last 10 years, I could really have done some serious damage to my body. There is nothing wrong with making sure your doctor has valid reasons for wanting to give you any medication.

Posted 7/7/2009 4:36 PM (GMT 0)

Hi hopegirl.  I am sorry you were disappointed with your appointment.

Which doctor did you see (initials only)?  Did he say he would only treat for 30 days total?   Have you been tested for the co-infections?  Which test results did you have with you?

If it is the doctor I think it may be, I would get another opinion.

Posted 7/7/2009 4:48 PM (GMT 0)

Hi Ticker!

I saw Dr S,

He had me sign some papers for the PICC line stuff, then he said he wanted to do this then he would be doing general CBC? blood testing every week or every other too make sure nothing is getting messed up with the antibiotic. He looked at my tests that I brought with me which was the western blot run. No other test was requested, which was why I was a little confused because I thought he would want to check for the co-infections. He also said that with my insurance if I need longer that 30 days, he could probably get them to ok it because of all the symptoms that I have. I guess he is okay, I was really tired, in alot of pain, pissy that I had to come back to work...etc.

I am waiting for the assistant to call me with a date to see about getting the PICC line put in at the hospital.

Was this the doctor that you thought?

Posted 7/7/2009 8:15 PM (GMT 0)
hopegirl,

as of right now and for the last 3 months since i found out i had lyme and was sent to a ID. he has done nothing put tell me there is no lyme in Tx. and then told me out right that he didnt think i had lyme.

i have 2 neighbors here 1 has lyme, used to live in N.J. and she is in treatment under the care of a Dr. in boston, the other 1 can not even get her Dr. to test her for lyme at all. and she has my sx then i do.

my PCP and nuero have given me meds for pain and mussle relaxers. that only take the edge off.

i can understand your frustions as my nuero donest do mornings, neither do i..lol
but each time i have been to see him. he has been over an hour late getting to his office. and when i had to go to the hospital for the EMG. he did the test i waited over an hour for him to show up. yes that does and can anyone pissy. we hurt bad enough and to have to sit waiting for an hour or more makes us hurt all the more.

i do wish you the best.
Posted 7/7/2009 9:25 PM (GMT 0)
when you guys refer to FIBROMYALGIA, do you mean the muscles/tendon pain??
Posted 7/8/2009 1:21 AM (GMT 0)
Hopegirl,

I understand what you are trying to say and I think I would be a little irritated with his decision too. In my opinion, Id wait for the blood work to come back first. Is he doing another WB? I don't understand why he is jumping to a picc line so fast.

If it was me, Id wait to talk to your Fibro doctor first and see what he/she says. That's just my opinion though. Is there anyway they can both work together to find a solution?
Posted 7/8/2009 2:21 AM (GMT 0)
I just had 28 days of IV abx in May and it seems to have worked for me. If your symptoms have been going on this long, that may not be long enough for you. I have heard of one LLMD in PA. I think I read that he doesn't take insurance and charges by amount of time spent with the patient. I'm sure there are others. If the ID MD wouldn't have treated me, I would have searched for someone who would, because I was sure it was Lyme.

I wasn't tested for co-infections either, but I did improve on the IV ceftriaxone.

Hope everything goes well for you.
Posted 7/8/2009 2:32 AM (GMT 0)
The fibro doc is going to say you have fibro and then give you meds that may help with symptoms but won't make you better. A few years from now, you'll be the same or worse than you are now. Lyme gets mistaken for fibro a lot. There is a big overlap in symptoms.

The lyme doc will give you antibiotics that may make you better. I'd go with the Lyme doc first. There is no test to see if your previous antibiotics helped you. The only way to know is by how you feel. The docs have to go by how you feel since there is no good test for Lyme and no test to tell if you are getting better. Even the tests for co-infections aren't very accurate. Most specialists use a clinical diagnosis based on symptoms.

I'd cut the doc some slack on making you wait. It's getting to be the norm now. I'm more shocked when they see me within 15 minutes of my appointment time than by having to wait an hour. I just had an appointment with a specialist that was 2 hours away. He finally saw me over an hour and a half after my appointment time. He then spent as much time with me as I needed. He made sure all my questions were answered and he ran a few tests so I wouldn't have to come back. I didn't mind waiting because I know he gives his patients all the time they need to decide on treatment. Now if he rushed me, I would have been furious about the wait.

If you don't feel that all of your questions were answered, call the doc and either make another appointment or see if the doc can call you back. I've faxed my list of questions to my docs in advance so they can call be back and answer them quickly. A picc line is a big step and I don't blame you for questioning it. You've been sick for a while so waiting until you have enough info to make your decision won't hurt you.

Good Luck.
Posted 7/8/2009 2:47 AM (GMT 0)
Hopegirl, I'm sorry you were disappointed and don't blame you for being annoyed at the wait.

I also understand how overwhelming it can be to be told you need to get a picc and start iv's although this doctor just might be a blessing in disguise.

My llmd told me the same thing but I was prepared for it because I had done a ton of research and knew that aggressive treatment was warranted in my case. I spent so many years being so sick I was happy that he was willing to treat aggressively and not waste time. Your situation might be different but before judging him too harshly try to do a little more research and find out what others who have been treated by him think.

If you're still not comfortable, you need to follow your gut.

I would do absolutely anything to get better but there have been a few times my gut has told me not to do something and I'm thankful that I listened. One pain management clinic kept pushing cortisone injections and I'm so glad that I didn't listen or else I'd probably be in worse shape.

Good luck.
Posted 7/8/2009 2:59 AM (GMT 0)
Hopegirl, I also wanted to add that llmd's make a clinical diagnosis and treatment plan based on history and symptoms, not blood work. IMHO, the doctors who base treatment on blood tests are not worth seeing. My llmd told me that in his experience most cases of CFS and Fibro are caused by Lyme. I was misdiagnosed with both many years ago and although I still have a long way to go, after three months on IV Rocephin I no longer have much body pain.

I realize every situation is different and it's very important for us to be comfortable with not only our doctors but also our treatment protocols.
Posted 7/8/2009 5:05 AM (GMT 0)
The brain fog has not improved yet but the SPECT scan of the brain indicates significant improvement so I know it's working. I was misdiagnosed and sick for many years and have been told the length of time a person is sick and not treated appropriately has a lot to do with how long it takes to recover. I've also been told and read that brain issues are the most difficult to treat and usually the last to resolve.
Posted 7/8/2009 5:22 AM (GMT 0)
Lymekiller, Have you read ILADS treatment guidelines? Their guidelines are based on many years of experience treating Lyme Disease. These docs know by now what usually works best given a certain set of symptoms and/or coinfections. It's imperative that coinfections be treated also or else treatment will fail. Coinfections also are diagnosed and treated primarily by symptoms. Having said all this, you still need to realize that everyone responds differently.
Posted 7/8/2009 5:25 AM (GMT 0)
this is why i am so despret to get treatment as my issues have just started in the last few weeks and i know were this road leads too without treatment.

its great newsthat your inproveing now i pray it keeps up for you :)
Posted 7/8/2009 5:44 AM (GMT 0)
Thanks RD. I have a long way to go but I need to remember that it took me a long time to get here.
Have you considered alternative treatment such as herbal? If I remember correctly, there are a few people here who were pretty sick and could not tolerate antibiotics. They really had no choice but to go this route and I think it did help. I just can't remember specifics right now. Sorry!
Posted 7/8/2009 5:53 AM (GMT 0)
i can look into it if and when my disablity goes thro. till then i cant as i cant aford it. some of the herbs are over 50 bucks a week i think. i just dont have that right now.
Posted 7/8/2009 6:00 AM (GMT 0)
I totally understand and hope your disability goes through so you will have that option to consider.
Posted 7/8/2009 6:16 AM (GMT 0)
Fibro fibro fibro, we are made of fibers!!!!hahaa and they are all in pain this if fibro um but alot of us are saying fibro pain in lyme is lyme pain not seperate. and some one else w fibro pain who doesnt have lyme has something else fibro is not a disease it is a symptom we should find the cause.

you still have lyme if u have the fibro i would think thats y doc knows u need meds.
Posted 7/8/2009 6:30 AM (GMT 0)
I just want to clarify myself. I wasn't saying to wait for your bloodwork to see if you had Lyme again before you got treated....I was trying to say to wait for the bloodwork so that your doctor could see the whole picture.

Whatever you decide, good luck:)
Posted 7/8/2009 4:55 PM (GMT 0)
I agree with CG. The blood work is definitely a piece of the puzzle but just remember it's just a piece like the bulls eye rash is just piece, but not always present. Your history and symptoms are more relevant. Your doc probably wants to put you on IV Rocephin because you have not responded to orals and are in need of more aggressive treatment. Like others have pointed out, Fibro doctors treat the pain but do not treat the cause. Unfortunately, I've been there and know all to well.

I wish you all the best and if you have any questions or concerns about the iv's please ask. The doctors sometime forget how overwhelming and frightening it can be for us. I can tell you that it's really not too bad at all but I suffered great anxiety over it all beforehand.

Good luck.
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