Well some of you were right. The appt today was a waste. She seemed very nice and I had been so looking forward to it. She even started out telling me that I have late lyme and she was classifying me in the late neurological stage but then she started about how my symptoms "did not fit into the box" (dizziness, moodiness, confusion, neck pain, joint pain, anxiety, palpitations, rib pain, etc). She said that she does not understand the meds that Dr. S had treated me with because the only one directed to lyme is doxy. Something about you do not treat bartonella in an adult and then she went on to say how they stay in the guidelines with the CDC. I knew then the odds were against me.

She is wanting me to have a stomach CT scan and a chest one to test my lymphs and all because you do not have weight loss with lyme and it must be something else. Everything she kept saying I was like "already checked and negative". She wants me to stop my oral abx and come back in one month. Then if needed she will do 2-4 weeks of IV.

I left there very depressed and feeling as though this is never going to be over. How do you get better? When I speak to people like this who say it is not lyme and must be something else that just puts all those doubts and weird feelings in my head again. I just do not get it and probably never will.

Glad I did not cancel my appt with Dr. S for the end of the month.

Oh, forgot to mention, I have chronic fatigue syndrome. Wasn't the first time some nut told me that and sure it will not be the last.

Hi Fernee, sorry you had such a bad time at the I.D.'s office...

I know when I went to one he claimed there was NO WAY I could have lyme. And tested me for things like valley fever which he claimed I could of gotten 40 years earlier as a child...ugh! And of course didn't have that...

It would seem if a person pulls off a tick and within the week gets extremly ill then wouldn't one plus one make two! lol...

I had no idea what a LLMD was up until I joined this board. It would of saved me so much time and headaches besides a waste of some of my life if I had known 20 years earlier...But didn't happen and now I know so much more.

I was also told to get off of my antibiotics from one doctor at MAYO clinic to come back and see them...NO WAY was I going to do this...so I didin't go back ....I was just whirlwinding too much on if I was ever going to get better.

If you like the lyme doctor stick with just one doctor and follow through with treatment. It takes along time to get results and different combo's of med's to get better.

Let us know how your appt goes with the Lyme doc. I think you will feel better knowing someone understands....

Hugs
:D

I had replied to your question about Levoquin in another thread but thought you would still be interested in this. I had kept a diary throughout my ordeal and was just reviewing it and 2/1/05 I had severe pain and stiffness (from Levoquin) and on 2/2/05, I entered a comment: pain- both shoulders (like a muscle pull). You're not alone.

Hi Fernee, sorry you had such a bad time at the I.D.'s office...

I know when I went to one he claimed there was NO WAY I could have lyme. And tested me for things like valley fever which he claimed I could of gotten 40 years earlier as a child...ugh! And of course didn't have that...

It would seem if a person pulls off a tick and within the week gets extremly ill then wouldn't one plus one make two! lol...

I had no idea what a LLMD was up until I joined this board. It would of saved me so much time and headaches besides a waste of some of my life if I had known 20 years earlier...But didn't happen and now I know so much more.

I was also told to get off of my antibiotics from one doctor at MAYO clinic to come back and see them...NO WAY was I going to do this...so I didin't go back ....I was just whirlwinding too much on if I was ever going to get better.

If you like the lyme doctor stick with just one doctor and follow through with treatment. It takes along time to get results and different combo's of med's to get better.

Let us know how your appt goes with the Lyme doc. I think you will feel better knowing someone understands....

Hugs
:D

jojo,

Today I feel much better. Last night was just very depressed from the whole ordeal but I am not going to let that stop me.

I like my LLMD just was wondering about some of the things he does but after speaking to that nut yesterday I will not doubt him.

I got back my most recent lyme. It still say high but only like 1.19 however, all the same band are still positive. Nothing new showed up. So that was good news. Now I cannot wait until the end of the month so I can get things rolling with the IV. Just want to get it over with so I know if it helps.

I had replied to your question about Levoquin in another thread but thought you would still be interested in this. I had kept a diary throughout my ordeal and was just reviewing it and 2/1/05 I had severe pain and stiffness (from Levoquin) and on 2/2/05, I entered a comment: pain- both shoulders (like a muscle pull). You're not alone.


Dynawg,

I did see that post. I called my LLMD today and they said it could be from the levaquin so stop taking it for 2 days and then return to half the dose. So we will see if that is working. Mine is still only in my right shoulder but man, today, everytime I move my neck it gets shooting pains up the back and feels like it trys to lock up. The neck pain had stopped for about 3 weeks but came back right when I started the lebaquin. Guess the zithro did help that out.

Fernee, you might try the doc I used. He's in Rockville MD, and has done wonders for both myself and my father in law. Dr B Robert Mozayeni, Optimal Health Physicians, Rockville MD. Goog*le it for directions/phone number, etc.

Don't waste any more time with the Infectious Disease doc; she's woefully uneducated about Lyme's from the sound of it.

Hi fernee. I am very sorry your appointment did not go well. Unfortunately, infectious disease doctors are usually the worst to see for tick-borne illnesses unless they specailize in them. Just see this doctor for what she and so many other are--ignorant.

You can get better with a knowledgeable doctor treating you. It is good you are seeing a Lyme doctor. It can take time, but with proper treatment you can get better.

Hang in there okay?

Hi fernee. I am very sorry your appointment did not go well. Unfortunately, infectious disease doctors are usually the worst to see for tick-borne illnesses unless they specailize in them. Just see this doctor for what she and so many other are--ignorant.

You can get better with a knowledgeable doctor treating you. It is good you are seeing a Lyme doctor. It can take time, but with proper treatment you can get better.

Hang in there okay?
Thank you Ticker,

I am definately going to hang in there.

I called Dr. S. office yesterday about some shoulder pain I am having. They said to take a 2 day break from the levaquin and then go back and half the dose so we will see. Everytime I move my neck it feels as though it is pulling and stretching. My husband asked if that could also be a side effect from the med. Not sure though.

My appt with Dr. S. is the end of the month so we will see how that plays out again. I got the book that you all recommend "everything you need to know about lyme" and seen the part where they talk about psedutumor on MRI scans of the brain. My results showed that but the neuro was telling me that it was wrong because only obese people have it, yet the book talked about how common it was, especially in children and I do not expect them to be obese. The neuro said he has only seen about 10 brain mri's that showed lyme but I just think he is not knowledgeable also. I am bringing the results to Dr. S. when I go.

Hi fernee. Do be careful with Levaquin. One possible side effect is tendon pain. Supposedly it is not a common side effect, but many people seem to get it.

If you think this could be tendon pain, call the doctor back. From what I understand, the med should be discontinued if this is experienced. How long have you been on it?

Many doctors are not aware of all the things Lyme can cause. Definitely do bring your results to Dr. S.

Hi fernee. Do be careful with Levaquin. One possible side effect is tendon pain. Supposedly it is not a common side effect, but many people seem to get it.

If you think this could be tendon pain, call the doctor back. From what I understand, the med should be discontinued if this is experienced. How long have you been on it?

Many doctors are not aware of all the things Lyme can cause. Definitely do bring your results to Dr. S.

Only have been on it for 3 weeks now. I think that is why they said take off for few days and then go back to half the dose. If there is still pain they said to stop and call them again. We will see what happens.

It does not take long for some people to have this effect. I think I had it after taking it for two to three weeks.