Update

That's like saying your mildly pregnant, either you are or your not and one positive band on the test, your positive. And your body can't completely fight it off like most f these doctors think it can.

Great you got some doxy, how many mg are you taking? Need 400 mg per day I believe, but someone else can chime in with their opinion.

Sick5 I'm sorry the appt didn't go we'll but if it's any consolation, that is EXACTLY the same experience I had with my GP! I showed the igenex results to her and asked her to provide me with the doxy script, which she did.but only for one month. She was unable to interpret my results and sided with the ID dr who saw me and dismissed my results and told me I don't have Lyme.

I too saw internal medicine dr's (2) and both had no clue what was wrong. Also ruled out Lyme.

Good luck!

I'm sorry that also happened to you it wasn't fair. Thank you it makes me feel a bit better that I'm not alone.
Yeah I don't think the interest will help but he can at least rule things out. I'm not sure why I wasn't sent to one years ago but I'm moving forward now

That's how it goes with them docs, I'm afraid. I've been up, down, all over the place over it. A lot of us have. Sucks.

Options, as you might already be aware = see an LLMD, LLND, something like that, or try to get where you can on your own.

A possibility for at least some relief -> you could try and see if you can manage to find a GP that'll work with you as far as some of your symptoms go, do some testing unrelated to Lyme/co (liver, kidney function, if/when you get started on some abx long-term), etc. Got one now that'll pretty much do anything I ask of her, apart from test for Lyme/give me antibiotics. Not what I need, but, hey, it's a little something.

But, if it'd be too much stress for you to go through doctor after doctor, or it's not a possibility, oh well. It wouldn't make the situation that much worse.

And, yeah, it probably seems hopeless, I know the feeling, but try, try all your options. When you've run out, look for some more. When ya run out of those, well, I'll let you know, when I get there. On the same path, just a little further along.

Don't give up, right? Can't give up, not yet.

Hi Sick5,

I'm so sorry you had a bad experience with your doctor. Unfortunately, this is all too common. Most regular doctors won't touch Lyme with a ten foot poll. They are scared and, oftentimes, in denial that Lyme is real. They listen to the CDC, which tells them that chronic Lyme is not real and Lyme is "hard to catch and easy to cure."

The good news is that you got some doxy to tide you over. I was not so fortunate (have chronic (aka long term Lyme)). After my positive ELISA (really hard to get a positive ELISA), my primary was going to prescribe a month of doxy for me. Then, he consulted with a Rheumatologist who told him I did not have Lyme. I got the complete run around. I chose another rheumatologist, who told me it was impossible for me to have gotten Lyme in California. It is utterly confusing to patients who are sick and desparately trying to get help.

Finally, I went to an LLMD, who is helping me. I stuck with my gut, which told me to get to the LLMD. Now, I have improved some since I started treatment. Please get to an LLMD. We can help you find one. I know it is overwhelming. You can do it!

As for the doxy, 400 mg a day is the recommended dose for a minimum of 6-8 weeks. And that is if you catch it right away and begin treatment right away. Even then, that is not a guarantee. 200 mg a day keeps it from replicating. Make sure you read up on detoxing and start detoxing. Also, high quality probiotics over 50 billion a day are very important while treating.

It is best to see an ILADS trained LLMD. You're in the right spot. Don't get confused by doctors who say "You don't have Lyme" when they don't have requisite training to do so. My primary doctor right now does not even believe in chronic Lyme. It can be a psychological battle. Keep fighting and don't give up.

Antonio192X said...
That's how it goes with them docs, I'm afraid. I've been up, down, all over the place over it. A lot of us have. Sucks.

Options, as you might already be aware = see an LLMD, LLND, something like that, or try to get where you can on your own.

A possibility for at least some relief -> you could try and see if you can manage to find a GP that'll work with you as far as some of your symptoms go, do some testing unrelated to Lyme/co (liver, kidney function, if/when you get started on some abx long-term), etc. Got one now that'll pretty much do anything I ask of her, apart from test for Lyme/give me antibiotics. Not what I need, but, hey, it's a little something.

But, if it'd be too much stress for you to go through doctor after doctor, or it's not a possibility, oh well. It wouldn't make the situation that much worse.

And, yeah, it probably seems hopeless, I know the feeling, but try, try all your options. When you've run out, look for some more. When ya run out of those, well, I'll let you know, when I get there. On the same path, just a little further along.

Don't give up, right? Can't give up, not yet.

Believe me it feels hopeless right now but I'm not giving up

Sorry about the disappointing appointment, Sick5 :(

Truly, when someone has a complicated infection like Lyme, they need to see a Lyme specialist.

You wouldn't use your GP if you needed brain surgery - right?

Same thing here.

I wish you the utmost success in getting the proper care.

Please keep us posted.

cd3764 said...
Sorry about the disappointing appointment, Sick5 :(

Truly, when someone has a complicated infection like Lyme, they need to see a Lyme specialist.

You wouldn't use your GP if you needed brain surgery - right?

Same thing here.

I wish you the utmost success in getting the proper care.

Please keep us posted.

Sadly I think I've lost hope in this regard what happened today was just awful.

Sick5, I went the GP route and I lost faith. Went to an Internal Medical doctor, he said I had a sinus infection. After the drugs, he sent me to a neurologist. Boy was that guy DUMB! I had to research on my own and find a LLMD.

Now I feel like I am going somewhere, but it is slow. Very slow