Can someone send me his phone number in case I have it wrong. PLEASE!!!!!!!!

I have decided to stop the Bactrim for today because between the blackouts, agitation and anxiety I can't take it today. Also when I am sleeping my legs feel so heavy, tingles and numbness and twitches in different places. And I kept jumping out of my sleep, the little that I did get last night. Do you all feel that you are dying when you are like this?

I don't know if it is blackouts or if I am stopping breathing. I come to with a jerk and gasp for air when I have had these "blackouts".

I have already told my husband that if I don't make it I want him to take both the children to see Dr. Jones and be treated. I also am going to write my children letters to tell them how much I love them just in case.

This is ruining my entire family's life. I just have this deep down feeling that I am not going to live through this. Especially if I keep having these episodes. I don't know if they are blackouts or if I am stopping breathing. I am waking all night long with "jolts" and gasping.

I have never been so petrified in my entire life. Do any doctors take you in earlier if you are having blackouts/breathing problems? I have so many neurological problems now. I am wondering if my brain is forgetting to breathe.

If you made it this far, thank you.

Terri
 

Hang on. I felt like the vultures were circling several times, but I'm still here. You are actively trying to get treatment and that is the best thing you could do. One thing to keep in mind is that the lyme docs are scarce and swamped with patients, so it might turn out to be a month or more before you get an appt. Just so you know and are prepared.

Not clear on your current treatment situation. If you have been taking bactrim or any other antibiotic for the first time, you might be experiencing a worsening of symptoms, called a herxheimer reaction, caused by die off of the spirochetes. So, if this is the case, then laying off it for a time to let things settle down is a good idea. When you feel confident again, maybe resume (and consider a lower dose).

If this is not a herx, then symptoms this disturbing should be treated, especially if you have to wait months for an appt. Where did you get this bactrim? Do you have enough to hold on for a while? Don't answer this on the board, just think about it and take action if necessary. Another possibility is an herbal treatment just as a holding action. I don't ordinarily suggest this, except in dire situations. You might look into samento. Can go back and read previous posts on this subject, or go to the alternative treatments section at www.lymeinfo.net.

[This message has been edited by lou (edited 30 July 2005).]
 

In addition to what lou has said, I want to suggest a few more things & ask some questions. Answers are optional, of course.

Are you seeing a LLMD now?
(Please don't give the name on LymeNet.)

If you aren't sure, go to Support Groups on the left. Check groups in your state & surrounding states.
Also, go to Seeking a Dr on LymeNet.

Ask for names of LLMDs.
If your dr is recommended, then that's great.
If not, that could tell you something, too.
We all want a Dr with LOTS of satisfied customers who have been treated for Lyme.

I'm not familiar with Bactrim so I don't have any idea what the side effects are.
Could the "gasping for air" be a reaction to Bactrim?

Have you checked with your dr?
If it's difficult to reach your dr on the weekend, ask your pharmacist.
I've found they are so willing to help & very knowledgeable.

How long have you been taking Bactrim?
Are you taking acidophilus to replenish the good bacteria in your system?

Have Co-Infections been considered?
like Babesiosis, Ehrlichiosis, Bartonella.

When you say you wake up "gasping for air" -
Does this feel like "air hunger"?

"Air hunger" is listed as a symptom under 'Piroplasmosis (Babesiosis)' in
"Diagnostic Hints & Treatment Guidelines..." www.ilads.org/burrascano_1102.html

It's possible you could be dealing with more than just Lyme disease.
It is difficult to know based on symptoms alone because the lists of symptoms overlap for all Tick-Borne Diseases (TBDs).

Also, a LLMD in CT told me the tests for co-infections are not any more reliable than testing for Lyme.

To complicate matters further, most TBDs take different meds, so you have to know what you're targeting with treatment.

That's why it's so important to be evaluated by an LLMD like Dr L.

Ask as many questions as you need to.
Hopefully, someone will have the answers.
 

Bactrim may also have an effect on Bartonella.

In the beinning when I was trying to work and live with my symptoms (prelyme dx)I would fall asleep like that all the time, several times with a glass of liquid in my hand that would fall over and spill into the bed and I would never know it until I woke up with my entire body vibrating like a snapped rubber band. I did have small amounts of seizure activity on EEG but meds did not help me at all, in fact made me worse

Sounds like you are in a state of panic which believe me I have been there and still go there but so bad for the disease. Get your doc to give you a bit of Xanax or klonapin to help you throught the panic attacks which really are agony to deal with.

Just a suggestion.
Lymelady
 

The two drugs people always talk about here for bartonella are rifampin and levaquin (NOT AT THE SAME TIME!). There's a doctor you mentioned in your post who uses rifampin and a macrolide together for bart, and he has lots of satisfied little customers. Try a search for posts by Pattiecake.

In addition to being dangerous when left untreated, bartonella is notorious for making people absolutely nuts. My big thing was yelling at the subway turnstile for not taking my monthly pass fast enough. Yeesh. Thank God for rifampin. Plus, it can block the strength of Lyme drugs. Nothing to mess around with--get it treated right away.