LymeNet Flash: need opinion

This is topic need opinion in forum Medical Questions at LymeNet Flash.

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Posted by cleo (Member # 6646) on :

Here is my story and I hope it does not bore anyone.
Very healthy until feb.17 2003. Woke up with a tender lymph node under chin. Progressed to severe panic,insomnia,night sweats ,ears ringing,loss of appetite,hair loss throat muscles stop working,dry mouth,dry eyes.After a year I was diagnosed with sjogren's syndrome. All my blood work is negative even the lip biopsy. I did my own research and started on minocin and compounded cream form flagyl. By the 5 month mark I was functioning normal,with symptoms.I wanted to get tested see exactly what bugs I had to I went to a llmd. He took me off the abx I was on and put me on zithromax 500 daily. By the 2 month mark I was almost back to square one. He then add minocin back at 200 mg daily. The fourth day I had to stop because of the throat not working and 6 hour panic attacks,heart palps,insomnia. everything came back 5 fold. If it wasn't in my throat I would have stuck it out.I stopped for 2 days and started again and the same thing. I pulsed until I could get back to him. He was annoyed that I did not stick it out and told me I would not get well until I add mepron. My blood work was pos. by igenex standards and for erlichiosis.1:160 I have since changed llmd and am waiting for my appt. on the 28 and the results of the spect and alll the blood he took. I have been back on min. and flagyl since thanksgiving.I am swinging way up and down. One day close to normal and mentally calm and content and the next 2 really bad and house bound.
My ? are
How could I have regressed so much in 2 months.
I am struggling with dr. browns approach with low dose and clindy iv's or very high dose of everything.Nervous because the herx involves my swallowing mechanism on going to fast ...but want to make big leaps.
Confused on if I should take tons of
supplements or not.
What do you guys think will I ever get my life back and be able to enjoy my family again.
thanks for listening just sick and tired of waking up like this everyday like everyone else here.

Posted by ShelleyA (Member # 49) on :

Were you tested for babesia? If you have babesia you should be treated for it first.

Posted by Biting Back (Member # 6018) on :

Sorry to hear you're having such a rough go of it. Sounds like you might have cranial nerve involvement. Not fun, and can be extremely frightening. Much as you'd like to, I'm sorry to report that you probably won't be able to just whiz through this. None of us would be here if that were the case! Getting better is a stepwise process in which 'layers' of the illness are peeled off with treatment. Try to envision peeling an onion.

Sounds like you are experiencing herx with treatment, and it's to be expected. However, it does get better and the symptoms are much easier to tolerate over a relatively short period of time if you can stick it out for the first week or so.

I wouldn't eat anything too hot or too cold with your swallowing difficulties. Hot foods/drink especially provoke swallowing problems. I also wouldn't drink anything too thin without using a straw for the first couple of weeks.

Hope that helps some.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by cleo:
He then add minocin back at 200 mg daily. The fourth day I had to stop because of the throat not working and 6 hour panic attacks,heart palps,insomnia. everything came back 5 fold.

I would say this is a herx, especially since it all began on the fourth day. The minocin was working for you before. It's probably working now, but you herxed too much.

My LLMD advocates backing off the meds when a major herx occurs. You will actually lose ground if you don't. You would only stop the meds a day or so, until it subsided a bit.

Then you go right back on the med. If you herx again, stop. The key is not getting too much in your system where your body can't handle it.

And....you don't stop for long. Just enough to recover. Usually only takes a day or two.

Sounds like you also have babesia. I wasn't sure what you said about the testing on that. Many LLMD's TREAT babs, positive test or not.

So the mepron is a good idea, especially with your symptoms of sweats, heart palps, and loss of appetite.

Next time you post, please use the "enter" button to put spaces between your sentences. Otherwise, many here will not be able to read what you've written.Thanks! and WELCOME!

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oops!
Lymetutu

[This message has been edited by Lymetoo (edited 20 February 2005).]

Posted by liz28 on :

There are so many interchangeable bugs we are dealing with, you could have any combination. But it definitely sounds like you have been blessed with more than one.

I was also bitten on the neck, and developed the symptoms you described. I ended up having bartonella, Lyme, babesia, and mycoplasma. The swollen lymph nodes, panic attacks, and splitting headaches are big bartonella symptoms. You cannot cure Lyme unless you get rid of bartonella and babesia first. Even if you test negative for them, you should treat for them--and luckily, you can either get the treatments at a health food store, as in the case of artemisinin, or as part of your overall Lyme treatment, as in the case of levaquin.

Minocycline, however, will produce panic attacks as part of its herx. It's a very effective drug, but not one you may want to take as your initial abx, no matter how much you want to get better right away. It could be easier on you if you get your Lyme/co-infection down to a lower level first, then add mino in lower doses and work up to 200mg/day.

The bartonella combination that is working for me now is levaquin 500mg/day and doxy 400mg/day. As you will see from a search through Lymenet, rifampin is the best abx for bartonella, but levaquin comes in a close second, and also treats Lyme.

I did three months of artemisinin and mepron for babesia, and still take artemisinin at a low dose every day, just in case.

I got great benefit from ketek and omnicef used in combination. Either one alone couldn't do the job.

Posted by cleo (Member # 6646) on :

Yes I was tested for all co-infections. Only lyme and erlichiosis showed up.

The other thing was the swinging way back and forth..One day sooo bad and then one day very good. Is this how you get better.

Thanks for all your answers. I am having a hard time keeping faith that I will get my life back.

My poor husband does not know if I will be jeckel or hyde day by day.
I hope this will change some day.

Posted by cigi (Member # 6600) on :

My husband too is living with a person who one day has a name and a life and the next day doesn't know what she is. It's tough on everyone in the family especially on you going through it that you can't explain how not yourself you feel. I'm not taking xanax like vitamins, but it helps when the anxiety gets that bad. I'm also on lexapro for depression. I'm on rocephin for 3 mos and have had episodes in the beginning SO BAD. It's hard to say roll with it, but I'm not sure what choice I have. If I could get through the problems I've been having with rocephin, she wants to treat me for babesiosis and bart. I'm not sure which order comes first to treat - I've been having so many complications, heart, mind, sodium, keeping my white blood cell count up, she's been going slow. When my white blood cell takes a plunge like last time at 1.7, she has taken me off completely, which I can't stand because that's days off treatment. My blood is taken 2x a week to see if I can tolerate the rocephin. Yesterday, I got a day of myself back. Once I see that, I realize there has to be a light at the end of the tunnel, but it's so hard to see it when you're in hell everyday. My nine year old has it for nearly 3 years (on orals), my 2 sisters and my neice have it. My first round of flagyl did me in for over a month.

We just have to continue with treatment and hope that more and more days of our lives will come back (and it would be nice to stay back). I'm logical now, but then again, it's only 8 am. Forget monthly cycle - I feel as if I'm doing everything dead - non existant.

Good luck -

Cigi

Posted by bg (Member # 46416) on :

Cleo, welcome to our lyme community, educational & support group board!

Cleo and Cigi, would you both mind EDITING your long paragraphs, and breaking them up into 6-8 lines ONLY of text. Hit enter twice to break them up for our brain fog reading.

We are able to edit all of our posts anytime we want too...nice feature of this board!

I've discovered we can NOT delete a TOPIC title without the moderator's doing that.

We can delete ALL of our comments on any post as well.

None of us want to miss anything important and also be able to reply to any questions..ok.

Cleo, hopes this helps you understand better about this board vs. other boards.

Thanks for helping us all out. Here's to GOOD HEALTH only to us lymies for us to go into permanent remission!

Betty G., Iowa