i've gone so far downhill in just the last two weeks, especially where brain function is concerned; i can't concentrate, reading is next to impossible, i can't write (i used to be a writer); i'm so, so scared.

right now i'm working with an ART practitioner in wisconsin; changing my diet, taking supplements to boost my immune system. he's not attacking the lyme, etc yet, as my system doesn't seem to be ready for it.

i want to go this route, because of the results i've read about with other patients (gigi, etc), but part of me is frightened not to be on antibiotics right away. i really feel like i'm going to die from this. i'm barely functional, so weak, so scared.

has anyone had brain function return with treatment? and how do you explain this terrible disease to family members? they don't seem to understand that it affects the brain, and that sometimes i can't help but cry and freak out and have ridiculous panic attacks. dammit, i wish it would just affect my joints or something. this is the worst hell i could ever imagine.

please help, i'm on the verge of suicide, honestly.

~heather
 

I am not familiar with ART...but wonder why you can't do both abx and ART?

You don't want to keep sliding backwards...
and I sure hope you will begin to improve soon.

You are in a place where most uf us have been at one time or another...and it is NOT fun. With treatment you will feel better.
(antibiotics would be my choice!)
 

Without the antibiotics I would not be writing this.

I put off going on antibiotics when I was told I had lyme, for 3 months, this near cost me my life.

I then went off antibiotics about 7 months after I had been on them to treat candida, and stayed off them too long, and near died again.

I was SO against antibiotics for myself... but when I knew I was going to die if I did not do something.... went on them and realized HOW tough lyme is to beat without them....
I thank GOD that I was open to all routes of healing and went on the antibiotics when I did.

I worked with ND's off and on for about 12 years before I found out I had lyme, and can tell you, they are NOT the do all say all like I thought they were.

I have though heard that some were told they had lyme by a ND, so, you just never know where your answers can come from.

If you feel you need antibiotics, get on them... listen to you body, it can be your only hope sometimes.

Trish
 

I personally hate being on antibiotics. But if I go off, I feel just like you describe. I get all foggy, I get emotionally "labile" (meaning I yell at everyone), I get depressed etc.etc. I also slur my speech. It is amazing the way I can feel myself clear up mentally and emotionally after I've redosed myself on abx (though some of my physical symptoms still persist).
 

After 18 months of abx and it killing down a bunk load of problems, I am just now addign ART into my protocol with a renowned Dr in the field that does it.
Im not saying thats what you MUST do.

I just wouldnt wait to do abx though.

one thing i really want you to understand is that ANY chronic disease wreaks havock on emotions. in my experience, symptoms (including emotional ones) come on with no warning and leave the same way. kind of in waves i guess.

what i am trying to say i guess is just that these feelings will pass... LET THEM pass. things will be better for you, i pray very very soon.

i personally find that if i overdo, or just plain don't get enough rest, things are worse. in fact i am just now starting to recover from Christmas, as wonderful as it was.

i also have noticed that i have symptoms of liver distress when i am most out of whack emotionally. that is usually when i feel extra tired and may notice yellow stools...

also waking up at 3 or 4 a.m. is a sign of liver distress according to some things i have read.

i usually try to take extra care of my liver at those times, using milk thistle capsules and maybe dandelion root or doing MILD liver cleanses. and NO alcohol! and maybe eat some bitter foods.

that seems to help me through the emotional stuff i sometimes experience. also, sometimes i just need to take a little break from lyme disease information overload...

if you are like me, i read read read, then get discouraged. if you have any other interests or hobbies, maybe you could concentrate on that for a day or two...

that does me a lot of good sometimes, lets me get things in perspective. even just go over to OT for a while... remember there is more to life than disease.

and sometimes just a real BIG cry. but then a PLAN, to get busy fighting it! forward movement is SO helpful for frustration and discouragement. even information gathering is fighting...

heather i feel for you, just please remember that what you feel when you get like that is not forever. it WILL pass.

consider yourself hugged, lori

You are free to choose whatever treatment course you prefer, but would you still be making this argument if you were talking about tuberculosis or anthrax?

Prior to Lyme I used alternative medicine for everything. I had bad reactions to antibiotics in the past and dreaded taking them. I didn't want to take them for Lyme either. To my surprise everything I read about Lyme told me natural treatments weren't enough, I needed antibiotics too. I was so sick and desperate I started the antibiotics as soon as the Drs. let me.

It was a miracle of sorts. I had almost no side effects, I felt better, I knew they were what I needed. I actually started asking for a higher dose and longer treatment!

I'm making a lot of progress. In addition to Tetracycline (I switched from Doxycycline recently) I take probiotics, milk thistle, oil of oregano, anti yeast diet, organic food, podi patches every night, empsom salt baths, massage, chiropractic. All these things are helping. I have no doubt though that without antibiotics I'd be sicker than I can even imagine.

The antibiotics might not be as bad as you think, they sure weren't for me. Read up here on how other people take them to minimize side effects.

I hope you'll soon feel the joy of waking up and finding that the fog has lifted and your brain has returned.

h&s

My experience
 

Cigi
 

For the 14 years that I was diagnosed with CFS, I tried many different "alternative/natural" things. Did they get me well - no, they did not. Some of them made me feel temporarily better, but after a while they also did not have an effect any more.

Therefore, once I found out that my CFS was in fact, undiagnosed and untreated Lyme Disease - I have opted for antibiotics, because I remain unconvinced that this can be beaten without them as a part of this program. I hate taking them, but feel that as yet I have not seen a convincing option, on it's own, without antibiotics.

Yes, I have had times when I could barely read/write or think, brush my teeth or my hair or would have to sit down and rest on floor on the 20ft trip from my couch to the bathroom. (long time ago, thank God).

I am only six months into abx treatment, but I am feeling better both physically and brain/alertness-wise. And, I still get days of mental desperation and very very gloomy thoughts and outlook on life (feeling hopeless).

You can and will get better, but however uncomfortable it sits with you, you may need to start antibiotics. Perhaps when you've been on them enough to get the germ-load down a lot you may be strong enough to try to control it with alternative stuff.

I cannot comment on ART, because I don't know about it - it may be a fantastic thing, and obviously according to some it has been. But, personally it seems to me that the majority of folks recovering/recovered used antibiotics at some point, or in the beginning. Either on their own, or as part of a more holistic protocol.

DLL

Even GiGi had taken antibiotics - and sccording to her posts she considers them an important part of her recovery.

And yes, brain function does come back and panic attacks can go away - both happened to me, with antibiotics.

I'd do both, abx and ART.

Gabrielle
 

I'm not sure where you're located, but there's an LLMD who is not too far from Wisconsin - Dr C in Springfield, Missouri.

Read "What do you like about Dr C?" http://flash.lymenet.org/ubb/Forum3/HTML/004140.html

You can change your diet, take supplements, etc, but along with antibiotics.
In "Diag Hints & Treat Guidelines...", Dr B recommends all these along with the antibiotics. www.ilads.org/burrascano_1102.html

From everything I've read & from personal experience, I'd say that antibiotics (abx) have to be an important part of treatment, but not antibiotics alone.

Some people have had difficulties on abx, but many have not!! The ones who have been successfully treated tend to move on & they're not here on LymeNet to give advice.

IMO, you need to take abx under the care of a LLMD - a real Lyme expert.
It's possible that you also have co-infections, like Babesiosis, Ehrlichiosis, Bartonella.
Symptoms overlap with Lyme symptoms, so it's difficult to know what the problem is. Read "Co-Infections" at http://flash.lymenet.org/ubb/Forum1/HTML/021366.html

The tests for these are not any more reliable than the tests for Lyme, so it is best to see an LLMD (will be familiar with all Tick-Borne Diseases - TBDs).

Some people have taken antibiotics for a short term & it complicated Lyme treatment later.
The earlier the treatment, the better the results, but only if treatment is adequate.
That means a strong enough dose per day for a long enough time.

Since you've had LD, have you had abx for another condition....like sinus infection?
Did your Lyme symptoms change (improve or get worse) when on abx?

How long do you think you've had Lyme disease?
 

I don't think you can do this without antibiotics. I use both alternative and abx therapies. My story is similar to Trish's. I fought the use of antibiotics and really thought I could do this naturally. It simply didn't work.

My brain fog finally started to lift when I went back on stong abx. I missed 2 VERY inportant dediaction ceremonies for work that I had done becuase I got the dates and times mixed up. It was so embarrassing to be a no-show for my own work. That was when the lightbulb went off and I knew I would lose my mind if I didn't go back on abx.

Lori is right also. You need rest and lots of it. I need 8 - 10 hours of sleep a night or I am an emotional and physical wreck - not very nice to be around.

You have given yourself 2 options: Antibiotics or suicide. I think you know what would be the right thing to do. Suicide is not a nice thing to do to your family and friends.

I would suggest that you also consider asking your MD about an anti-depressant, even a low dose one. It will really help with the anxiety you have (once you get used to it).

Stay in touch. There are good people here who can help with the rough times. See how many responded to your post?

Hang in there.

Bc

PS: Take a family member with you to your appointments so that he/she can understand what you will be going through and can take notes for you.

 

I too, was apprehensive about doing antibiotics and did try an all natural approach, which landed me in the ER with a serious leg infection from a simple bug bite (not a tick). I am now on IV Rocephen and pulsing with some strong orals and feeling better each day. Still have bad days, but much better. I also plan to do some alternative stuff after the IV antibiotics (infrared sauna, acupuncture, etc...) and almost all of us use daily nutritional supplements to help support our immune system.

I've heard the IV is best for people with heavy neuro symptoms which it sounds like you have. Go after this thing with a BIG stick is my advice and stay hopeful. You are not alone!

I'm happy to talk if you need someone to listen...

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Also I believe another is "telling family members" and there were lots of good replies on that. Both are in medical so just look thru screen by screen until you see them.

Best wishes. My mind is bad also so I recently completed neuro psychiatric testing: eval, memory, intelligence, and MMPI, Minn. multiphastic index of 567 true/false questions. Haven't gotten final results yet but very expensive! Betty G., Iowa
 

There is no doubt that these illnesses are extremely difficult to endure at times.

Their effects are so entrenching to our minds, bodies, and spirits.

I know you are not alone in your thoughts of reaching the breaking point at times. It would be untrue to say that many, if not most of us here, have also been in your position at some point on our own journey through this haze.

But, try to keep in mind...
that this is a journey. The road is full of ups and downs, twists and turns, and yes, small and large miracles as well.

It is a very good sign that you have come to this board with your concerns. The first step through is asking for help...
and we are here for that, my dear.

Please, let us do that for you.
Let us try and help you along to the other side of this pain.

My email is also below if you would like to correspond personally, OK?

Praying for you, and waiting to hear back...
Love, Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

I was just thinking of you, and wanted to check in to see how you are today.

Please let us know when you have some time, OK?

My best,
Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

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Thanks,
Rick