Yesterday at the LLMD I found out I have borderline Bartonella Infection, Mycoplasma, maybe Babesia(all tsts were negitive though)and an immune system that is barely functioning.

I have been on Doxy, Biaxin for 3.5 months and levaquin for almost 3 weeks. I was feeling some improvement in symptoms from the doxy, biaxin. When I added the levaquin my symptoms started creeping back in. I don't think this is a herx.....it just feels like a return of symptoms that had previously diminished.

After my visit with the doc yeaterday I was very depressed......3.5 months of abx and my immunition system is shot and I am beginning to feel like crap again. Sine I have only been on levaquin 2 weks shewants me to stay on my current combo until mid September at which time I will stop levaquin, take a drug holiday for a week and then restart a new combo which will have mepron;biaxin or zithro; and doxy or mino.

I am eating a healthy low carb (occassional whole grain) diet. About 70% of my foood is organic. Even my soap and shampoo have been changed to natural proucts.

I take a huge amount of high quality supplements. Too many to list.

I exercise when possible.

I guess I expected to be getting better. In the last week I have deveeloped chest pain...My LLMD want s me to see a cardiologist although she said she didin't hear anything abnormal.

So I am sooooo depressed. I have a very supportive partner and feel blessed for that.....stil don't feel like there is anyone I can really talk to that understands that I feel my life has been stolen form me.....I thought I was gonna get it back but now I am not so sure.....
Can my innune system recover from this assault?

Do we have a chat room on here where we can chat in real time? I need some help here....

Thanks for reading all this,
robi

Im so sorry you are feeling sad.

I probably went undiagnosed for at least 16 years.

I started my ABX about 3 months ago.

I know how hard it is.

It sounds like you are doing everything right and that makes it more frustrating.

My first month was amazing on doxycyline. All of my joint pain was gone in just 3 weeks.

I got switched to Mepron/Zithromax to treat babs. The first month was kinda uneventful. But the past month has been HORRIBLE!

I have to keep telling myself that i am getting better. I think this whole last month has been a herx.

Hang in there. I wish there was a chat too.
You can email me anytime.

Take care,

Jordan

I was impressed as I read your post on what you are doing for yourself and the positive things in your life.

You are a strong person. I have a feeling everything will be OK. It will just take time.

Please give yourself a pat on the back for getting to a LLMD, changing to organic as much as possible, taking the supplements, eating a low carb diet, trying to get some exercise in, etc.

When I find myself the lowest, it is when I am trying to do too much.

This depression,fears are quite normal. Especially when you first get sick. Your life changes so dramatically its hard to cope with it and being sick at the same time.

You are on the right track though it will take a while with lots of determination to follow threw. Once all those issues coinfections are delt with you will begin to level out and hopefully feel better.

Maybe your doc can perscribe an antidepresant for you. Lyme causes this its not like the regular depression its lyme induced.

Hang in there and come in here as often as need be when you need to talk. There are a lot of great people in here. Many even tho very sick are so knowledgable about every aspect of this desease and co-infections.

I really like my LLMD just wondering how you know if she has me on theright course of treatment. She is an LLMD, amember of ILADS,and has about 100 other lyme patients (a rough guess)so I gues she knows what she's doing.

It' just so hard to feel so bad.....I nkow you all know abut this.

Thanks again............I am gonna try to nap now.

quote:

---

Originally posted by robi:
Ok here goes.......I have been crying on and off really feeling like I am not gonna make it through this......I have been in treatment for 3.5 months after 8 months of being undiagnosed.

Yesterday at the LLMD I found out I have borderline Bartonella Infection, Mycoplasma, maybe Babesia(all tsts were negitive though)and an immune system that is barely functioning.

I have been on Doxy, Biaxin for 3.5 months and levaquin for almost 3 weeks. I was feeling some improvement in symptoms from the doxy, biaxin. When I added the levaquin my symptoms started creeping back in. I don't think this is a herx.....it just feels like a return of symptoms that had previously diminished.

After my visit with the doc yeaterday I was very depressed......3.5 months of abx and my immunition system is shot and I am beginning to feel like crap again. Sine I have only been on levaquin 2 weks shewants me to stay on my current combo until mid September at which time I will stop levaquin, take a drug holiday for a week and then restart a new combo which will have mepron;biaxin or zithro; and doxy or mino.

I am eating a healthy low carb (occassional whole grain) diet. About 70% of my foood is organic. Even my soap and shampoo have been changed to natural proucts.

I take a huge amount of high quality supplements. Too many to list.

I exercise when possible.

I guess I expected to be getting better. In the last week I have deveeloped chest pain...My LLMD want s me to see a cardiologist although she said she didin't hear anything abnormal.

So I am sooooo depressed. I have a very supportive partner and feel blessed for that.....stil don't feel like there is anyone I can really talk to that understands that I feel my life has been stolen form me.....I thought I was gonna get it back but now I am not so sure.....
Can my innune system recover from this assault?

Do we have a chat room on here where we can chat in real time? I need some help here....

Thanks for reading all this,
robi

---

And what I put my family thru by not going on the anti-depressents in the beginning. I mean my husband would tell me the car needed an oil change, and I would burst out crying. Life got more on an even keel once on meds.

I was only on them for 2 years, and have been off of them for 9 mo's now, and doing OK.

Try to keep in mind that the cure is worse than the disease, but it does get better.

And what I put my family thru by not going on the anti-depressents in the beginning. I mean my husband would tell me the car needed an oil change, and I would burst out crying. Life got more on an even keel once on meds.

I was only on them for 2 years, and have been off of them for 9 mo's now, and doing OK.

Try to keep in mind that the cure is worse than the disease, but it does get better.

Sorry you are not doing well.

What strain of mycoplasma do you have?

My LLMD just found my myco infection 3 weeks ago and thinks it is the key to me getting better. I've been on antibiotics for 10 months with little success.

Mycoplasma are tough to get rid of, just like lyme is. Some strains are harder than others and are resistant to many antibiotics.

I had the same thing happen to me when I started Levaquin.

By the way, this weekend, I went back to the island where I got bitten four years ago, with revenge fantasies of hunting down every last deer, baking them all into pie, and selling them at the local Sunday market. The path where I got bit runs along this idyllic beachside resort, and on the porch of every house, people were partying, dancing to music, sunbathing, having margaritas that I am no longer allowed to drink.

As I passed the exact spot where I met this fatal deer, who of course has moved on with his life and never given me a second thought, I got really depressed and angry and jealous, and was raging about how I lost all this time, how I have no future now, blah blah blah.

At that exact moment, an old friend jogged by. He whipped off his fashionable headphones and sunglasses (he was looking considerably more buff than he did four years ago, by the way), and screamed, Hey, how are you?!? We got to talking, and before I could launch my whole Lyme story, he said, I have to tell you, I've been really, really sick, too. And it turns out that two years ago, he came down with meningitis out of the blue, went into a coma, permanently lost his hearing in one ear, and lost his job. It took him years to get back to being able to jog again, and that's when he ran into me. For all that I've been through with Lyme, babesia, mycoplasma, heavy metal detox, etc., what I went through is nothing compared to that. He's proved to be a much braver spirit. To the victor go the spoils.

Hey man it gets better then worse then better. But it does get better. I am on my 12th week of IV treatment. Ive been in treatment 2 and a half years. I have had Lyme for 14 years. Im 22.
only diagnosed 2 and half years ago hence treatment then.....

Babs, Bart....no mycoplasma yet but he keeps testing me so who knows. I have good days and bad days, but I am alive and I go to class and I go swimming even with my blue thing on my arm to make sure the PICC line doesn't get wet.

We all get depressed and think about what we don't have and how weak our bodies are. Why not try and think about how strong you are for keeping you alive..... Think of the things you have and the stuff you can do instead of the stuff ya can't. I know its a longshot but sometimes gratitude is the only thing that keeps me sane and alive.

On that note thats more than enough of my rant. Feel free to email me if you want.....
Keep your head up...keep fighting we need you.

Thats my 2 cents

Take gentle care all
Always in my prayers
abbie

quote:

---

Originally posted by robi:
Do we have a chat room on here where we can chat in real time? I need some help here....

---

Actually, I think it was lazerorca who set up this AOL Instant Messenger Chatroom.

aim:gochat?roomname=lymenet

(Just copy and paste the above line into the address bar of your browser and a chat room will pop up)

I still have a shortcut to it on my desktop. If you have AOL IM, then you just need to sign in first, then go to that link.

Hope it works for others.

If you want to meet in there to chat robi, just let me know.

Pea

Yahoo ID: MariaStella20

MSN: [email protected]

I'm signed on to yahoo also, I'm not sure if I can chat or not.

But if anyone would like to make a meeting time and place, I'm up for it..

There is a lyme chatroom every Saturday night... I'll have to go and look for the link.

Anyone else?

lsudvm....it is great that you can be so kind while in the middle of your own difficult time.....damn I wish I could do that......I will work in that direction

salatheel....yes i see a naturopath.....she has made som good reccomendations although she is not lyme literate...she is learning.

Mathas I am not sure what strain of Myco I have they re testing that now. They found it in a lymph node that was removed in January......blood for myco was negative...
I have been on doxy sinve May so maybe that has taken care of the myco.....don't really know.

Cindy thanks for the email....I will answer when the energy allows.....I really appreciated getting it.

Liz...I acually laughed when I read about the thread and scissors....was a great way to visulaize cutting the little ****heads up into small pieces

Abbie....you are an amazing 22 year old....I am 44 and have been healthy until now....you have been fighting a long time and you still have a great spirit....I am impressed and fell like well if she can do ......maybe I can....thanks

Stella and Green pea......I would love to chat but the link didn't work.....I used to do IRC chat....anyone know how to do that....anyone can set up a chat room there.
I wonder what it would take to have a chat room that we could drop in on anytime and see whos there. Anyone know how to do this?

I just want to send you some hugs. I've been on treatment about the same time as you. I started in early March, but the first 6-8 weeks were really just a penicillin challenge getting me up to a significant dose.

I too had some major symptoms hit with Levaquin. I try to think about it as the pain from the Levaquin is just the last attempt of a dying spirochete to make it's mark...but I know I'm going to win the war.

I was really hoping I'd be farther down the road by now. I start law school in a few weeks - and it's a night program on top of work. I'm scared because I was hoping to be in a better place.

But I'm in a better place than I was 2 years ago, and that's because of pain management. I don't know what I would feel like if I hadn't found a good pain management doc and a great physical therapist.

They helped me get the use of my hands back, which was the worst symptom for me physically and emotionally. When your hands always hurt, suddenly touch is a bad thing. I used to just dig my hands into my cats' fur, because that was the only thing that felt good.

I hope you are feeling better.

*Hugs*

I'm not sure if this post is for you or for me. I am right with you on this. Every time I think I am turning the corner, I get hit hard again with symptoms.

The depression that follows is the kicker that makes it all unbearable. And no one understands.

I had my annual review today with my boss. And don't get me wrong, he has been great through this but I just wonder how long he will continue to be supportive.

I try to explain Lyme and what it does but the average person in New Mexico has no clue what this is all about.

I'm a youth minister and one of the reasons that I am in the church that I am in is because of my normally emotional and proffesional stability. But Lyme changes almost everything about me.

I feel like my boss is starting to feel like this can not be all due to Lyme. He suggested that I see a counselor and made a veiled suggestion that maybe there was some kind of Spiritual problem that was causing me to be depressed and act so out of character.

That is really hard for me to hear. This disease is starting to undermine my bosses trust of me and that is disater in my proffession.

All that to say Robi, I hear you and you are not offended by this I would like to really start praying for you.

Hope you start to see some light at the end of the tunnel.

I think we are all just going to have to be very patient,we all know now where that word came from as being sick is very hard to take.

Talk to a counsellor about how you feel if you think it might help but acceptance of what is happening and that it is going to be a longterm struggle is the only way to get over the depression.