It has been a very traumatic 14 months. Facial paralisis, delayed treatment for co-infections, total loss of life, no friends, days filled with pain and pain pills..
I came up to Chico to do Hyperbaric a month ago and so far had to start all over. Lost my gallbladder and just found a systemic staph infection I think I have had for at least 6 months or more. I think this is why I have stayed so bad.
I can't believe after 14 months of aggressive treatment the pain I am in. Its just worse..not better and I am on ALL the big guns.
I want to quit treatment. I had a life before treatment. I had friends, fun and a reason to live.
I sit in this dark hotel room and it's so hard to go through..that this is what my life has become. Nothing.
I know everyone is going through thier stuff too...but really..does this get better?
I feel like know body can say that. I wish I could believe it was true. I don't think I do anymore. I just don't.
I needed to share how I am feeling...because it's eating me up.
Thank you for letting me share.
Jen
Posts: 111 | From San Francisco | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Jen,
I am so sorry to hear you are not doing well right now.
There are many different antibiotic options for staph infection.
I can hear your pain and despair and want you to know that I am here for you.
I am sending Angels to sit with you. To hold and comfort you during
This most difficult time. I don't know about stopping treatment,
But I do know how you feel about everything that is and is not going on in your life.
Just wanted to send you my support and prayers and let you know you
Are not alone in this. Hang in there. Please.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Jen, my heart is sad for your situation. I know my daughter, who is nearly 20, has been ill for quite a while, and has been in treatment for two years.
Like you, all her friends have disappeared. She doesn't see a future. HOwever, this year, she has managed to take one oncampus class at the community college, and two online. She hasn't attended an oncampus class in almost three years.
Two years ago, she couldn't add numbers or remember words. She is in pain from the treatment, but she takes something for it because she wants to move forward with life.
This is a big indicator that she is getting better. Her memory is back, her social anxiety is less, she can smile and laugh a little more.
I just wanted to let you know that you are not going through this journey alone. It's a journey, a season of life.
You may be alone in that hotel room, but just by you reaching out to us, you are NOT alone.
I tell my daughter that I see a future for her, and we will not give up.
There are many different levels of remission on this board. What works for some doesn't work for others. It's an odd disease.
Take care of one thing at a time. Comparmentalize, type a journal, then when you are feeling better, you can go back to see how far you've come
Did you know that gold cannot be made without intense heat to burn off the impurities? I think of it as cancer. It's ugly, and the path to health is hot and painful. But, many come through stronger than before.
Your season of life will be used later, I guarantee it.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Dear Jen,
I truly empathize with you as I am going through a simular phase right now. I use the word phase, because I have been here before.....
We have to be strong and kep telling ourselves that this too shall pass. Often this is very difficult to do when we feel like DEATH.
You, I, and others here have felt better before beginning treatment. I have said several times in the past weeks: " I'll take my 45% of living back anyday", but in reality, w/o treatment that 45% would probably dwindle to 40, 30, who knows where.
I want to live! So do you! If you didn't, you'd just lay your head down and die. But! you're fighting, you're concerned, you want to live.
I wish that I could physically comfort you, am sending you mental hugs and asking God/Spirit to infuse some light into your world.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Jen,
I am so sorry that this time is difficult, with the staph infection and your gallbladder loss. I can really relate to your feeling of difficulty, I feel like I have lost so much of my life during the last couple of years of illness, intense treatment and only partial, on-going recovery.
But the truth is that you have made new friends on lymenet, on the same bumpy journey with you.
Just wanted to let you know that we are all with you, I am thinking of you, and I hope you will keep us posted on everything you are doing. Are you still doing the HBO treatments? My llmd thinks those are a good idea, but it sounds like they can be difficult. Can you go on less aggressive treatment for the next period of time? Is the staph infection responding to your treatment, which I guess would be more abx?
Take care and you have all of our best wishes and support.
Posts: 2557 | From home | Registered: Aug 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Jen,
Not able to read what the others wrote yet.
But, I have had a lyme email friend that I met at Samsun Clinic in Santa Barbara when I was first dx and looking for answers.
She was in a lot of pain too and bedridden for the most part.
She also is several years ahead of me in treatment.
Last month, she went to Europe via a cruise.
She still has her days when she needs to stay down but it is mostly because she has over done it.
She pretty much has a life now.
it has been good to watch her get her life back.
She went to Chico. It did not help her but it helped the other lady she went with.
She feels the water therapy was a key thing that helped her.
I recall her sitting by the pool and throwing up when she started.
wasn't able to make the sessions many times.
Now, she goes without any problems and has lunch afterwards with some of the people.
WE will get there. I'd send you a fast forward button if I could find one.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I am so glad that I am not alone anymore with this illness. Jen I feel the same way. I want my life back. I use to work with Judges PO officers and all the prisons in the US. Now I cant remember where or who I am sometimes I black out for hours. The pain is unreal I just have to have faith if others have it then I want it too. Cry beat up your stuff animals what ever it takes to get through this we cant go around it we cant go over it we just have to go through it. Sending you light and hope and a few tears to share. Oh yes my favorite a cookie. The Rose
Posts: 3 | From Louisiana | Registered: Nov 2007
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posted
I HAVE to tell you - there is a light at the end of that dark tunnel.
I am finally better after 3-1/2 years on abx. I remember very well being where you are. My husband is there now. I wish that seeing me get better made him feel better, but it doesn't.
Everyone of us just has to go, as someone said - "through it".
My prayers go out to you. Please just don't give up. The treatment is worth the cure!
Posts: 108 | From Florida | Registered: Sep 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
And you do have friends!!! Maybe not me, I am at least a friendly acquantaince though!*)!*)! I hope*)!! But I know A.S. is your friend!!!! And your honey obviously ADORES you!!!!!!!
We really DO care- I know we do- and I think the Stpah wocould be the key that was holding you back from getting better!!! Being better could be very close!!! I sure hope so!!!!!!!!!!!!!!!
You have been sick for what must seem like forever!!!!!!!!!!!!!!!!!!! And gone through So much!!!I hope you are feeling better- Bestest wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks everyone for the support. It's nice to hear about some testomnies of people returning back to a life that is more then lying in a bed..poppin pills.
I will be in Chico still at least 2 more months.
I had to start over again because I had to stop treating when the gallbladder thing happened and that took 2 weeks to recover from.
The staph infection is NOT by any means better. They are giving me orals because they have to show that orals did'nt work in order to get me IV vancomycin. It's all an insurance game.
So while the staph is systemic and is painful and causing I thing a huge problem in my recovery...I have to sit around and wait for the orals to fail. My LLMD is pretty sure they will due to the fact I have had this infections 6 months plus...
Thank you for listening to my sorrows. I feel like there is no light right now.
Just pain and dissapointment with despair added in for torture.
Thanks everyone for hearing my cries. I don't know how I can play this Lyme go around anymore.
Posts: 111 | From San Francisco | Registered: Feb 2007
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bettyg
Unregistered
posted
jen, you CAN do it with this motto we all grew up with:
I THINK I CAN; I THINK I CAN as the little train tries with all his might to get up the steep hill!
yes, you've got plenty of LYMENET FRIENDS, who will not turn into "fair weather" friends on you.
i'm so sorry for all you've been thru, and still going thru. praying god will start you on turning the corner towrds getting you into remission!
i too am worse than when i started my lyme treatment course 3.5 years ago. i'm not on abx anymore; was for 20 months.
not on supplements; was on 22 for 6 months which made me worse. finished them all; fatigue is overwhelming now; no energy for anything. i do understand.
i'm not going to give up; I'M JUST TRYING TO DEAL WITH OTHER HEALTH ISSUES FOUND.
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Did you treat co-infections? All of them and aggressively?
I am sad to hear you are not doing well after long antibiotics...
This is what I am scared of. That I keep hurting myself and wish I never treated.
Thanks you for thoose who have shared with me your support, stories and inspiration.
I am liberated knowing I can just come here and say how I really feel without all the judgement or critique I feel I get from most everyone, even my therapist.
I thought I am suppossed to tell her everything that's eating me up so she considers me "negative".
I thought that's what therapist's are for?!?!?!
Posts: 111 | From San Francisco | Registered: Feb 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Jens, I believe you have to treat lyme & company. You can't ignore it and everything & life will be okay.
Sometimes you just aren't taking the path that is right for you. Sometimes we find the wrong doctor, health care is not just one path for everyone & all treatments help everyone including cancer. How long have you been fighting a super bacteria like staph?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Jennifer--
I've been trying to respond to your private message but your mailbox is full...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I have been fighting the staph bacteria (unknown to me) for at a min of 6 months. I think I may have had it longer.
My LLMD sent me to and ENT who would'nt culture my ear and finally got the doctor associated with Chico Hyperbarics to do the culture for me.
I just found out less then a week ago about it.
I have TONS of soft tissue swelling and joint problems in and around the ear. It's the most painful symptom I have.
I just feel SO frustrated..like I have been just spinning my wheels because there is NO way I could have recovered no matter the medicine I was using with this staph infection.
I am hoping to get Vancomycin wich is one of the antibiotics that this staph infection is responsive to this week after they culture the ear again and see the infection still.
I am sure it will still be there...doubt a week of Rifampin took away such a deep seeded nasty systemic infection. I am glad my LLMD will pull out the big guns though and not play around.
I will clear my mail box too Bugg..thanks for trying to email me.
Posts: 111 | From San Francisco | Registered: Feb 2007
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I read what you wrote and I feel what you are going through.
I have been through a lot over the last few years myself.
I had a biopsy of my cervix in April 2004 and by July I had to have a hysterectomy.
September 2005, I get diagnosed with a rare brain condition, November 2005, major brain surgery.
I have loss of use on the entire left side of my body, but I move forward.
Finally think I am going to feel better.
February 2006, start feeling worse and begin getting tested for everything under the sun, including Lyme, most things are negative.
I have so many diseases, conditions and illnesses, I should probably be half-dead.
Dec. 2007, I get diagnosed with Lyme Disease via Western Blot (3rd one).
I feel like crap, but move on.
I have had 4 surgeries in 3 years and so many other things, but I still keep moving forward.
Just hang in there and try not to get discouraged.
You will get better. It all takes time.
Posts: 3 | From NY | Registered: Nov 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Jen, sounds like you are fighting MRSA. Do you have boils?
My father got this while taking care of my brother in the hospital. We didn't go over for Thanksgiving for risk of exposing my daughter, who is ill with Lyme&Cos.
It's a booger to get rid of if you are healthy.
It goes anywhere you touch. For my dad, it was up his nose and sinuses. I'm sure you can get it in your ears.
One of the culprits are the mobile vitals carts they bring from room to room. Those should be banned and each room have their own that can be sterilized between patients.
You have no choice but to treat this, and make sure the hotel staff knows so they can be careful.
posted
No MRSA, it was cultured and I posted in Medical what strain of staph it is.
It's called Staph. haemaolyticus
I have no boils.
It is a staph infection immune compromised people get and is one that effects the soft tissue, bones, skin and can cause heart problems.
I will post the name of it after this. I have to go copy and paste.
Thank the lord it is not MRSA but my treatment will be the same, hopefully though not as long.
Yes, I think staph espeacially if you have had it awhile is pretty bad even if your healthy.
No wonder why I am not doing very well, HUH?
Least I know why I was'nt getting better so hopefully things will turn around once it is treated.
Posts: 111 | From San Francisco | Registered: Feb 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Definitely!
Posts: 2903 | From AZ | Registered: Feb 2006
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