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Lyme Disease board

I guess this will be a pretty long thread because I have been suffering for so many years now......but I think I should give some idea of my story, im really sorry if this is so long....
Here is a list of my state of health for the past several years. I am now convinced that almost everything on this list has been caused by having Lyme for probably a year or longer before these symptoms started. It is as thorough as I can remember.

Back problems start; I am almost unable to go up the stairs anymore, I have a hard time turning my neck, and a hard time driving.

I go to the chiropractor three times a week to have my back/neck adjusted.

February 2000:
Woke up with a swollen foot. After x-rays, diagnosed with Capsulitis (misdiagnosis). In a cast for two weeks

Sent to Infectious Disease doctor. Foot was red, swollen, and hot, sent for mri’s, and body scan.

Scans come back and I take them to my Endocrinologist

March/April/May 2000:
Endocrinologist looks at my MRI and admits me to hospital that day.

I am unable to go to the chiropractor anymore because I am now in the hospital, and later bedridden.

I am diagnosed with Osteomyelitis (misdiagnosis) in my foot. Administered IV antibiotics (Ancef)

Given numerous tests, SED rates tested ,temperature, white blood cell scan, More mri’s.

During this time period of tests, I have also been tested for Lyme several times and they are deemed negative

I am still being told I have Osteomyelitis, and that the antibiotics are not working. I may have to go through an amputation of the affected toe, or maybe the foot.

They tell me they will continue the antibiotic therapy at home, so I am given a pic line. I have a home nurse, am administered Ancef daily, and have my blood taken every three days to check my SED rates (which are consistently high)

They change my antibiotics to Rosephen.

My knee suddenly swells up, the doctor believes that the “infection has spread to my knee”, and orders that it be drained for a sample of the fluid.

They take six needles full of fluid out of my left knee, leaving it full of scar tissue and extremely injured.

I am told to go to physical therapy for my knee.

The Rosephen starts to wipe out my system; I am unable to keep down food. I vomit everything I eat. I start losing weight.

The tests for my knee come back negative for any bacteria. There is no infection in my knee.

I am told that I will need a biopsy of the foot because my SED rates have not gone down, and they want to know exactly what type of bacteria is causing the infection.

End of May 2000:
I find a new doctor to do the biopsy of my knee

I go to the new infectious disease doctor who looks over my history, takes some blood and tells me he absolutely doesn’t believe I have Osteomylistis.

The new doc takes a series of blood tests

June 8th 2000:

The doctor calls and tells me the pic line can be removed, that I have psoriatic arthritis, and gives me the number of a rheumatologist.

By this time, for being bedridden for so long, I have lost all the muscles in my legs, unable to walk, and have lost thirty-five pounds, and am now anemic.

I begin taking Methotrexate, Celebrex, and folic acid on a daily basis. I join a gym and gradually work my way from wheelchair, to walker, to crutches, and finally to a cane.

My elbow starts hurting, and I can’t bend my arm. I go to my arthritis doctor who diagnoses my elbow with having bursitis.

During this time period it is hard to get up in the mornings, my body is so stiff and the muscles everywhere ache to the point where it is hard to move.

I start to notice that I am having problems with my short term memory. I can’t remember things that happened just a couple seconds earlier, this has not gone away since.

It is also around this time that I start to notice hair loss

June 2000 – July 2002
I have remained on Celebrex, but stopped the Methotrexate because I felt no difference on it.

July 2002:
I move to Denver from NJ.

During this time the heel of my right foot starts to hurt more and more. I finally get to the point where I can barely stand on it.

December 2002:
I go to a podiatrist who tells me I have bursitis in my heel (misdiagnosis), he also tells me that I can take more Celebrex than what I was taking (two pills a day) if I needed it, and that it wouldn’t hurt me. I was also prescribed Vioxx for my heel if the pain got really bad.

A week later:
I am rushed to the emergency room, I can’t breath, and my stomach is swelling up. My heart rate is 134 in the ambulance. I am put on a heart monitor at the hospital and Pepcid.

I go home from the emergency room with a prescription for 20mg of Pepcid.

At this point, I am throwing up almost every morning. Not food, but acid, and sometimes if the vomiting is very aggressive, blood as well.

I call my primary care doctor who prescribes Nexium, she tells me that it’s probably acid reflux (even though I do not suffer from any heart burn)

July 2003:
Believing that I have arthritis in my heel, I go to physical therapy. My primary care physician tells me she will prescribe physical therapy but if it does not improve soon, she believes it might be nerve damage and she wants me to try a neurologist if I don’t start feeling better.

The physical therapy is making my heel worse.

August-December 2003:

My arthritis is getting worse, as well as my heel. My shoulders are starting to be affected, I have bursitis in my elbow, and I can’t put pressure down on my right heel.

I go to another doctor who orders an MRI. The MRI comes back and says I have plantar fibromatosis, Achilles tendonitis, and calcium deposits in my tendon. The doctor tells me he believes that it is psoriatic (something I’m later told by another doctor couldn’t really be diagnosed with an MRI)

He recommends ESWT, but tells me he is unsure if it will work since it is psoriatic.

I undergo three treatments of shockwave therapy on my heel. It makes it swell up more.

After the treatments, the doctor recommends I go to an arthritis clinic. I go, and they take x-rays of all my joints. I am put on Methrotrexate, Prednisone, and folic acid. I am prescribed physical therapy for my heel again, and am told that I must start walking on my heel (I walk on my toes because it is too painful to put my heel down)

I stop the Prednisone about three days after I start it because it makes my stomach swell up.

I start physical therapy on my heel again, and am told to stretch and walk on it (all this making it worse and worse).

I am getting blood taken every month to monitor the medicine. My liver functions are going up because of the Methotrexate, finally to the point where it is over the levels they should be. I am worried, but am told that my dosages will remain the same, and not to worry until they are double what they should be.

My heel is getting so bad I can barely walk. Limping for months now has caused my whole body to become unbalanced. My lower back hurts, my neck is usually so tense I can’t move my head, and my left knee problem starts to come back again. I start using a wheelchair most of the time.

I am prescribed Enbrel, and go home and read about it online. I find out the link between lymphoma and Enbrel and call my arthritis doctor with questions. I leave several messages, talk to nurses, and not once am able to talk to the actual doctor.

I refuse to take the Enbrel, I stop taking the Methrotrexate, folic acid, and have not gone back to the arthritis doctor since then.

this post is so long, i have to post in two parts.......sorry