A Long and Complicated History Topped by Levaquin: Please Help

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A long and complicated medical history topped by Levaquin
Here is my story from the beginning. Well, not my beginning, but the beginning of what seems to be a downward spiral health wise. Please help us figure this out.

Two Pregnancies and Cervical Cancer

In 1998 at the age of 22, I became pregnant with my first born son. A normal pregnancy and natural delivery. Upon my six week check up after delivery, they found abnormalities in my pap smear. With further investigation, I was diagnosed with cervical cancer. The doctor said it was as if the wallpaper was cancer but the sheet rock and wood was not affected. I had a LEEP procedure that removed the damaged area with a good portion of my cervix. I was advised that if I wanted more children, I should do so within the next two years, because any further complications would mean a hysterectomy.

In 2000, I became pregnant and delivered my second child, a daughter. The pregnancy was a little more complicated. They feared my cervix would not hold well enough to get her to full term. During the pregnancy, I was diagnosed with hypothyroidism, likely due to autoimmune dysfunction. As a child, I developed vitiligo, an autoimmune disorder of the skin.

The birth of my daughter was natural, although she came four weeks early. The doctors were still investigating my thyroid condition and eventually determined that I had a big goiter and thyroid nodules. The endocrinologist said that the nodules were too small to biopsy, and though he could not say positively that they were benign, he thought that they were. I was instructed to just continue with my thyroid replacement hormones.

Endometriosis and Partial Oophorectomy

In 2004, I experienced terrible pain in my pelvic area. All testing came back normal and the doctors originally dismissed my pain. It got so bad that I could not even sit down without terrible pain. The doctor took me in on a emergency basis and an internal ultrasound showed a mass in my pelvic region. My local doctors believed it to be cancer, as it showed all of the characteristics of malignancy. I was sent five hours away to a cancer specialist. They performed an open surgery to explore the area and remove the mass. Pathology showed it to be benign, so they removed my left ovary and tube. I was diagnosed with endometriosis.

Autoimmune Disease

In 2005, I became very ill. It started with what they believed to be an infection. Later, I was diagnosed with mononucleosis. I was told that my Epstein Barr numbers were through the roof. I literally could not get out of bed. My body hurt so bad that moving, other than to get to the bathroom, pretty much did me in for the day. I was placed on a medical leave at work. Blood testing revealed high levels of antinuclear antibody (ANA) in my blood. My local doctor thought that I may have Lupus. I was referred to a rheumatologist who diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. After six months, I returned to work.

Hysterectomy and Complications

In 2006, after years of suffering with terrible periods and a few more abnormalities on my pap smear, my OB decided it was time for a complete hysterectomy. My first night in the hospital seemed to be smooth, but in the morning things took a change. I was on a morphine pump for pain, and though I had no pain from my pelvic region, I was having pain in my chest and my left arm. The nurse said my oxygen level was extremely low. The next thing I remember was doctors running in everywhere. I was rushed to CT and then to ICU where I spent the next few days. To this day, I do not know what happened. I got the doctor’s reports. They concluded that it was either a pulmonary embolism or a coronary event. Although, at discharge the doctor told me he thought it was anxiety.

Thyroidectomy, Lung Mass and Fatty Liver

During this time and through following the thyroid diagnosis I always felt awful. No energy, extreme fatigue and weight gain of in total 70 pounds.

In 2007, I developed an illness in my stomach and bowels. The first diagnosis was gallstones. I had surgery to remove the stones. They kept me in the hospital overnight because of the incident the last time I had surgery. I had an endoscopy a few days prior to surgery, and they found I had ulcers and tested positive for H pylori. I got C diff from the hospital and had to deal with that on top of everything else. A colonoscopy revealed that I had ulcerative colitis.

In 2010, my goiter was growing to the point that swallowing and sometimes speaking became an issue. My endocrinologist felt that those symptoms, coupled with the nodules, meant it was time to remove the thyroid. I had a thyroidectomy that year with no complications other than severe fatigue and a struggle to get my levels right.

In 2011, a minor fall left me with a torn meniscus and knee surgery, really not important, I know.

In 2012, I was diagnosed with mono again and the symptoms of pain in my abdomen called for a CT. In receiving the results, I was told I had a 7mm nodule in my right lung and a fatty liver. My liver levels had been high for a few years. I was sent to a pulmonary doctor at the Lahey clinic in Massachusetts. He said that because of my young age and the fact that I had never smoked it was likely not cancer, but that we needed to recheck in six months. My six month checkup revealed another nodule and I returned to Lahey clinic for another consultation. He again said that it did not have some of the characteristics of malignancy and because it was small our best bet was to rescan in another six months.

The Current Nightmare – Enter Levaquin

So this brings me to my current nightmare, one that has continued for seven months. It began on Easter Sunday. I had been sick with what I believed to be pneumonia as my husband had just had it, and I seem to get whatever is going around. We visited the local Emergency rooms and I was diagnosed with pneumonia. They gave me a pill to take while in the ER room. I asked what it was, as my husband was given a Z pack. She told me Levaquin and I took it without question, as it meant nothing to me at the time. We waited for the discharge paperwork and left with a few different pills and and a prescription to continue Levaquin for 10 days.

By the time we reached our house, 20 minutes away, I was itching all over. Hives began to form and my face and ears were starting to swell. I went to a different ER that was 5 minutes away. The rushed me in and administered IV prednisone and Benadryl. I was put on oxygen. After about an hour, symptoms started to slow and I was released. As the reaction was going on, I felt like I was crazy. I think, or at least thought at the time, that it was from the itching. By the time we left the hospital, all I could think about was breathing.

I felt that if I did not concentrate on my breathing I would forget to breathe.

My discharge instructions were to continue with oral prednisone for 3 days and take Benadryl every 4 hours for the next 24 hours. Monday, I slept all day. That evening, I decided I could not take anymore Benadryl. When I came out of what felt like a drug induced coma, I was scared, very frightened actually.

I could barely speak and I did not want my husband to leave me.

I am a very independent person and me feeling like I needed him was not usual. I was very different and it alarmed my husband. He felt it was the prednisone and would not let me take anymore. I finally begged that he let me take another Benadryl to sleep, as I was scared and hating the way I was feeling and functioning. My head hurt so bad that I felt like it may explode.

Tuesday this continued and I could not get off the couch or speak clearly.

Wednesday we returned to the ER. I underwent a CT scan which came out normal and the ER doc felt it was migraines. He dismissed the fact that it could be the Levaquin, as it was only one pill. I was treated with migraine medicine and released.

At first I felt a little better, but some of the symptoms would not go away. I had a limp with pain and weakness on the right side of my body. My neck and shoulders hurt so bad that I could not lay down. The headache seemed unending. I laid around feeling not myself for days.

I recognized my kids but could not come up with their names. I started calling objects by different names, wrappers for socks, and looper for bra, talker for phone.

By Monday my husband brought me to the walk-in clinic, as my doctor was away and the ER had proved to not be of much help. We shared all of the pain and symptoms.

The doctor concluded that it was anxiety and gave me Tramadol for the pain.

The next day my husband brought me to my primary care physician and she was mortified by my condition. She sent us straight to the ER and said she would call them to let them know I was coming and my condition. I was still in terrible pain my head mainly and my right side. I was sent for an MRI that came back normal and underwent a lumbar puncture. It took the radiologist four tries to get the spinal tap and then she forgot to get the pressure.

I was admitted to the hospital for further testing. I had a magnetic resonance angiogram (MRA) and numerous blood tests. I had debilitating pain that left me feeling like I literally may die. I could not stand the light, the nurses had to hang blankets from the windows. The littlest noise hurt me horribly. My husband stayed by my side, as I was still nervous to have him leave me.

I was released a few days later with a slew of different migraine medicines and an appointment to see the neurologist.

The neurologist and her staff were not my favorite from the get go. The nurse asked if something was wrong with me, as I could barely speak and continued to grunt in pain. She changed my medicines and sent me for an EEG that same day. She called a few days later.

I was having seizures in my left temporal lobe.

She prescribed Keppra and left it at that with no follow up appointment or anything. She did mail me a paper about epilepsy. The Keppra did not work well for me. I became very nasty and most of my words were very colorful.

After two weeks, we went back to that neurologist and she was gradually going to reduce the Keppra and start me on Lamictal. The next week I went to see another neurologist that was four hours away.

She said that I had status epilepticus and sent me right to the ER for an infusion of Dilantin.

The next day I returned to be almost myself. I was talking better and acting more like myself.

This sickness has also changed my personality. I say silly things and giggle after everything I say, most of which is inappropriate. I act very childlike or like someone who has mental retardation.

After two days, I slipped back into my previous state. This continued for months the medicine was too low, requiring me to take more than twice the recommended amount, then too high. After two more EEGs both showing slowed brain waves on my left temporal lobe, I was sent to a big hospital to have a long term EEG. There they found the same slowing/episodes that happened 8 to 15 times a day.

I was taken off the Dilantin and started to become myself again. I lost over 20 pounds in month without trying. I was getting around and helping around the house. I was regaining interest in some of my previous hobbies and wanting to rejoin society. This continued for a little over a month. Then, I started feeling bad again.

My cognition remained improved, but my body and my head felt as they did in the beginning of this nightmare. One evening, at my nieces birthday party, I started having pains in my head.

My hearing became very acute. Everything was magnified in sound and my vision again became very blurred.

We left immediately, and by the time we were home, I could barely speak.

My jaw hurt and felt like it could hardly move. My head was aching so bad and my fear had returned.

I have regressed into my previous state and that has continued for two weeks now. I was referred to the neuro-ophthalmologist who said I have pappiledema severe in my right eye and mild to moderate in my left. My neuro thought that I may have a tumor somewhere in my body and my immune system, as a result, was attacking my brain. This is because the testing for paraneoplastic syndrome came back showing positive striational antibodies.

This week I had a PET/CT scan and an third spinal tap. The PET scan showed no abnormalities, although I was given the disc and there is a clear hot spot, at least to my untrained eye, but I guess I need to trust the experts. The spinal fluid was being sent to the Mayo Clinic for testing. For the past weeks, I have had terrible pain in the left half of my face, including my ear, my jaw and near my temple. I know it is not a sinus infection, as I get them regularly and can spot them in an instant. I am not sure if its an infection, but I am inclined to think it is another chapter in this book. I will list some of my symptoms, diagnosis and current medications.

Current Symptoms

  1. Headache, daily
  2. Blurred vision
  3. Magnified hearing
  4. Increased anxiety and fear nothing like before
  5. Right sided weakness
  6. Numbness in tingling in my extremities
  7. Memory impairment
  8. Cognitive deficits
  9. Fatigue
  10. Body Pain
  11. Weight Loss 20 pounds (yay)
  12. Eye pain
  13. Poor judgment
  14. Child like behavior
  15. Clumsiness
  16. Lack of coordination
  17. Lack of focus and inattention
  18. Restlessness
  19. Insomnia

Current Diagnoses

  1. Encephalitis
  2. Temporal Lobe seizures
  3. Status epilepticus
  4. Encephalopathy
  5. Papilledema
  6. Paraneoplastic Syndrome
  7. High Blood Pressure
  8. Acid Reflux
  9. Fibromyalgia
  10. Chronic Fatigue Syndrome / Mono

Current Medications

  1. Synthroid 200 mg
  2. Lamictal 125 mg 2 times daily
  3. Fluoxetine 40 mg
  4. Prtonix 40 mg
  5. Linsopril 10 mg
  6. Vivelle patch (estrogen 100 change twice weekly)

The blood pressure medications and estrogen are new in the last two months.

Please Help

I apologize for the length of this documentation. I want to sincerely thank you for any time and consideration you put into this. I certainly know that it is not your responsibility or obligation. I have two beautiful children and this has taken a severe toll on them. I have gone from a mom who was involved in every aspect of their lives, to a mom who is constantly afraid of causing them shame. In this, I have lost my job and an income, which means paying an incredible price for cobra insurance. I feel like we are up against a wall and running out of possibilities. This is no way for anyone to have to live. I am willing to entertain or try pretty much anything at this point. Thank you again, this means the world to me, just to gain some insight.

With Gratitude and Appreciation.

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21 Comments

  1. Hello,

    I am in similar situation after a reaction to Lexapro and Remeron. Have you recovered at all? Did you receive treatment such as IVIG? My neurologist believes I had a massive autoimmunereaction to these medications. Thank you very much.

  2. Hello,
    I’m suffering from a similar situation from Lexapro. I have every single symptom. Its been challenging being taken seriously by the medical profession. This thread is 3 years old. Have you improved at all?

  3. your words: I was sent for an MRI that came back normal and underwent a lumbar puncture. It took the radiologist four tries to get the spinal tap and then she forgot to get the pressure.

    were these BOTH with contrast Gadolinium> http://www.auntminnie.com/index.aspx?sec=prtf&sub=def&pag=dis&itemId=106037&printpage=true&fsec=sup&fsub=mri

    http://online.wsj.com/news/articles/SB10001424052970203833004577249344022834000
    contact me on FB via email or at FB FQ group if they are both or ju tone is

  4. Sounds like you suffered a brain injury. With all the surgery you had. Which led up to endocrine injuries. Anesthesia contains flouride, a lot of drugs do. Flouride is a major endocrine disruptor. That is why women get so sick after surgery. And are prone to brain injuries, because they are routinely over dosed with toxic anesthesia. Another dirty little pharma secret. Check anesthesia ingredients. When you complain about post-operative symptoms like withdrawal from the narcotics, or cognive disfuntion you are told, it can’t be side effects of anesthesia, you are put on antidepressants, which only compound the problem. Women are more hormonal then men are, the endocrine system runs the hormones, women are more sensitive to endocrine disrupters. The damage can be devastating, and permanent. This assault on women has been going on for far to long. Dumb us down dope us up, then call us crazy, take away our rights, violate our bodies, sounds like an age old problem to me.

  5. Since the seizure activity has been documented, I am wondering if an older drug such as phenobartibal might now help quiet the neurological sequellae?

  6. This sounds very suspicious for Lyme Disease. I would recommend finding a Lyme Literate doctor and getting a full panel of tests. Good luck!

  7. Im shocked at the damage these antibiotics are doing to people…and they are still being dispensed like sugar pills for sinus infections!
    I put a thread together on my FB page to warn people about themas I suspect some people I know may have problems from them.

    A woman whom I dont know…by the name of Tami Lucas… posted to that thread with the link below. I hope it can help Destini Bates? Or whomever it is that wrote the above plea.
    It truly only takes one pill to ravage a life…she isnt alone with her symptoms according to the research I did today.

    The Fluoroquinolone Wall of Pain
    Sign Petition
    https://www.facebook.com/…/209182505773463…

  8. So sorry to hear about your dilemma. There is a Facebook group full of people who have adverse reactions to levaquin and cipro , it is called “fluoriquinilone toxicity group” you should join it, you can talk to people going threw the same thing you are

  9. Join us at facebook page Fluoroquinolone Toxicity Group…from your story I am sure you were floxed way before the ER by IV’s with your surgeries.

    FACEBOOK PAGES
    The Fluoroquinolone Wall of Pain

  10. I am so sorry to hear what you are going through, but please know you are not alone there are literally thousands of us. You have what is known as Fluoroquinolone Toxicity or Fluoroquinolone poisoning. Every symptom you have described and many many more to come over time are due to the Leviquin. Unfortunately, people who take cipro, levaquin. Avelox and other fluoroquinolones are put at risk for this poisoning and yes one pill is all it takes for some where as others it can take 4 to 10 courses of the drugs before they get hit. Most doctors are very unaware that these drugs have the potential to do this and when combined with NSAIDs or steroids the poisoning effect can be much worse. We have been working to get the word out, to educate both doctors and the public and last year we marched before congress trying to get the FDA to do their job and pull this class of drugs from the market. So far we have only achieved a black box warning for tendon ruptures which doesn’t even go far enough and this august we got a second black box warning for central and peripheral nervous system damage that can be permanent. We will be marching again next May. You can meet others like myself who have suffered everything you have from seizures to anxiety and much much more by entering Fluoroquinolone poisoning in the search field and you will bring up several FQ sites. You can also google quinolone vigilance foundation for more information and a very good blog to check out is myquinstory.com you can also google the Flox report which describes everything you are experiencing. Once you have been poisoned you are known as being floxed so you will see this word quite a bit. Unfortunately, there is no way to fix or cure this and I don’t know how far out you are from taking that levaquin but the symptoms can ramp up and cycle for years with the first two years being the worst. If you need to talk please email me, I’m living the same nightmare but please know you will get through this.

  11. I’m sorry I can’t be of any help, but I can offer you my good thoughts. I can’t imagine what you’ve felt like going through this. A few of your symptoms and findings sound similar to things that I have had in my records. After taking progesterone to lessen endometriosis symptoms, I gained 50 pounds and ended up with fatty liver. I eliminated red meat and it resolved. I was young, not a drinker, and the weight gain was the only thing I could think of that caused it. I also have had fatigue and my records indicate a small cyst in my thyroid, but this was never addressed because it didn’t seem cancerous and didn’t effect my thyroid function. I have also struggled with severe migraines in the past, and now struggle with tension headaches that mimic migraines. I have stage IV endometriosis, and wonder if Endo may be a part of these other symptoms, but who knows. Wishing you the best in your healing, and hoping this brings you some answers.

  12. I am Destini’s step mother and we just traveled from Maine to Ohio for my other daughters wedding which Destini was to marry my youngest daughter. It’s a 24 plus hour drive from Maine to Ohio with only stopping for gas and bathroom breaks. When Destini started out she was in a bad state of giggles and her speech was not good at all. They arrived in Ohio on Thursday morning and by Thursday evening Destini speech was normal and she looked great. It was the old Destini back except for a lot of pain in her face but she covered it up very well. Destini made it through the whole time in Ohio and yesterday they left Ohio at 8:30 in the morning and she was still fine. Some time during the afternoon or early evening she fell to sleep and when she woke up she was back the way she was before leaving Maine. The speech was gone again and it’s like we are back to square one. How does it good from bad to good and then back to bad again. If it was something bad wouldn’t it stay that way all the time and not flip back and forth. This makes no sense to us at all. I’m blessed that she got to perform the wedding for her sister and done an awesome job but so disappointed this morning when I saw her and she talked to me in that voice again. I just don’t understand.

  13. Ms Bates. It is clear to me that there is an interruption in normal oxidation in parts of the brain. This will result in exaggeration of sensory stimuli such as light, sound and the sense of pain. Those symptoms are NOT psychological in the Freudian sense. They are biochemical in nature, and might not show up on imaging techniques such as MRI etc. There is an enzyme that presides over a vital biochemical reaction in brain called alpha oxidation. Its failure results in the accumulation of phytanic acid, (present in many normal foods), in the blood and results in Refsum disease. This enzyme is dependent on thiamin pyrophosphate for its normal action. To test this theoretical suggestion, IF there is an increased blood phytanic acid, thus proving Refsum disease, ask for an erythrocyte transketolase to find out whether the enzyme is defective or is lacking its essential cofactor. If there is NO accumulation of phytanic acid and transketolase is normal, you have lost nothing. If one or the other is abnormal, you are “ahead of the game”. This is not weird imagination. It carries with it the hallmark of published scientific medicine.The symptoms of Refsum disease are non specific and are present in a number of different brain diseases. The drug may just be a “stress” factor that added more complexity to an already damaged biochemical status. Derrick Lonsdale MD.FACN.CNS.

  14. Well, the symptoms from the temporal lobe said to me temporal lobe epilepsy before I got that far in your discussion. Which fits with the colorful language you had earlier and all of the intracranial symptoms. Diagnoses 1-5 can all arise off the same problem. I am wondering if you have looked into or considered a consult with The Barrow Neurological Institute in Phoenix AZ as an independent second opinion, not so much for cause but for treatment going forward? Sometimes in really complex cases, you never get to an answer, as as we wait for our lives to return to normal, we miss the fact that normal has shifted, its new and different. It then becomes our focus to develop our lives around the “new normal”, and figure out how to live with that, in that. I have been thru a similarly complex diagnostic history with significant disability, and had to finally give up on getting things back where they were but had to figure out how to live in this new reality. Best of luck to you

  15. No advice, but lots of sympathy. I can’t believe what you have been through and the implications it has had and continues to have on your life. I can’t help but feel that you have been let down by the medical establishment and that this should’ve been dealt with better and sooner. I really, really hope you find the help you need and deserve. Hugs. x

  16. #1 – I just sent this to Dr. K’s assistant and asked her to pass it onto him to read. This is right up his alley. Maybe a few others reaching out to him would also help?

    #2 – Please tell her that Levaquin causes SEVERE tendonitis. That could be part of the pain she’s experiencing, but not likely everything. I’m sure it also has other side effects.

    #3 – Has she been tested for Lyme? This sounds VERY much like Lyme or one of the other co-infections. I have several friends suffering from it right now. She can start with the Western Blot and ELIZA tests, but should also consider using IGENEX. They are very specialized.

    #4 – Has she been tested for PBC? it’s an auto immune liver disease. She would need to check her anti-mitochondrial antibodies (AMA). NOT to be mistaken for ANAs. They’re very different.

    #5 – Checkout our post today about EBV. It talks about the auto immune disease it can trigger. I’ll keep spinning my wheels for her. The story is absolutely heartbreaking.

    Also, is she gluten free? There’s a type of brain ataxia caused by gluten. The antibiotic could have set off a sensitivity. There was a great article about this on Natural News, but I can’t find it right now. It’s was about a man suffering from crazy brain problems every time he ingested gluten.

  17. Just felt like suggesting you to look into metamedicine. There is a free 10 day seminar online starting 21. november 2013.
    Blessings to you.

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