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Personal Stories
Table Of Contents:
Dedication
The Drug
The Adverse Reactions
Achilles Tendon Damage
Morning Paralysis
Peripheral Neuropathy
Severe Leg and Knee Tendonitis
Vision Damage
Ear Pain, Pressure Dizziness
Swollen Glands
Vasculitis
Spasms (urinary and intestinal)
Joint Cracking
Hair loss
Weight loss
Diet
Exercise
Supplements
Pain and painkillers
Handicapped equipment and facilities
How I feel today
Was anything NOT affected?
Any food make it worse?
Advice for sufferers - UPDATED
Dedication:
First and foremost I want to thank my Father who has always been there for me, especially now when I have needed Him most. Through the tears, the pain, the despair and the sorrow. He has been my strength and I would be nothing if it were not for Him. My Father name is Jehovah-Rapha. There is no healing outside of Him.
Second I want to thank my wife. She is my gift from God. She was there during the worse of the pain, there to dress me when I was unable to, there to push my wheelchair to give me mobility. She was my strength during a time I was with none. I love her with all my heart and I always will.
Third my four-year-old daughter has taught me that even when you are handicapped you can still have fun. I will always remember her riding with me in the wheelchair, sharing my crutches and cane. Finding fun in everything we did, regardless of how little I could actually do.
The Drug:
Around July 17 2003 I began experiencing some mild pain groin pain. My initial diagnosis was a groin pull. After 1 week the pain remained but the diagnosis changed. Now is was a possible bacterial infection (no tests were done). My primary physician prescribed an antibiotic for 2 weeks. After 2 weeks the pain remained. I then went to a specialist who prescribed an antibiotic from the same family of antibiotics and told to take it until the pain resolved. I was told to take ibuprofen for pain. After 5 weeks I began having pain on the heal of my left foot (near the arch, called the plantar) . I called the specialist who told me it was not the drug and continue taking it. Not entirely certain he was correct, I began to do my own research and found an Antibiotic Support Group under the Yahoo message boards. After seeing hundreds of reports of similar problems I immediately stopped taking the medication. This was September 4th 2003. A date I will never forget so long as I live. I was on the antibiotic for a total of 7 weeks (2 weeks and 5 weeks respectively). I was completely off the drug for 4 full days and then tragedy hit and my life changed forever.
The adverse reactions:
Achilles Tendon Damage:
September 4th was my last dosage of the Antibiotic. On Sept 5,6,7,8 I felt pretty good. Then in the middle of the night on September 9th I was awoken by a stinging feeling in both of my Achilles tendons. As the night progressed the pain got worse and worse. By morning I sat up and attempted to feel (rub) the tendons. I placed my thumb on the insertion point of both tendons (just above the bottom of my foot). The tendons (inside, just under the skin) had a coarse “sandpaper” feeling to them. Almost like there was about 50-100 tiny BB’s under my skin in an area about 3 inches round. That was the last time I was able to touch the left tendon for 4 months. The pain was so severe that I was unable to walk, touch it, wear a sock or shoe. The pain was so intense that even grazing the tendon would “send me through the roof”. The left tendon was purple in color and swollen. It was on the verge of tearing. Within 2 days I saw a specialist who immediately immobilized the entire foot with a boot on the left side and prescribed a lift on the right side. Surprisingly the orthopedic had seen this reaction before and was familiar with it. I wore the immobilization boot for 3 months, forced to wear slippers for 3 more months. Started wearing shoes and socks after 6 full months. The pain was unparalleled with anything I have every felt in my life.
I never tore a tendon. I took it seriously and did not take a single step until it was evaluated and immobilized. I then rested for 5 months. I laid in pain and waited for better times.
Morning Paralysis:
One week after I stopped taking the Antibiotic the paralysis set in. For 3 weeks each morning the entire left side of my body would be paralyzed each morning as I awoke. It took up to 5-10 minutes to “pull myself” out of its grasp. My entire body (only on the left side) was unable to function at all or move at all each morning until forced. My jaw was the worse, I would not open my mouth for several minutes. The only way to regain movement was to, with all my strength, attempt to move the leg, arm, neck and jaw. In the same three weeks each and every night my body would enter into a full involuntary stretch every 15 minutes throughout the sleeping hours. Tendons throughout my entire body were in severe pain during this time (foot, legs, hips, arms, jaw) which made these stretches excruciating and unable to prevent as they were involuntary. These symptoms lasted about 3 weeks and then slowly faded over 2-4 more weeks.
Peripheral Neuropathy:
Daytime:
About 2 weeks after stopping the Antibiotic I began getting severe pain in my lower back, sides of my backside (butt) and the back of my legs down to the knee. The pain was a severe burning, sore pain that lasted 24 hours a day 7 days a week. The pain was amplified by sitting down or lying on my back (unable to much else without the ability to walk due to the Achilles damage).
Nighttime:
Each night as I went to sleep my left or right arm would react to any pressure on either one. If I laid on my side (one arm) or on my stomach (both my arms) would do several things. The palm would feel like it was on fire (severe burning) and the two smallest fingers would freeze (sever cold). The arm would lose all feeling (numbness). This would last about 5-15 minutes each episode. For about 12-14 weeks I was unable to sleep in any position except on my back with arms on both sides. I slept like a mummy each night. Any deviation would cause extreme pain within minutes.
Bathing:
I attempted to take a few baths during this time. Each time 10 seconds after hitting the warm water my Achilles would sting and my left arm would begin to tingle, hurt and then become completely paralyzed within a few minutes.
The pain (all the pain) slowly began to diminish to a smaller and smaller area until it was completely gone. This took almost 6 months but just about all nerve pain seems to be gone.
Severe Leg and Knee Tendonitis
About 8 weeks after the Antibiotic the insertion points of the tendons around the knee started an acute stage. Any movement inward or fully extended out would cause excruciating pain. The pain resonated from about an inch below the kneecap and an inch above the kneecap on the inside portion of the knee (about 6 o’clock and 2 o’clock on the right knee and 6 o’clock and 10 o’clock on the left if you are looking at me).
The leg tendons started excruciating pain 4 months after I stopped the Antibiotic. The pain resonated from inside the crease where the leg attaches the abdomen (sideways from your belly) as well as the tendons in the front of my legs that stretch down to you knees.
The pain in both the knees and legs was so excruciating I was unable to stand (always with knees slightly bent) for more than 30 seconds for about 3 months, I could only stand for 2-5 minutes for 2 more months and at 7 months I could stand for up to 15-20 minutes.
At 9 months I could stand for up to 30 minutes.
My knees have also what most sufferers call “a full feeling in the knees”. That is an understatement. When I stood up for my 30 seconds a day both knees felt like they were about to explode and come right apart. This lessened as each month continued on.
Vision Damage:
Right after I stopped the Antibiotic, each evening as I lied down for bed my eyes seemed to bounce for 5 –10 minutes. They would spasm out of control. About a week after I stopped the Antibiotic I looked up to a blue sky and to my amazement I saw hundreds upon hundreds of small string fragments that seem to “electrify” back and forth up and down the fragment. They were white or silver in color. My vision at this time was poor. My entire field of view was “snowy or grainy”. Kind of like a TV show that is not coming in right on a broadcast. I was unable to focus on objects for more than a few seconds and my depth of view was poor. Everything looked flat. Although I am speaking in past tense, sadly these reactions have not changed. My vision is just as bad as day one and has not improved in 9 months.
Ear Pain, Pressure Dizziness.
About 8 weeks after I stopped taking Antibiotic both ears filled up with pressure and pain. The pressure was directly inside the ear drum (close to the jaw) 24/7 and would spasm in the form of systematic throbbing (like someone put a plunger on my ear and pressed in and out each second. The pain was a stinging pain on the temple and behind the top of the ear. I would get episodes of stinging and pressure throbbing all day long. The pain lasted about 15 weeks and then disappeared. The spasms also stopped. The full feeling or pressure still remains after 9 months. Tinnitis and dizzy spells were also there and remain till this day.
Swollen Glands:
About 8 weeks after stopping the drug many of the glands in my body began to swell. The most apparent were in the groin (the crease) and the neck. They feel like marbles under the surface of the skin. It is obvious that this is an auto immune reaction to the drug. At 9 months the glands are still swollen, no change.
Vasculitis:
It is the inflammation of the capillaries. The obvious symptom of this is small red spots that appear and disappear over the coast of a few days on the body. I at all times have at least 20-50 spots on my legs (less on my arms). They are the size of a BB, they do not hurt, but show the problem exists which affects many other areas of the body. I had two vasculitis large rashes over the first 6 months after taking the antibiotic. Each one was on the inside of the upper leg. The right lasted for 1 month; the left lasted for 3 months. The rashes were persistent red and purple painful and itching with several blisters. Vasculitis is the main contributor to most of the other problems listed on this report.
The Antibioitic causes “a small vessel vasculitis, a narrowing of the clear inner duct of the smallest arteries and veins that supply oxygen, nutrients and remove the byproducts of their metabolic activity. The vasculitis is massive and arise immediately (in allergic reactions) or has a progressive onset that becomes apparent only long afterwards when the organs and tissues are symptomatic after a progressive ischemic (blood flow deprivation) process.
The vasculitis could be an inmuno mediated deposition of immunological complexes in the walls of the vessels, which in turn would explain that symptoms are much pretty the same for some people that have taken just one pill and for those that have taken more than 200.”
Spasms (urinary and intestinal)
This is the most uncomfortable portion of the adverse reactions to talk about but it was so painful I want to disclose it. In the initial days of stopping my Antibiotic I began having urinary and lower (very low) intestinal spasms. The only would happen at night, while asleep. The intestinal spasms (very low) would hurt a lot, the urinary would not hurt but were more rhythmic (every few seconds for ½ hour intervals). I have heard several other reports so I mention it. It took 8 weeks to completely stop.
Joint Cracking
Joint Cracking is probably the most noticeable of all my ADR’s to others as is was the loudest. From day 1 to about 3 months every joint in my body cracked 100 times their normal amount. This did lessen as the months went on; at 9 months they crack about 10 times the amount. The cracking does hurt on occasion, but for the most part is painless.
Hair loss
Soon after I went off the Antibiotic I lost a lot of hair. It thinned on my head in many areas. I lost a great deal of hair on my legs. It did all grow back but took about 8-10 months. No pain, so not a big deal.
Weight Loss
On my last dose of Antibiotic I weighted 152 lbs. 8 weeks later I weighed in at 137 lbs. For 8 weeks my body refused to let me eat. Each bite brought nausea. I later found that this is a forced fast as your body is switching to a fighting mode. I lost 10% of my body weight and for 4 months was completely pale. A personal friend of mine told me that he his wife in confidence that after seeing me a few months into the reaction he did not think I would not be around much longer and I might “pass away”. I simply looked awful. After 9 months I am 147 lbs (5’9’’).
Pain and Painkillers:
I felt more pain in the 6 months after taking the Antibiotic than I have felt in the 36 years I had been alive. Early on I decided to research and read hundreds of reports of victims of these adverse reactions. I saw early that anti-inflammatory agents like aspirin and ibuprofen should be strictly avoided as they make things worse. Although narcotics were endorsed by most sufferers, I decided early on to endure as much pain as possible. I took vicoden for only 2 weeks during the most painful time (at a time that only death seemed to be my only escape) and I only took ½ of a pill twice a day just to take the edge off. The pain was so severe that although I did not consider suicide, for many weeks I did continually ask God to take me away (to kill me) and allow me to live in His presence forever.
I have seen video of people suffering from these ADR’s just sit in pain and cry from the pain and despair. It brings tears to my eyes, as I was once like that.
I have a genuine belief that that during the healing time all drugs should be avoided and so that’s what I did. I have seen too many reports about drugs inhibiting the healing process and I saw too many reports about people who have been permanently disabled by these adverse reactions. I wanted nothing to interfere with the healing progress so I endured as much pain as I could, and I did it and I am glad I did.
Diet:
I have always believed in a healthy diet. Even more so since the ADR’s. My diet for the past 9 months consists of the following and ONLY the following:
Meats
Fish, Fish and more Fish – only line caught, nothing farmed –
try reef fish like snapper if possible,
Once in a while (Antibiotic free chicken)
Fruit and Vegetables:
Tomatoes
Apples
Mangos (be careful, cousin of poison ivy, the skin can cause blisters)
Bananas
Blueberries (started after 4 months, 1 cup every day)
Raspberries and Blackberries (a few times a week)
Cherries
Olives
Broccoli
Strawberries (not too many if you get Kidney Stones!)
Red leaf and Romaine lettuce and other mixed greens.
Minestrone Soup (beans, corn, peas, sauce, herbs, salt, carrots)
Nuts and Seeds and Grains:
Pumpkin Seeds Raw (1/4 cup every day)
Peanut butter (natural)
Cashews
Pistachios
Sunflower seeds
Whole Wheat Bread
Whole Wheat Pasta
Beverages
Filtered Water and only Water – nothing else to drink.
Oils
Extra Virgin Olive Oil only.
Dairy
Antibiotic free skim milk
Yogurt
Things I do not have and have not had for 6 months!
Coffee
Candy
Chicken (unless antibiotic free), Pork or Beef
Sugar
Cheese
Soda
Beer
I took diet to the extreme, when I heard these adverse reaction could be possible permanent, I went drastic. A side effect of this was my cholesterol went down 50 points – every point was bad cholesterol.
My reason for the extreme diet was a story I heard in the old testament of the Bible. Daniel the profit was told that the soldiers were very weak. He was instructed by God to feed them only fruits and vegetables. Soon after they recovered and were the most effective soldiers in the military.
Exercise:
The general opinion is – take it easy. No pain, no gain does not apply here. Do not exercise till long after the pain is gone. For me I had to wait 5 months before I started doing any kind of real movements. I took a quote from a friend of mine who suffered – he said “after the acute stage is over you need to stretch past the pain for the tendons to get relief” I tried it and it worked. I stretched a little (it hurt) I stretched it again – it hurt less. For about 2-3 weeks I stretched about 5-6 times a day to relieve some of the pain, but again only after 5 full months.
Supplements:
Early in my research I found that many people were taking several supplements to speed/enhance the healing process. I decided to research and choose those I agreed with taking. I decided on:
1. Vitamin C (ascorbic acid) 250 milligrams twice a day
2. Vitamin E 400 IE once a day
3. Centrum multi-vitamin (1/2 in the morning 1/2 at night)
4. Fish Oil – once in the evening
5. Cod Liver Oil (once on the morning)
6. Co-Q10 (30 Mg once a day)
7. Prime Rose Oil
8. Calcuim/Magnesium (caused sever abdominal pain, had to stop after 3 months)
9. Ginko Biloba (started after 4 months, 60 Mg twice a day)
10. Vitamin B complex (B-50) stopped after 4 months
11. Glucosamine/Condrdine/MSN – 2 pills (1 morning 1 night) (4 pills was recommended)
WARNING:
Magnesium gave me sever abdominal pain after 3 months of taking it with no problem
Ginko Biloba gave me a flush feeling in the face each morning but I take it anyway.
Ginko Biloba is a blood thinner – do not take it if you are on any bloodthinners or
Taking aspirin therapy.
Handicapped equipment and facilities
For three months I kept saying I am going to get better soon I don’t need a handicap driving pass, I’ll just wait. Well I later found out that the more I got out the better. I spent 3 months with my leg and foot immobilized, 1 month confined to a wheelchair and 1-2 months walking with a cane. Do yourself a favor and use the facilities and get a driving pass. It will help you get out of the house and do things. I had no idea how important these things are for disabled persons. I only had a glimpse at their life and I see how much it helps. Still after 9 months I still once in a while use those electric scooters in Walmart and Target but I can walk into the store on my own and walk back out again and it feels great.
How I feel today
It has been 9 months since my last dose. I still have many of the symptoms I once had and still have a lot of pain, but I am able to do normal tasks again. I cannot run and can only walk about 1000 feet or so, but it feels so good to be able to do that. I am truly blessed. I went from not being able to brush my teeth, nor dress myself for months to working in the yard and playing badminton with my 4 year old daughter. We walked on the beach the other day. I almost cried. I had prayed for that day for many months and God My Healer gave it to me.
Two things I have not stopped. I eat healthy and only healthy. If it is not good for me it does not go in my mouth and no matter how bad the pain I try to take no pills!! In the past 6 months I have taken 2 Tylenol (1 on each of two occasions).
Was anything NOT affected?
I add this section because I have a strange report. Each and every joint in my entire
body from toes to jaw was affected and in pain, except one. My elbows. They never hurt once, nor cracked once. I have no idea why and I find it strange. Fingers, wrists, shoulders, everything, just not the elbows.
Any foods make it worse?
Meat that is not strictly stated “antibiotic free”. Any meat!!!
Soy for some reason makes my legs weak and hurt.
Advice for sufferers - UPDATED
Due to the news on the new Black Box warning and a severe relapse I wanted to provide a 5 year update (July 8th, 2008).
After 5 years my limitations still existed. I cannot run, I cannot lift anything heavy (last time I lifted my daughter was in 2003 (she was 3). My diet has changed dramatically to no meat whatsoever expect for wild caught fish. It has become apparent to me that any amount of flouroquinolones means a worse disability so it's simply not worth the risk. Also no chocolate and other goodies due to soy lecithin (stay away from it and other soy products).
I had a serious relapse about 2 months ago (April 2008). I went to an optometrist for some eye irritation and she gave me Blink Tears (made in china). After using the product two times, the tendons in both upper arms became so inflamed I could not wash my hair for two months. Many of the old symptoms came back and I am now on a new road of recovery in which I have no idea how long it will take. The product does not mention any flouroquinolones, but there in there, I know, because I am crippled once again waiting for better days. The only ingredient suspicious was Sodium Hyaluronate (made from poultry of course)
I wanted to mention several things of great importance.
First, reading www.fluoroquinolones.org is the first thing you need to do. Things like Soy Lecithin (most chocolate), Chicken and Fish Oil Capsules were huge problems I encountered and found confirmation of these reactions there.
I did want to mention that I was able to find something that I feel is a must for any floxed victim. I was able to reduce some pain by taking two supplements together and also using a fan. The pain reduction was measurable (that means obvious). My entire back side from my lower back to my knees (back side) was in so much pain I had to try a few new things. I began experimenting by blowing a fan on my entire back side before I went to sleep. At first it seems the fan would cool off the burning sensation on my back side, later I began to consider that maybe the cooling effect was working to lower the energy needs of the area by cooling it off (kind of like why people who fall in ice water can live for hours without breathing). Regardless of why it helps, it helped a lot and allows me to sleep, instead of lie in pain all night.
The other thing I found was to take both Bilberry and Grape Seed extract. I take SolarRay One Daily Bilberry and also Natural Factors Grape Seed Extract 100mg. Within 4 weeks the benefits were very measurable and obvious.
I recommend any floxed victim with pain, try a fan (cool off the area of pain) and try the bilberry/grape seed extract for 4 weeks to see if you get any relief. With the new relapse, have been using both for 2 months and am hopeful I will recovery quicker this time. Swimming also seems to allow joints to move better with no weight, which also helps.
Outside of swimming, a fan, Bilberry and Grape seed extract, I have found nothing else that helps much.
Final advise, stay away from pain killers early on. I found a disturbing coloration between those who took pain killers and those who had nerve pain that never went away. I had a tremendous amount of nerve pain and most if not all went away, I had read that chemically induced nerve pain normally repairs, so I waited it out and it seems like it did.
A friend of mine said (David), things will get better, and they did and still are.
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