We all need our spirits raised from time to time, and this shows there is hope for a near full recovery.
Brief story...
I was bit by a tick 6 years ago..., over the past 6 years the tick bite "bubble" would come back every few months, and would flair up every 2 to 3 days when I was at my sickest.
I was to the point of death... I thought it was all over. I had to quit my job, I was seeing 2 to 3 doctors a week..., losing 2.5 pounds a week with no explanation(then gained back 20), I had pain everywhere, behind my left eye, in my throat, my side, radiating up and down my back, my knees etc. I knew nothing about lyme disease, neither did my doctors. I self diagnosed myself through this website(lymenet and other similar sites honestly saved my life) and began seeing a LLMD in April of 2006. I couldnt remember what drawer the silverware was in, I completed 55 house sales in 18 months in real estate, and at my sickest could not even remember how to fill out a simple contract. I had given up, just waiting to die. I even lost my sense of taste and smell..., it was all over.
I will post my symptoms when I was at my sickest, and my current symptoms... now keep in mind this was aggressive treatment begining in April, MAy, and June... so a little over threemonths of treatment, with a doctor that actually listens, and spends 60 minutes with me on the the original appointment, and 20 minutes or so on the follow up appointments.
This should raise everyones spirits, as I was in VERY VERY bad shape, and now have my life back, and am about 85% better.
Symptoms when I was at my sickest...
Rash at site of bite Raised rash, disappearing and recurring (Never had a bullseye rash)
Head, Face, Neck
Headache severe over left temple and left eye. Pressure in Head Twitching of facial and foot muscles(near constant) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Sore throat, clearing throat a lot, hoarseness, runny nose
Eyes/Vision
Double or blurry vision Increased floating spots Pain in eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes
I lost about 60% of my vision, I could not drive at nite AT ALL, and could barely manage driving during the day. MY vision was so scary, thought I was going blind... even my own relatives did not look the same.
Ears/Hearing
Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears
Digestive and Excretory Systems
Diarrhea Constipation Irritable bladder (LOST ALL COMMUNICATION WITH MY BLADDER, only would feel a slight pain when I had to urinate... I had to self regulate my entire body). Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
Musculoskeletal System
Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, Muscle pain or cramps INflamation in back, eye, and side.
Respiratory and Circulatory Systems Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats
Neurologic System
Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness LEft side of my body warmer then right side of body EXTREME FATIGUE UNABLE TO TELL THE DIFFERENCE Between hot and cold(I could be outside in 20 degree weather and not even want to put a jacket on... it would just feel like a cold or warm wind brushing against my skin) INTENSE night sweats, and waking up every 45 minutes, unable to stay asleep. Brittle toe nails, my pinky toenails did not even grow in for months... kept breaking off.
Psychological well-being
Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety
Mental Capability
Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive Sexual dysfunction Testicular or pelvic pain
General Well-being
Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes (NECK, groin, armpits) Unexplained fevers (high or low grade) Continual infections (sinus) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well.
Increased affect from alcohol
I had EVERY ONE of the above symptoms, every single one, and most to the EXTREME, all happening at once, being bounced from one specialist to the next.
These(after just 3 1/2 months of intense treatment) are what remain:
-Sore throat -Mild Streaky vision -floating spots - some even look like dead spirochetes. -Mild Pain behind left eye -Soft stool -Mild INflamation in back, eye, and side. -loss of appetite -Symptoms occasionaly change and migrate. -Pain migrates (moves) to different body parts
I am about 85% better... and hopefully will be all better within 6 months, just hope I don't relapse. I hope and pray that everyone comes to a full recovery, and this support group is exxcellent, I hope I do not relapse(most do) but this is the best I have felt in a long time. Please feel free to share your own success story, or post any questions... I could not have done it without this site, or the support of everyone.
Sorry for the long post, but I felt it was important, as a recovery is possible, even the sickest of the sick.
[ 16. July 2006, 10:24 AM: Message edited by: Jadedemolush ]
Posted by seibertneurolyme (Member # 6416) on :
Very happy for you, but at the same time find your story extremely depressing.
Hubby was undiagnosed for 1 1/2 years, then basically untreated for another year, then very non-aggressive treatment for last 3 years. In many ways you sound much sicker than he ever was even at his worst.
Please share details of treatments -- meds and doses. The other question is, how bad were your herxes and how did you handle that?
We have always been hours and many states away from our LLMD's and I have been afraid to treat hubby aggressively. And now after all this time there is no money to do that even if I wanted to.
Thanks,
Bea Seibert
Posted by JeffM (Member # 8919) on :
Jaded,
What was your tx?
Thanks for the hope.
I want to share this with my daughter who has lost hope.
Posted by Jadedemolush (Member # 9090) on :
Sorry Jeff, what is TX?
Please share this with her, trust me, I GAVE UP... and now look.
Posted by seibertneurolyme (Member # 6416) on :
TX is an abbreviation for treatment.
Jade, I think it would be ok for you to share your treatment here in your post as long as the docs name is not mentioned.
Thanks for the email. It was very helpful.
Bea Seibert
Posted by Al (Member # 9420) on :
Your post is uplifting; I could put my name on it and that would be me; The only addition I have with my symptoms are, severe dizziness all the time,dehydration and passing out from sudden blood pressure drops about 2 times a month. I tested pos. on 10 bands western blot and started treatment, 3 weeks now. House bound for 3 years and bed ridden at times.
What were/are the medications your dr. put you on,and were you treated for co/infections?
Posted by Jadedemolush (Member # 9090) on :
Remember Every drug works differently on different people.
First 45 days
Levaquin 750/500 back and forth 500 mg Zithromax PLENTY of immune support and vitamins... taking about 30 pills a day.
Second 45 days
Levaquin stopped(bad side effects) Rifampin 300 mg twice daily PLENTY of immune support BROMOLINE added 6 pills a day. Cats claw added 3 pills a day.
LAst 15 days
Levaquin stopped(bad side effects) Rifampin (2)300 mg (1200mg total)twice daily PLENTY of immune support BROMOLINE added 6 pills a day. Cats claw added 3 pills a day.
Herxes were generally diarriah, increased pain and visual problems... I just dealt with them, plain and simple, sometimes crying while laying on the floor.
MODS... please do not delete this, unless it is a severe violation of the rules... as it should be helpful for many.
I also had severe dizzyness for THREE months straight.
I am happy this post is helping some... when I was at my sickest the other other success stories also helped me.
I'm not a full success yet, but getting there.
By the way, my only positve bands through Igenex were 41, 66, and 39 IND.
Goes to show u even the best labs do not get em all... but IGENEX is an asset to the lyme community.
I had bart and babs symptoms, including weird red rashes all over my chest
Posted by Jadedemolush (Member # 9090) on :
AL, did you also have bladder issues? If so, what were they?
Posted by Mathias (Member # 5298) on :
What protocol(s) was used? Also send you a PM for the name of the LLMD.
Posted by suki444 (Member # 4261) on :
what is Bromoline?
thanks emma
Posted by VLSer (Member # 8189) on :
Bromelain is a supplement derived from pineapples. I have been on it more than once to help bring inflamation down. It did not seem to help me, in fact it seemed to make things worse- but in my caese everything seems to make things worse.
Here is a website with more information- the site makes it seem like a miracle, but keep in mind, they want you to buy it.
good luck! And I am so happy the post'er is doing better- it does give me hope. But at the same time I am envious that the recovery is happening so quickly.