posted
Hey guys- So I made an appointment and got my huge packet of patient info in the mail from "Dr. C" that I've heard so many great things about. I am really creeped out now.
I've been on antibiotics for a year now, being treated for one thing after the other...Not Lyme. I feel that the antibiotics have really messed up my system, but who knows because I feel like crap all the time.
So, when I was reading through the packet, it said antibiotics can kill you? WHAT??? Then I read how treatment for Lyme and the disease itself is controversial. I'm sure many of you can sympathize with being diagnosed with umbrella diseases, so my question is: If ANY of you were like me, and sick for so long, searched and searched for what could be wrong, seen so many doctors...How did you know your Lyme diagnosis was real? I know the symptoms were there, but how did you tell yourself it really was Lyme, and not another umbrella disease? This is where I find myself. I am tired of feeling this way, but now that I think I really have found the proper diagnosis, I'm scared now. Did any of you go through that fear, and how did you combat it? Also, tell me about the antibiotics...
Posts: 11 | From Missouri | Registered: Apr 2007
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ByronSBell 2007
Unregistered
posted
I know exactly how you feel, I was in your exact same shoes 4 months ago! I am seeing Dr. C as well and it has been 4 months.
I went through 23 doctors before I had a lyme disease diagnosis. But I knew right away that when I was finally diagnosed with lyme that THIS WAS IT! I had finally found what was wrong with me after all this time...
Trust me, if you dont have lyme disease... Dr. C will find what you have! He is a christian guy and he wont give up on patients like 97% of all the doctors in this country will. Your first appointment will prob. be atleast 1.5-2 hours long.
For the ABX, I have been a little worse constantly ever since starting them, I think it is mostly due to the die-off reaction of the lyme and he said this is typical of most of his patients. Alot of others on here are being treated by Dr. C as well. Hopefully they can give better insight than I can.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had tick bite, rash, onset of illness. No mystery there.
I feel sorry for you people who don't have a clear idea.
I know I am lucky!!!
-------------------- 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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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I had Lyme for 40+ years before I was finally correctly dx'd.
Although I have still not tested positive, I herx from the abx and have had improvement after a year of treatment, so I know it is the correct dx.
Hang in there, and go forward with your appointment. A good LLMD will not treat you if you do not have the clinical symptoms and/or a positive Igenex test.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I believe that ILADS is requiring their member physicians to tell all their patients that antibiotics can kill you. Our LLMD told us that when he started my daughter on mepron.
He said it in those words, "I have to tell you that antibiotics can kill you. But, we don't thave a choice, she needs to be treated". I considered he covered himself, I understood, and we proceed with treatment...with caution, as intended.
Ask anyone with a penicillin allergy. This is a risk we take when we start treatment.
But, we have very few alternatives unless we go completely natural. And, even then, some herbal products can give you a reaction.
You are indeed very fortunate to have a doctor who will risk his practice to give you a chance at life. The number of doctors willing to treat us is dwindling.
Like you, my daughter does not remember ever having a tick on her. We believe her illness was mosquito caused. Her symptoms started out like any other illness...headaches, stomach aches.
Then progressed to mental issues like depression, anxiety, night terrors, insomnia.
Next came the lungs, joints, muscles, fatigue..all 10's on the 1-10 scale.
She has never tested positive for Lyme. But, through the last year and a half of treatment, she has tested positive for bartonella and babesia.
posted
Never fear! You are in VERY good hands. Sure, you can die from ANY drug....people do every day!
But you can also die from untreated Lyme. Get tested!!!
This is a very complex disease. Leave the treatment to an expert.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
It is all very confusing. That is why it is so controversial. If it were straight forward, then we wouldn't have to see LLMD's. Every doctor would recognise it and treat accordingly.
I think we are headed to that point.
Get tested, and if positive.. get treated. What choice do you have?
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Eventually everything else gets ruled out. So when I start doubting it's Lyme I remind myself there is nothing left for it to be. And what other disease has so many crazy symptoms? It's the first diagnosis that made sense with ALL my symptoms!
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I forgot to mention another indicator of Lyme, which did show up for me, is a low CD-57 test. I know it helped in my clinical dx, and would help my LLMD back-up his dx if he ever had to do so, which I certainly hope doesn't happen.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
In the beginning I couldn't get my rheumy to commit to a diagnosis. I started reading disease symptoms, and narrowed myself down to rheumatoid arthritis or lyme. Then, after ready many, many personal stories of lyme, I started to put the pieces of my own picture together, and grew in the conviction that I had lyme.
To further cement that idea, I was started on an IV of rocephin, and I had a herx from hell that crescendoed for one week and then backed down and started my improvement.
All this while my lyme titer was rising every month. At the end of three months, even after my IV, I finally hit a positive test of 1.2, testing done at Danbury Hospital in DAnbury Connecticut.
With all this being true, I still could not get my insurance to cover my IV and rolled into a 12 month battle to get it covered, which I won by the way.
It was at this point that an infectious disease doctor tested me for BAbesia and Bartonella, and I tested positive for Babesia.
There is no room to doubt that a tick got me. In fact, my exposure was so great as a girl scout leader and avid gardener that it is silly to think it is anything else.
I never question it. I am over four years into treatment and still treading water. If I drop treatment, I go under pretty quickly.
I journey has taken me to several lyme literate medical doctors.
I will just have to keep on keeping on until one day some treatment cracks the entire lyme world wide open and cures all of us. It's like breathing, sleeping, etc.
Don't feel confused. Dr. C. is fully versed in all he needs to know to rule out all possibilities. IT is not your job to do this, it is his, and he will.
If you herx on antibiotics, you can be sure it is lyme. But don't expect to quickly get well, although it has happened for some. You have to keep the faith and persevere.
Hope that helps.
Posts: 1034 | From North Carolina | Registered: Aug 2003
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WildCondor
Unregistered
posted
Welcome...
Please feel free to email me if you need help with anything, or explaining all of this Lyme stuff.
Antibiotics have risks, just like everything else, allergic reactions, superinfections, and septic shock, infections from IV lines. Then there is clostridium difficile you can get due to antibiotics altering your gut flora, lots of things. Lyme and the co-infections are usually much scarier than the risks of antibiotics.
Arm yourself with info...and also it's a good idea to see if you can get to a better LLMD.
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