I'll try to be brief. I believe I've had Lyme for at least 12 years but the medical professionals never steered me in the right direction and even when I presented with a large, oval red rash on my hip and flu symptoms, no one would treat me because my tests kept coming back negative.
I have so many of the Lyme symptoms which each year keep adding on. I'm getting scared. The more I read about Lyme the more scared I become. It becomes harder with each month with the joint pain, headaches, shooting pains,etc.
I've seen many specialists and have ruled out many diseases. Therefore, since no one can find anything wrong and my Lyme tests come back negative, I was "officially" diagnosed with Fibromyalgia a few weeks ago. Looks like my own PCP has given up on me.
She does not want to treat me for a diagnosis that has not been confirmed because of the nasty side effects from the antibiotics. She said too risky.
I have looked up the numbers of 3 doctors with knowledge of Lyme who practice around my area and will call them tomorrow to make an appointment to at least tell my story and get comprehensive labwork done. I will not rest until I get an answer from a Lyme specialist.
How many Lyme sufferers out there have been told they must have something else or their doc has given up pursuing Lyme as a possibility? Are the side effects of the meds really bad? Will I become disabled and unable to work? I am really scared.
Posted by dmc (Member # 5102) on :
quote: How many Lyme sufferers out there have been told they must have something else.... ?
This might be why Lyme is on the rise, since this opens up the blood-brain barrier to pathogens such as Lyme, and if you've been sick for 12 years, that takes you back to 1998...right when the cell phone boom took off.
But to answer your question...because they haven't been personally affected - yet. Seems most doctors who believe in chronic Lyme either have it, or they have a family member who does.
Posted by Keebler (Member # 12673) on :
From the May 2007 issue of Clinical Advisor (for nurses)
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
Excerpts:
[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . .If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST -
Posted by sixgoofykids (Member # 11141) on :
There is a risk with any medication. For any treatment you have to weigh the risk with the benefit. Let's take strep throat .... would you take an antibiotic to treat your strep throat? Probably so.
Well, Lyme is a more serious infection that is more complicated to treat. Treatment often takes a very long time. There is a lot of money to be made off Lyme not being a long-term illness (www.underourskin.com), therefore, the person at risk for you taking long term antibiotics is your doctor.
Your doctor would be scrutinized by the medical boards and hounded by the insurance companies if he prescribed long term Lyme treatment for you.
Yes, there is a risk to taking antibiotics. There is also a risk to not treating Lyme Disease. This disease was close to killing me by the time I got diagnosed. I was bedridden. When I started treatment I could not walk without help. I was diagnosed with Somatization Disorder, my disease was caused by past emotional trauma and I needed emotional help according to my so-called doctor.
Mind you, I had a CDC positive Western Blot that the doctor who diagnosed me with Somatization Disorder had done.
My LLMD had chronic Lyme Disease. Now he treats it.
BTW, I am well today. I am a pilates instructor and mother of six children. I lead an active lifestyle and people who meet me today cannot believe that only a couple years ago I needed help walking.
Posted by BackinStOlaf (Member # 23725) on :
quote: How many Lyme sufferers out there have been told they must have something else.... ?
I was given anti-anxiety meds because the doc didn't think I had Lyme.
The other doc who had me take a lyme test did not return my calls when i wanted the results and finally after 2 months I got a hold of them and they told me the test came out borderline and I should go to a specialist. I guess he didn't think lyme was so important that i can just wait 2 months without treatment. :/
We all have stories like this
Posted by LightAtTheEnd (Member # 24065) on :
I pulled a nymph deer tick off me, 3 days after I was on a farm walking around tall grass.
A week later, I got a sudden fever, joint and muscle aches and felt like the flu except no respiratory symptoms. I felt like I would faint or fall down walking around at work.
I wondered if I could have Lyme disease from the tick bite, but I didn't get a rash. If I had known that many people never get a rash, I would have gone to the doctor right then. I didn't save the tick, to get it tested, oops.
Six weeks later, I had another flu-like fever episode. At the time, I did not relate the daily joint/muscle aches, stiff neck and bouts of fatigue to the fever episodes. Still, because of the second fever, I knew something was not right and I was sick with something. I also knew that whatever it was, I had never felt that way before. These fever attacks also correlated with PMS, which I thought was significant but strange.
I went back to my doctor, told her all this, and she laughed and said, "You just caught a virus. Go home and take some Advil."
I protested that it made no sense that I would have caught 2 viruses, identically not causing respiratory symptoms, in the summer, starting 10 days after a tick bite.
It took me a couple more visits and some stacks of research to convince her to test me for Lyme (which was negative) and to give me some antibiotics. She probably still doesn't believe I have Lyme.
She did admit it was more than a cold virus, and offered to send me to an ID duck or a rheumatologist. She offered me pain meds, sleep meds, antidepressants. But she was very skeptical about Lyme doctors.
So I did months of research, found my own LLMD several states away, and finally got my diagnosis and treatment. Which I can barely afford, despite having a good job and excellent health insurance, so I have had to ask for money help from my family.
It took a few months to convince my family that I had Lyme, or that my LLMD was giving me the best treatment for it. They were skeptical because they believed my doctor. My mom once told me I should stop worrying so much and "making myself sick." I finally was able to convince her, several months later, that FIRST I got sick, and THEN I got worried, not the other way around.
I am one of the lucky ones because I figured it out and started on an antibiotic within 10 weeks instead of 10 years.
Literally EVERYONE around here has heard the same thing before, usually multiple times from multiple "respectable" doctors.
You are far more likely to become disabled and unable to work due to untreated Lyme than due to effects of treatment. I have continued to work while being treated, though I have some rough days where I am unproductive, and I wish I could stay home.
People can have side effects from various drugs, especially since we take them in high doses and in combination, but feeling bad after starting a drug is more often a herx reaction. You might have herx reactions at first that could make you feel worse when you first start treatment (and you might want to take some time off when that happens, if you can), but in the long run that is how you are going to get better and recover your energy and your life.
Being on antibiotics for a long time can kill the "good bacteria" in your gut, so you should take probiotics (nonprescription) the entire time you're on antibiotics, but more than 2 hours apart. If the good bacteria die and leave a vacuum, then you might get a yeast infection which can affect your digestion badly and cause other nasty symptoms. I just got my first attack of that, but I got over it easily within a week or two by taking a short break from antibiotics, keeping carbs out of my diet, and taking anti-yeast medication and natural remedies.
So there is some risk of opportunistic infections with antibiotics, like yeast, but in general they can be prevented or dealt with if they happen and do not cause permanent damage.
In fact, most or even all of what Lyme might do to you appears to be reversible--even the terrible brain and heart effects and bad arthritis that some people get. When you get well from the Lyme treatment, those things go back to normal.
Lyme also lowers your immune system in such a way that dormant viruses can come out to play. I have noticed this particularly soon after starting a new antibiotic. Usually the viruses don't need to be treated because they don't cause extreme symptoms, and they will go dormant again when the Lyme treatment is successful.
Be sure you go to a real LLMD ("Lyme Literate doctor"). Some Infectious Disease doctors will tell you that they deal with Lyme, but they do that by telling you that you don't have it, refusing you treatment and sending you away, possibility humiliating you first on the way out, before sending you a huge bill.
You can find recommendations for LLMDs if you post in "Seeking a Doctor" on this forum. You can also post "Has anyone seen Dr. X in State Y?" to get feedback on a particular doctor. Don't post the doctor's full name or city, but you can say it in a PM (private message).
Posted by julier212 (Member # 26408) on :
I have been struggling with symptoms for the last 10 years. I was diagnosed with Fibromyalgia,TMJ (jaw stiffness, pain), and migraines at the age of 18. I was diagnosed with anxiety/panic disorder when I was 22. I also have been suffering from chronic UTI's since I was 18. I've had hives breakouts here and there, enlarged lymph nodes, and several colds/flus each year.
Last summer I had a huge 10 inch bulls-eye rash on my thigh and was pretty sick with flu-like symptoms. When I went to the dr. she said that I should be tested for Lyme, but it came back negative. Now, a year later I went back to the dr. with numbness/tingling in my arm and knee/back pain and abdominal discomfort. She did all sorts of tests, and diagnosed me with beginning arthritis. I asked if I should be tested for Lyme again, she said no because Lyme is so rare in MO. That's when I registered on this site, and learned soo much about this complicated disease. Seems like we need to learn for ourselves and support each other! Because of what I found out on here, I got an Igenex WB, and it came back positive for Lyme.
You and I aren't crazy to think that all of our symptoms are tied to one thing! It just makes sense, which you would think that intelligent doctors would be able to put the puzzle together for us! But as you've learned on this site, Lyme is a big puzzle that most still do not understand, and of course the controversy side of it as well.
Good Luck! And be your own advocate for your health! We're here to support you!
Posted by erikjh1972 (Member # 20964) on :
ask yourself this, suffer for the rest of your life? or try abx? i myself was sick of suffering and started to treat myself before i found a LLMD. the risks do not out weight what will happen to you if you go untreated!!!
Posted by 17hens (Member # 23747) on :
I had a tick, a bull's eye, and symptoms starting 3 days later.
My fp told me I had arthritis.
I tested negative 3 times, and went to numerous other drs who tried to convince me I had lupus or MS.
I found my LLMD in January and started abx treatment.
I've felt bad, I've felt good, but it's all OK because I know I'm moving in the right direction.
In January I couldn't move off the couch. Today I ran my daughter to a friend's, ran to the store, helped a guy on the phone (he's had lyme for 2 years and can't work, looking for a dr), made lunch, and the list goes on!
I haven't had any side effects from abx. All my side effects have been from killing bacteria -YEAH!!
The symptoms I've had during treatment were never worse than the ones I had before I started.
Please find a good ILADS trained LLMD and start your journey to regain your health.
Education and the right treatment will help you fly, fear will keep you rooted right where you are now.
Posted by dld1632 (Member # 27418) on :
Wow. This is all so amazing that there are SO many people out there going thru the same thing. I have an appointment in one week with a LLMD and am looking forward to it.
I need to know ocne and for all if this gut feeling I've had for all of these years is true. I need to either find out I have Lyme and deal with it or keep searching until I find out for sure what it is that I have.
I still hate to clump all of the symptoms together and label it fibromyalgia because the "other" docs don't know what to do with me but I will cross that bridge when I come to it.
After reading all of the postings I've received I'm not afraid anymore. Knowledge is powerful and can help conquer your fears.
Posted by linky123 (Member # 19974) on :
Hi dld,
You came to the right place. Lymenet is a great place for support, and folks here have some really good info to share. Some take the abx route, some the homepathic.
There are other tx as well. Everyone is different. So glad you have an appt. with an llmd. You are right about the 'knowledge is power' part.
We have to find our own way with this disease and lots of research is necessary. The mainstream medical community is no help at all.
They are either indifferent, ignorant, or downright hostile. All of us here have experienced it, so you are not alone.
Don't be scared, you are doing all the right things.
