This might be a bit of a long story. Back on January 1st 2007 I became violently ill. Before this day I was having issues for a couple of months with some light headedness, but thought nothing of it. It started with a trip to the ER. I was having heart palpatations and was very shaky. The ER did an EKG with some X rays and said everything looked OK. They tought I might be dehydrated and sent me home. I then ended up there a couple of days later because my body would not stop shaking. It was the weirdest thing. My legs and arms would not stop shivering. Very scary. Hard to explain.
I ended up being very sick for the month of January. I missed work for the entire month. I had horrible diarrhea for 3 months. I was also very light headed, dizzy, and naseau at times. I went to my PCP numerous times and he had no idea what was wrong. He tought i had some kind of flu virus. Influenza, Norwalk, or something. He did numerous stool and blood tests. Also did CT of all major organs and lungs. Nothing was found. He checked me for food allergies which turned up nothing. He pretty much had no clue what was wrong. I lost 25 pounds in two months and i looked like a zombie. My face was very pale. He just kept waiting for me to get better and kept telling to eat and keep hydrated.
I then went to a GI doctor who told did every GI test imagineable in two months. Colonoscopy, endoscopy, Small bowel series, mri of abdomen, CT of abdomes, pill cam, all kinds of blood work. All he found was some gatritis of the stomach and deudom. He put me on prilosec and zantac for 7 weeks. All the while I still had diarrea, dizziness from time to time and chills. He said there was nothing more he could do for me. He almost seemed mad because he couldn't find anything. Like it was my fault. He basically gave up.
I then went for a second GI opinion. He did a small bowel series, endoscopy, CT of abdomen, and gave me 1 week of flagyl in case of a parasite even though none was found in any of my stools. Everything looked fine he said.
I even tried accupuncture, holistic medicine, wasted all kinds of money. All for nothing.
I even saw an infectious disease doctor who did some blood and stool test. All were normal and she wanted nothing to do with me. She felt I didn't need her help.
I then chnaged my diet about 4 months ago. I only eat healthy organic foods and exercise 4-5 days a week. Still not myself.
I then started looking into lyme. I remember being out in woods a lot last summer doing work for the yard. I developed a bad looking rash in both legs, but assumed it was poison ivy. I had never had it before. Lived in the city before this.
I mentioned this to my doctors and they disregarded it. They said they didn't see a rash and that tests for it were negative. I then mentioned that most tests can produce a false negative. They didn't want to hear it.
I then found this infectious disease doctor in Boston who specializes in lyme. He said a lot of my symptoms could be lyme. He wrote me a prescription for 6 months of antibiotics before even doing the blood work. I'm kind of unsure if I should take these before the blood work.
I notice most people with lyme have a lot of arthritis and joint pain which I don't have. Basically where i stand now: I have shortness of breath on and off. I get light headed, dizzy, and fatigued from time to time. It can get pretty bad some times. I feel like I am coming down with a cold or flu from time to time. I almost feel like I can never get better. Like I'm always sick. My bowel movements still arent' what they used to be and I have only put on about 5 pounds. I sometimes get naseau and feel like I have heart burn. I also have a lot of trouble sleeping. Not matter what I try. I am also very emotional and irratible at times. Crying out of the blue. Things like that. I do look and feel better than in January, but no where near my old self.
I even saw a psychiatrist for a couple of months. Didn't help
I am basically at my wits end and very depressed. These last 8 months have been hell. Not sure what to do. I am afraid of taking all these antibiotics if it is not lyme disease. I was just hoping for some opinions from people on this site. Please help. I don't know how much more I can take
Posts: 11 | From massachusetts | Registered: Sep 2007
| IP: Logged |
Frequent Contributor (1K+ posts)
Member # 5374
Welcome to the board. I am so sorry to hear the story you are going through. Unfortunately, as you are discovering, there are many limits to our medical system.
As you probably know, Lyme is a clinical diagnosis. It needs to be diagnosed based on symptoms, not just tests. There is no way somebody on this board can say you do or do not have Lyme.
Do you know if your doctor in Boston tested you for any coinfections? There are other infections transmitted by ticks. Your symptoms definitely bring to mind babesia, which is a parasite.
In the past, how has your body reacted to antibiotics? Have you gotten better or worse while taking them?
Did your doctor tell you about a herx reaction? A herx is an increase in symptoms when you start anitibiotics caused by a release of toxins as the bacteria is killed. If you have herxed in the past on antibiotics, it suggests Lyme or another bacteria.
You may also want to start the antibiotics to see if you have a herx reaction. But that decision is yours. I personally would try them if it seemed I had no other option.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
That is very frightening and I'm sorry you are going through this. Sounds a lot like what I went through about 25 yrs ago. I was not diagnosed with Lyme disease until 7 yrs ago...but I've had it for about 48 yrs.
Two things come to mind as I read your story.
1. It could be babesia or Lyme. 2. It could be celiac disease, which can be caused by some type of infection OR Lyme.
Even if they tested you for celiac disease, it could still be your problem. That happened to me. My test was "normal"....but I found that I couldn't tolerate gluten. [long story there]
Why don't you go to www.celiac.com and get on the discussion board. Ask some questions. Several people on that board also have Lyme....so they know about the connection.
In the meantime, find a Lyme Literate MD who will run a Western Blot through Igenex lab and will include testing for babesia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 95877 | From Texas | Registered: Feb 2001
| IP: Logged |
Frequent Contributor (1K+ posts)
Member # 12346
Your story sounds quite like mine. I also got very sick in January. It was actually New Years night when I got very ill. Went to the ER the next morning. They ran tests, everything was fine. The dumb ER duck told me I probably had a sinus infection (which I didn't), gave me antibiotics and told me to go home. I went home, took the antibiotics, and felt worse by evening. Went back to the ER that same evening. They did hard/cardiac tests, everything was fine there too.
I didn't go through as many tests/doctors as you did, but I did go through quite a lot and they never found anything wrong with me either.
My biggest symptom is the dizziness/lightheadedness, so I know what you're going through. Before I was treated, the dizziness was so bad I felt like I'd faint every other minute, but this is the way I functioned for nearly 7 months because, like you, doctors kept telling me nothing was wrong and proceeded to tell me it was my spirit and I needed to see a psychiatrist. And, like you, I did see one for a short while. Though it helped to talk to someone about my illness and no one helping, it didn't make me BETTER physically.
You could wait for the results to come back, but most results come back negative. Not always, but if it does come back negative it doesn't mean you don't have lyme or co-infections. Mine came back negative except for one measley positive band. I still don't have the answers I want, so I understand you're feeling of being scared and not knowing what to do. I'm going on the fact that I've been in treatment for a few months and have started feeling better. At least much better than I did when I felt like I was going to faint every minute. I don't feel like that anymore. I still feel dizzy and lightheaded as it's still my main symptom, but it's not as bad as it was before being treated with antibiotics.
I wish you the best to feel better soon.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
Your symptoms are very similar to mine. My primary symptoms are flu-like....nausea, light-headed, body is shakey and weak, etc. I also don't have any joint pain, etc. It took me 18 months to get a diagnosis and I must have seen over 15 different doctors/specialist! I was tested initially using the Elisa which of course came back negative and it was only this past June that my Western Blot came back positive for Lyme.
Are you seeing Dr. D? If so, that's my Dr. as well. Feel free to 'PM' me with any questions.
My opinion is that you should start the antibiotics as the potential benefit far outweights the risk. Your reaction to the antibiotics will also be very helpul in determining whether you have Lyme. Not to mention if you do have it, the sooner you start treatment, the better!