Hi, my name is Colin, I'm a healthy, active 24 year old, or was until about 4 months ago. My symptoms all started a few days after visiting my buddies cottage. It all started with a bout of blood in my stool. To date, my stools have always been softer with undigested food in them. I have abdominal pain under my right and left rib cage. A few days after, I also started getting terrible rib pain (they would hurt to touch them) and would be out of breath quite easily. Soon after, I got serious brain fog. I was so fatigued even after 8 hours of sleep. The brain fog was terrible, I couldn't focus at all. It got better after about 3 weeks, then came right back a few weeks later, also along with memory loss,and other wierd things, such as going in to the backseat of my car when i intended to drive. and to this day I still have trouble with my speech( using wrong words, tough time finding words) The brain fog has luckily subsided but the whole speech thing is still there. Since day 1, my muscles have been twitching non stop(mostly my legs, sometimes eyes and hand muscles). My hands also seem to not stop shaking. I have also had cracking joints all the time. I get really bad back/neck pain that seems to come and go. I also get pain over my chest widespread. I have gotten two bouts of nausea over these few months that last about 2 weeks then subsides. I also am constantly clearing my throat of phlegm, and my nose in constantly stuffy, soemtimes blood comes out when I blow it. Just recently I developed about 9 skin tags ( 2 about 1 mm, the rest really small) on my neck, and get small red spots under my skin that clear after a few days. I don't ever recall being bitten by a tick or a bullseye rash, but a few weeks ago developed a rash that was white in the center with raised red borders around it, about the size of my thumb. It stayed for about three weeks then subsided. I have seen a similar pic of lyme disease rash to it and will try to attach a pic of it. It seems like most symptoms come and go, but my abdominal pain, muscle twitching and speech and hand shaking always seem to be consistent. I have had two chest xrays, an abdominal ct scan, a brain ct scan and numerous blood tests all which came back normal( just small lucencies on lower right liver, probably cysts) I recently visited an infectious disease specialist who is testing me for lyme ( i think elisa, Igg Iga, EBV?) I am really lost and am getting really frustrated, could anyone please give me any insight? Thank you so much, and happy holidays! Colin
Posted by bigz123 (Member # 23755) on :
Sorry, I also forgot, I often get bad bouts of acid reflux, and from time to time see floaters in my eyes, and my left ear rings/buzzes.
Posted by TF (Member # 14183) on :
Breaking up the post so all can read:
Hi, my name is Colin, I'm a healthy, active 24 year old, or was until about 4 months ago. My symptoms all started a few days after visiting my buddies cottage.
It all started with a bout of blood in my stool. To date, my stools have always been softer with undigested food in them. I have abdominal pain under my right and left rib cage.
A few days after, I also started getting terrible rib pain (they would hurt to touch them) and would be out of breath quite easily.
Soon after, I got serious brain fog. I was so fatigued even after 8 hours of sleep. The brain fog was terrible, I couldn't focus at all.
It got better after about 3 weeks, then came right back a few weeks later, also along with memory loss,and other wierd things, such as going in to the backseat of my car when i intended to drive.
and to this day I still have trouble with my speech( using wrong words, tough time finding words) The brain fog has luckily subsided but the whole speech thing is still there.
Since day 1, my muscles have been twitching non stop(mostly my legs, sometimes eyes and hand muscles). My hands also seem to not stop shaking. I have also had cracking joints all the time.
I get really bad back/neck pain that seems to come and go. I also get pain over my chest widespread.
I have gotten two bouts of nausea over these few months that last about 2 weeks then subsides. I also am constantly clearing my throat of phlegm, and my nose in constantly stuffy, soemtimes blood comes out when I blow it.
Just recently I developed about 9 skin tags ( 2 about 1 mm, the rest really small) on my neck, and get small red spots under my skin that clear after a few days.
I don't ever recall being bitten by a tick or a bullseye rash, but a few weeks ago developed a rash that was white in the center with raised red borders around it, about the size of my thumb. It stayed for about three weeks then subsided. I have seen a similar pic of lyme disease rash to it and will try to attach a pic of it.
It seems like most symptoms come and go, but my abdominal pain, muscle twitching and speech and hand shaking always seem to be consistent.
I have had two chest xrays, an abdominal ct scan, a brain ct scan and numerous blood tests all which came back normal( just small lucencies on lower right liver, probably cysts)
I recently visited an infectious disease specialist who is testing me for lyme ( i think elisa, Igg Iga, EBV?) I am really lost and am getting really frustrated, could anyone please give me any insight? Thank you so much, and happy holidays! Colin
Posted by TF (Member # 14183) on :
Colin,
You have named many, many lyme disease symptoms.
Lyme disease is one of the VERY FEW diseases I know of that could cause all of the symptoms you have. Rarely does a disease affect as many bodily systems as you have named, but lyme is certainly one of them. So, it puts lyme high on the list of possible diagnoses for you.
I suggest you compare your symptoms to the list in the Burrascano lyme treatment guidelines found here:
The symptom list is on pages 9-11. You will see your speech problems (I had them too), rib soreness, nausea (I had it too), neck soreness (Yes, I had it), muscles twitching, cracking joints, making weird mistakes (I did that too), memory loss (me too), and more.
You will also see that with lyme the symptoms come and go.
So, I urge you to study the Burrascano guidelines to learn all you can about lyme disease. You will see that Dr. Burrascano says no lyme test is reliable enough to make the diagnosis of lyme. The diagnosis must be made based on symptoms. See this quote from p. 7:
"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms."
Dr. Burrascano is the U.S. guru on lyme disease. And, in fact, he is considered the expert in the world on this disease. He no longer practices medicine, but is traveling around the country and the world teaching doctors about this disease.
I also saw no tick bite and had no bulls eye rash, so it took 10 years for me to get a diagnosis. All the regular tests doctors did on me came back normal, just like you.
So, you must get yourself to a doctor who specializes in lyme disease to find out if you have this disease. Post in "Seeking a doctor" forum to find one, and also check your support groups in your country (see left side of page, "Support Groups") to find out who the best doctors are for this disease. They are few and far between, but the doc is the key to getting rid of this disease. I can't emphasize that enough.
ID docs generally are the enemy of lyme patients. They just hate to ever diagnose someone with lyme disease. I had a positive lyme test when I went to the ID, and she wanted to do another one! (She wanted the next test to come back negative so she could say I did NOT have lyme.) They act this way because they all follow the Infectious Disease Society of America (IDSA) lyme treatment guidelines, even in Canada, the UK, etc. These guidelines stress that lyme disease is RARE and is easily treated by a few weeks of antibiotics. So, that is how you can expect virtually every ID doc to behave toward you.
In contrast, a doc who has expertise in the disease will test you for all tick borne infections (the tick generally gives us more diseases than just lyme) and will start you on a treatment plan that should give you good results. Each disease you got from the tick requires different treatment. A lyme doc will treat you for months, not just a few weeks. This disease is NOT easy to get rid of. Read all about these things in Burrascano.
Anyway, I got rid of my lyme disease plus babesiosis and bartonella by going to a doc who followed the Burrascano lyme treatment guidelines. It has been 4 1/2 years since I completed my treatment and I am still symptom free, enjoying my life. That can be you also.
Be sure not to let any doctor give you any type of steroids as that will make your case of lyme disease much worse. That includes cortisone shots, pills, etc. Read about it in Burrascano.
And, don't let any doctor tell you that a negative lyme test rules out lyme disease. The reality is that the test is so unreliable, it misses about half the people who have lyme disease.
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it.
You will see on the video how many people had negative lyme disease tests and were told they did NOT have lyme disease, only to find out years later that this was untrue. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
If you study the Burrascano guidelines, it will be the best thing you ever did. It will give you an education in this disease that you most likely have.
Good for you for finding LymeNet. Keep us posted.
Posted by bigz123 (Member # 23755) on :
Thank you so much for your help and taking time to reply TF, I really do appreciate it, and will keep you posted. Take care, and happy holidays.
Posted by coltman (Member # 21272) on :
Get igenex Lyme WB test. ELISA and run of the mill WB tests are junk
A lot of your symptoms are what I had and I attribute them to exacerbation of lyme.
I didnt know it was lyme till I got WB, most of the really bad symptoms cleared after 1 month of 400 mg doxy . It didnt really improve until 3 weeks into it
I was at the point when symptoms were really overwhelming me so I had to do something right away without procrastinating too long
I am curious now about blood in the stool and nose bleeds. I had nose bleeds for long time, but really only had blood in the stool this year (when all hell broke lose). Just wonder how the hell lyme could cause bleeding
Posted by bigz123 (Member # 23755) on :
I wonder as well Coltman, thanks for the reply, I'm glad to know someone else is experiencing something similar. Do you have any other GI problems?
Posted by Carol in PA (Member # 5338) on :
bigz, Some of the symptoms can be attributed to low magnesium. Lyme Disease can cause low magnesium, as the Lyme bacteria uses up the mag in our muscle and nerve cells.