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Carcinoid or Mastocytosis? Many WEIRD symptoms and many tests with no answers!
In February I started getting bouts of tachycardia enough to where one day I thought I was going to have a heart attack so I called an ambulance. They hooked me up to a heart monitor and said I was not in immediate danger and that I should go to the hospital. My heart rate was 165 bpm that day. I wore a holter monitor and was told by one Dr that I had PSVT. I tried the vagal menuevres and they did not work. I saw an electrocardioloist and he said that I did not have PSVT, but it was sinus tachy. He ordered more tests to check my thyroid, echcardiogram, diabetes, and catecholamines. All tests came back negative. I can't even walk up a flight of stairs without having my heart beat out of my chest and I get out of breath. I have lost 20 pounds in a month and a half! The vision in my left eye started to become blurry a few months later and I noticed that this lump on my head right next to my eyebrow in the middle of my forhead had some kind of vein entering my eye socket. I had had this lump for about a year and decided to pop it with a needle to see if it was maybe a zit or something. When I did that, my pupils began to dilate, my heart started racing and I couldn't sleep for about 3 days! My eyes are getting more veins in them and they are very red and getting redder. My legs got weak and I was getting night sweats. It was so bad that I couldn't get out of bed for a few days. I felt nauseated and the veins in my hands and palm would bulge and sweat profusely. I felt like I had to consciously pull air in and out of my lungs or I would stop breathing. Also, after I popped that thing I started getting red dots all over my body and I got muscle spasms in my legs, stomach, and arms. I have been to two opthalmologists and they say my eyes are fine, I had an MRI of my head but it was without contrast and that was fine too. Now I have head aches on the left side of my head and the hearing in my left ear is lessening. My left cheek also feels numb sometimes. I have no idea what is wrong with me, and I know all of this sounds crazy, but I am just telling you my symptoms. I also get bruises all over my body without injury and my skin is very thin. I pulled a bandage off two weeks ago and it tore my skin off and has yet to heal completely. I also notice that when I had a piece of tape from an IV ripped off of my arm, I had several freckles appear in that spot. I also have random dark spot like freckles that are appearing all over my body. I have no idea what this is, but it is really scary and no one can figure it out. I am either thinking cancer or autoimmune disease. Any suggestions would be very helpful. It's just really hard to figure this out because the symptoms I am having involve so many different parts of my body. .
Sorry for my bad english, i´m from São Paulo, Brazil, I have the same symptons for 8 years, i have a lot of exames,for lupus (autoimune diseases), lyme, cancer, carcinoid, muscular diseases, blood diseases, kidney, liver, and a lot more and still undiagnosed, I´m feel very sick. You found what´s wrong? My last exames shows a high plasma histamine, I have ANA positive.
Thanks for the information. I had a spinal tap done a few days ago and the dr ordered tests to check for MS, fungal infections, bacteria, etc. I just hope I get some answers soon so I can begin treatment because I hate feeling like crap all day everyday.
One more test that is helpful for Lyme..it is called a CD57. It measures an immune cell that is only known to be suppressed by HIV and Lyme. As long as you are confident you don't have HIV, a low number is indicative of Lyme.
I have not heard anything good from Lyme patients who have been to the Mayo Clinic.
Lyme can cause white spots in the white matter of the brain. I have a whole bunch of them. They are usually small and unenhanced with contrast. I do not know if Lyme can cause lesions in the cervical spinal chord. Was it enhanced? Did your doctor suggest looking further for MS or for waiting?
Yes, Lyme symptoms can come and go. Mine would come for 1-3 weeks, then go away for 6-11 months. This happened for almost 5 years before I developed chronic symptoms. MS can also behave like this.
IGeneX testing: yes, you need a doctor to sign off on it. I asked my PCP and she agreed. I told her I was paying for it up front and that I didn't care if insurance covered it, and she agreed because I was so sick and numerous doctors hadn't helped me. I was so sick, she told me to go to the ER and get checked in to the hospital. I did the next day, after my IGeneX blood draw. (My insurance reimbursed me about 2/3 the cost of the Western Blot, which costs about $200. Best money I ever spent!)
I read about one patient who couldn't convince his doctors to authorize IgeneX tests, so he went to a walk in clinic at WalMart. That doc did it.
LLMDs can be hard to find. You can go to ILADS.org and look for their doctor referral service. They will send you some names. You can also look up your local Lyme support group, or look for a state Lyme Disease association or foundation. They often have good suggestions. Sometimes, you can find local doctors to diagnose it, but you may have to travel to get proper treatment.
Unfortunately, the blood tests for autoimmune disorders aren't perfect, either. You can have a negative ANA and still have an autoimmune disorder or Lyme. You can have a positive ANA and have an autoimmune disorder or you can have Lyme. A positive ANA neither excludes or confirms either one.
Did you have your rheumatoid factors tested? They aren't absolute either, but if they are high, they usually indicate an autoimmune disorder.
Do you see why all these tricky diseases can be so hard to diagnose? Grrrr.
Lyme can cause white spots in the white matter of the brain. I have a whole bunch of them. They are usually small and unenhanced with contrast. I do not know if Lyme can cause lesions in the cervical spinal chord. Was it enhanced? Did your doctor suggest looking further for MS or for waiting?
Yes, Lyme symptoms can come and go. Mine would come for 1-3 weeks, then go away for 6-11 months. This happened for almost 5 years before I developed chronic symptoms. MS can also behave like this.
IGeneX testing: yes, you need a doctor to sign off on it. I asked my PCP and she agreed. I told her I was paying for it up front and that I didn't care if insurance covered it, and she agreed because I was so sick and numerous doctors hadn't helped me. I was so sick, she told me to go to the ER and get checked in to the hospital. I did the next day, after my IGeneX blood draw. (My insurance reimbursed me about 2/3 the cost of the Western Blot, which costs about $200. Best money I ever spent!)
I read about one patient who couldn't convince his doctors to authorize IgeneX tests, so he went to a walk in clinic at WalMart. That doc did it.
LLMDs can be hard to find. You can go to ILADS.org and look for their doctor referral service. They will send you some names. You can also look up your local Lyme support group, or look for a state Lyme Disease association or foundation. They often have good suggestions. Sometimes, you can find local doctors to diagnose it, but you may have to travel to get proper treatment.
Unfortunately, the blood tests for autoimmune disorders aren't perfect, either. You can have a negative ANA and still have an autoimmune disorder or Lyme. You can have a positive ANA and have an autoimmune disorder or you can have Lyme. A positive ANA neither excludes or confirms either one.
Did you have your rheumatoid factors tested? They aren't absolute either, but if they are high, they usually indicate an autoimmune disorder.
Do you see why all these tricky diseases can be so hard to diagnose? Grrrr.
Oh and I had my Lymes test done through the Mayo Clinic. Do you know if they are accurate at all?
I got my results back from an mri of my upper spine. They found a white spot. Can that be something caused by Lymes?
Thanks for the information. It seems that my symptoms come and go and change a lot. Is that common with Lymes and the other co-infections? I have been trying to find a LLMD in Iowa but have been unsuccessful. Do you know where I can find a list of LLMD's? I have heard Igenex is great for detecting Lymes, but how much does it cost to have the testing done and how do you go about getting it done? I have heard you have to get your Dr to sign off for the testing. Is that true? Also I had an ANA test. Would that rule out any auto immune disease? I really appreciate you giving me information. It is so frustrating when I have physical symptoms and everyone keeps telling me it's in my head. I know my body and this is definitely not right.
You may have discovered in your research about Lyme Disease that it is quite controversial. The "official" belief is that if you have Lyme, you will always test positive, and a short course of antibiotics cures all cases. Well, there are thousands of us out there who's immune systems didn't get the memo on how to behave, and don't produce exactly the antIbodies the tests look for. The CDC surveillance criteria wasn't initially developed to be a diagnostic absolute. It was developed to catch a sample and follow trends.
You can show other Lyme specific antibodies, but if the lab where you got tested ignores everything except the CDC specified "bands", you wouldn't know it. I tested false negative twice before I tested diagnostically positive at IGeneX. That's a specialty lab that does more advanced testing and finds many cases other labs miss.
You will also need to be tested for Bartonella (b.henselae and also, b.quintana, although your symptoms are more suggestive of b.henselae). Bartonella was believed to be a self limiting disease that didn't need treatment, but when it comes along for the ride with Lyme from a tick, it can be nasty. It tends to cause noticeable anxiety (even panic attacks) and to make the neuro and GI symptoms of Lyme much worse.
This has been very true for me (I have both). My digestive system was REALLY messed up in multiple ways. I ended up with multiple deficiencies due to poor absorption, h.pylori and campylobacter, chronic loose and bulky stools, abdominal and stomach pain (bad enough to be hospitalized), acid reflux, loss of appetite, and weight loss. And those were just my GI symptoms! Look up an article by Dr. Virginia Scherr called "Bell's Palsy of the Gut." It was a huge "ah ha" moment for me to read this article as it was the first time someone described what was going on in my gut. Multiple docs, including a GI doc has mostly ignored my GI problems, even though I was miserable.
It is very common for Lyme patients to be truly suffering from multi-system problems and to have trouble getting doctors to take them seriously, especially when most tests are negative or inconclusive. And if y have anxiety from either Lyme or Bartonella on top of the natural anxiety of being sick and not getting answers, then you're likely to be prescribed Xanax, antidepressants, and sleep aids and/or referred to a psychiatrist. Often, these meds really help, but they do nothing about the underlying problem of a nasty infection!
Infectious Disease doctors are unfortunately the worst when it comes to late stage Lyme. They can be very dismissive, will only diagnose if you test CDC positive, and will only treat you for a month. If you get well, you are one of the lucky ones. The rest of us who are still sick, are denied further treatment and told that it is either "post Lyme syndrome" or something else, but not Lyme. You will need to find a good LLMD, a Lyme Literate Medical Doctor who can make a clinical diagnosis when needed, knows to look for coinfections, and will treat you until you are well, not some arbitrary length of time that worked for someone else 15 years ago.
Please come post on the Lyme forum. There are experienced people there with multiple perspectives. Most of us have a story of going through multiple doctors and struggling with debilitating symptoms for extended periods of time. We are happy to offer advice to help others along their path.
I recommend you still go see a rheumatologist and get whatever work up they suggest for autoimmune disorders. Lyme mimics many things, and excluding the many other things can help get you to a diagnosis, whether it is Lyme or something else.
You can show other Lyme specific antibodies, but if the lab where you got tested ignores everything except the CDC specified "bands", you wouldn't know it. I tested false negative twice before I tested diagnostically positive at IGeneX. That's a specialty lab that does more advanced testing and finds many cases other labs miss.
You will also need to be tested for Bartonella (b.henselae and also, b.quintana, although your symptoms are more suggestive of b.henselae). Bartonella was believed to be a self limiting disease that didn't need treatment, but when it comes along for the ride with Lyme from a tick, it can be nasty. It tends to cause noticeable anxiety (even panic attacks) and to make the neuro and GI symptoms of Lyme much worse.
This has been very true for me (I have both). My digestive system was REALLY messed up in multiple ways. I ended up with multiple deficiencies due to poor absorption, h.pylori and campylobacter, chronic loose and bulky stools, abdominal and stomach pain (bad enough to be hospitalized), acid reflux, loss of appetite, and weight loss. And those were just my GI symptoms! Look up an article by Dr. Virginia Scherr called "Bell's Palsy of the Gut." It was a huge "ah ha" moment for me to read this article as it was the first time someone described what was going on in my gut. Multiple docs, including a GI doc has mostly ignored my GI problems, even though I was miserable.
It is very common for Lyme patients to be truly suffering from multi-system problems and to have trouble getting doctors to take them seriously, especially when most tests are negative or inconclusive. And if y have anxiety from either Lyme or Bartonella on top of the natural anxiety of being sick and not getting answers, then you're likely to be prescribed Xanax, antidepressants, and sleep aids and/or referred to a psychiatrist. Often, these meds really help, but they do nothing about the underlying problem of a nasty infection!
Infectious Disease doctors are unfortunately the worst when it comes to late stage Lyme. They can be very dismissive, will only diagnose if you test CDC positive, and will only treat you for a month. If you get well, you are one of the lucky ones. The rest of us who are still sick, are denied further treatment and told that it is either "post Lyme syndrome" or something else, but not Lyme. You will need to find a good LLMD, a Lyme Literate Medical Doctor who can make a clinical diagnosis when needed, knows to look for coinfections, and will treat you until you are well, not some arbitrary length of time that worked for someone else 15 years ago.
Please come post on the Lyme forum. There are experienced people there with multiple perspectives. Most of us have a story of going through multiple doctors and struggling with debilitating symptoms for extended periods of time. We are happy to offer advice to help others along their path.
I recommend you still go see a rheumatologist and get whatever work up they suggest for autoimmune disorders. Lyme mimics many things, and excluding the many other things can help get you to a diagnosis, whether it is Lyme or something else.
I got a lymes test and it was negative. I also got an ANA test which was negative. My main problem not is head pain, delusional thoughts, eye pain, double vision, and pressure in my head. I had an MRI with contrast and it showed that my maxillary sinus wall was thickening. I constantly have red eyes, but I dont think it's allergies because I've tried allergy meds and allergy eye drops and nothing works. It almost feels like my brain is bleeding because this fluid sensation comes and goes throughout the day. The pain in my head radiates down my neck into my shoulders and my face goes numb sometimes. I am always extremely tired. I am getting an MRI of my neck and I am going to see an infectious disease Dr because I really do suspect Lymes after researching it. I just want some answers and it feels like no one is going to help me and they are just going to let me die.
Also I got stung by a bee a few months ago and my whole back turned red and that's when my symptoms got extremely worse. That leads me to believe it may be mastocytosis as well.
Less than half of reported Lyme cases have a bulls eye rash. Sometimes the rash is oval and solid, sometimes it is bumpy, sometimes there just isn't one. Mine looked like a sunburn, like I had missed the back of my calf with the sunblock. Lyme symptoms can show up weeks, months, or even years after a bite.
The red dot rash can be caused by Bartonella, another insect borne illness. As a coinfection of Lyme, it makes the neuro and GI symptoms worse. You can also test false negative for Bartonella. A LLMD can make a clinical diagnosis if appropriate. You can ask local Lyme support groups for a recommendation, or go to ilads.org and inquire there.
I encourage you to continue to get tested for autoimmune disorders, but rheumatologists are usually not very Lyme literate and tend to take negative blood tests too literally.
The red dot rash can be caused by Bartonella, another insect borne illness. As a coinfection of Lyme, it makes the neuro and GI symptoms worse. You can also test false negative for Bartonella. A LLMD can make a clinical diagnosis if appropriate. You can ask local Lyme support groups for a recommendation, or go to ilads.org and inquire there.
I encourage you to continue to get tested for autoimmune disorders, but rheumatologists are usually not very Lyme literate and tend to take negative blood tests too literally.
I also have really low blood pressure all of the time. It's like 80/60. I'm dizzy and tired all of the time and have a lot of pressure on the right side of my head behind my eye. If I had an MRI without contrast would they be able to see brain aneurysms?
Thank you so much. That made me cry. I have researched Lupus and I do have a lot of the symptoms of it, but I'm not sure if that's it because my first symptom was the fast heart rate. I also do not have the butterfly rash on my face that usually happens with Lupus. I get this itchy rash sometimes with red dots in it and then a few days later the area where I had the rash has multiple freckles on it. The freckles have an orangish color to them and are very faint.
Your symptoms sound like lupus an autoimmune disease. Has your doctor done an ANA blood test yet? Typical symptoms of Lupus are red spots, weight loss, fatigue, dry eyes (hence blurry), and headaches. The racing heart could be from all the anxiety from not knowing what's wrong, as well as pupil dialation. Best of luck with your health and on insisting more tests from your doctors. A referral to a rheumatologist will help diagnose lupus or other autoimmune disorder, as well as possible lymes. Although if it is lymes, I would get a lyme literate doctor like Ricobord has.
Don't worry, people live a very long live with autoimmune disorders and there's treatment to improve the quality of life. You'll see your twins grow up.
Don't worry, people live a very long live with autoimmune disorders and there's treatment to improve the quality of life. You'll see your twins grow up.
Thank you for the information. It does sound similar to lyme's disease, but I just don't know how I would be getting all of these weird freckles all over me from that. Also, my tachycardia started in February and I live in an area where it gets really cold in the winter, so there were not any ticks out when this all started. Also I have been extremely tired for the past year now. I'm just really scared and none of the dr.'s I've seen can figure this out. It's so scary. I'm too young to die and I have two kids I need to be here for.
Where are you located? Is it possible you could have Lyme Disease? It can cause tachycardia (I had it up to 155 bpm), a pounding heart beat, shortness of breath, vision problems papery skin, weakness, sleep problems, hearing issues, numbness, and many other symptoms. Night sweats and air hunger are symptoms of Babesia, a parasite that often comes along for the ride with Lyme.
I have Lyme and Bartonella (another coinfection of Lyme), and I have had most of the symptoms you describe. I have neuroborreliosis, or neurologic Lyme. Most doctors have been taught that it is so rare, they'll probably never see a case. In reality, it is far more common than originally believed. Many of us don't test "positive" on the CDC surveillance criteria, which was developed using patients who primarily had a rash and sore knees. I am convinced that most patients with primarily neurological symptoms show different test results and are far more likely to go undiagnosed....and get severely ill.
Check out this document, originally intended for doctors, but still very informative.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
You will want to find an LLMD, a Lyme Literate MD, as we patients call them, who are familiar with tick borne diseases. You will also want to get tested at IGeneX, a specialty lab. They do more advanced testing than other "mill" labs.
You are welcome to come post on the Lyme forum.
I have Lyme and Bartonella (another coinfection of Lyme), and I have had most of the symptoms you describe. I have neuroborreliosis, or neurologic Lyme. Most doctors have been taught that it is so rare, they'll probably never see a case. In reality, it is far more common than originally believed. Many of us don't test "positive" on the CDC surveillance criteria, which was developed using patients who primarily had a rash and sore knees. I am convinced that most patients with primarily neurological symptoms show different test results and are far more likely to go undiagnosed....and get severely ill.
Check out this document, originally intended for doctors, but still very informative.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
You will want to find an LLMD, a Lyme Literate MD, as we patients call them, who are familiar with tick borne diseases. You will also want to get tested at IGeneX, a specialty lab. They do more advanced testing than other "mill" labs.
You are welcome to come post on the Lyme forum.
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