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Chronic Headache and Mycoplasma Infection
My 12 year old daughter has been sick since February. It started with what seemed to be the flu which went away. about a week later, she had a severe headache, sensitivity to light and difficulty walking. Her neuro diagnosed her with acute cerebellar ataxia. Her walking improved after a few weeks, but the headaches persisted. She also has paranoia and feels like she is being watched. Therefore, I am unable to leave her alone. She has missed almost 3 months of school. She was an honors student with many friends and her life has been turned upside-down.
Morphine and toradal have been the only medicines which have given her relief. She has had two lumbar punctures, one CT, 2 MRI's and recently a colonoscopy and endoscopy for what appear to be the beginning of ulcers. The first mri was normal but the 2nd showed evidence of lesions in the white front matter which indicate the possibility of a migaine, ADEM, Lyme's, among other conditions. In the beginning stages of her illness, she had elevated titers to Lyme which were considered equivocal. The LP did not find any evidence of Lyme. Her blood work is now with the California Encephalitis project where the test reflected elevated titers to mycoplasma. We are awaiting a 2nd test to see if she has Igg titers to mycoplasma.
THe GI doctor thought she had a H. pylori bacterial infection, but the biopsy turned out negative. There are not many resources on the internet about mycoplasma, but I have read that it can cause gastrointenstinal problems. If the GI suspected an infection, and it was not H. Pylori, can it be mycoplasma? The GI doctor says it is doubtful, but what is the source of the infection in the first place?
Brianna was on steroids at first which did not help her headache. She is now on beta blockers which do not seem to be helping. She also has joint pain, numbness in her fingers, fatigue, and is becoming more depressed each day. Her doctors want to just experiment with different medications until we find out what works. The worst symptom is her headache and she does not want to leave the house.
We are at our wit's end and want her better. We are considering some alternative treatment such as hyperbaric oxygen therapy and acupuncture.
I would appreciate any feedback and/or suggestions about her condition. Thanks in advance!
Morphine and toradal have been the only medicines which have given her relief. She has had two lumbar punctures, one CT, 2 MRI's and recently a colonoscopy and endoscopy for what appear to be the beginning of ulcers. The first mri was normal but the 2nd showed evidence of lesions in the white front matter which indicate the possibility of a migaine, ADEM, Lyme's, among other conditions. In the beginning stages of her illness, she had elevated titers to Lyme which were considered equivocal. The LP did not find any evidence of Lyme. Her blood work is now with the California Encephalitis project where the test reflected elevated titers to mycoplasma. We are awaiting a 2nd test to see if she has Igg titers to mycoplasma.
THe GI doctor thought she had a H. pylori bacterial infection, but the biopsy turned out negative. There are not many resources on the internet about mycoplasma, but I have read that it can cause gastrointenstinal problems. If the GI suspected an infection, and it was not H. Pylori, can it be mycoplasma? The GI doctor says it is doubtful, but what is the source of the infection in the first place?
Brianna was on steroids at first which did not help her headache. She is now on beta blockers which do not seem to be helping. She also has joint pain, numbness in her fingers, fatigue, and is becoming more depressed each day. Her doctors want to just experiment with different medications until we find out what works. The worst symptom is her headache and she does not want to leave the house.
We are at our wit's end and want her better. We are considering some alternative treatment such as hyperbaric oxygen therapy and acupuncture.
I would appreciate any feedback and/or suggestions about her condition. Thanks in advance!
Please re-read "savingkids" comment of 3/16/11. He is absolutely right...you need to look deeper than mycoplasma...and look into the "Lyme complex". I had all of the above, went from a runner of 17 years to not being able to leave the house for 5 years...almost died. Extended hyperbaric tax saved my life. The reason you see temporary improvement with the antibiotics for my plasma is because they are mostly the same as what is used for Lyme and some co-infections. Look deeper!
My son, 11 was sick for a few weeks in Nov2011, got back to full health for 2 weeks and then hit a brick wall. He presented with neurological disorders; headache, severe fatigue, loss of motor skills, not able to stand, loss of reflexes, and sensitivity to light. He was hospitalized during the week of Christmas. They suspected Guiilen Barre. He endured a spinal where they found that his cerebro-spinal fluid was elevated but everything else normal. He went on acetazolamide to relieve the pressure but it only made him sick. Throughout the entire ordeal we told the docs that some of us had endured a prolonged 6-8 week illness that caused pneumonia in a family friend. They finally tested for mycoplasma antibodies which were 10x higher than normal. He was put on Levaquin for 2 weeks. Then underwent another spinal to ensure that the fluid pressure was not still elevated. All tests were negative (2 MRIs included) except for the mycoplasma.
It is now March 2012 and he has regained much of his strength and can tolerate physical activity. He visits a physical therapist to also improve his strength (after being on his back for 2+ months). The problem is he still has the same headaches that become worse when trying to concentrate or when he is in a loud or bright environment. The head pain never goes away. We have him back to school an hour a day and next week he starts 3 hours a day. I hope he can endure it since he missed almost 3 months of school.
He is currently on amitriptylene and topirimate. He takes maxalt as needed to get the head pain down when it spikes. I don't know if these medications are helping him. The maxalt provides some short term relief. If anyone has any information that helped them please share it. Our pediatrician is very good and expects that he will heal completely in time. Of course, as a parent, it is the what-if that you are always thinking about.
It is now March 2012 and he has regained much of his strength and can tolerate physical activity. He visits a physical therapist to also improve his strength (after being on his back for 2+ months). The problem is he still has the same headaches that become worse when trying to concentrate or when he is in a loud or bright environment. The head pain never goes away. We have him back to school an hour a day and next week he starts 3 hours a day. I hope he can endure it since he missed almost 3 months of school.
He is currently on amitriptylene and topirimate. He takes maxalt as needed to get the head pain down when it spikes. I don't know if these medications are helping him. The maxalt provides some short term relief. If anyone has any information that helped them please share it. Our pediatrician is very good and expects that he will heal completely in time. Of course, as a parent, it is the what-if that you are always thinking about.
We have a very similar situation going on with our 11 year old son who presented with severe lower right quadrant pain. He was not tested for Mycoplasma until a month later and his numbers were 3000. We have been on a merry go round with doctors. His GI tract has been completed affected and he now has severe reflux and dysmotility issues. He always has a headache and the pain is still there in lower right area. They did find enlarged lymph nodes initially on catscan but they have shrunk. Off to another infectious disease doctor. Did the Zithromax thing-no help. On Doxycycline for 3 weeks with fingers crossed??
my daughter 16 years old began with headache and lower right quandrant pain. After being diagnosed incorrectly with ruptured ovarian cyst,and endometriosis she had an unnecessary appendectomy and pelvic surgury and misdiagnosed with endometriosis. then on to the allergist, gastroenterologist and diagnoses with postural hypotension by cardiiologist. a month ago the pain worsened, ear pain fever, urinary pressure, severe headache, coughing wheezing, no energy and she was diagnosed with pneumonia. high IGG and IGM diagnosed with mycoplasm. third course of zithromax, still horrible headache, lack of energy and urinary frequency. her doctor does not feel that the headache has any thing to do with the mycoplasm. he does not feel the lower quadrant pain is also related. any thoughts?? what has helped the headache???? it is debilitating
All of you need to be aware that among children, these chronic infectious syndromes are becoming more and more common and debilitating. The trigger can be different, but often Lyme disease and other tick-borne infections are the major culprits. They are immuno-suppressive, so as they progress, they erode the immune system's capacity to keep common bacteria, like mycoplasma and Epstein Barr which most people have had exposure to, under control. And what follows is a major cascade into severe, and often debilitating illness. Most physicians look for "one cause, one solution" and are not even aware of the many new infections, including viruses, that have emerged over the last 10+years, and the huge increase in immune disorders among children. READ Cure Unknown, by Pamela Weintraub, an award winning science journalist and editor of Discover Science magazine, and look at www.ilads.org a scientist/physician professional organization that emerged about 15 years ago as these patterns originally thought to be "Lyme" disease started to emerge. When most knowledgeable doctors say "Lyme" today, they mean this complex of chronic infections triggered by immune suppression that are devastating our children. All of your stories have these threads - you will need to unravel the pieces of your child's story. Our child had mycoplasma, along wtih Lyme, Bartonella (google Breischwerdt of Duke university), Babesiosis, Ehrlichiosis, Epstein Bar, HHV-6, and Chlamydian pneumonia - many of these infections implicated in MS. You will have to be the advocate here b/c the docs are not up to date. Our child went from high-performing bright, speaking 2 languages, to missing most of a school year, having to be carried around by her dad, rolled out of school in a wheel chair, losing her language, and all of the symptoms you described above, the headaches and gastro issues, and more. When treated effectively pver several years-- by the way, mycoplasma requires 2-3 years of treatment to successfully eradicate a chronic infection -- she has had a 16 pt increase restoring her IQ, and is back to "normal" though she will always have to be watched and her immune system supported. PANDAS - chronic strep infection is a part of this as well. Don't accept the "1 cause, 1 answer" approach- they are wrong, and your child will pay the price. Research, and be diligent --- turn over each leaf, and you can restore your child's health.
2 Comments
What doctor helped with the mycoplasma? We have been dr to dr with them saying oh we can’t help maybe so and so can for 3 months. My son has been dizzy everyday for 3 months and needs help. His mycoplasma blood test came back positive and the rheumatologist nurse said they don’t think it’s anything to worry about. I’m not ok with that! I’m over modern medicine.
The post you're responding to is 10 years old, so the person might not be around anymore. But basic rule is, if your docs can't help, find better docs. As for natural medicine, you still need to know what you're dealing with in order to treat it. You still need a diagnosis. And nurses aren't doctors and aren't trained to know anything about much of anything. That's why they're not called doctors. Keep looking for help.
When I was a teenager (20 years ago) I became very sick and went in and out of doctors offices for more than 7 months. Finally my family doctor sent me to a lung specialist and he told me I had a mycoplasma infection. I was on antibiotics for 2-3 weeks and I felt much better. Needless to say that has not been the end of it and I've never been the same since. I don't know if the long term mycoplasma infection did damage but anytime I get a cold or flu my body can't fight it off and I end up on a 2 week course of Biaxin (minimum). I met another older lady in a hospital clinic and we started talking. We both had the same problem after a long term mycoplasma infection. I will never forget what she told me. She said "It gets worse as you age" She was correct. I hope this doesn't happen to your children, but hopefully we can all learn from each other.
Mycoplasma Infection is a nasty bacterial infection that can cause headaches, joint pain, fevers, dry couch, shortness of breath and a general feeling of the flu. If these symptoms don't resolve on there own then you need antibiotics like (Doxycycline, Cipro, Azithromycin or Biaxin).
My 15 year old had what seemed to be a flu-like virus in January. A moderate headache >96 hrs brought us to the Family Practice doctor who dismissed it as typical flu.
She had a non-stop severe headache every day since then, sending us to pediatric neurologists, LP, MRI, CT, EEGs, emergency room, an arsenal of medications (Imitrex, Maxalt, phenergan, Medrol packs, etc). She has been taking Indomethacin and Phenergan X2 daily for several weeks. She missed more school in February than she attended.
I brought her to a second pediatric neurologist for another opinion. The new Dr. checked her for celiac disease, Mycoplasma, CSF pressure, and a few others. Her Mycoplasma IgG was >5X cut-off value, her IgM was also elevated. She has a Mycoplasma infection.
5 days on antibiotics and her own immune system all this time are probably all she has needed. I shudder to think of all her pain and suffering because we didn't get her Mycoplasma results in January or February.
She presented with mild fever, virus-like symptoms (sore throat, diffuse upper respiratory congestion) but that severe headache seems to be the "tell".
Why do we all have to suffer so much before learning how common Mycoplasma infection is? Our kids' symptoms are all similar!
She had a non-stop severe headache every day since then, sending us to pediatric neurologists, LP, MRI, CT, EEGs, emergency room, an arsenal of medications (Imitrex, Maxalt, phenergan, Medrol packs, etc). She has been taking Indomethacin and Phenergan X2 daily for several weeks. She missed more school in February than she attended.
I brought her to a second pediatric neurologist for another opinion. The new Dr. checked her for celiac disease, Mycoplasma, CSF pressure, and a few others. Her Mycoplasma IgG was >5X cut-off value, her IgM was also elevated. She has a Mycoplasma infection.
5 days on antibiotics and her own immune system all this time are probably all she has needed. I shudder to think of all her pain and suffering because we didn't get her Mycoplasma results in January or February.
She presented with mild fever, virus-like symptoms (sore throat, diffuse upper respiratory congestion) but that severe headache seems to be the "tell".
Why do we all have to suffer so much before learning how common Mycoplasma infection is? Our kids' symptoms are all similar!
Our son had what seem like a normal virus with fever, vomiting and headache. All symptoms went away except the headache, which has persisted for a month to the point of excruciating pain 3-4 times a day. He had MRI, CT, lumbar puncture, blood work, etc. All came back normal except positive test for mycoplasma. The first hospital did his lumbar puncture incorrectly causing severe vomiting and spinal headache. That plus all the pain meds (toradol, morphine, atovan, etc.) made his vomiting continuous for 4 days until he began also vomiting blood. We moved to a hospital with pediatric neurologists (Cook Childrens). They said the vomiting and pain meds was probably causing ulcerations in his stomach. They treated his stomach. He was treated for 5 days with azythromycin for the mycoplasma and also treated with DHE (dihydroergotamine) for several days for migraine. He was also give magnesium sulfate. In 3 days all symptoms were gone!
1 Comments
The magnesium sulfate is also key...critical co-factor to 300+ enzymatic reactions, vitamin D function, ability of the body to fight infections...long list. Low magnesium is very likely the primary cause of "fibromyalgia."
Wow! I posted this back in May and came across this site just now and noticed your response just days ago. Brianna is doing better, but has now been diagnosed with fibromyalgia. She tested positive the second time for mycoplasma, but her rheumatologist is not convinced that it is the root of the problem. She is back in school, but just failed a vision test, so we are still searching for answers. I still believe that mycoplasma has played a role in her condition, but there is not a lot of research to prove it 100%. She just started taking Lyrica and her joint pain is better, but I wish that she was not so reliant on medicine. I understand what you are going through. Don't stop searching for a cure. I won't give up.
My 14 year old son has been sick for two months. He started out with pneumonia, diagnosed via chest x-ray. He developed ataxia/dizziness and severe headaches. We've been through the mill of doctors, 4 mri's, spinal tap, EEG, a four day hospital stay... I totally understand where you are at with this. My son was on the high honor roll and has alot of friends. Now he can't go to school and can't even read a book. His vision is starting to get blurry. We were just told that his numbers were extraordinarily high for mycoplasma pneumonie. How was your daughter treated? Has she gotton any better? Best of luck to you.
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