posted
Help please! This is going to be long, so please bear with me. Let me first say that I know that nobody on here can diagnose my son by what I am writing - I am simply seeking people's feedback on whether or not we may be on the right path, or which direction we should head next. I just want my son to stop getting sick! My son has been sick with a lot of seemingly unrelated things over the past few years, and it just never ends. It has been suggested by at least 3 people in the past 24 hours that we should seek the help of a Lyme specialist. However, we (his pediatrician and my husband and I) have also been toying with the idea of taking him to an immunologist to check for genetic issues.
His history growing up: WITHIN FIRST YEAR: *On nebulizer Q3hrs round the clock from birth - 8 months *Bacteremia (treated with Rocephin injections) *Hand shut in door - swelling but no broken bones or bleeding *Penny lodged in throat - surgery to remove *Spiked a fever - barium swallow to ensure no perforation of esophagus, which was negative and THEN they noticed the red streaks up his hand from where it was shut in the door - diagnosed with staph infection and treated with antibiotics *Chronic ear infections
YEAR ONE TO TWO: *Second bout of bacteremia *Chronic ear infections *Surgery to remove adenoids and place tubes
YEARS THREE TO FIVE: *Chronic pneumonia (multiple times each year) *Random projectile vomiting *Allergy tested (all negative) *Diagnosed with and treated for reflux
YEARS SIX TO THIRTEEN: *MANY cases of bronchitis, pneumonia, strep and caught "everything that came down the pike"
Over these years, he was an excellent student, athlete and active in Cub/Boy Scouts.
Then in ninth grade, as he was the starting center on the football team, he began complaining of shoulder pain. He was diagnosed with bursitis, told he had mild scoliosis and sent to physical therapy. Made it through the football season, played indoor soccer and basketball, then lacrosse. During lacrosse season, woke up one day and could not sit or stand due to intense back pain. Orthopedist put him on naproxen and flexeril. Within 2 days, he had a head to toe rash, was itchy, throat was swelling shut, chest pain. Rushed to ER; given breathing treatments, benadryl.
Went back to orthopedist who ordered MRI, and diagnosed him with spinal stenosis, reversed lordosis, high riding conus. He sent us to see a pediatric neurosurgeon. She ran more tests, but did not find anything substantial. His back pain eased up, but he began having massive headaches and mood swings
She sent him to a Pediatric Neurologist. She referred him to a Pediatric Rheumatologist who diagnosed him with Pain Amplification Syndrome.
Neurologist diagnosed him with (and started treatment for) migraines. He began experiencing occasional chest pain and frequent episodes of syncope. He was referred to a cardiologist who said he has a "slight" abnormality on his EKG but it is "normal for him" and nothing to worry about. He said his heart is fine. Neurologist ordered and EEG, which revealed some "slight abnormalities", but again, they are apparently fine for him and nothing to worry about. She changed his migraine medication (due to suspecting it of causing the chest pain). Started new medicine and broke out in head to toe rash, had severe abdominal pain. Stopped medicine and started third medication (which he is still on).
One day he began complaining of feeling like something was stuck in his throat. After 3 days, I took him to the doctor. Doctor found severely swollen lymph nodes and found a nodule on his thyroid (in the exact place he complained of feeling something). She put him on steroids, but after five days, the swelling had decreased but he still felt like something was there. She sent him for an ultrasound and they measured the nodule and sent him to an endocrinologist. She ordered a biopsy, which came back as a benign nodule. All thyroid labs were normal.
Throughout all of this, he was also being monitored by a Pediatric Orthopedist for his scoliosis, which remained minor until 15 months after initial diagnosis, when it was discovered it had gone from a 9-10 degree curvature to a 26 degree curvature, where it remains today.
He seemed to be doing okay for a while, and then late last fall started complaining of severe throat pain, fatigue and difficulty "focusing". After the third doctor visit in 6 weeks with the same complaints (but always having negative strep/mono tests), the doctor put him on an antibiotic anyway, citing possible sinus infection. Two days later, he spiked a fever of 103. Gave advil. One hour later, it was higher (103.5). He was lethargic, disoriented, showing (what I thought were) signs of dehydration. Took him to ER; strep test and mono spots were negative, but glands were severely swollen. Was given fluids/tylenol and sent home. Next night, fever of 103.7. Went back to ER. Given fluids, Tylenol and sent home. They got the strep culture back from the previous night - it was positive. They said the antibiotic needed more time to work. Next morning, his temp was 94.3! He had been up for several hours sweating profusely, saturating multiple shirts/pants and blankets. He was cold to touch but sweaty/clammy. Called ER and they said bring him back. He was admitted to the hospital. His CRP had more than doubled in less than 24 hours (from ER Visit #1 to ER Visit #2). They consulted Infectious Disease docs at Children's and started him on three different IV antibiotics. Ran LOTS more tests. NEVER FOUND anything (besides the positive strep culture) wrong with him! He was discharged on two oral antibiotics.
Started having severe abdominal pain after finishing the antibiotics. I started him on probiotics. He seemed better for a while. Then...
He had major loss of appetite, frequent disorientation, feelings of passing out, episodes of briefly "blacking out". He went camping, and when he came home, he was craving salt. I thought he had not had enough fluids on the camping trip and was dehydrated, so I pushed fluids. He was severely fatigued, and went to bed early. Next day, he was stumbling into the wall/doors. Pushed fluids that day (he drank 64 oz. gatorade and 64 oz. water). By the next day, he was still experiencing dizziness, fatigue and now having chest pain, severe lower right quadrant abdominal pain and difficulty focusing on anything. I took him to the doctor; she put him on meclazine for the dizziness, ordered an EKG (which was his "normal"), suggested the chest pain must be muscoloskeletal (possibly related to his scoliosis), and ordered an US of his gallbladder (which was negative). She referred him to a Peds GI doctor.
Prior to our appt with GI, I found him on the bathroom floor doubled over in pain and took him to the ER. They did a CT scan w/ contrast (and found nothing), but while we were at the ER, he began peeing blood. They followed up with a CT Pyelogram a few days later, but found no kidney stones. However they said it did show some colitis in the lower right quadrant.
GI doctor ordered EGD and Colonoscopy, put him on Bentyl and a liquid diet, and ordered labs. EGD was unremarkable. Colonscopy revealed colon polyps, which after being biopsied, proved to be benign and non-inflammatory. However at this point, his lab results were back and he was diagnosed with C. Difficile (oddly enough, he has never had diarrhea!) I took him to the ER again (because he was fatigued, weak, said limbs were "heavy" and was experiencing dizziness and feeling like he was going to pass out). They checked his orthostatic vitals, noting that his heart rate shoots up when he goes from sitting to standing, but BP remains low (and only dips very slightly). They gave him 2 bags of fluid and sent him home. GI doctor admitted him to the hospital the next day, ordered more fluids and an MRI of his small intestine (which she could not see in the colonoscopy and the contrast could not reach in the CT scan). There was nothing blocking his small intestine; they discharged him. Upon discharge, even after receiving IV fluids, he still felt dizzy.
This week, he was feeling better on Sunday evening, went to school Monday, and was in horrible condition by the time he got home. He was nauseous and severely fatigued and dizzy. He went to bed at 3pm and didn't get up until Tuesday morning. We woke him up to continue pushing fluids and give him dinner.
Tuesday he woke up with a "stabbing headache behind his right eye" and stumbling into walls/doors. I sent him back to bed and called his doctor when they opened. She called back in the afternoon and told me to take him back to the ER for more fluids. They checked his vitals, and again his BP drop was minor, but heart rate shot up. They gave two bags of fluid and sent him home.
But not before 2 different nurses said we should be taking him to a cardiologist to check for POTS, and we ABSOLUTELY should be looking for a Lyme specialist to rule that out.
I am so sorry this is so long, but I am desperate - I want my son to stop getting sick! Please - any suggestions anyone might have, we would love to hear! Thank you!
Posts: 15 | From Maryland | Registered: May 2012
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posted
The first twelve years of your son's life sound just like my son's early years...sickly, allergies, strep, ear infections,etc. He is 25 now and just tested positive for lyme. Good luck to you and may God bless you and your family...see an LLMD asap.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
This is a serious case of Lyme and co-infections. Do a search here or on Google for Babesia. You'll see that ALL of his symptoms match. He needs treatment immediately.
You must get him to a GOOD LLMD. Post in Seeking a Doctor and get an appointment right away.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
PLEASE check into the possibility that he may be infected with parasites. Check the symptom list at Humaworm, and google parasite symptoms. You will find a LOT of his symptoms are on the list.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Gael, Interesting that you bring that up... I had COMPLETELY forgotten, but he actually DID have worms when he was about 4 years old (13 years ago). However I don't think that is the issue now - before he went for the Colonoscopy, the GI doctor ordered a test of a stool sample, and I know Giardia was among several things she tested for. The only thing that came out of that was that he is positive for C. Difficile.
Posts: 15 | From Maryland | Registered: May 2012
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posted
BoxerMom - wow! yes, many of his symptoms do sound like Babesia!
Strangely enough, reading symptoms for the things you all are posting about is jogging my memory even more... I had even forgotten that when he was born, he was slightly jaundice. He was not bad enough to need a bili-blanket, but enough that they told me to take him outside for a certain amount of time each day, and after a few days, I had to take him back to the doctor for bloodwork and to make sure the jaundice was gone.
Posts: 15 | From Maryland | Registered: May 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Some things I thought of when reading your account:
The sudden severe abdominal pain is a clue here. Look at the symptoms, and see if they fit your son.
The migraines, reflux, joint symptoms...those do resemble the pattern of symptoms from tick borne infection. See the Canadian Lyme Disease Foundation, lots of good information. http://canlyme.com/patsymptoms.htmlPosts: 6947 | From Lancaster, PA | Registered: Feb 2004
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I have had most of the symptoms that your son has had. Even the feeling of something stuck in the throat was Babesia. Weak limbs, sweating, nausea, exhaustion, headaches, postural hypotension, dehydration, the works...
Babesia adheres to the insides of the small capillaries, impeding blood flow and oxygen delivery. As it's a red blood cell parasite, it also affects hematocrit and iron levels. All organs are compromised, including the brain.
We ALL have multiple tick-borne infections (Lyme, Babesia, Bartonella, Ehrlichia...) plus multiple opportunistic infections (causing pneumonia, for example).
We could go down your son's entire list of symptoms and match them to various infections. (Many symptoms can result from more than one infection. Some are considered hallmarks of a particular microbe or parasite.)
In addition, we are hormonally compromised and immune compromised, though that often won't show on labs. My body could not hang on to salt when my Babesia was at its worst. My adrenals were compromised and my aldosterone levels were off. I was always dehydrated and hypotensive (POTS, dizziness, fainting).
Do not bother going back to the ER or your pediatrician armed with this information. Chronic Lyme is a huge controversy, and doctors are taught that it presents with a few specific symptoms and is incredibly rare.
Nothing could be further from the truth.
Watch the documentary Under Our Skin. It's on Netflix, Hulu, Amazon.
And read Cure Unknown, Inside the Lyme Epidemic, by Pamela Weintraub.
You will get your son on the path to health. Start with a highly recommended LLMD.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
salibrky,
Was he ever treated for the worms??? Even if he was, it may not have been long enough. The testing is inacurate!!
I was loaded with parasites and tests never showed it. Sometimes we ignore what is staring us right in the face!
Some of these parasites can lay up to 200,000 eggs a day, and if even one egg is left over, the cycle will start over again.
Go to the Humaworm site for more info. If the doctor won't treat him with antiparasitics, try an antiparasitic herb such as Parastroy or Humaworm.
Thirty days is never enough to treat these parasites. It has to be ongoing until symptom free, and as Hulda Clark says, maintenance FOREVER
PARASITES CAN MAKE YOU DEATHLY ILL!
PLEASE DON'T IGNORE THIS EVEN IF YOUR DOCTOR TELLS YOU HE DOESN'T HAVE PARASITES! YOU SAW THEM FIRST HAND!
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Gael, yes he was treated for worms. However I will read more on that and dig through his records to see what he had, how long the treatment was, etc. as I don't recall anymore.
Posts: 15 | From Maryland | Registered: May 2012
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posted
Carol in PA: Thank you for the links. I looked over the Porphyria information, and interestingly, most of his symptoms do fit that as well. However he does not have low iron; I'm anemic, so early on I suspected that because of the fatigue and pain, but he was tested, and the RN jokingly told him he should be giving ME some of his red blood cells, because his red blood cell count is actually on the higher side!
Reading all of this info keeps jogging my memory, which I think is a good thing. I think I'm going to have to put together a "diary" of sorts with all the things I am remembering he has experienced, as I NEVER remember everything each time we go to a doctor (which is way too frequently and too abundant!)
While reading this I remembered something... last summer, he started experiencing strange all over body "rashes" so to speak everytime he went outside. It is not a raised rash, but more of a rash appearance beneath his skin, and it is quite itchy. He pretty much just stopped going outside to hang out with friends at all last summer, and doesn't spend much time outdoors at all anymore. Posts: 15 | From Maryland | Registered: May 2012
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posted
It certainly could be lyme and co-infections. No doubt about it. I see you're from MD too. If you need an LLMD here just send me a PM and I can send you some info.
I just want to suggest another possibility you mentioned in your first post. Genetic disorder.
My nephew has gone through many many of the same problems and symptoms as your son due to a genetic disorder. Ear & throat, cardiac, massive GI issues, orthopedic/joint problems, fatigue/dizziness, etc. His disorder (partial 22q deletion) carries over 800 symptoms and manifestations.
I never would have believed one child could go through so many unrelated things if I didn't see it for myself. A geneticist can easily do a screening.
Also, if your son had pinworms, that's a normal childhood infection that almost every child gets at some point. They are only in the lower GI tract and can't survive in any other area of the body. It's very different from a parasitic co-infection of lyme.
posted
And I thought dealing with illness for 2 years was hard! I am so sorry for the lifetime of illness and pain and medical treatment that hasn't gotten to the root cause. I am also the parent of a sick child. So hard.
As i read your post, it sounded so typical of what many Lyme patients endure before a diagnosis. It would be a good idea to consult with a Lyme literate doctor. As mentioned above, is there a possibility that either parent may have been bitten and then passed it on to your child? What is referred to as Lyme disease isn't just borellia, it is very complex and involves many other things.
I hope you get answers soon.
Posts: 312 | From Utah | Registered: Nov 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son's projectile vomiting was diagnosed as CVS or cyclic vomiting syndrome also nick named migraines of the abdomen. His 19 doctors and ER's and hospitalizations did nothing for him. It was Lyme treatment with a good ILADS doctor that took him from bedbound and in pain to back at school. Coinfections were a huge part of his illness along with viruses.
His fainting and weakness issues were from POTS caused by Lyme.
Puberty was a very difficult time. Everything went wrong in his body.
Get tested, pick a good doctor, get treated and things will start to turn around.
I have found it to be a part time job when it comes to the amount of work that it takes to work on wellness. It has been worth it!
How is your health? Any odd things going on?
Best wishes,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Tammy N.
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Member # 26835
posted
Wow, some story. So sorry for all you are going through.
Here's my take: I think he needs to be seen by a good LLMD who will know how to cover ALL of the bases. In addition, I need to echo what glm1111 has written. By far, it seems parasites are the most undiagnosed and untreated infection. It is finally gaining more of the spotlight (thanks to Dr. K), but even still, good docs are not sure how to treat. After being sick for several decades and trying everything to get well, I finally am now aggressively treating for parasites.... AND AM SEEING RESULTS. You can check out some of my recent thread and posts if you would like to know more. Also, read as many posts of glm1111 as you can. She has been a major force on this board encouraging folks to treat. After 30+ years of being sick, she is finally well! That says a lot. And that is why she keeps patiently, faithfully posting.
The fact that you KNOW your son had parasites SAYS A LOT. And it's obvious your son has had health issues from the beginning of his life. There is no way his compromised immune system could have completely eradicated this infection, imo.
I've done an enormous amount of research throughout the years and I'm now coming to the opinion that I think parasites are one of the most major key players. I think they are the reason we stay sick and cannot get past the Lyme and co-infections.
I sincerely hope you look at treating parasites. There would be no downside.
Wishing you all the best. God bless.
Posts: 2238 | From East Coast | Registered: Jul 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Thanks for your valuable input Tammy. Really appreciate it.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
How am I doing? hmmm... I have quite a history as well, but it doesn't really seem to be related to Lyme (or each event for that matter).
Two days after my son was born, I developed superficial phlebitis in my leg, requiring surgery to remove the clot.
Three months later, I began having severe abdominal pain. After an EGD, I was diagnosed with/treated for H. Pylori.
Seven months later, one of my varicose veins (I have many) "surfaced" above my skin, and had to be sutured back into my leg because every time I bumped it, it broke open and spurted blood everywhere.
Two months later, I became violently ill with the flu for several days. (I remember - it was my son's first birthday, both my mom and I had the flu and my husband had to have his gallbladder removed! BAD day!)
A year after that, I began having severe back pain and was diagnosed with degenerative disc disease. I underwent physical therapy, steroid treatment and wore a back brace and it got better.
A year or so after that, I became very depressed and was diagnosed with and treated for postpartum depression. Eventually got off of the meds from that.
Over the next decade, I was diagnosed with IBS (which mysteriously disappeared a year later and never came back) and iron deficient anemia (which I still suffer/struggle with today).
I gave birth to two more children (who are now 5 and 6) and developed Gestational Diabetes with both.
About 5 years ago, I started having a lot of back pain again. I developed sciatica and began PT and steroids again. They were unsuccessful, and I bounced around to various doctors/PTs for about a year. Then my old degenerative disc gave way and I had to have a discectomy.
Shortly after healing from that, I began having severe fatigue and achiness. My doctor blamed it all on the anemia (which I have definitely had since at least as far back as 16 years old). He tried iron pills to no avail (my body simply would not absorb them easily and my stomach couldn't tolerate them). Eventually he ordered a Retic Count and said something about my blood cells being an odd shape and not carrying enough oxygen, but he was unable to ever do anything about it. I switched to a new doctor. He concurred I had iron deficient anemia, but did not agree that was the sole reason and tested me for diabetes, which was positive. I am now on daily diabetes medication.
About a year ago I started having severe back pain again. I also just "felt ill" a lot. After a year of complaining and symptoms worsening, my doctor sent me to GI, who ordered a Hida Scan, which showed low EF. I spent 10 days in the hospital in March (after being unable to eat anything for weeks, and therefore unable to take my diabetes meds, and losing 23 pounds in 3 weeks). They ran a bunch of tests, and removed my gallbladder. I feel a LOT better now, and my back pain is finally gone. However, I am having absorption issues with Iron and Vitamin D. When I was in the hospital, they said that my Vitamin D was severely deficient, and my iron was basically non-existent (my iron was 3 and my Vit D was 8). I am now seeing my regular doc, a hematologist (for IV iron therapy), a nutritionist and an endocrinologist (for the diabetes).
So, oddly enough, I have a very spotted history as well, but nothing even remotely similar to any of my son's issues.
Posts: 15 | From Maryland | Registered: May 2012
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posted
Oh, I forgot... two days after my (now) 6 year old was born, I wound up admitted to the hospital for severe abdominal pain (again). They did another EGD, and found stomach ulcers.
And I am currently seeing a vascular surgeon for my severe varicose veins and edema, and I have been diagnosed with veinous reflux. We are awaiting approval by the insurance company for Veinous Closure on both legs.
Posts: 15 | From Maryland | Registered: May 2012
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posted
And then there is my fourth child, who was born with severe food/medicine/environmental allergies. She first tested positive when she was 11 months (and having NEVER had any exposure to her worst allergens!) and they thought she was going to go into anaphylactic shock in the office from the skin prick for peanuts, her reaction was so bad!
She got chronic sinus infections, and when their "go to" antibiotic would no longer work, they tried a new one. She stopped breathing from that one.
She is now 5, and was just diagnosed with ADHD, a minor neuromotor dysfunction and several sleep disorders.
*SIGH*
Posts: 15 | From Maryland | Registered: May 2012
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I had a progression of symptoms very similar to yours.
I had symptoms throughout my life growing up but never really felt like something was wrong until I got pregnant.
The pregnancy just pushed me over the edge. I also had my gallbladder out and felt better for a little while and then everything just got worse.
It took me four years after my pregnancy to get dx with Lyme and my 5 yr old son is also positive for Lyme.
I went into labor at 29 wks I carried him to 38 wks luckily. We both had fevers when he was born. He had respiratory failure and symptoms of sepsis and was hospitalized on iv abx for the first 7 days of his life.
He is doing well but we will be treating for sure now that I know what is going on.
My little sister and brother also have health problems possibly Lyme. My mom is in her 50s and is wondering if she could have given it to all of us. There is no way of knowing for sure.
My point is that I would definitely take Lyme and cos into serious consideration.
I hope you find answers. My best wishes for you and your family.
Posts: 253 | From CA | Registered: Jun 2011
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posted
Some observations after reading your son's history.
First off I think there are multiple endocrine issues which do not seem to have been adequately diagnosed and treated.
The sensation of something stuck in his throat and a thyroid nodule makes me think he may have an undiagnosed thyroid condition.
The changes in blood pressure and pulse from sitting to standing do indicate possible POTS but it could be simply adrenal insufficiency at this point and may have not actually progressed to the point of being labeled as POTS. Neurally mediated hypotension is another term that could apply in some cases.
But the bottom line is that POTS is generally a symptom of some other stressor on the body. Craving salt is another possible indicator of adrenal issues.
Peeing blood could of course be a sign of babesia.
All the G.I. symptoms could also be from bartonella.
In my opinion given his long history of ill health he probably has multiple infections -- some could be viral, others could be bacteria, or lyme but it is very unlikely that there is a single infectious cause of so many imbalances.
Personally I would schedule appointments with 2 or 3 different doctors. I would schedule an appointment with an LLMD. Also an appointment with an ACAM physician -- they are into functional and environmental medicine and will look at the entire body rather than just focusing on one system like a specialist does.
You can search for a doc based on location or specialty.
I would probably also make an appointment with the best Chinese herbalist you can find -- preferably one trained in China. They look at medicine from an entirely different perspective than regular AMA docs.
The reason I suggested an LLMD is because even though he has a long medical history it looks like the real change started after lacrosse which would obviously be a high tick exposure risk. And then there seemed to be a 2nd trigger for worsening symptoms after the camping trip.
He also had what would be considered a herxheimer reaction to antibiotics. The incidence when his fever went up and he got sicker when he was given antibiotics.
Good luck and be sure and let us know what he is eventually diagnosed with.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Phlebitis is a symptom of hypercoagulation. Hypercoagulation happens when fibrin in the blood is elevated. Fibrin becomes elevated as an immune response to an ongoing systemic infection....like Lyme.
Degenerative disc disease seems to be common with Lyme, perhaps related to low magnesium and other deficits.
Depression is a symptom of low magnesium, which happens with Lyme Disease. The Lyme bacteria use up the magnesium in our cells, causing many problems.
IBS, or Irritable Bowel Syndrome, may be caused by hypercoagulation.
Anemia may be a symptom of Babesia. Or not. B12, either injections or sublingual, might help.
Lyme Disease does something to the endocrine glands. The pancreas, insulin resistance, metabolic syndrome, diabetes. It's a bi#ch.
Bea mentioned Chinese medicine. Zhang's Protocol uses modern Chinese medicine, and he practices in New York City.
Regarding your fourth child, sinus problems are related to hypercoagulation...high fibrin. Systemic enzymes like Serrapeptase can help. Google for research articles.
posted
Thank you so much for everyone's input! You all are invaluable!
It definitely makes me wonder about my youngest daughter as well... But definitely is helping me to sort things out with my son. We are meeting with his pediatrician on Thursday, and I have ordered records from every hospital he has ever been to. Now I am working on all the labs he has had things done at, and next up will be his pediatricians. Luckily, his current pediatrician is WONDERFUL and knows full well that there is something "greater" going on with him than just all the individual diagnoses, and she is helping me to sort through it all and figure out where to head next. I talked to her on the phone the other day about the possibility of it being a TBD, and she was in agreement that it very well may be.
Posts: 15 | From Maryland | Registered: May 2012
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posted
My heart breaks reading your posts and the struggles your son is having. His story is so similar to my daughter who is now 18. Long story short, she has experienced about 99% of what your son has.
I can say she has been sick with one thing or the other since she was a year old. Fast forward to age 15 and all hell broke loose. Many specialists later, the 'best' care at Children's hospital and assurances that they would be able to figure out was wrong with her, and get her on the road to good health-never could get an official diagnosis.
She was diagnosed with many 'syndromes' which in my mind are usually just a label when they can't find the answer.
How did we find Lyme? After the Infectious Disease doctors couldn't diagnose her, she was given the label of 'Post Viral Fatigue Syndrome'. I blithely accepted it and found a specialist who would be able to treat this syndrome.
Little did I know at the time, but the fatigue doctor was a Lyme Literate Naturopath. At the intake appointment she went through the foot high stack of lmedical records, read through the intake paperwork and looked us square in the face and said my daughter had Lyme. How could that be? She had already tested negative for that?
She explained that she must have testing from a specialty lab to get an accurate result. So we had her blood drawn and sent to the lab. 4 weeks later my daughters labs did indeed show that she had Lyme, Babesia, Bartonella, Erlicheosis, Mycoplasma and Chlamidia Pneumonias.
She then went on to explain how these infections are directly responsible for wreaking the havoc on my daughters body.
Tears ran down my face. Finally a 'reason' for her life of illness and pain. She's been in treatment now for 2 years. She's made progres, but it's been slow. We keep plugging away one day at a time. She will get better. She will get a life.
Please, please, please watch Under Our Skin. I am fairly certain that you will 'know' after watching it what your path will be.
I am glad to hear that your pediatrician is helpful. However most doctors don't understand Lyme, especially a case like my daughter's and possibly your son's.
Lyme Literate doctors and testing can be expensive. But not going to a LLMD and not getting the proper testing, will only delay getting a diagnosis and beginning treatment. Or rule it out.
Please check out this link. This Dr has treated tens of thousands of children with Lyme. The website dedicated to the children he's treated has a lot of information.
You might also want to consider RIFE therapy for that reason, though I'm not sure about it with children. You might want to consult a LL ND (naturopathic doctor who would know more about rife, and other support to help keep c. diff away. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- MDs are not allowed to bring up the matter of RIFE machine. However, if you ask a LLMD, they would be allowed to convey what other patients may have reported to them about their experiences.
Some LL NDs are able to guide RIFE treatments, although, if for a child, be sure you find one with experience with children.
Some LLMDs work with LL NDs or can refer you to one. Best if they know each other.
Regarding a full range of supplements, when possible, it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present. -----------------------
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
RIFE links, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
We went to see an ND today... he believes my son has Lyme and has begun him on various supplements.
Posts: 15 | From Maryland | Registered: May 2012
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posted
I don't know where you are in Maryland, but there is a showing of Under Our Skin tomorrow night (Monday), followed by Q&A with a LLMD. It is in Silver Spring/Kensington. It is free.
Depending on your funds, if I were you, I would make an appointment with Dr J in Connecticut (someone provided the link above) ASAP for your son.
And consider that your daughter probably has Lyme, too.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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