Medical Mystery Is Killing My Friend's Son. Doctor's Have No Answers!

I am here pax

gonna skip all the formalities and get to it in your own language

this is a tough one but here is what I suggest

First...did they do a CT without the radio dye? The radio dye can often block things on the film or make them appear less.

I would recommend another chest x-ray as there may be a chance a fungal ball is growing in one of the lobes.

Next...Prevacid and Prilosec are great but if they do have epigastritis or an ulcer, it is often found that the excess acid can be brought up by belching, vomit or just having a damaged esophagus. When that acid moves upward it can be breathed in and erode the tissue of the lungs, bronchitis, and bronchioles as it is a gas rising not a liquid.

A good endoscopy will give you a look into the esophagus, stomache, duodenum, and small bowel. That's a nice clear picture into most of the digestive system and is less invasive than any surgery.

Now prevacid and Prilosec are great proton pump inhibitors but Nexium is my suggestion as it will cure the problem as opposed to the slower process of the others.

now with the GI tract done...the chest is next. That white film is indicative of infection of fungal coating as you well know. The dots could be stained sputum so I imagine some blood is coming up. Poisoning is possible but this seems rather slow for an acute poisoning.

If they haven't done CT minus the dye I would go for that.

Now a big question for me is this...

Is travel a problem?

If not I would skip the other hospitals and head toward the Mayo Clinic. That's preferable for an aggressive medical solution as they will check in and not check out until every specialist possible can see them.

Now you know I've switched specialties to psychiatric so I am going to also recommend that that they see someone in that arena. Stress as you know can severely exacerbate symptomology.

So my recommendations as a summary...

Non-dye/non-tracer CT
Chest X-ray to look for fungal ball
Endoscopy and probably follow up with Nexium and lose the prevacid/prilosec
If possible, move treatment to Mayo for a more aggressive approach

I will talk to you on AIM as soon as I can but message me back here so we can chat while I am at work tomorrow night.

-Kyo

Also has anyone done and ABG? I assume a full chem panel was done? Also, if they do another chem, have them add an H. pylori count.

Maybe also a gallbladder function check via hydrascan with tracer

-Kyo

I feel very bad for the family, it has got to be very frustrating to keep going to doctors, but not getting results.

Please check out this information. Believe it or not-- Hydrogen Peroxide - 35% FOOD GRADE - not normal but "Food Grade"

drinkh2o2.com... below from this site:

Tumor cells, bacteria, and foreign elements in the blood can usually be destroyed with hydrogen peroxide therapy. Surgery and chemotherapy destroy brain tissue. Intravenous infusion of hydrogen peroxide may be the greatest breakthrough ever for brain tumors. Intravenous infusion of hydrogen peroxide also helps pulmonary disease, gangrene, arterioslerosis, aids, flu, asthma, cancers, etc.

Emphysema is one condition in which intravenous infusion of hydrogen peroxide is best. Emphysema is destruction of the alveoli, the small air sacs in the lungs. A vaporizer improves night time breathing by using at least 1 ounce of 35% hydrogen peroxide mixed in 1 gallon of non-chlorinated water. Hydrogen peroxide infusion has the ability to cleanse the inner lining of the lungs and restore the ability to breathe. Within minutes, oxygen from hydrogen peroxide begins to bubble up between the membrane lining, the lungs sacs and the accumulated mucus. The patient begins to cough and expel accumulated material in the lungs. The amount of bubbling, coughing, and cleansing can be regulated by simply turning the hydrogen peroxide on or off. As the hydrogen peroxide cleans the lung surface and destroys bacterial infections, the patient regains the ability to breath better.

www.earthclinic.com...

from above site: It is important to know that this method could potentially save lives, especially when people are suffering from serious complications of pneumonia and their immune system is down. People often die of pneumonia as you get older. Usually it is a result of a fungus/or other bacterial organisms making home in your lungs. The inhalation method is fast and goes directly to the nasal passages and the lungs.

www.cancertutor.com...


Hydrogen peroxide - gets oxygen into the body.. it has gotten people out of wheel chairs even who have suffered from emphyzema.

Please - you get Hydrogen Peroxide at health food stores etc. ONLY USE 35% Food Grade!!

Please look at the above websites, Hydrogen peroxide is used to kill virus and bacteria in the body, but Especially the lungs!! This really works, and it also cures cancer by getting oxygen to all the cells.

Please have them contact an "alternative" doctor, after they read about Hydrogen peroxide, because it sounds like, if they chose to look closely and consider this, that he would need introvenous doses of it.

Please look at the sites I have included.

Originally posted by paxnatus
I couldn't agree more. I am her facilitator at this point, I am a nurse and pushed her to take them to MCV Medical College of Virginia, one of the top hospitals in the country.

Ha! You should be able to scare the surgical gown off just about any physician there, then! And you can get her to give a coherent timeline on what was done and what the results were of each treatment.

she hadn't even recognized some of older boys symptoms as being neurological in nature, so for the first time a pediatric neurologist is involved. Thank God!! Why this hasn't happened yet is negligible and unheard of!!

The advice I gave is based on some of the work I'm doing for my PhD... so let me add another piece that I have identified that may help provide a good resolution: sometimes the medical community has an "idealized" picture of a disease or syndrome and don't recognize something when one parameter (such as age, ethnicity, environment) doesn't fit the picture.

An example -- I interviewed a friend who was just diagnosed (at age 40) with very early onset Parkinson's. The initial diagnoses were that he was suffering mental breakdowns, that he needed psychiatric drugs (he has had facial tics ever since he was young and has an odd way of blinking his eyes as though there's something in them), that he needed counseling... six different doctors. Several said, "well it sort of looks like Parkinson's but you're only 38 and that's too young for Parkinson's." They also missed the sleep apnea... so you can imagine what shape he was in after 3 years of treatment with some of the drugs for anxiety and depression as the Parkinson's worsened along with the sleep apnea.

Now that he has a good diagnosis, he's back to his old self. But it really was a "close thing" because the pattern of his condition was outside the normal range that is presented when this disease is encountered.

Much as I dislike the show, "House", some of the "outside the box"-ness expressed there may be needed. What if it's a double-whammy combination of the environment and something else? What if... what if...?

I'm no physician, and I'm not in the medical field, so all I can talk about is the social aspect. I hope you can convince them to act as facilitator -- you'd know when the doc was blowing smoke at them and get it stopped PRONTO!!!

They may also need to talk to the hospital social workers to get help with the medical bills. I can only imagine how high they're mounting....

Oh yes.... get a sample of the molds and go beat up some mycologist until there's an identification.

I ran a search on PubMed and am concerned at the variety of molds and the differences in treatment. If that's what it is (or if that aggravated it), a correct identification is the first step to a good treatment.

I am so sorry to hear about your friends. I am not a doctor.
But I have used these natural ways to help myself when having been very ill.

Probiotics - Dr. Udo's Super 8 from a health food store refrigerator section - To help restore the immune system - adding good flora to the intestines and especially if they have been on antibiotics. -

Caprylic acid in capsules/coconut oil to reduce the mucus caused by an overgrowth of yeast. Candida can set in - and cause serious havoc within the system.

Water with a couple of drops of grapefruit seed extract for fungus -

Boiling onions and drinking the juice in teaspoons will help as an expectorant and free up some of the sinus.

No sugar/milk products or products that cause mucus or sugar to lower the immune systems ability to fight back. This includes high sugar fruits - banana - watermelon.
No fungus foods - peanut butter and mushrooms.

It's important of course to check with your doc regarding these suggestions.

Sending much light, love and prayer to you and your friends.

sadly its possible you blew up some kind of naturally occuring anthrax? I hope not..It could also be a form of mold or fungus or both..Try some natural remedies and go for unconventional things that are medicaly safe to do, be careful and dont mix something if you dont know its safe to.

This advice is free and i am not liable for anyones use of it.

I recently got a cold 2-3 weeks ago, still have it. Very lame, lots of coughing and runny nose. Ive gone through at least 5 rolls of toilet paper
as nose paper.

Good luck, maybe try praying too.

reply to post by paxnatus


I do NOT KNOW that the following would be of help.

However, this source has helped many folks with deadly incurable and very rare diseases.

He's been particularly helpful with terminal level massive allergies. I forget what that's called.

He's a pastor but he's consulted by an increasing list of MD's.

His book is:

A MORE EXCELLENT WAY.

I think his website is

BEINHEALTH.COM

His name is Henry Wright.

He became increasingly upset that only 5% of the people he prayed for were getting healed. After God began to show him why--his success rate--with the patient's genuine cooperation ahead of time--as he requires or he won't pray . . . is probably near 100% . . . certainly well above 50% IIRC.

Anyway--if I were a parent in such a situation as described, I'd beat fast feet to that source.

I haven't seen this mentioned, but does anyone thing this could be Legionnaires' disease?

Patients with Legionnaires' disease usually have fever, chills, and a cough, which may be dry or may produce sputum. Some patients also have muscle aches, headache, tiredness, loss of appetite, loss of coordination (ataxia), and occasionally diarrhea and vomiting. Laboratory tests may show that patients’ renal functions, liver functions and electrolytes are deranged, including hyponatremia. Chest X-rays often show pneumonia with bi-basal consolidation. It is difficult to distinguish Legionnaires' disease from other types of pneumonia by symptoms or radiologic findings alone; other tests are required for diagnosis.

Been talking to boys mom all evening until just about an hour ago. Here's
what i know. Following my last post I received phone call from my friend saying that he could no longer stand. As of yesterday he could no longer walk
but could stand. He also has lost grips in both hands. he can move his arms but can't pick anything up. They rushed him to MCV where several neuro . are looking at him. He is extremely paranoid screaming non stop. This is not like this child at all. Now they are looking into Guillain Barre syndrome. Here is a
link to explain a little about it. www.mayoclinic.com...

However, toxic mold poisoning looks very similar to Guillain Barre. She did speak to Dr. Shoemaker the mold specialist and has apt. Tues. which is most
likely null and void at this point since he is in MCV.

The paralysis advancing so rapidly is scaring me to the death!
Please pray for their family and especially Coleman!

Thank you, everyone!

Originally posted by KyoZero
I am here pax

gonna skip all the formalities and get to it in your own language

this is a tough one but here is what I suggest

First...did they do a CT without the radio dye? The radio dye can often block things on the film or make them appear less.

I would recommend another chest x-ray as there may be a chance a fungal ball is growing in one of the lobes.

Next...Prevacid and Prilosec are great but if they do have epigastritis or an ulcer, it is often found that the excess acid can be brought up by belching, vomit or just having a damaged esophagus. When that acid moves upward it can be breathed in and erode the tissue of the lungs, bronchitis, and bronchioles as it is a gas rising not a liquid.

A good endoscopy will give you a look into the esophagus, stomache, duodenum, and small bowel. That's a nice clear picture into most of the digestive system and is less invasive than any surgery.

Now prevacid and Prilosec are great proton pump inhibitors but Nexium is my suggestion as it will cure the problem as opposed to the slower process of the others.

now with the GI tract done...the chest is next. That white film is indicative of infection of fungal coating as you well know. The dots could be stained sputum so I imagine some blood is coming up. Poisoning is possible but this seems rather slow for an acute poisoning.

If they haven't done CT minus the dye I would go for that.

Now a big question for me is this...

Is travel a problem?

If not I would skip the other hospitals and head toward the Mayo Clinic. That's preferable for an aggressive medical solution as they will check in and not check out until every specialist possible can see them.

Now you know I've switched specialties to psychiatric so I am going to also recommend that that they see someone in that arena. Stress as you know can severely exacerbate symptomology.

So my recommendations as a summary...

Non-dye/non-tracer CT
Chest X-ray to look for fungal ball
Endoscopy and probably follow up with Nexium and lose the prevacid/prilosec
If possible, move treatment to Mayo for a more aggressive approach

I will talk to you on AIM as soon as I can but message me back here so we can chat while I am at work tomorrow night.

-Kyo

Thank you Kyo,
I don't know about the Non-dye/non-tracer CT. I know lung CT was clear a day ago. They know the white in his trachea and back of tongue is fungus
but did not respond to diflucan. His blood work is normal except for high eosinophil count which shoots up during a severe allergic reaction. I would have to think his ABG's were off if the pulmonary function tests only showed
60% capacity. Just don't have the numbers. Looking heavily at Guillain Barre. Paralysis increasing way too rapidly for my taste. He's off all reflux meds. cough ceased 3wks. ago that is when neuro symptoms really kicked in.

sending u2u.

Pax

Originally posted by nardo4life
I haven't seen this mentioned, but does anyone thing this could be Legionnaires' disease?

Patients with Legionnaires' disease usually have fever, chills, and a cough, which may be dry or may produce sputum. Some patients also have muscle aches, headache, tiredness, loss of appetite, loss of coordination (ataxia), and occasionally diarrhea and vomiting. Laboratory tests may show that patients’ renal functions, liver functions and electrolytes are deranged, including hyponatremia. Chest X-rays often show pneumonia with bi-basal consolidation. It is difficult to distinguish Legionnaires' disease from other types of pneumonia by symptoms or radiologic findings alone; other tests are required for diagnosis.

yes, I did think of this. Of course getting these docs. to listen is another story.
Will pass along info thanks.

If this were happening to me I would find a doctor that would 'culture' what was in their lungs. It could be anything. Some scary some not so scary. I had a friend that fell in a creek when he was young and got asthma from it.

Originally posted by paxnatus
Been talking to boys mom all evening until just about an hour ago. Here's
what i know. Following my last post I received phone call from my friend saying that he could no longer stand. As of yesterday he could no longer walk but could stand.

That's horrifying.

One last thing my husband mentioned that should be brought up -- this cropped up at a farm. Now, farming practices (particularly in the past) aren't environmentally friendly.

Has anyone checked for the likelihood of pesticides?
www.rst2.edu...

Now they are looking into Guillain Barre syndrome. Here is a
link to explain a little about it. www.mayoclinic.com...

I agree with you here that I think this is a "shot in the dark".

I'm worried for little Coleman. Please keep us updated... and see if anyone has asked about pesticides/insecticides. (edited to add that the source of the pesticide might not be their farm but a neighbor's farm.)

[edit on 13-2-2009 by Byrd]

Originally posted by paxnatus
Youngest cough has calmed some – THE BIG EYE OPENING DIAGNOSIS FOR ME WAS REFLUX IN BOTH OF THEM.

if i ever rarely get acid reflux. .heartburn.. i do the old wives cure of taking a shot glass of apple wine vinegar..
cures it instantly.

hope this helps.

-

Many people have some very good ideas... but I think we can rule out some of the suggestions. Legionnaire's has a distinctive X-ray pattern that would immediatly be evident (along with positive lab results, especially elevated WBC's (along with a left shift). I'm not an allergist... but my suspicions would include pesticide poisoning (Link) or molds. Both can cause the pulmonary symptoms if inhaled. Both cause neurological symptoms. Both would likely not show up in a CBC or CMP.

The mold would likely be exacerbated by the steroids (which cause a mild immunocompromised state, reducing inflammation, etc..). Diflucan does not always cure an extensive systemic fungal infection (and can cause nausea and vomiting as well). The more likely medication is Amphotericin B. I'm not a fan of this medication, especially in children. It is dangerous and has many bad side effects, but it can be quite effective in treating systemic fungal infections. ( I include a wikipedia link, which is somewhat correct in its assessment.Amphotericin B)

The other culprit might be a pesticide/herbicide/fungicide. Some of these poisons are fat soluble... and as fat is burned (for example, if the child is losing weight, fat is being used) the symptoms occur in a worsening-bettering pattern. The thing is... you have to get the diagnosis correct. You must treat for the specific pesticide.

(By the way, both of these can cause a guillain barre type of neurological reaction).


I hope that I have helped a bit here. As I said, I'm just a simple ER Doc. I do not claim to have expertise as an allergist, pulmonologist, or neurologist.

Good luck. My thoughts are with your friend and her sons.

Sounds like aspergillosis. Difficult to diagnose as false negative results are common. PCR may be needed. Btw, you can contract this disease from eating aflatoxin contaminated foods, e.g. peanut butter, as well as via mould inhalation.

Just want to apologize for not updating sooner. I've been really tied up with this and the family.

I will post a full update tonight. Please, bear with me. This has been a tough week for everybody.

I cannot thank you enough for all suggestions, ideas, and recommendations. The outpouring of thoughts and prayers and help is truly overwhelming. Every one of you have offered so much to help lift my spirits and encourage my faith. I will say, never underestimate the power of this community you are all wonderful.

I will give you a full update soon.

Sincerely,
Pax

reply to post by Byrd


Hi,
Get an environmental chemist or sampling team out to the old farm house. How old is the farm house?
You may be able to find not only the type of mold (off the base of the furniture) but if there are dangerous chemicals used in the past there as well.

My grandmother used chlordane in books. She used chlordane in rugs.
She kept a barrel of the powder after it was banned for insects.

My parents used DDT to powder trees (for insects).

finally check for current farming practices in the area: my cousin, a drug researcher who has a PHD in biochemistry- abruptly left my mother's funeral. My parents had tried to go 'organic' and were spraying their vineyard with silica. they called it "dust" in farmers vocabulary.
Mom's funeral was 3 and a half years ago now. They began using non poisonous silica 'dust' to be SAFER-

However their phd biochemist nephew blew a gasket politely, said this is very very dangerous stuff- it is so small it goes in side insects cells and they can't stay alive- and it is so small it goes inside the lungs right into the blood stream and it obliterates important cells. T cells.

Yes so after my parents started dusting with silica for 'safer farming practices' my mother got a huge cancer, wandering and tending her little vineyard making her wines so lovingly. Dad worked long distance only home week ends, he is not dead. After she died, he pulled the vines out. Acres of them.

You need a record of the sprays, dusts of all surrounding farms (ie "drift" is up to two miles in the fog) presently used this past two years.

You need an investigation for organophosphates and old chemical residue with an outrageous lifespan- it is still volitile years after applied.

finally the weight loss: those exposed to chemicals stored in fat are poisoned and get very ill when the fat cells release them as they are loosing weight.

I hope you get your answers and investigation in time to save this little guy. & build him back up.

-sierraheartrocks

Pretty much any advice I would've given has already been discussed.

Good luck. Let us know how it goes, you're in our thoughts and prayers.