Has there been an update???
21
I enjoyed reading the discussion and various ideas for this case.
Echoing several of the comments here, as well as her Ped GI’s recommendation for complementary modalities, such as acupuncture. Based on the clinic notes, doesn’t seem like she has tried it yet.
Just wanted to share this anecdote:
Scott Forstall talking about his experience with acupuncture https://www.youtube.com/watch?v=ZTpvgtLQMJk
It shares some similarity with this case – persistent vomiting after seemingly some viral/infectious exposure.
Acupuncture is relatively low risk, doesn’t rely on a Western diagnosis, and much less invasive than all that she has been through.
I sincerely hope she is able to find some relief soon.
When and how do we find out the results of this question? I'm very curious to know!
12
Gastroparesis and esophageal motility disorders are common symptoms of Scleroderma, a connective tissue disorder believed to be auto-immune. Since it affects the vascular system, it could also explain the POTS- like symptoms although as noted in the original article her blood pressure remained low in spite of her heart racing, perhaps suggesting a cardiac dysfunction. Multi-organ/system dysfunction is common in systemic diseases like scleroderma due to vascular involvement, although she is a still a little younger than the typical patient. The other symptoms ( light-headedness, weakness, back and muscle pain) could also be explained by insufficient oxygen/nutrients as a result of inadequate delivery or by vitamin/ mineral/ energy deficiencies due to inadequate intake- she's not really able to eat very much.
1
Looking at this again I am struck by how extraordinarily pale she is. Her skin looks pasty. Of course, they did photograph her against a pale, beige background, which she matches eerily. Is this just a manifestation of nutritional deficiencies resulting from her problem keeping food down, or could it be significant?
I think parasites have moved into her medulla longata and are breeding there. Apparently, doctors are weak on diagnosing and tracking parasites in this country.
2
Responding to those who criticize the primary care doctor for sending her to the ER to be evaluated for rabies vaccination- this is where this evaluation is done, not in the primary care office. Primary care offices don’t stock rabies vaccine. This referral was completely reasonable.
3
That would be me. I worked in an ER for few years, as a technician. What evaluation? For a scratch on the toe? By whom? A resident student? What exactly is the role of a pediatrician? Are they not able to take a history? Don't they have experience evaluating a superficial wound, a scratch, on a child? Is the mind of a pediatrician so compartmented that his mental faculties cannot make an evaluation of the need for a rabies vaccination? How many doctors (?) did the patient see in the ER over her many visits? Where is the continuity of care that is supposed to be the responsibility of the "primary care" physician?
When a patient was seen in our ER they were treated for the emergency and then referred to their regular "Primary care" physician who then took over care of the patient. The patient was not expected to return to the ER for follow up care, unless it was an emergency. Many times, routinely, if an emergency patient already had a primary care pediatrician the ER staff, like me, would call the pediatrician's office and notify them we had one of their patients. It was the patient's pediatrician who would then give the instructions on what vaccinations were to be administered to his patient.
Doctors can order a vaccine, if they don't stock it, and it can be delivered the next day. I know this because I also worked in a pharmacy. The ordering process is very efficient.
Now examine how much this costs a patient, and their insurance. Follow the money.
1
Aristotle, what in the world are you talking about? Alyce is right, if rabies is suspected, a primary care physician will send you to the ER. They don't want you to wait till "the next day" to get treated for rabies.
2
OK then. When did the patient, THIS SPECIFIC PATIENT, go to the ER to be evaluated by the ER for rabies from a scratch that occurred several days (how many days?) before? Remember, it was not a bloody, tissue tearing saliva soaked injury.
Simple question. Did the patient go to the ER the same day that the pediatrician "agreed with the mother it might be a good idea"?
Rabies vaccine is administered in three separate doses. OK, the ER could have administered the first dose. What about the remaining doses? How much does an ER visit cost, including to insurance? How much does a quick visit to the pediatrician's office cost, not to mention (which wasn't) continuing evaluation of the primary care physician's patient.
It is not the function of an emergency department to assume long term care of a patient who already has a primary care physician. The industry still uses the term "primary care physician" so I assume that is what they do.
But, who knows, maybe all of this was considered, but we aren't told about it. That would be an omission on the part of Dr. Lisa Sanders, the author of this article.
My daughter had something eerily similar and was eventually diagnosed with Rumination Syndrome with Functional Nausea. Initially, she got Cognitive Behavioral Therapy with a psychologist to retrain her neuropathways which they think sent heightened stimuli from her stomach to her brain after recovering from a virus or other infection. Apparently, GI docs have had much success with this treatment. Unfortunately, therapy did not help with my daughter's nausea/migraines/dizziness (she was able to learn to keep down/swallow her regurgitation). What finally worked was Neurostimulation placed on her ear to reset the Vagus nerve.
5
Autoimmune autonomic ganglionopathy a rare acquired channelopathy that can cause GI pseudo obstruction. It is caused by antibodies to ganglionic nicotinic acetylcholine receptors. This is usually a disease of older individuals, and most patients have other autonomic features. Of note is her history of orthostatic hypotension, and this could be related. This disorder has rarely been described youth. The trigger event is not known.
There are inherited autonomic peripheral neuropathies (she has a history of hammer toes, a feature that can be associated he chronic distal polyneuropathies), but she lacks the other clinical features of a hereditary autonomic and sensory polyneuropathy.
Diagnostic testing for ganglionic ach recep antibodies (a blood test) is commercially available. Other testing for an autonomic neuropathy, including skin biopsy, is unlikely to provide a specific etiologic diagnosis but could be done to more carefully evaluate for a potential autonomic peripheral neuropathy. This would supplement a careful neurologic examination for evaluation of the autonomic nervous system (pupil light reactions, skin sweating,etc...), presumably already done.
Thank you
2
Has she tried dietary changes? An elimination diet? Has she tried the functional medicine approach? It does sound like an autoimmune condition brought about by the immune response to the bite. I hope she can continue exploring and find help.
Why is no one mentioning the obvious; she got better on an antimicrobial (Flagyl) but got worse when she stopped. So, how was it that the doctor concluded it wasn't an infection? I don't follow the logic; it's the only thing she responded to! Vector-borne infections should be thoroughly explored immediately. Lyme is linked to gastroparesis and POTS and can be a multisystemic, evasive pathogen. I would also look at Bartonella and other stealth bacteria that are not often looked for but are very common. It's very upsetting that this has been going on for so long. I have seen this presentation in many TBD pts and they can get better with under proper care of a specialist. http://www.publichealthalert.org/palsy-of-the-gut-and-other-gi-manifesta...
https://www.ncbi.nlm.nih.gov/pubmed/21305487
2
I'm surprised no one here has mentioned cryptosporidiosis. I think the raccoon (or whatever it was) bite is irrelevant. Why I think it's crypto:
* it's fairly common in tropical climates
* time between exposure and symptoms within range (2-10 days, average 7)
* mom had similar symptoms but got better, as most people with healthy immune systems do
* Lashay was never tested for crypto, as it's a difficult and often overlooked test in the US, requiring multiple stool samples and tests
* Flagyl (metronidazole) treatment helped. Nitazoxamide, the FDA approved treatment for crypto, is metronidazole + a benzamidine ring, which may explain the partial effectiveness of Flagyl, helping with symptoms without clearing the parasite
4
Many people have spoken here about parasites, even though this young woman has been tested and cleared. I’m posting this only because giardia was mentioned in the article. I had a dog who had vomiting and serious diarrhea every now and then — for a few years. Often the onset of symptoms happened when she was stressed. She was tested several times for the usual parasites, including giardia, and was repeatedly cleared. Then after one particularly bad bout she was tested and came up positive for giardia. She had not been near any streams, lakes or infected animals, so I wondered where the infection had come from. I was told that he could have had the infection for a very long time, regardless of previous test results. The parasite can hide in the folds of the gut for years. A stool test will come up positive only if the parasite is active.
If you read her records, she was tested for exactly ONE parasite, giardia.
1
Liked this column a whole better when it included the solution.
7
@JsBx-
I don't think they have a solution; at least, one that fits her parameters.
2
Exorcism? Don’t laugh, I’m serious.
1
That Dr. Sanders and the Times thought it was appropriate to put a young girls name and face is dumfounding. In fact this whole tabloid like "Diagnosis" feature with the real life "House" seems more appropriate for the national inquirer or NY post. This is a persons life not content to sell and exploit. The fact that sashay has yet to see a psychiatrist or psychologist speaks volumes about the quality of care she has so far received whether it turns out to be a case of Munchausen's incipient bulemia or anorexia or something else
3
I saw the video and read the hospital notes, etc. Based on that, my best guess is this poor patient has Ehlers-Danlos, a genetic disorder. It would also fit in with the dysautonomia and gastroparesis symptoms. In addition, from watching her movements on the video, I'm fairly certain she's hypermobile--and that would be in line with at least one of the classifications of EDS (there are currently six subtypes). I would even venture to think she might even be in the Vascular category, which, unfortunately, is progressive and the most severe. Since this is based on my personal experience (I'm not an M.D.) and those I know with this disorder (including the Vascular type), it is only my opinion.
I didn't notice a consult with a Rheumatologist, although I might have missed it. The teenage years are when most people's EDS symptoms start to progress. I'd suggest genetic testing/consult for both her and her mother (and siblings if she has any).
In any case, I think it's important to get started on treatment, especially with EDS. It is not curable at the present time but knowledge is always power and this girl needs to know what's going on to best deal with everything. Btw, it is very possible that her genetic condition has been undiagnosed until now. I don't know about that animal incident or how it plays into everything but it might also be related as to worsening of symptoms due to EDS being a collagen disorder affecting every single organ of the body.
1
My form filled out hasn't appeared here. I diagnosed adolescent Munchausen's Syndrome (also know as Factitious Disorder). See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2990557/: Munchausen's Syndrome and Other Factitious Disorders in Children
Case Series and Literature Review.
After three years an organic condition would declare itself. So, one looks for other explanations.
I was struck by her bland affect, her odd gait, that none of her physicians explored family relationships. It would be seemly to ask a paediatric psychiatrist to interview Sashay.
I am a retired physician.
7
I too am a retired physician (neurologist) who arrived at the diagnosis of Munchausen. It fascinates me to see "diagnosis of exclusion" become so florid in the past three decades. Internists would benefit from more training in psychiatry.
The case has all the cardinal features of factitious illness.
It is quite interesting to see that recurrent vomiting arborized into a cluster of multiple physical symptoms, i.e. headache, weakness, fatigue, abdominal pain.
Over time she has emerged as a less differentiated somatoform disorder, what we are currently calling Chronic Fatigue Syndrome with or without Fibromyalgia.
Where is our ancient diagnosis of neurasthenia when we really need it?
3
I'm a doctor too and agree - it's a functional illness and she's in the "sick role" for the family. I'm a bit surprised that the medical details of a child are given out to the world as well as her family members' health too. This would be unethical in the UK. I'd refer her to a neurogastroenterologist as there is treament available and she will recover.
1
If it's Munchausen's syndrome how do you explain a sudden onset after travel to a tropical country? She's not a traumatized adolescent. There's no history to suggest that.
I don't think you read all of the records presented, which are still incomplete.
The pathology is among the people who are treating her. What's it called when the "health care" professionals induce a pattern of symptomatology through suggestion?
I suggest that she is not receiving competent care. Why did her pediatrician (still the same doctor as of today?) send her to the ER to be evaluated further for a rabies vaccination? Is he not competent to handle that? Or perhaps he was thinking that the ER would be making some money off of this patient? Telephone consults between doctors are not unethical, are they, if he was confused about rabies protocols? Nah. Higher throughput in the ER means more profits for the operators. Hospital administrators report on this monthly.
1
Due to a technical glitch I was unable to complete the form attached to this article, so I am commenting here in the hope that Dr. Sanders or the patient sees it.
While I have not experienced this young woman's symptoms, I have had a similar experience with other symptoms that plagued me for decades. None of my excellent specialists could diagnose them, often making wrong guesses and prescribing unhelpful remedies. Finally, in one of those flukes, a new dermatologist (new to me, that is) -- incorrectly diagnosing a patch on my elbow as psoriasis (it wasn’t) suggested that I see a rheumatologist to see if I have psoriatic arthritis. That led me to a long overdue diagnosis of rheumatoid arthritis (RA). Most of my symptoms turned out to be typical of RA, and the rest of my symptoms are typical of osteoarthritis, with which I also have been diagnosed. OA is a typical aging condition, but RA is an autoimmune disease. And there are quite a few autoimmune and rheumatic diseases.
I have found that some talented specialists can miss the obvious because they have tunnel vision. I was tested for my symptoms over the years by top-of-the-field internists and, in turn, a GI, neurologist, pulmonologist, cardiologist and ophthalmologist. Not one of them ever suggested that I see a rheumatologist. So I suggest that this young woman consult a rheumatologist to rule out diseases or disorders that fall into that category.
6
Best wishes to Lashay and her family. Her persistence is commendable. I hope that this process results not only in a convincing explanation, but also a truly effective treatment.
1
I second best wishes for Lashay--she and her family should never give up--Many have given what I would consider serious and decent responses to a puzzling condition. I'm intrigued to read about most of what the other people have written(minus, of course, the goofy somatic and juju opinions. Again, the best of luck in finding the right diagnosis. It may take time but this young girl seems to have a resilience which is encouraging and quite necessary when dealing with "zebra" illnesses.
2
She does have gastroparesis, and perhaps should be using a feeding tube (J tube) to bypass her stomach so she can keep food and water down. This may not solve her problem, as she may have other conditions as well, but it should help her general overall health.
7
This sounds like an episode of the tv show "House". She should be queried as to what she ate. If she ate fish she could have ciguatera poisoning together with something from the racoon, with some strange interaction taking place, where one malady masks, overlaps or alters the other.
Incipient bulemia or anorexia.
1
pernicious anemia Related Syndrome !
I know of one similar case: auto immune disorder. Patient required blood transfusion.
Gastroparesis and Type 1 Diabetes. Lashay needs a neurogastric stimulator and regular insulin.
I had completed the questionnaire earlier. I suspect vagus nerve dysfunction or a seizure-like condition affecting the vagus or its central nucleus. She needs a 24 hour EEG and a trial of anticonvulsants, if I'm right.
2
Please tell Lashay that one day this will all be a bad memory. She could be my great-great grand-daughter in pallor and light hair.
An autoimmune system weakened, possibly attacking her central nervous system leading to trauma, and more susceptible now to infections has probably been suggested, coupled with the psychological affect of it all.
An attempt to repress dread when drinking or eating might have aggravated her condition. Sleep uninterrupted, and vitamin D - B-12 are recommendations. Lashay (what a lovely name) might benefit from sitting in the sun; less pressure on being coaxed to eat.
Being treated like an invalid can also help to make one feel weakened and more dependent, incapacitated. At sixteen, she may be too mature to read 'The Secret Garden', or watch this British classic on T.V.
The medical profession to stay in the background, while trying to find a solution, and wishing her a full recovery with everything she likes best.
1
The cause may be purely medical. But I’m surprised there is no evaluation of the psychological/psychiatric side AT ALL in her workup. What is the rest of her life like, or what was it like before all this started? Is there any history of family trauma, or anorexia/bulimia? What about proxy munchausen?
I am not saying ‘it’s all in her head.’ I am saying that ALL factors should be considered, especially when a medical cause has not yet been found.
Best wishes to her.
7
Her early work-ups DID include a psychologist--she was assigned one automatically as part of the specialist treatment team. It says so in black-and-white--but you have to actually read the essay--reading comprehension is important.
I'm sure her "home life" and social history has been dutifully considered and evaluated to the nth degree. After three years of intense evaluations, Munchausen, anorexia, and bulimia are highly unlikely.
Just because a firm diagnosis has not been reached after three years doesn't mean this patient is "somatic." I once knew someone who waited TEN PLUS years to get a diagnosis of multiple sclerosis-- and that's a fairly common autoimmune diagnosis. During that time, she was subjected to every psychological test in the book.
Enough with the "it's all in her head mentality." It's tiresome and usually used for females (especially young ones) when doctors can't come up with a firm diagnosis. Time to get with the twenty-first century and understand some illnesses take a little more time than others to diagnose.
I suspect Chagas disease.
https://www.ncbi.nlm.nih.gov/pubmed/24502732 is an article about coatimundi in Costa Rica and infections they have. Chagas disease would fit this young lady's symptoms -- Trypanosoma cruzi infection. Chronic infection is described in https://www.medicinenet.com/chagas_disease/article.htm#how_do_health-car...
Careful inspection of a blood smear should be done and specific treatment considered.
Other infections from insect, animal and fresh water sources could be investigated as well
4
Rumination Syndrome
3
I am a certified MD and I have been witness to over a dozen of similar young individuals. Unfortunately, these patients get put into "mystery" category in the realm of western medicine.
If CNS lesions have been ruled out, I would strongly suggest seeing a Ayurvedic or Chinese practitioner. In their system, the body, mind, and diseases are modeled differently. And, in a way that allows for a wider spectrum of presentations. Diet and relatively harmless herbs (compared to Big Pharma molecule) might become helpful. The challenge will be patience, and finding an authentic local practitioner.
7
As others have pointed out, the animal that scratched or bit Lashay's foot was most likely a cousin to the raccoon, known as the coatimundi or, locally, the pizote. These animals are bold around humans and in fact, one of them scratched my sandal-clad foot furiously at a beachside motel.It hurt quite a bit but did not draw blood. What the animal's intention was I do not know. I did not become sick as a result, nor did I seek treatment for rabies. Probably this particular animal associated humans with food. Monkeys routinely throw families of pizotes from high tree branches, but as I have seen, they land with seemingly no damage.
I understand the need to take into account every coincidental association. Perhaps a form of cat scratch fever, or some such thing? Or perhaps the trip to Costa Rica had nothing to do with the genesis of this problem.
I wish Lashay a full recovery.
1
agreed - its not the scratch - coatimundi are like mosquitoes in some parts of Costa Rica and are active by day but retire to trees at night. I have been surrounded by 30 of them as they have become accustomed to handouts from humans.
There are raccoons in Costa Rica, very similar to those we have farther north. We saw them on the beach in Manuel Antonio Park, foraging for wild food and whatever beachgoers gave or left for them.
2
Thank you, Susan. I have seen only pizotes in Costa Rica, but the raccoon is a very adaptable animal, very fierce as well. The pizote that scratched my foot, actually seeming to dig a burrow in it with its very hard and tough fingernails, was I think trying to communicate a request for food. The cat which owns me has a similar trait, scratching anything furiously when she wants food or some other attention. I think it is remarkable that so many animals relate to humans as a food source.
A couple of other commenters suggested a problem with the
Vagus nerve, which was what I was also wondering about.
Also, the article mentioned Lashey is maintaining her weight by
swallowing the food that comes back up after she eats
Question: why does that stay down and isn't revomited?
That's why I was thinking the Vagus nerve is involved, and the initial
food triggers vomiting, but the vomit that's again swallowed is more
smooth and doesn't cause a reaction from the Vagus nerve.
6
This is a good question. Interesting that Susan Miller was the first among the commenters listed in the Readers' Picks to mention it. The answer may provide the key to proper diagnosis.
2
Training, Susan. She was trained to override the urge vomit it up again. If the answer was simply to put her on a liquid diet, don’t you think that would have been tried already? The regurgitation reflex works in waves, so I suspect that if you swallow quickly enough after an “upchuck,” you might trick your vague nerve. I am not trying this out to see whether it’s true!
Sort of tangential, but dogs can be born with — or develop with age — a few swallowing problems, one of which is called megaesophagus. They vomit up everything immediately, and can aspirate food. One way to manage it is to train them to eat in special chairs that keep them upright and still while eating.
The vagus nerve is fascinating. Mine is very reactive to certain positions. When I practiced yoga intensively I could not do backbends because I would get horribly nauseous and dizzy. Vagus nerve at work.
I think it is important for all of the people here (including her physicians) to know that she wasn't bitten by a raccoon. These (https://en.wikipedia.org/wiki/White-nosed_coati) - called pizotes in Costa Rica - are prevalent there, and they are diurnal, not noctural. I know that, at this point, rabies isn't a concern, but I am bothered that 3 years on, no one checked to see what she was actually bitten by, to see what that animal might have been a vector for.
3
Raccoons are in Costa Rica. Google Image search Manuel Antonio Animals, and you'll find a ton of photos of raccoons eating out of trash bins. Yes, they might have confused a raccoon for a coati, but I doubt that is important here. Even if they did know it was a coati, very little is known about coati pathogens, so that wouldn't really give doctors much to work with.
1
She was not bitten at all. Merely scratched.
The limitation of your diagnostic methodology, is how Western Med tends to separate disease from the person it occurs in. If it IS Mind-Body issue, a syndrome or functional disorder, which is nervous system based, what Science now calls the Gut-Brain connection, then its due to a perfect storm of factors. You allude to it, but don't seem to have pursued it further. For example, what if that raccoon attack was more terrifying than the family wants to admit. Its very American to ignore emotions and "be strong" and "just do it." Perhaps that is a factor as much as the intestinal bug mom and daughter both got. I would want to know, How is this girls sleep? Has it changed at all? How is her menstrual cycle? How are her bowel movements. Does she seem like an anxious type, perfectionistic, tense? Has anyone talked to her, at length, about what's going on in her life, socially, aside from this issue.
In Ayurveda she has a disruption of the Aparna Vata which guides digestate downwards. In Chinese Medicine, she has "rebellious stomach Qi" probably due to a combination of the "damp" condition produced by the initial gut infection, which has damaged the ability to process, what we call the "Hun/hua mechanism" . She may also have "stagnation of heart or liver Qi" which is very common, esp in a teenager. Acupuncture and Chinese Herbal medicine are very very likely to help. We have numerous different herbal formulas that address complex functional gut disorders..
6
I filled out the special section several days ago, but what I wrote there doesn't appear here.
It looks to me like: Cyclic Vomiting Syndrome.
Generally, the most common causes of Cyclic Vomiting Syndrome are:
- migraine headaches
- infections
- exposure to temperature extremes
- lack of sleep
- overexertion
- allergies
- food
- fasting or overeating
- alcohol consumption
- menstruation.
Several of these combine to produce the syndrome.
Her predisposition to migraine headaches is one clue because migraine mechanisms are often involved. Because daughters inherit their Mitochondrial DNA (mDNA) from their mothers both mother and daughter being afflicted simultaneously is another clue, along with the fact that CVS usually resolves itself by aging.
While vacationing in Costa Rica both she and her mother was simultaneously exposed to numerous pathogens, including several classified as waterborn NTDs (Neglected Tropical Diseases) transmitted mainly through poor sanitation. Their immune systems managed to purge them but her immature one rendered her body hypersensitive, including a hyper-active, hair-trigger vomiting reflex. Anything ingested triggers it — reinforcing the reaction and re-injuring her. She is like someone afflicted with chronic seasickness so severe that merely stepping aboard a small boat is enough to nauseate her. One clue is how she walks. Constant vomiting has rendered her lower back and abdominal muscles spastic, so tight that she can’t stand up properly.
8
Mitochondrial myopathy. Cyclic vomiting, amongst many other symptoms, match up with several of these semi-obscure myopathies/cytopathies. Take a look at UMDF.org for some accurate layman info.
A dormant gene mutation could have been activated or triggered by the shock to the system of e.g. noro virus. Cleveland Clinic has some of the best specialists in the US for these complex and hard to diagnose diseases. Mitochondrial DNA testing and a muscle biopsy might provide an answer.
5
I suggested possible eosinophilic gastritis--not clear from the data presented whether she has had endoscopy with biopsy. EG is rare, but more common in children, vomiting a key finding. Treatment is steroids. I think some sort of autoimmune process is going on here, perhaps secondary to a pathogen contracted during trip to Costa Rica. A trial of steroids might be in order.
1
Did she get tested for rare forms of lamblias infestations? They can persist for years, cause vomitting, and might be misgiagnosed, see
https://www.ncbi.nlm.nih.gov/pubmed/20499762
.
1
Basic blood tests are not enough, and the raccoon/Costa Rica trip is most likely the key. Check for enlarged lymph nodes everywhere on the body. The lymph system is throughout the entire body. Thin cut CTs and sonograms might give clues. Possibly middle ear is somehow involved. Good luck.
4
A "psychological" diagnosis, the last refuge of MDs who can't figure out what's going on, and leave it to psych to sort it out.
11
Right. The hardware guy blaming the software.
4
Undiagnosed allergies, including foods? Stay away from skin testing even w/Board-certified allergists. Go to Board-certified ENT allergists or dual Board-certified Ped+Allergy&Immunology. DO blood testing, e.g., MAST. Start w/total IgE and IgG for a signal, but test broadly: inhaled, foods, indoor and outdoor sources. Go into this girl's home and see which chemicals are used routinely, e.g., bleach and cleaners that can exacerbate Multiple Chemical Sensitivity/MCS. Replace aggressive cleaners w/white vinegar + baking soda: pH vinegar nukes bacteria and baking soda gets molds and other allergens. Easy to do in a Windex-size sprayer kept in kitchens and bathrooms.
My MD, now in Sausalito, is dual Board-certified Internal Medicine+Allergy&Immunology. Robert Sinaiko, MD. Used only MAST testing. My assignment for 20+ years is avoidance of known triggers of symptoms, from house dust mites inside carpets/pads to foods w/molds, plus 2.5 mg prednisone daily to keep gram negative bacteria in sinuses nuked.
1
I knew someone with the same problem. She had every test imaginable and the doctors found nothing so claimed it was psychological. It was not. It turned out to be a brain tumor the size of an orange so low down in the back of the head that the scan missed it. She had an operation to remove it and the symptoms ceased.
23
Are there some medical records missing? I noticed that between the POTS doctor and the MCAS doctor, the patient was placed on amitriptyline and propranolol. Who placed her on those and why?
3
I don't know the answer but I do know both are used to treat migraine which I am very suspicious of. Abdominal migrine and cerebral migraine are both causes of her symptoms.
1
Lyme and associated tick borne diseases such as Babesia and Bartonella can be the cause of all of her symptoms. Standard testing is not reliable for diagnosis. This entire article is almost textbook for these pathogens invading her body.
5
Sure, for those who think practically everything is Lyme disease.
3
Clearly you do not suffer from borrelia, bartonella,and babesia just to name a few on the list of infections.
1
Actually, the doctors never even explored Lyme and other vector-borne infections as a possibility in causing her disease. Both mast cell activation and POTS are very common with tick-borne infections. At a minimum, this girl needs to see a doctor experienced in diagnosing tick-borne illness to have that possibility examined.
3
For Pete's sake, how long do we have to wait for an update?
21
Is the raccoon a red herring, or no? I immediately thought leptospirosis when that scratch was mentioned. But the antibiotics she got would have killed that infection. I do wonder why giardia is mentioned as a possibility, It not leptospirosis. Lepto is widespread in Costa Rica.
Thinking this through logically:
Girl scratched by aggressive, wild raccoon, out during the day, in Costa Rica forest.
Both she and mother later come down with a gastrointestinal illness. Her mother recovers, but the girl is left with persistent vomiting and related issues.
Girl gets injection series against rabies, around the time she has that GI illness.
Mother has no lasting repercussions from the “bug” she her daughter both had.
The differences between mother and daughter are raccoon exposure and rabies vaccine.
So maybe either the pathogen or parasite that causes the intestinal illness, or the rabies vaccine injections, stressed the girl’s immune system enough that an incipient medical condition was unleashed?
8
Did they look at her vagus nerve position?
5
I can only say that I've read the (currently) 68 response with perhaps 50 different theories, and every one of them is quite convincing, and that I'm glad I'm not her doctor being that I'm a little OCD and would be in worse shape than her just from trying to figure this out.
2
I wonder if the condition is psychological. Perhaps the young lady and her family need psychological counselling.
Do you honestly, seriously think this patient landed in the Diagnosis section of the NYT(reserved for very difficult-to-diagnose illnesses) because she has a psychological disorder? Really? Smh. The gullible faith in the powerful psychiatric cabal is rampant.
6
Gastroparesis, possibly related to the vagus nerve. Neuropathy of the gut is often misdiagnosed.
7
I have had gastroparesis since I was sixteen. It isn't like this. And I most certainly didn't have migraines although at times had this weird feeling in my stomach that was unbearable that COULD have been stomach migraines but I'm not sure and the only reason I know that is because I developed migraines three years ago after obtaining a head injury and damaging my vestibular system. I also want you all to remember this is a NETFLIX series.. I'm highly concerned about how real this is and higly concerned about NY TIMES involvement.
While I enjoy the Diagnosis column, I absolutely cringe reading a lot of crackpot suggestions, guesses, and ideas.
Honestly, the responses run the gamut from serious answers to downright stupid and imbecile to sexist. It usually happens when a female (in this case young female) is featured. Then we get all the "it's all in her head, she's mentally ill" memes. Equally disturbing are the suggestions that she needs a gynecologist (implying she's promiscuous, pregnant, and/or has an STD).
I hate this format of allowing comments prior to the revelation of the actual diagnosis. Sometimes people have something relevant to add, most times it's just a free-for-all to speculate and dump on a poor patient who's only trying to get a serious answer to their medical mystery.
For those who haven't figured it out yet, this is a column about serious, sometimes chronic, physical illnesses which have so far stumped the medical community. I appreciate the emphasis on rare and difficult-to-diagnose illnesses. We need this kind of attention paid to those who suffer without an easy answer.
What I do not appreciate: Space cadets who think every illness on earth (especially when it concerns women/girls) is automatically related to "mental illness." Time to get back to earth.
26
I overall tend to agree with you - I feel about this kind of the way I felt about the (thankfully defunct) "Couch" column on psychotherapy - it ended up being simply irresponsible, not to mention often making psychotherapists look like crackpots. I'm similarly not sure this column is a good idea, open to comments - it's very depressing how many supposedly well educated Times readers promote snake oil and total nonsense. However, I also wouldn't automatically rule out psychogenic explanations - they're a real thing. I am all in favor of the current push to be sure women's symptoms and medical complaints are taken seriously, and aren't dismissed as psychological. But that doesn't mean that some illnesses aren't psychogenic, or that somatization isn't a real thing.
2
Men still tend to get the benefit of the doubt--whether they have psychological illnesses or not.
Case in point: I've known a few men with Multiple Sclerosis (a relative has lived with it for many years; I've gone to support meetings and have met others with this illness). Generally, it's considered a "female dominant" autoimmune disorder. The females with M.S., hands-down, all were diagnosed YEARS later after symptoms first appeared (in one case, it was 10+ years). Often, they were told, "you need a psychiatrist". Contrast that to the men diagnosed with M.S, including my male relative: all diagnosed within the first few six months (often sooner).
We have a long, long way to go before many female medical complaints are seriously investigated, and not automatically dumped into the "somatic" file.
2
I think you have failed to notice that the column has changed. There is not going to be any "reveal" on the next Tuesday (or whatever) because the case is still unsolved. It's an attempt to use group think to solve it for her.
2
My niece is suffering a similar case for the last 3 year. She is a 30+ years old and her original weight was 130; however since this illness, her weight is 85 pounds. She has visited countless hospitals and tried various treatments. The worse thing anyone or any doctor can tell her is that she is doing it to herself. Please be supportive of your daughter. I included an article of what my niece is facing. https://www.washingtonpost.com/news/to-your-health/wp/2017/01/25/she-was...
13
The genuine concern of the MDs who are providing responses are commendable and awesome!! THis tye of group think, together with Watson, is amazing!! Hopefully her treating DRs will go through each substantive note and compare it to what has already been tested. Then they will have a much greater pool of ideas to attach this child's condition. Caring concern and love is nest represented here! No mean words, no ridecule, no hyperbole, no critical comments!! Way to go public!! This is the best shining example of democritazation of information and actual use of 'our' internet and AI !!!!
4
Isn't this little commercially oriented show of getting opinions from laypersons and making a spectacle out of this case delaying the urgent treatment this young woman obviously needs? Inappropriate to say the least, not to mention the Times' collaboration with Netflix -- which in itself presents multiple conflicts of interest.
3
I see your point, but it sounds like she's been getting medical treatment for 3 years, and it has been largely for naught. Obviously the woman is OK with this -- otherwise this article would win an award for most blatant violation of HIPAA. By drawing the attention of *many* doctors to this, hopefully someone will be able to figure it out.
17
Look all of these comments are based on inadequate info. Nobody has examined this patient.
A dx cannot be appropriately given.
However none of these comments have considered that this illness, which has not declared itself or made the patient deteriorate could well fit into a class of. Conditions known as somatic symptom complex , including conversion, illness anxiety, somatic symptom etc. The approaches listed above have not empowered the patient to develop management skills, like CBT which work and we need to know a lot more about cognitive skills, social skills, affect regulation and the managing of triggers of ruminating. If you look at chariots work with these disorders they provide some useful insights,
3
Now would you say the same thing--this is a "somatic" illness--if this was a MALE patient? I'll bet dollars to doughnuts your answer would be different.
3
Men certainly develop somatic illnesses.
I do think however that Peace100 misunderstood the meaning of the term "ruminative" in this narrative.
1
Here's what I sent, and others have mentioned this too:
-- Consult with tropical medicine experts, particularly those specialized in Costa Rica and surrounding areas. Trying to diagnose with what we're experienced with in the U.S. is leaving another world of knowledge out of the picture.
-- Check with hospitals and clinics in Costa Rica. There may have been other patients who presented there with similar symptoms, and they've seen this before. Particularly among citizens who live there full-time and have more exposure.
-- Talk with NIH and CDC to see how to get anecdotal stories from people in Costa Rica who do not go to medical professionals, or they go to small village clinics. Surely Lashay is not the only person to ever get these symptoms after an exposure in Costa Rica. You may find a trail to follow for diagnosis and treatment. The CDC likely has Central America experts and grantees who have contacts and a presence there.
-- Animal bite might be a red herring. Because Lashay and her mother had similar symptoms at first (?), it may be from a mosquito or other insect that they were both exposed to.
14
True but Costa Rica could also be a red herring. I think people may be overestimating the possibility that the fact that the patient went somewhere somehow exotic has anything to do with her illness. It could be causing people to overlook explanations closer to home, medically speaking.
Hyperbaric Chamber? Has hyperbaric medicine been tried? I know they use it for some cases of Chronic Lyme and it has helped a number of people. I'm not a physician, but it came to my mind instantly.
My daughter did research for her PHD in Panama for many years and one year seh came home with something that look she had a bite. Went to many doctors in Minneapolis ( she was at the University of Minn) and no one could help her. Well she came home for Christmas I took her to a Dermatologist who referred her to a infectious disease Doctor and come to find out she had Leishmaniasis.
6
My guess for dx would include at the top of the list- neuromyelitis optica spectrum disorder. Although it is a fairly rare disorder of the auto-inflammatory diseases similar to MS, this illness typically affects females 9 to 10, and the main presenting symptom is nearly always intractable vomiting and constipation. This disorder is caused by autoantibodies which invade the chemosensitive AQP4 postrema area of the CNS. More so, the time between symptoms and actual diagnosing can be sometimes as long as 111 weeks, a very long time. I suspect this is also why she then began later to have mild neck pains suggested in the article.
The treatment appears to be methylprednisone and plasmapheresis. (IgG antibodies).
21
NMO usually brings loss of vision, and the neurological workup (assuming she had a spinal-cord MRI) would have shown lesions. She would likely also have had muscle spasticity, particularly in the lower limbs (drop foot).
1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3788290/
1
I can only presume that Dr. Lisa Sanders and this family must be at their wits' end to resort to having this story published in the NYT and requesting commenters to share their diagnosis and personal experience with symptoms similar to those of Lashay.
I cannot imagine having "intravenous fluids three or four times a week" to prevent dehydration among other issues. Unless a port was implanted somewhere, it must be painful to be stuck with needles so often every week.
I wish Lashay and her medical team the very best of luck and truly hope this mystery is resolved so she can return to a happy and pain-free lifestyle. Hang in there kiddo and don't give up. An answer and remedy is out there. I believe that in my heart.
My only advise is perhaps Dr. Sanders may want to consult with Dr. Forest Huls. He was a doctor mentioned in a NYT article on February 14, 2018 in which he discovered the cause of an elderly woman's chronic and mysterious medical condition. Maybe it's worth a shot.
10
Such connections is impressive. It’s not like no one else ever gets to the end of their wits. Crowd-sourced medicine, who needs socialized?
You can see the bandage on her neck/chest from what i assume is the port. Plus, having to get IV fluids is the least of her problems and its a lifesaver.
1
@Alyce
I agree that IV fluids is a life saver and the least of her problems. I was just saying having to do that 3-4 times a week is no picnic and I feel for her. I was simply expressing empathy.
2
I cannot help with the diagnosis, but in this case addressing the life threatening, or at least disrupting, symptoms is also important. At this point I hope they have tried both cannabis and acupuncture. I see that some have criticized such treatments as radical, but cost/ benefit is skewed heavily towards the benefit at this point, And both have worked with similar symptoms. Just because we do not know how it works does not mean it is not effective. I have used 2 folk remedies in my life that, on the surface, seemed that there should be zero effect, but worked amazingly well (not severe stuff), Life can be so strange. Best of luck.
19
Having dealt with our teen son and Lyme disease plus multiple other tick infections the past 4 years, I recognize all of her symptoms - infections like Lyme (and other including viruses) suppress the immune system causing a cascade of symptoms similar to hers, and having read her story and some posts here, I would definitely consult immediately with tropical disease specialists in Costa Rica. I would also run Lyme tests just in case it was activated when she caught a virus/infection in Costa Rica and both are causing symptoms. And yes, there is Lyme in ticks out in Utah.
We've had the experience of even pharmacists in small cities in Guatemala knowing what parasite is causing an illness from observation and symptom descriptions.
Please do not chalk this up to some mental aversion to food or a psychological condition - so many patients with infectious diseases like Lyme are and end up committing suicide as a result.
70
Thanks well said. I got Lyme disease and Babesia while playing golf in Westchester county NY. I finally got diagnosed with Lyme encephalitis and spent 4 week at NYU hospital. It permanently hammered my immune system. I 20 years later I now have a diagnosis of CVID and am on IVIG for the rest of my life. I had less than 300 IGG and essentially zero response to an immunization challenge. BTW, there is no history of immunodeficiency in my family. An immunodeficiency DX should not have been dismissed out of hand by Lashay's doctors based on no family history alone, just because it has not been diagnosed in her family does not mean it is not in her DNA, remember epigenetics may have not been triggered! If this poor girl had/has a smoldering case of many infectious diseases she may well be more susceptible to and unable to mount a defense to a new tropical illness.
Lashay seemed healthy. She may have something inside her system that upsets the order. She should try drinking tea made of fresh sage leaves. It helped me a lot to boost my immune system and detox my body.
3
IBM's Watson can read hundreds of thousands of articles around the the world on this subject in mere minutes. I'm sure this advanced AI can come up with something that all the clinicians have talked about, our written about. This AI is the future in finding cures that we mere models cannot possibly find the time to put together.
All we need to do is to get our egos out of the way and help this lovely young woman find a new and happy life. I wish you all the best Lashay.
19
IBM Watson is a promising technology to help with medical diagnosis. Medical informatics systems now use a great deal of software that exploit artificial intelligence (such as in database searches). However, these sorts of software solutions are not the panacea that some might imagine.
Automated diagnostic tools are only as good as the information presented to them. For example, critical information input might be left out if the patient or caregiver does not think it important. We know this is true in Lashay's case, because we have not been provided with a signed informed consent agreement.
Automated diagnostic tools cannot evaluate the social, political or religious bias of a patient or caregiver, which might influence how or if information is shared with the system, or what factors might influence the acceptance of a diagnosis.
Artificial intelligence tools have to be trained just like any board certified professional. However, they cannot be cross examined as to how they came to their conclusion, as can a human diagnostician. Until this cross-examination problem is solved, the tool must always be relegated to a secondary, but not binding, medical opinion.
The best advice for Lashay is or seek the advice of a good medical diagnostician, and to keep in mind that she is the only person who is accountable for her own well being. Also remember that once medical benefits are exhausted, only she (and family and friends) can solve the problem.
3
The condition began when the patient and her mother contracted a norovirus in Costa Rica. The mother recovered, but the patient has continued to vomit in response to the ingestion of food and liquids. It could be that her condition is severe food aversion, a learned response from suffering the norovirus. This diagnosis is consistent with her symptoms and the lack of abnormalities in her lab results, endoscopy and imaging. The is no indication of a physiological disease process.
A good therapist may able to help her with the desensitizing process. The headaches will most likely subside once the chronic vomiting stops.
I would suggest a follow up with a gynecologist and an ENT to rule out any other possible contributing conditions.
12
why do you say this? My Best friend got the norovirus and they think it's the reason her eyes and cerebellum don't communicate any longer? she started having typical vertigo type symptoms not long after.. does norovirus often damage people?
Previously posted using the mechanism at the bottom of the article, but it didn't display my name, email or address.
Trying to provide a diagnosis is made more difficult by the fact that only part of the patient's medical records were provided. Forexample, it would seem important to know if the patient had an endocrinology consult and a review by a gynecologist, since endocrine abnormalities may originate from the gonads.
If not in fact a rumination syndrome, I would suggest exploring (a) Munchausen Syndrome (by patient or proxy), (b) toxic or metabolic causes (father works in the mining industry in an unspecified role) and (c) unusual seizure disorder (eeg was recommended,but it isn't clear from the limited records provided that one was actually obtained).
Parenthetically, the physicians at the hospital apparently believe they made a diagnosis, but the parents don't agree. It should be made clear if that is the case.
4
Multi diagnosis with Dysautonomia/POTS is common. MCAS and MALS are both diagnosis that go hand in hand with this as well as Sjogrens and EDS. Migraines can be due to Cerebrospinal leak (another more common diagnosis f you also have EDS). My daughter had the exact same thing happen 8 years ago. MD's are not familiar and it's a LONG road to find the 'right' meds, right doctors, etc. WENT TO MAYO for diagnosis. Been to seminars with the doctors on the Board of Dysautonomia International. Agree with Dysautonomia and POTS as Dx.
18
Yes, POTS and Gastroparesis are common with EDS. Also, Migraines.
1
POTS seems to be a catch-all diagnosis, especially for those who suffer chronic, “complicated” migraine.
1
Possibly eosinophilic esophagitis. Path report truncated in documents, but doesn’t appear that the proximal esophagus has been biopsied, only distal. This indicates the endoscopic wasn’t thorough enough to rule out this diagnosis.
5
Baylisascariasis, or infection caused by raccoon roundworm, Baylisascaris procyonis. I suspect Baylisascariasis because of the patient's symptoms of vomiting and fatigue, headaches and photophobia, with no other cause found through extensive testing. There is no specific test for this infection, it is diagnosed by ruling out other illnesses/conditions. If her headaches and photophobia are caused by neurological involvement, that is very serious. She needs treatment with a medication that will specifically target the baylisascaris infection source. Baylisascaris was listed as a possible differential diagnosis, but no treatment addressed it specifically. She might respond well to treatment, and if not, it can be ruled out (or the possibility of treatment helping will be ruled out). The possible effects of leaving it untreated could be lethal. It is clear that her mother is not happy with the lack of a specific diagnosis. Recent research at the University of Georgia by Michael Yabsley uncovered numerous asymptomatic baylisascaris infections in those who routinely handle raccoons. Thus, symptoms can be variable.
Also, maybe the animal was actually a Coatimundi. The coatis in Costa Rica carry several zoonotic parasites, notably Trypanosoma cruzi, which causes Chagas Disease, and Babesia, and Mycoplasma. Babesia can cause neck stiffness and other symptoms consistent with this girl's symptoms.
I hope this girl and her family find a specialist in tropical diseases ASAP.
159
This is right on. MDs in the US, even infectious disease specialists, often do not have much, or any, experience with tropical parasites. If I were the family, I would get in touch with some specialists in Costa Rica or elsewhere in the region.
65
Baylisarcosis would cause noticeable neurological symptoms, since the disease would be extremely advanced by this stage, several years after onset. There should also be other symptoms like vision problems, breathing problems, and skin problems as the larva migrate around the body. She also does not have nausea: vomiting without nausea is part of what is unusual here.
They did a full tropical-disease workup. She has also been on antibiotics and anti-parasite treatment.
The racoon bite may be a red herring.
1
Agree about complications from a raccoon roundworm infection as a possibility, and a consult with a tropical disease specialist seems like a no-brainer. Any time there is broken skin caused by claws that might have tracked through feces, parasites come to mind. The article does say that parasitic infection was ruled out, though.
Your suggestion that the animal might have been a coatimundi is interesting. At first I thought that was unlikely because anyone could recognize a raccoon. But in Costa Rica the raccoons are sleeker than they are in the States. They look very much like their cousins, the coatis.
1
This is also layman response. Please consider the Readers Picks info supplied. I agree that NIH etc..should be considered. Perhaps a consult Mayo clinic a full workup. On the other side of this the mother also exhibiting some symptoms could be her own med condition? Please advise PT to sanitize seat and commode after each use. I developed headaches and light sensitivity after medicine induced liver and kidney failure so i understand severity of symptoms. The most important thing to do is to follow reasonable suggestions from the Doctor even if your scared. Note in 2014 they closed that park for 1 day a week) due to feeding of animals as it disturbed the ecosystem that appears to have been struggling with animal/animal and animal/human transmission of diseases.
Best of Luck...My husband and I will be praying for you Dr. Lisa and the family
mrsrts549
1
Leptospirosis. The keys are the raccoon attack in a tropical location, and the fact that Flagyl seemed to help somewhat.
12
Unlikely it would sill be going on same way years later. It would have gotten worse, or better after a few months.
It's definitely median arcuate ligament syndrome (MALS). MALS occurs when the celiac artery (the artery below that diaphragm that stems from the aorta) becomes compressed by the median acuate ligament. This restriction limits blood flow to the digestive system and, as a result, can lead to significant abdominal pain. Typically this is attributed to an eating disorder, which couldn't be further from the problem, as these patients want desperately to keep food down. Often the issue is discovered in the teens, with patients seeing multiple doctors until it's properly diagnosed. Treatment requires endoscopic surgery by a vascular surgeon to release the ligament to restore blood flow.
10
Almost certainly not MALS, sorry. While I don't have a solution for this child, I'm a physician in the most experienced MALS center in Chicago...the symptoms are not consistent with this disorder.
37
MCAS, POTS, Ehlers Danlos Syndrome. She needs Gastrocrom, maybe Midodrine (vasoconstrictor), allergy testing, and possibly Xolair. Use Epinephrine and Benedryl for attacks (anaphalaxis often without face swelling) Read about this at TMSforacure.org and get Dr. Afrin's book "Occam's Razor" about diagnosing and treating this difficult collection of disorders that travel together. Take her to Dr. Maria Castells in Boston ASAP. She's on the right track, but it takes time to get the meds right. Some may even make her worse over time, so be careful with new meds. Get her on Gastrocrom now.
6
Wouldn't it be smart to touch base with the local doctors in Costa Rica?
141
Exactly. I contracted Dengue Fever in Ecuador. Luckily I decided to see a specialist there before returning home. I was traveling with an MD, who said I didn't have it. (His reading of the blood test).
I did and a test for Convalescent Dengue proved it.
She is infected with an autoimmune condition. There is a VIRUS that resides mainly in her GUT. You have NOT said it but she has night fevers and sweats. The virus sits at the base of the stomach lining and any or all foods triggers a vomiting response.
Put her on ARV's for 3 weeks and as soon as the active viral content decreases, she will retain food.
3
Without knowing much, I'd wonder about leptospriosis, which raccoons are known carriers of.
It certainly has the digestive symptoms (here's the CDC website's article: https://www.cdc.gov/leptospirosis/symptoms/index.html).
5
You can see in her medical records that she was tested for Leptospirosis.
5
Antibody screen has fair sensitivity and poor specificity. Given that the clinical picture fits with leptospirosis, PCR DNA testing would provide the definitive test.
3
Baylisascaris procyonis.
I also notice my previous comment criticizing the NY Times for monetizing this 'diagnosis' column by making a Netflix program and not telling us the cause of these illness is a bad move.
52
This really sounds like vagus nerve disorder.
5
Racoons live in Costa Rica but so do somewhat similar looking animals called coati. See if the animal they encountered was actually a coati. If so, test for parasites again. Specifically ones that live in both humans and coati. The mom's hyperthyroidism or the medication she takes for it could explain why the parasite didn't "take."
21
First of all, the mom has hypo--not hyper---thyroidism. There's a big difference. Second--what in the world are you going on about that the mom's thyroid disease(or her medication) has anything to do with repelling a parasite? Are you serious? That's about the wildest thing (and so inaccurate it's mind-boggling) I've heard about thyroid disease. Smh.
Migraine?
2
It sure sounds like Crohns disease. If not promptly treated, the patient could literally starve to death, as the body rejects all food.
1
I saw this headline and just couldn't resist, in full jest of course, to say "isn't if obvious, Trump is President". Obviously in poor taste, considering the severity of her situations. SO That JOKE being said, I agree with Debbie, reach out to NIH: NIDDK, NHLBI and possibly NIAID. Under utilized yet a great place to start. There is a "contact us" on their respective websites found at this link:
https://www.nih.gov/institutes-nih/list-nih-institutes-centers-offices
2
I would try epilepsy and migraine medication. I don't see where this has really been tried in a serious fashion. Migraines often have very few symptoms beside the vomiting. Also Reed's ginger ale! This is not product placement, I swear.
2
I believe she has median arcuate ligament syndrom (MALS). MALS occurs when the celiac artery (the artery below that diaphragm that stems from the aorta) becomes compressed by the median acuate ligament. This restriction limits blood flow to the digestive system and, as a result, can lead to significant abdominal pain, difficulty eating and an inability to exercise. MALS is not widely known in the medical community. Typically patients visit several doctors before receiving a proper diagnosis. Often it's diagnosed in teens who are mistakenly treated for eating disorders, even though the teens report a clear desire to eat normally (but they can't due to pain and vomiting). I work at UChicago Medicine (not in a clinical role). Our vascular surgeons are leaders in treating MALS and people travel from all over the United States to see our MALS experts. View a very similar story to Lashay's here: http://www.uchospitals.edu/specialties/heart/patients/mals-mh.html
5
Sorry, unlikely to be MALS. (I replied above previously.) I'm a physician associated with the U of C MALS program that you cite, and the symptom pattern and story are not typical.
3
Ah, Costa Rica 1985! The memories. Although my tranveling companion and I tried to practice good food hygiene, my companion almost died there in the jungle next to a beautiful beach. We were in an isolated location with no good medical options. I spent the entire night pouring water, sugar and salt into my friend as fast as I could as it ran out both ends of his body. But my morning his condition stabilized, and an American who was driving back to San José gave us a ride back to the capital. My illness was not as severe as my friend's. However, I developed severe recurring abdominal cramps. There was never a diagnosis. But a physician back in the states did give me a medication that eventually got rif of the cramps. I have traveled rough in many isolated areas of the Third World, but I have never seen anyone get as sick as my friend got in Costa Rica.
3
gastroparesis
1
no, maybe some blame is on gastroparesis but not all. I have it.. sorry.. you don't have migraines and like there is medication for it and it's easily diagnosed eating eggs with isotopes..but a migraine spcialist.. should be involved.. amitryptaline can cause a lot of side effects. I've been on it. Most headache doctors prefer NOROtryptaline or others.. much less side effects.
Where are the responses to these case presentations? When you search past cases symptoms show up but no responses from Dr. Sanders despite more than several weeks time passage.
6
I home schooled a teenage girl in the 1980's who had a very similar condition. She had been very athletic but then could not keep anything down. Her family sought many medical opinions, including a psychological evaluation. She was fed through her aorta for months. She travelled to the Mayo clinic from Florida. After the insurance company had paid out millions someone suggested her seeing a chiropractor. The chiropractor adjusted her neck and she recovered almost instantly. The insurance did not cover chiropractors.
10
YES. Most are very conditioned athletes. My daughter has been to chiro and nothing worked. Dysautonomia and POTS is difficult to diagnose and this is why. Everyone goes to so many specialties with no answers and one day, what works for one may not work for the other. In the dysautonomic POTS community, it's the same thing. We all share very similar story's.
1
Stories. You all share similar stories.
Are you sure she was fed thru her Aorta as opposed to a vein?
Wouldn't she bleed out into the feeding bag from excessive pressure of heart beating?
Was she fed in an ICU.
I question the whole idea of a 'public diagnosis' for any mysterious ailment. What's the point of soliciting hundreds or thousands of diagnosis from lay members of the general public? For example, what would have happened in this was done in 1985, using someone with AIDS?
This study is nothing more than a giant Rorschach (ink-blot) test, where the general public is asked to project their health fears onto Lashay. Or worse yet, through the magic of cyberspace, it is a way to record the personality of every individual who signs their name on the submission form.
33
I think the idea is to have medical professionals, not necessarily lay people, comment on these cases. Many doctors, including retired ones, read and share these cases. You never know who can contribute a new perspective.
33
Lynn -
Nothing in the article suggests that the survey at the bottom is for medical professionals. The survey does not ask any question about professional qualification or affiliation. Medical doctors and psychiatrists already have symposiums, journals and other forums for sharing diagnostic information. Some organizations, specialize in diagnostic rather than therapeutic capabilities (this was the original purpose for the Mayo Clinic).
Furthermore, the survey is for "The New York Times Magazine", and asks for permission to use responses in a NetFlix program. Neither are medical journals.
Finally, I did not see any release of Lashay's U.S. medical history under the HIPPA medical privacy regulations. I don't know what the regulations are in Costa Rica, but that should also be declared under the ethical doctrine of informed consent. If this article is legitimate, and this is a real medical history, then those would have been made public as well.
6
Or myself for example... when it's a condition my daughter has, I can relate and share that I had a same story. The problem is that so many healthcare professionals do not know about this Dysautonomia/POTS, that it is very difficult to diagnose and very hard to get the word out. Dysautonomia international. com is a great site to learn about this and POTS. I have helped 5 people now over the course of 8 years.
Niagara Falls lights up turquoise for this in OCT. Wrigley building in Chicago as well.
4
I live in Costa Rica and have had several "mystery" illnesses. Most people here treat gastrointestinal diseases with leaf teas (specifically guava and sour sop) but I when I had intractable diarrhea for more than four months, I treated myself with a two-week regimen of oregano oil and then rebuilding of my gut with probiotics. I did not see anything in this patient's history about the use of fecal transplants. Maybe that would help. I did see that stool samples were examined for parasites but I will tell you that no tests came up positive in my case and no doctor knew what I had. I also used an acupuncturist who helped a great deal. Good luck and I hope Lashay gets some help.
9
A friend’s daughter had similar symptoms and went through a similar series of misdiagnoses. It turned out to be MALS, Median Arcuate Ligament Syndrome. Since surgery and treatment, her daughter has begun eating and drinking normally and has been able to gain weight.
1
SIBO. Small Intestinal Bacterial Overgrowth. My daughter had similar symptoms. I've sent a detailed response.
2
Rabies is only mentioned once, in the first ED report. Patient received PPX for it, but as far as I can see (as a non-physician) no specific work-up to rule out rabies. Rabies can cause raccoons and other host animals to actively attack other mammals ---a way that the disease propagates itself. I would suggest that the patient consult a doctor expert in the treatment of rabies, and request a Rapid Fluorescent Focus Inhibition Test (RFFIT) to try to gauge exposure to rabies. The raccoon bite, however superficial, still seems like the most salient vector for a disease and its follow-on syndrome -- no other part of the history represents do notable an acute event.
The fact that they've moved away from rabies is that she is completely not showing symptoms of a rabies infection. She was given 2 vaccines at first presentation, passive and active immunoglobulins for rabies. This would have not only sequestered any active virus, but would prevent any chance of reinfection. Considering she did not have progressive neural symptoms post-vaccine, Rabies can be easily ruled out. The bite was something that her family latched on to but is most likely unrelated to the pathogenesis of her disease.
6
the fact that she didn't die is evidence against rabies. It's almost universally fatal.
Autochthonous transmission of Chagas disease. Around the time that the family took their vacation, an investigation found people infected with the disease in San Jose province, near where they vacationed. Chagas disease is caused by a protozoan parasite that infects humans through the bite by an infected triatomine bug. There are two phases of the disease - acute and chronic. Chagas disease clear up with treatment or go into remission. Acute symptoms are similar to what both mother and daughter suffered: headache, diarrhea, vomiting. There have been reported cases of autochthonous transmission. The notes from the patient’s first hospital stay documented multiple insect bites. It’s possible that transmission could have occurred through mosquito bites. Chagas disease is diagnosed through a microscopic examination of blood, but this only works during the acute phase of the infection, which can last anywhere from a few weeks to a couple months. While a basic blood test was done during the patient’s first visit, there was no indication that the lab looked for parasites. By the time a more comprehensive blood examination was performed (1/8/2016), the patient could have been well past the acute phase. Chronic Chagas sufferers often exhibit complications with the heart and digestive tract. This could explain some of the symptoms that the patient is now experiencing: achalasia, irregular heartrate, and potentially low blood pressure.
74
Out of all the comments here I think this one, although it may not be correct, is the most feasible. Her history of travel lines up with it, and the fact that both heart and esophagus are affected hits on the two classic outcomes of chagas disease. As far as I recall I didn't see any testing for this done in her labs. However, megaesophagus caused by chagas destruction of nerve input can be ruled out by the normal manometry study.
13
Im sure a lot has been learned since I was in the Peace Corp in South America forty years ago, but back then the PC nurses warned volunteers to beware of Chagas disease they never mentioned mosquitos as transmitters of the disease only a certain insect called the "kissing bug" because they had a tendency to bite around the face. Also from my dim memories I thought I recalled that the disease was found in armadillos in the States. I do know that when I returned to the States with a slough of stomach parasites state side medical professionals were not up to speed on all the various types of parasites a human can pickup living in a third world country. I hope the little girl finds relief from her problem soon.
2
Chagas isn't transmitted via mosquitos and it is associated with nausea and vomiting in the acute phase, but not in the chronic phase. I don't see anything that associates with this patient's symptoms of regurgitation without nausea or with the blood pressure and dizziness associated with standing.
1
Diagnosis: Gastric outlet syndrome due to extreme weight loss.
Anatomically, there is loss of the messenteric fat around the duodenum leading to a vise effect on the 3rd part of the duodenum between the aorta and the overlying superior messenteric artery. It leads to an acute gastric outlet syndrome, relieved only with vomiting or gastic drainage.
It is also known as 'Nut Cracker Syndrome'
It is almost exclusively seen in young, very thin women under 100 lbs, causing them to spiral into vomiting episodes, malnutrition, and further weight loss requiring hospitalization for dehydration and nourishment.
The story usually is the anorexia patient or severe dieting teen that is being managed as an outpatient, that acutely needs to be hospitalized for fainting, dehydration and vomiting.
The cure is to gain 5-10 lbs of weight to restore anatomic function and gastric emptying.
I would recommend high fat gourmet ice cream and frappachino shakes.
Nope, would have been seen on MRI. Easy rule out. Also would present with bilious emesis which is clearly refuted in her first history.
10
The comment about hypothyroid condition being connected to mental illness is inaccurate. Comments like this negatively impact patients. Symptoms of hypothyroid and hyperthyroid are often mistaken for mental illness, and in some instances, may accompany psychiatric illnesses such as bipolar disorder and manic depression. For that matter, hypothyroidism or hyperthyroidism may also accompany physical illnesses such as IBS, diabetes, etc.. The important distinction is that once the underlying thyroid imbalance is diagnosed and treated, physical and mental symptoms typically abate.
22
Any negative impact, while regrettable, only reveals the stigma still attached to mental illness — so pervasive that even doctors who may be suffering some form of the disease are unwilling to seek help for themselves.
But the statement that “once the underlying thyroid imbalance is diagnosed and treated, physical and mental symptoms typically abate” would seem to confirm that a connection between the condition and certain mental disorders does indeed exist.
5
You're not getting the point though. "mental disorders,' most commonly MOOD disorders in cases of thyroid hormone imbalance, are simply acute symptoms of the disease. They are not a lifelong 'mental illness.'
12
Robert Schwartz--enough with the "everything is a mental illness" meme. I am so sick and tired of the ignorance most people have regarding the seriousness of thyroid disorders. Once and for all: thyroid disorder is NOT a mental illness. It's a serious, life-changing PHYSICAL disorder.
Sheesh. Everyone has a thyroid (unless you were born without one--it happens). That means everyone should be much more knowledgeable about that powerful gland--it controls your heart, liver, and other organs, and yes, including the brain.
You want to talk about "stigma"--try living with a damaged thyroid. It's also bad (sometimes even worse) to have to live without a thyroid due to surgery. It's not as simple as taking a pill every day. Those of us who have to live with the very debilitating symptoms and ignorance of clueless people fight the very real stigma all of our lives.
2
I submitted a layman's diagnosis of PTSD, tracing back to the scare with the raccoon followed by the illness obtained while on the trip. Some psycho-biological reaction may have triggered her to reject food as potentially poisonous. Re-swallowing may overcome the mechanism by providing "assurance" that the food is not poisonous - the conscious act of re-swallowing overcome the auto-response mechanism.
A wild theory, perhaps, but a round of cannabis therapy would certainly do no harm, and there are other specific measures that might relieve PTSD symptoms.
If left untreated, I would expect this to gradually get better on its own. Eventually the mind/body will figure out that there is no threat from swallowed food.
Jumping straight to marijuana without any indication is a bit much, especially when it's not indicated for the symptoms. Manometry clearly showed an abnormal esophageal motility after eating consistent with rumination syndrome. She did not continue with her prescribed treatment for this diagnosis, instead continuing to search out for 'a real diagnosis.' I think it's both a combination of a real physiologic issue (esophageal dysmotility) and an acquired somatic symptom disorder related to the physiologic issue.
3
I'm just a layman here and I didn't see anyone at least pursue the potential for PTSD. Cannabis therapy would (a) potentially provide relief and (b) narrow the range of potential causes to hone in on. I take it on faith that the chronology is an important piece of evidence - the scare with the raccoon, coming home with an illness, and the regurgitation syndrome immediately following. It's as though her mind/body refused to be done with this episode, and since there was no other potential cause found, I'm left with PTSD.
We must admit that what's behind PTSD is a mystery, and it can manifest itself in different ways based on a host of factors. I'm just postulating here that I see the potential for the girl to have experienced trauma over this episode and the regurgitation was, in essence, a defense mechanism.
If I was a member of her family I would certainly be examining this angle.
What you're referring to as PTSD would most likely be more of a 'conditioning' type of disorder, if it were a psychosomatic issue we are dealing with (which it very well may). The association of eating/nausea with the bite of the animal may cause all food to be regurgitated. However, I still think there is a big part of this that is truly physiological, as her manometry study was clearly abnormal, albeit only a small portion of it.
1
This reminds me of the beginning of the Lyme Disease epidemic in my state. People were coming down with mysterious symptoms which lasted for years. Children were being misdiagnosed with atypical rheumatoid arthritis, and adults were being labeled as mentally ill. I wonder if there's a new disease here?
MDs are not going to refer to NDs, chiropractors, or any other sort of alternative medicine doctor, but clearly this would be worth a shot. I'd even try a medical intuitive who has a demonstrated track record.
9
NOT worth a shot. You might as well be prescribing prayer as a treatment. All (ND, chiropractors, alt med, prayer) do not treat MEDICAL issues.
11
OMG.. you are SOoooo wrong. Botanical medicine is the OLDEST medicine on earth, and for good reason-- it is SAFE, EFFECTIVE, AND INEXPENSIVE, which I cannot say for pharmaceutical drugs.
1
I'd lean towards machine learning as the best bet of finding the cause. There's an MIT Technology Review article recently that described a machine learning endeavor between a major university and medical center (as I recall) that basically pooled massive amounts of data from patients into a dataset. The results of the machine learning applied to this medical dataset, which included blood samples, were far beyond anyones' expectations.
For example, the algorithm successfully predicted schizophrenia onset 5 years before it occurred.The even more impressive part of the story is, the researchers weren't even looking for that.
I'd love to see Lisa Sanders team up with a solid AI/ML effort such as the one above.
5
POTS may be an autoimmune disorder.
Here's what I wrote:
Autoimmune disorder of unknown etiology.
Patient history of possible exposure to tropical mammalian virus/pathogen and perhaps secondary infection to wound. No discovered current infectious agents, but persisting multiple symptoms of inflammatory response.
It is not said whether immunosuppressives such as TNF inhibitors have been prescribed, but so far no change with antihistamines and response to Metronidazole suggests irregularity of homeostasis in the gut could be a factor.
I recommended she see specialists at NYU Colton Center for Autoimmunity and Johns Hopkins Autoimmune Research Center, as well as a tropical disease specialist.
5
My adult niece seems to have had similar symptoms and was constantly misdiagnosed. She finally stopped eating all foods with gluten and stopped throwing up. As a side note, in reference to reader's comment #4, her brother, who has since died, suffered from Dysautonomia.
5
I would send her records to the NIH. I have seen patients that doctors did not have a diagnosis for, and the NIH can run DNA tests on the patient that show a genetic reason for the illness. We had a patient that the doctors could not find a diagnosis. The NIH did genetic testing on the family and found a mutation from the mother that helped diagnose her. The patients 13 year old daughter had a stoke and the NIH found the same mutation that the mother and grandmother had.
19
What happened with Angel Parker? It's been a couple of months since we've seen anything.
5
I can relate to Lashay's story. I am the mother of a now 20 year old who was diagnosed with CVS at the age of 13. After bringing my daughter, Jessica, to all specialties, knowing something wasn't right, she too was diagnosed with POTS. I would point out that Dysautonomia, a dysfunctioning autonomic nervous system, umbrella's the term POTS. Symptoms of this are many and constantly wax and wane frequently throughout all days. It's been 8 years and still a struggle. Typical diagnosis time is 4 or more years. I tell my daughter, she's paving the way for others, as am I as a parent. We never give up for our kids. ED physicians need to be educated on how to treat this. My daughter has been in the ED often and now they look to me and my daughter for exactly what works to lessen the symptoms. It's a very complicated illness. There is an underlying diagnosis as well. My daughter's is EDS, joint hypermobility. I've learned through a private Facebook page, POTSibilities, that many of these teens turn to SSI Disability. This Facebook group is where undying support is and where questions can be answered and compared, as the healthcare community is learning of this mystery and has a very long way to go. This illness is a LONG, grueling road of debilitating symptoms. We need to get the word out there! Charlene Sanders, Illinois
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Amy, it sounds like your daughter is still suffering. Has she been evaluated by a doctor who is a specialist in tick-borne illness? My son also has similar symptoms and he has Lyme disease and bartonella. He is getting better with treatment. Most doctors don't know how to diagnose these illnesses because the standard lab tests are so insensitive. You should bring your daughter to an LLMD.