“Amy” (name protected for privacy purposes) is a 21 year old articulate college junior, via online schooling, who has been chronically ill since age nine. She has had multiple rare diagnoses that all began following untreated/unrecognized Lyme disease. These include an auto immune disease called PANDAS, Median arcuate ligament syndrome, which she had two major surgeries for including a hepatic to left gastric bypass, Clinically diagnosed mast cell activation syndrome, Postural orthostatic tachycardia syndrome and more. She has undergone many procedures in addition to the two surgeries including angiograms, angioplasty, colonoscopies endoscopies,8 CTAs, and more. She has also had a blood clot and sepsis as well, which has complicated things.
Following “Amy’s” first surgery, when her pain was nearly impossible to control, genetic testing was done which proves that she metabolizes medications so quickly that they are not effective. This has been the most difficult aspect of getting her care. All of her diagnoses cause extreme pain. She’s unable to take any narcotics as they actually cause her pain because of the mast cell activation syndrome.
Each of these diagnoses have only been found because of her mother’s research and reaching out to Dr.’s across the country who specialize in each of these rare conditions.
We are now confident that we have identified the one syndrome that accounts for all of her symptoms, however it is another rare disorder, that is tricky to diagnose and in order to achieve a definitive diagnosis, required another specialist in another state that is a private physician who is, yet again, out of network and extremely expensive.
A local Maine hospital has, at every turn, impeded getting correct diagnoses, been unwilling to even treat the symptoms of pain and nausea, and tagged her as having psychiatric issues because they are unable to diagnose her. Some doctors even refusing to read the diagnosis and treatment plans of the specialists to learn more about this condition.
The mast cell activation specialist that we saw recently in New York, who is one of the leading researchers on mast cell activation syndrome and who has diagnosed and treated over 3000 mast cell activation patients, believes that Amy has a very severe case of MCAS, but he needs to be able to definitively diagnosed her with laboratory results before formulating a treatment plan which will be implemented by a Physician in Massachusetts.
When Amy was in-patient at the hospital in Maine, they were unwilling to even allow us to pursue this diagnosis of the testing that the specialist ordered. They just kept telling us that they don’t treat mast cell activation syndrome there, and they were unwilling to treat her symptoms or try any medications that the specialist suggested could help the cause of her severe abdominal pain which he believes is from an allergic vasospastic angina. Amy is presently unable to eat or drink enough to maintain health. The Maine hospital we just left would not allow a picc line to be placed even with outside nursing providing fluids despite her limited intake nor would they consider anything for nutrition because feeding tubes have failed and TPN is dangerous. Because we are diligent about making sure she receives vitamin rich foods and electrolytes, her labs appear normal. She requires 24 hour care and therefore I am on leave from my job.
It is really much more complex than this. The specialist in NY spent an unprecedented amount of time with her in his initial exam and history taking, clocking in at 6.25 hours, and that is not a typo.
Because of the lack of care at the Maine hospital, we requested an ethical review of Amy’s treatment, and that meeting, which took place on August 20, 2018, was also unprecedented for the amount of physicians and support staff that were included in the meeting.
Before Amy was able to address any of her concerns about her care they began the meeting telling her that they were discharging her. They were unwilling to learn anything about mast cell activation syndrome or treatment and they were unwilling to find a facility who could manage her care.The nursing staff were the only people who had an interest in learning about Amy's condition or helping her.
We are private people and have chosen, up until now, to try to do this on our own but we are, sadly, no longer able to and are now asking for your help to save our daughter. The funds we receive will go directly to “Amy’s” treatment care and specialists.
I cannot thank you enough for taking the time to read this. Any little bit helps, including your thoughts and prayers for our daughter
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