Hi, my name is Kimberly. I am a 59-year-old woman. I was diagnosed in November 2024 by an infectious disease specialist after 2 plus years of numerous dr.'s shooting in the dark. Being accused of using illegal drugs by my internal medicine specialist as she tried to slip a drug UA by me while I was having an upper and lower GI, thinking that it must be something I was doing to cause all the pain because she had no answers. I and the infectious disease told her a UA tox screen for illegal drugs was completely unnecessary and were more than a little pissed off. Being put through mass doses of high-octane antibiotics and steroid treatments repeated treatment of cellulitis for a1 1/2 years because none of the doctorâs here in my town had a clue. The EM started within months of my moving into my apartment and being bitten by bed bugs over the last two years the bed bug situation has not improved. The city and county will do nothing because they donât believe bed bugs spread or carry diseases. They are wrong. I have read the latest research in Europe it proves it. I am violently allergic to their bites, pee, bodies, and poop. The reaction gets worse each time I have a surge of bedbugs and bites. The erythromelalgia then explodes both feet ankles and now clear up to the back of both legs both hands and my left ear. Each flair is attacking more of my body The bites also affect my asthma and cause carbuncle boils on my back and head that are filled with mersa. I need to find a dr that knows how to treat all of this. Where are they doing research? How to get it on talk shows, social media and finally to congress for more funding. Help! I live in a town of 9500 people in Central Montana. I also have psoriatic arthritis, plaque psoriasis, fibromyalgia and have had several small strokes. My family is full of autoimmune diseases on my mom and dadâs side. He has advanced Parkinsons, my little sister MS which she passed away from at the age of 44 from complications of covid. My mom, bels palsy, tardive dyskinesia, dystonia, dysphonia, my daughter was born with transient combined hypogammaglobulin anemia. My neurologist suspects that I also have Parkinsonâs, more tests are needed and are upcoming. I am more than willing to be a Guinee pig if it can help anyone else not have to go through this hell. Thank you, Sincerely Kimberly P
I think Mayo Clinic in Rochester, MN is the preeminent medical erythromelalgia location in the US, particularly for diagnosis. They will book you for about a week to conduct your tests.
Good luck!
Thank you so much. Have a blessed day.
Iâm so sorry for what you are going thru. I moved into a place with bed bugs, and lost everything i owned. I recommend you leave the apartment and donât take any belongings with you. Thatâs what i did.
Iâm so sorry for what you are going thru. I moved into a place with bed bugs, and lost everything i owned. I recommend you leave the apartment and donât take any belongings with you. Thatâs what i did.
Hey @Kimbersunshine ,
My name is Merl Iâm a member of the modsupport team here on Benâs Friends.
Iâm sorry to say it like this, but your experiences with medicos are not unique. For many of us with rare conditions getting the medical-run-around is fairly common. Many medicos can be fairly knowledgeable with more common conditions and be rather dismissive when we donât fit a particular âDiagnostic Boxâ. They love the simple âA+B=Câ theory, symptom âAâ + symptom âBâ equals Diagnosis âCâ, but when it comes to more complex cases that A+B is way too simple. Why do I say all of this? Because I too have had multiple drâs, giving me multiple diagnosis. Some of these diagnosis I call âpseudo diagnosisâ. Theyâre not a direct diagnosis but rather a case of âIf itâs not âxâ and itâs not âyâ then it must be âŚâ For me personally, it took years (2 decades) to get a true diagnosis and it wasnât until my situation became life-threatening that a more complete investigation was undertaken. Then the medicos came out with the line âOhh look what we foundâŚâ like it was all something new. Iâd been telling them something was amiss but been labelled every type of crazy âwell, we canât find anythingâ, until they did find it.
I think âCharlesâ (@emhelp ) has given you some good information in regard to Mayo. You need someone with the knowledge to investigate more holistically. A team of differing specialists, each to investigate their differing specialty.
Best of luck with it all,
Merl from the Modsupport Team
Thank you, Iâve been told that I was imagining the bedbug bites and that dr.didnât know what they were talking about by the site manager at my complex. I believe the bites have directly and indirectly caused the carbuncle boils,repetitive cellulitis mersa and have spurred on the EM. It will be nice to get some answers and some help. Thanks again for sharing. I hope you have had some success with treatments. Kimberly