So so so itchy

 I'm having a miserable night. In general, I've been able to take a bath with baking soda, oatmeal bath, lavender, and coconut oil, take a topping 75mg of the prescription antihistamine, a glass of wine, and go to sleep. Tonight was different. The rash is worse and the stinging itch just won't let me sleep. I am tired of thinking about this. The rash is typical of the EBV rash, according to pictures I find online. Sometimes the rash is related to the use of antibiotics for EBV, but I got the rash before starting Keflex and this class of antibiotic is supposed to be less likely to give the rash anyways. I don't know if I should try Lomatium but Jane Barlow thinks so. I don't know if I should restart the Fenben protocol. No one answered me on the Fb site about rashes they've experienced. Do I try Ivermectin? 

I'm afraid to do any of this because this night I thought I may have to go to the ER, the red, raised rash got so bad and has been so uncomfortable. 





When things were pretty bad, I typed this up in case I needed to go to the ER. For my records: 

Medical History Leading to Current Rash Problem — 12/27/23


Spring 2017, diagnosed with Angioimmunoblasic T-Cell Lymphoma

City of Hope confirmed and suggested CHOEP with Stem Cell Transplant

19 - 30 month average life expectancy

30% chance of 5 year survival

Very common to relapse after aggressive treatment 


I decided to delay treatment and used only alternative treatments except: 

Prednisone for joint pain and swelling starting March 2020


Belinostat April 2020-July 2020 - couldn’t tolerate and not working


Romedepsin March 2021-June 2021 - Shrunk tonsils but couldn’t tolerate


Duvilisib - April 2023 - July 2022 - Couldn’t tolerate 


Monitored by oncologist, watching for symptoms of advancement. 


November 2023 met with oncologist, complaining of the feeling of lymph nodes pushing on windpipe. 


We decided to try 100mg Prednisone for 5 days and then reduce. 


Got what seemed like a flu while doing that. Vomiting, diarrhea. Miserable few days. Heavy arms. Big Fatigue X 5 days. 


Stressful Thanksgiving. Pretty much stopped all supplements. 

Started noticing a worsening rash that almost always is worse the later the day gets and better in the morning. 


Still took: 

AM Levothyroxine - 150mg

Liothyronine - 5mg


Daily 10 - 40 mg Prednisone, depending what is going on. Generally 10mg maintenance. 


Evening Progesterone 200 mg

Estradial/Testosterone Cream

I stopped all of these the end of Nov. thru about Dec. 25 (was getting rash anyhow) 

Probiotics

Vitamin D/K

Low Dose Naltrexone



Dec. 2, I feel pain on left side/lymph nodes and worsening rash. Feel lousy. Very Fatigued. Oncologist (Dr. Mellott) feels this is the AITL taking off. We need to start treatment…new scans, labs, biopsy. 


CT Scan doesn’t show huge progression. Labs look good. Biopsy confirms still AITL. Biopsy of skin by dermatologist (Dr. Marcus) suggest its the virus since I am not taking any drugs that should give me a reaction + DO’s labs show EBV raging, high hs-crp. (67). Fear of infection from port (some question by techs at echocardiogram) so start Keflex. 


Nothing helps with rash. I jump in the bath when miserable with baking soda, oatmeal bath, lavender, coconut oil. Pretty much just a diversion. 


Dermatologist gives me prescription antihistamine.  Doesn’t touch rash but helps me sleep? I’ve tried Tylenol PM and Benadryl too. She suggests I start using Claritin, which I do, 2X daily. Can’t tell if it helps. 


I start Keflex Dec. 15. Way after rash already established. 


I started Red Light Therapy Dec. 20 - much worst that night

                                     Dec. 22 - better that night 

Office closed until 1/2/24, so no light therapy for awhile. 


Great day Dec. 24, rash returned later that evening. 


Manageable Dec. 25-26 


Started Diflucan Dec. 27 for apparent yeast infection starting.Took again Dec. 30. 


Worse night yet, Dec. 27. Itchy, painful, raised. Wide Spread. Spreading more and more onto face, feet...etc. 


Continuing on. Better in daytime. Can be very difficult to sleep. 




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