Discussion in 'Fibromyalgia Main Forum' started by KLILLY, Apr 21, 2003.


    KLILLY New Member

    I was so pleased to find your message forum on herxing. After suffering for almost a year with a wide range of neurological symptoms and severe fatigue, I was finally diagnosed by western blot with Lyme Disease. I live in North Carolina and Lyme is not well known in this area. I was blessed to find a Lyme literate doctor. Due to the severity of my neurological symptoms (meningitis, optic neuritis, short term memory loss and right sided weakness), I was started on a 24 week IV antibiotic (picc line) plan. My Dr told me that I may have an increase in the severity of symptoms due to herxheimer reaction. And BOY did I ever. I want to share with you all that the herxheimer reaction can be a very serious, life threatening reaction. In my case I awoke early one morning with a severe headache and constant vomiting. My fever was 103.6. Upon arrival to the emergency department my blood pressure was 80/54, my blood oxygenation was 84% on room air. I was given IV fluid at a high rate but my BP continued to drop as did my oxygen level. My Dr explained that I was basically in septic shock due to the high level of toxins released from the bacteria die off. I swelled up like a marshmallow and my weight sored to 210 pounds ( I normally weigh 178) My red blood count was 2, hematocrit 9. I honestly thought I was dying. I was hospitalized for 5 days and during my stay encounter specialist who did not "believe" my problem was herxing. My infectious disease doctor was my saving grace. After a drug holiday of two weeks, my anemia resolved, my weight returned to normal and my oxygen problem resolved. I must admit that I become very anxious at the first symptom of a herx coming on. I don't know if it is proper to list physician names on this message board but if anyone in the Carolinas would like info on my Doctor, feel free to email me. Wishing you all good days. Karen (Gazielle1@aol.com
  2. kerrymygirl

    kerrymygirl New Member

    Goodmorning or as my dad said to me when he got RA, have a great painful day. We were both suffering. He recently died and I was thinking about how he always said realistic stuff. Just miss him sooo. Anyway to this lyme thing I have had 3 poss. lyme tests and some neg. But have been told they no doubt I have lyme. Spec. she has web site Dr. Whittikar, more degrees than I can keep up with. She has Lyme and told me stuff you would not believe about her research and how they close labs and cover ups. She said she came close to being but in jail for exposure. She is a tough old broad, in her 70`s so does not put up with their lies. I personnally do not know what to do, I have been told I would need long term IV treatment since I have had it so long, misdiagnosed yrs. $$$ and that I live alone and the fact that antibiotics after long term often do not cure do to spirochete hides mutates affects cytokins with emit fluid to keep adding symptoms. Living alone and family very far, plus anyone I could count on recently died. I do not know how I could handle herxing alone. Not knowing how bad I will get and I am pretty bad already. You and I share alot of the same problems. I did start with meningitis,read bio. Lately I have constant chills,live in fl.,been in 80`s but alot of dysautonomic symptoms too. I have more tender points now,they lose count,cfids, high ebv.,mps,possitive ana,spinal damage etc. I just do not know what the best thing to do is. No doc on my plan to help. They just ignore. I know where to go just not on my ins. Plus since I have sooo many things. Yet I was read my 1st doc did the worst thing poss. 1 mo. on doxy. got sick so he stopped. The spirochete hides in the frontal lobe then and starts to do neuro damage. I have seen and read such conflicting reports 1 on ABC,stating advanced lyme is not cured by antibio but it hides and changes shape and does more damage. Yet I have no truly good days and have tryed so many things including test studies, and helping at clinic specializing in fm.lyme,Ra. pain management for us. Do you have something like mini seizures? I have worked with many pt. so I know how you are suffering and my heart goes out. What we try to be well. BTW there are only a couple of clinics that locate lyme and what bacteria it is.Please take care yourself and keep in touch! Huggssss

    Aaronkatie,let us know how things are progressing too. Been thinking about you!
    [This Message was Edited on 04/22/2003]