Human monocytic ehrlichiosis

Discussion in 'Lyme Disease Archives' started by Shalome1990, Nov 19, 2008.

  1. Shalome1990

    Shalome1990 New Member

    I have been on the Chronic Fatigue board, but not on the Lyme board. I just got a call today from my health dept. that a test my doctor ordered show that I had ehrlichiosis. I look online and it says that HME can be treat with antiboitics.

    I will try to go back in history, I have felt bad for 20 years now. Until now all lab work showed normal (of course). I have been sick so much and had antiboitics that it seems like it would be gone by now. I am tired every minute of every day. The health dept. guy said it was bacterial, so to me that means very treatable. But, if I have had it for 20 years, what does that mean? I ask you guys because I know with all of us so sick, sometimes we do a lot of our own research and we know more than most folks. Is this like Lyme and I will live with it forever, will I be able to keep it at bay, will it ever go away??

    Please help!!
  2. pepper

    pepper New Member

    but I will throw in my two cents worth. A few years ago, I suspected I might have Lyme disease and watched a DVD by Dr. Burrascano from 2003. I decided from that speech that I might not have Lyme but I definitely have ehrlichiosis and mycoplasma - from my symptoms only.

    My doctor tried me on Doxycycline and I herxed incredibly which indicated that it was killing something. My liver enzymes went high so my dr. took me off the Doxy and I didn't pursue treatment since I thought I couldn't tolerate the drugs.

    I too am exhausted every minute of every hour of every day so I know what you are talking about. I had IV antibiotics this past summer for a week and I felt so much better!

    But I wasn't on them long enough since I have been sick for 16 yrs. Since you have been sick even longer, it will take you a long time on abx to be feeling better.

    Even a new case of Lyme needs several weeks on abx and you may not have had that. Or perhaps not the right abx since different drugs kill different bugs. Doxycycline I believe targets Lyme and ehrlichiosis.

    I think if you have HME, you could have Lyme and other coinfections. A Lyme Literate MD would be able to help you get this sorted out and you should get at least part of your life back.

    I have been emailing a lady who was dx with MS 14 yrs ago. For 12 yrs she got worse and worse. She has been on oral abx for 8 months followed by a year of IV abx and says that she is 75-80% better! That is what is encouraging me to get to a LLMD asap. I hope that you can do the same and get feeling much better.

    Good luck!
  3. Shalome1990

    Shalome1990 New Member

    Thank you for your reply Pepper. I got my labs back today. And, I do have several other things. I never remember being bitten by a tick. I also have the chlamydophila pneumonia, cytomegalovirus, HHV-6, and lyme.
    I know it sounds so ridiculous to most people, but I just found out yesterday and I cried about three times because I had a reason to say, I don't feel good, I am sick. It is also nice to know someone else out there knows the pain and agony I am in. I will talk to my doctor on Monday and see what treatment I will be getting.
  4. pepper

    pepper New Member

    I know exactly what you mean about knowing that there is a reason - proof! - of why you are feeling so sick. I am waiting for my appointment with a Lyme Literate MD and am so anxious to get the blood work done. I will be very disappointed if it is negative even though I know that there are false negatives sometimes.

    Good luck with finding a doctor to treat you properly.
  5. Shalome1990

    Shalome1990 New Member

    Thanks Pepper, I hope you get what you need to get better as well!!
  6. Renae610

    Renae610 New Member

    My 21 yr old daughter has been ill for 9 years and has CFIDS, Fibromyalgia, CMV, HHV6A, Stage 3 Lymes with HGE, Anaplasma, and Babesia. What a combo, huh? Got that diagnosis in 2007.

    I am thankful that my persistence in finding "cause" paid off, because now we can TREAT specifically and hope for better! I'm so glad after so many years of illness, that you too have answers and can work toward improvement.

    My daughter could not tolerate most meds and supplements at the time she was diagnosed. This year she's taking NutraMedix products, used in the Dr. Lee Cowden Protocal, and is on several other supplements too. It's slow going but we're keeping hope.

    Best wishes,
  7. Shalome1990

    Shalome1990 New Member

    Thanks for the reply. I am so glad to say I have something. I have known something has been wrong for years, but to really have it in a test!! I have spent so much time and money trying to find a cause, that it was becoming maddening. I am glad I finally went to a FFC doctor, they are the ones who ran the tests. What is the Lee Cowden Protocol??
  8. Renae610

    Renae610 New Member

    Cowden uses a group of herbs from NutraMedix, including Burbur, Samento, Cumanda, Quina, etc.
    Burbur helps to buffer so you can tolerate herxheimer reactions. You have to have a professional who is familiar with the plan to guide you as to when to alternate from one herb to another. I also bring my daughter to a local chiropractor's office where they have EDS testing (electrodermal screening) to determine the dosages that she needs as her condition changes over time.

    Because my daughter is so hypersensitive, she can't tolerate meds so the herbs are the way to go. I am also hoping to get 880 frequency Light Therapy for her -- her integrative doctor says he will view the websites I gave him and try to find a way for her to get this treatment. It will be costly if we can't get insurance help.
  9. Shalome1990

    Shalome1990 New Member

    Oh, I have spent years researching CFS/Fibromyalgia, now I will have to do it all over again for Lyme, but I don't care!!!
    How does the light therapy help?
    I spoke to my doctor yesterday and she is prescribing me two types of antiboitics because I have Lyme and Erichilosis, so need two types of antiboitics to hit both types of infection. She also told me there were 3 forms that Lyme can take: Cell Wall, Intracellular, and Cystic and that the infection can switch forms to try to avoid irradication. I am so sorry that your daughter can not tolerate the medicines. I am a little scared for myself since it has been so long. My FFC doctor is also going to send me the bubur you mentioned to help with what I can't remember.
    I have a chiro, but I do not know anything about the EDS testing. Do all chiros do that, or is it a specialty thing whereas they do it because they want/believe in it?
    I really have to keep in touch with you. I am learning a lot. I am so excited to have a path to be able to go down, in hopes to help. Does your daughter have to follow a certain diet??
  10. Renae610

    Renae610 New Member

    There are several knowledgeable people on this board, including Much1958 and Cherylsue. I don't have much time to be here and probably don't know as much as they do. It is a great place!!! Welcome!

    I spent years researching CFS too. That's because I was directed away from Lymes when three Western Blot tests and one ELISA test were negative. It was through this board, I found out about Igenex Lab, found our LLMD, and got my daughter diagnosed!

    Since Lymes causes deficiencies in the body, I recommend the SpectraCell lab test.
    My daughter is low in B12, folate, zinc, and Omega 3. She has had to change her diet, as she developed new allergies and food sensitivities. She was diagnosed with Celiac, Leaky Gut Syndrome, and IBS too.

    You would have to call to find a highly skilled EDS technician in your area.
    It is computerized. It is not covered by insurance. But it saves us alot of wasted time and money experimenting with products. You find out what will work and in what dosage.

    Some say that the NutraMedix herbs and Cowden protocal are all you need. Others say you should use Doxycycline and can later switch to the herbs to maintain. My daughter's LLMD prescribed Mepron, Zithromax, a specific kind of Colloidial Silver, along with other supplements.

    Some feel that antibiotics alone cured them. Others say that they felt better with antibiotic but there's a chance of relapse. Some say antibiotics should be avoided altogether, because they might create a more resistent-to-treatment bug. In any event, it seems that what works for one does not work for another patient. That might be because we have different coinfections or because we each have been sick for longer periods of time.

    There are other plans for treatment, including Marshall and Buhner. Some people use electrical frequency machines to kill off.

    I think the most promising treatment I've read of yet, is the Bionic 880 frequency machine used in Germany and other parts of Europe, with thousands claiming to be cured. My kinesiologist has a light device that he says can be customized with 880 and is much cheaper, but can it do the same thing? This Bionic 880 kills off Lymes and coinfections, resets the hormones, and you have to detoxify. Problem is, that it costs thousands! But in 8-10 treatments, I hear they are better.

    Garth Nicolson is a popular name among those who are trying to kill off mycoplasma.

    Take good care of yourself!

    [This Message was Edited on 11/25/2008]
    [This Message was Edited on 11/25/2008]
  11. Shalome1990

    Shalome1990 New Member

    So, Lyme isn't clear cut and easy to figure out either, great!! Well, thanks for your help. I have already learned so much in the 6 days I have known about Lyme. I am getting really bad headaches and I haven't gotten them in a long long time...... Shalome
  12. Renae610

    Renae610 New Member

    When I looked up Erhlichiosis online and saw a map of the U.S. colored to show where it occurs the most, I realized, we are located right in one of the key places. I had never heard of it before my daughter got diagnosed with it!

    I hope for you to get relief from the headaches!!