My Illness Finally Has a Name!!

By , November 25, 2011

Finally.

So you know how I’ve been so sick, and just getting sicker? Well it took 39 vials of blood to get there, but we’re pretty sure I’ve got brucellosis. No wonder I’ve been feeling so awful… walking around with a massive systemic bacterial infection for the past 19 months. Good grief.

So here’s a little background on brucellosis:

According to the New England Journal of Medicine: “Brucellosis, like tuberculosis, is a chronic granulomatous infection caused by intracellular bacteria and requires combined, protracted antibiotic treatment.”

Basically, the bacteria live inside the cells of the immune system — namely macrophages, which are the cells normally responsible for destroying invading bacteria. The Brucella bacteria multiply inside the macrophages and then further invade the body when their numbers are greater. And because they live inside cells, and are very slow growing and hard to eradicate, treatment requires many months of a combination of antibiotics.

Unlike tuberculosis, though, brucellosis is not normally passed from human to human. You get it by consuming raw or undercooked milk or meat from infected animals (goats, sheep, cattle, bison, elk, caribou, dogs, and others) or, less commonly, by coming into contact with their secretions or carcasses. Nice.

It’s rare in the United States — only 100-200 cases are reported to the CDC each year; however it’s thought to be an underreported illness here and is much more common in other areas of the world that don’t have effective public health and animal health programs. Brucellosis is also known as Malta Fever, Mediterranean Fever, Bang’s disease, and Undulant fever, as well as several other names including my two personal favorites — ‘Satan’s fever’ and ‘Fist of mercy’ — which describe it well indeed!

I had never heard of brucellosis in my life, except that on our trip to Argentina last year I was reading the label on some cheese we bought, which said “Le Serenisima products are officially free of Brucellosis & Tuberculosis.” I remember saying out loud to my Hubby, “Brucellosis — GROSS! What’s THAT?” …and then taking a picture of the label, below! Little did I know I already had that exact illness as I was speaking those words! (I was already sick by the time we went to Argentina, so I’m pretty sure I didn’t get it there; however things got a lot worse in the months after Argentina, so I still can’t be 100% sure.)

So actually, there’s a lot more to this saga than I’m going to write tonight. But I do want to write it because I’ve learned a lot thus far from this crazy experience (and it’s not over yet, to be sure). But for that, I’ll wait until I’m feeling better and can sit up at the computer for a bit.

Anyway, the short story is that I’ve tested positive 3 times for brucellosis. Why I wasn’t treated for it after the first positive is part of the longer story. But 10 days ago, I went to see a new (and better) Infectious Disease doctor at the urging of my family. We did some some blood cultures, I turned down a bone marrow culture (still hoping that was the right choice), and he started me on the standard treatment of two antibiotics — doxycycline and rifampin, which is a strong and toxic anti-tuberculosis drug. I’ll need to get liver bloodwork checked every 2 weeks while I’m on that one.

The big bottles are blood cultures. Don’t worry, that’s not ALL blood in there! Only about a teaspoon of blood in each bottle, and the rest is the culture medium.

Both arms get poked for blood cultures. The upside of all this is that blood draws don’t bother me a bit anymore!

The drugs may take several weeks to kick in according to the leaflet that came with them. What I’ve noticed so far is that my symptoms are more intense; it feels like there’s a war going on in my body. All my lymph nodes and lymph channels hurt even more than before, including thymus pain (weird!). Hopefully it’s one of those things where you get worse before you get better. But stuff’s definitely happening; Hubby thinks my body’s gearing up and kicking this crap out, and we both feel like it’s a good sign, somehow. I hope so. But it’s been a very rough week to put it mildly, and I’ve just been hanging extremely low in bed. The drugs make me nauseous on top of the way I was already feeling (like I have a mega-hangover that never goes away). It’s not fair, is it, that the diseases that are already making you feel really awful are the ones that require strong treatment that makes you feel really really awful. I’ll be glad when the barf bucket next to the bed is a thing of the past.

But the nausea does seem to be calming down a little bit, and I can actually look at the food in the refrigerator again — instead of grabbing my bottle of applesauce while trying not to look at anything else in there, and shutting the door as fast as I can! I seem to have lost my taste for any and all tea at the moment, which is sad since I just got my big order of wonderful teas from Mountain Rose Herbs…but I expect I’ll want tea again once I’m feeling better. Man, I hope so!

The real treat was yesterday at Thanksgiving! I feared I would only be well enough to eat pretzels and baby food at Thanksgiving, since that’s what I’d been eating for several days. But I actually felt well enough to want to eat, and was able to eat little bits of the delicious feast my mom and dad cooked up! Bites of stuffing and mashed potatoes have never tasted so good.

And another really wonderful thing is that a good friend has been giving me the gift of 30-minute reiki sessions from a distance for the past 3 mornings in a row. All I have to do is lie there in bed and soak it up; it’s heavenly!

I’ve got lots of love and support around me, that’s for sure, and it makes such a huge difference. I’m eternally thankful for that.

(March 2014 health update HERE)

The drugs

*****

34 Responses to “My Illness Finally Has a Name!!”

  1. snowpeas says:

    o.m.g. FINALLY!! What a relief to know…so that now you can be treated, and get rid of it at long last. You are amazingly strong! Hang in there, and I’m going to keep on praying. <3<3

  2. Jane says:

    “Finally” is right!!! Amen for an answer and something to work with. Will continue
    to send healing prayers your way Lindsey, since it sounds like there’s a lengthy journey
    ahead of you still.

  3. Deborah says:

    Oh Sweetie, I’m so glad that you finally have an answer and also a cure for it. Now you can fully heal. We have you in our thoughts every day and are so thankful for you. Relax as much as you can and know that the healing is taking place. Your body is strong. What a wonderful Thanksgiving gift to hear that you are on the mend! Love and Hugs to you and F.

  4. Trish says:

    Oh Lindsey, I am so glad for you. It must be a releif to know your illness has a name and now you can start some treatment.
    Thinking of you and sending you wonderful healing thoughts.xxx

  5. Lindsey says:

    Thank you Trish — it really is such a relief. Afraid we’d never find the culprit, and I feel so lucky that we did.
    Thank you for your healing thoughts!
    Love
    Lindsey

  6. Lindsey says:

    Deborah,
    Thank you. Isn’t it nice it’s curable!! I’m feeling super thankful for that. OMG.
    Thinking about you too, and hoping you’ve had a nice Thanksgiving.
    Lots of love!
    Lindsey

  7. Lindsey says:

    Jane,
    Yes, I’m afraid this is far from over, but at least we’re moving ahead and “help is on the way.”
    Love to you,
    Lindsey

  8. Lindsey says:

    Snowpeas,
    I cannot WAIT to get rid of this at long last; yes. Thanks for continuing to pray!! :)
    Love you!!!!
    Lindsey

  9. Evi says:

    Oh Lindsey I’m so relieved that you finally know what is going on with your health!
    I think about you often and always read your blog but the kids do not leave me with much spare time to comment with a clear mind! :)
    Wishing you all the best with your recovery and make sure to eat plenty of cultured veggies and drink bone broth to protect your gut while taking the prescibed drugs and antibiotics!

  10. Bud & Kate says:

    Lindsey,
    What joyous news. There is light at the end of the tunnel and you are moving toward it. How great that must feel. What a relief, also, for all who love you, but particularly for your mom and dad and F. Kate and I will engage our Quaker community to hold you in the light for a rapid and peaceful recovery to full, shining health.
    We love you,
    Bud & Kate

  11. Lindsey says:

    Bud and Kate!!
    What a treat to see your message! Thank you so much for your heartfelt comment, and for engaging your Quaker community to hold me in the light. I can’t tell you how special that is… thank you thank you thank you. I appreciate that so much.
    The antibiotics are getting awfully intense, but knowing that I’m moving back toward health is helpful indeed!

    So much love to you both,
    Lindsey

  12. Lindsey says:

    Hi Evi! What a treat to see your message! Hope all is well with you and your family!!
    Thank you so much for your well wishes. And oh gosh, I wish my body were able to tolerate bone broth and cultured veggies right now, cause this sure is the time I need them most, huh. As soon as my tummy says “a-ok” to those, I’ll be chuggin’ them! It’s weird, how your mind knows what would be best for supporting health & healing, and yet it’s the body that has the last word isn’t it (basically, what stays down & what doesn’t!). And the body always wins. :-)
    Much love to you across the miles,
    Lindsey

  13. I read your gratitude sunday post, but I had missed this one. So glad I had the feeling to check your blog tonight!
    Wow, I am SO glad you found some answers!
    And I hope you will find some relief soon!

    You are so loved!

    Sending you lots of it from Oregon!
    Taryn

  14. Lindsey says:

    Hi Taryn!!
    Thanks so much for all your love from Oregon!! Thinking a lot about you, and sending lots of love to you from Colorado! Hope your Holiday Market day is successful!
    Love,
    Lindsey

  15. Sheila says:

    Wow what a story….I believe in Ireland everyone gets vaccinated against brucilossis. I hope you are full recovered now, 11/12.

  16. Nankie says:

    I just discovered your terrific website (while searching for a homemade pickle recipe)! I am sorry to hear you were ill, I hope by now you are much better.
    But one thing worried me – isn’t brucellosis generally from raw milk? Do you know how you picked it up? I want to follow all the Weston Price info I’ve been reading, which makes a lot of sense, but I am a concerned about drinking raw milk products. What is your opinion on that?
    Again, I hope you are feeling much better by now!

  17. Lindsey says:

    Hi Nankie,
    Thank you so much for your comment and concern. I really don’t know where I got the Brucellosis but I am guessing I picked it up from either raw goat milk from a farmer’s market, or some pasture-raised raw bison or beef. All of which I had frozen for at least two weeks, per advice of the Weston Price folks. However after I got sick and FINALLY found out what was causing it (a year and a half after getting sick), I found out that unlike most bacteria, Brucella survives freezing temperatures no problem. :-( Weston Price stuff makes a lot of sense to me too. However I think my raw milk and meat days are over.

    I am feeling a lot better, however the bacteria is very difficult to get rid of, and may never leave your body completely even with appropriate treatment. I had 10 months of antitbiotics which gave me my life back — they got me almost back to my old self. However it has been 7 months since I finished treatment, and I can feel my health slipping again. This has been a very very long road. Brucellosis is awful. You do not want this disease! I have been battling it for 3 years so far. You just have to be so careful these days, it’s really too bad. I sure learned that the hard way. Our world is so different now than the one Weston Price saw in the 1920s. One thing that Sally Fallon has said is that if you don’t have access to raw milk (or don’t want to drink it raw) then get the best milk you can find (for me that would be Organic Valley’s Whole Grassmilk, which is grassfed and unhomogenized) and either make yogurt or kefir out of it. That puts back the beneficial bacteria that were killed off in the pasteurization process.

    I hope I haven’t scared you too much. Although several medical journals write that Brucellosis is underdiagnosed and underreported even in the United States, overall it is believed to be a rare disease here. There are many folks out there drinking raw milk who have not gotten sick! And that is actually quite important to remember. In the grand scheme of things, there are so many risks out there… so many ways to get hurt, get sick, etc. And of course, weigh the risk vs. the benefit, but also don’t live in fear. That’s no fun either. :) But yeah, if I were to have to give advice, I’d say “avoid the raw milk and meat.”

    Thanks again for your comment :) :)
    Lindsey

  18. Nankie says:

    Thanks, Lindsey, for your detailed reply!

    But I am so very sorry to hear all you have been (and are still going) through. It seems an especially cruel irony that it happened in the admirable pursuit of trying to enhance your health.

    I am a registered nurse (obstetrics) but I definitely lean towards a more holistic model of health care. However, raw dairy has always made me uneasy because I remember the devastating outbreak of Listeria from Mexican soft cheese, in the 80s, that killed many mothers and babies in Los Angeles and was attributed to unpasteurized milk.

    So while I will continue to practice many of the Weston Price tenets, I still plan to avoid raw milk and meat. Sadly, you are right, it’s not the same world it was back then. I don’t feel the risk outweighs the benefit in this case.

    Funny you mentioned the Grassmilk – I just discovered it and purchased it for the first time this week! I’m using it for making my kefir and it seems to be working nicely.

    I am glad I discovered your blog. I love it! And I will be keeping my fingers crossed that you make a full and speedy recovery!

  19. Nankie says:

    Oh, one another point I meant to mention – for future reference, I’m pretty sure freezing does not kill any bacteria (but heat will). Freezing will suspend multiplication of bacteria while in the frozen state, but upon defrosting it will have the same bacteria as it did originally and they will continue to multiply.

  20. Melissa says:

    Wow! I’m so sorry this has been such a struggle for you. We will be sending prayers your way.

    I have to give you kudos for giving raw milk it’s due, even though you have been so ill. That isn’t easy to do. I’ve been drinking raw milk since I was little, and have been incredibly blessed by it. But I still see it as I see most things in life: everything has irisks. There are risks to raw dairy. There are also risks to pasteurized dairy. There are risks to vaccination, and risks to not vaccinate. Home birth vs. hospital birth…. the list goes on and on. No matter what people say on whichever side of the argument, there are risks, because we are alive and our bodies are fallible. We all just have to do the research and then decide which risks are the ones we are willing to live with, for ourselves and our families too. I’m so sorry it turned out this way for you! I truly do hope you start feeling better.

  21. Lindsey says:

    Melissa,
    Thank you for your comment and your well wishes and prayers! I truly appreciate that. What you wrote is absolutely spot-on; I couldn’t have said it better myself. Life is never black and white is it — many gray areas and many things to evaluate and decide about. Risk vs. benefit! Always.
    Thank you for taking the time to leave a note for me.
    All my best to you,
    Lindsey

  22. Sue says:

    Kudos on the freezing comment Nankie, which is why we can freeze raw bread dough and still get it to rise just fine upon thawing. Of course yeast is not bacteria, but a good example. Even consider cryogenic freezing being used these days for people, isn’t that so? Lindsey, I would like to encourage you to use whatever abx or treatments you need to quell the infection. I wish I could just wave my magic wand for you, but it is just a stick! Even so, I send healing thoughts your way, be your own advocate. You are obviously on the right track regarding attitude, positive thinking, and investigation; I am sure you will implement a resolution.

  23. Ruth Shannon says:

    I just discovered your site, so I’m a bit late in my comments, but since you are still suffering from brucellosis, they might be useful. I was given 3 antibiotics (rifampin was one) to take for 18 months to get rid of a mycobacter lung infection – nothing to do with brucellosis. I became bed-ridden with no appetite, but thought I had to stay with the drugs. I finally told my pulmonologist that I couldn’t continue. He knew exactly which drug was causing the problem, substituted another, and I’ve been free of the infection for years. Don’t assume that you have to get worse to get better. You can get much worse from drugs and not get better. Be aware. Hope you’re better by now.

  24. Viktoria says:

    dear friends, I found you by chance alone … I suffer from Brucella 13 months, our infectologists inadmissible Brucella, although I 8x positive test – ELISA. I take only DOXYHEXAL Biseptol … and gave me my family doctor … I feel that it is not very good …. Brucellosis is a very bad disease, I never failed to present, that the team can meet … I suffer because, according to infectologists our area is clean and free of brucellosis … I heal myself … I slept five months, seven months, I did not eat, rash, granulomas, broken nose, paralyzed arm, tingling, burning, damaged spine, I angiolipom the lumbar vertebra and the doctors are happy … I envy you your doctors! good! God bless you and I wish you health!!

  25. Lindsey says:

    Viktoria,
    Doctors here sound like the doctors in your country. Many of them are NOT good.
    I hope you can find a new doctor who will listen to you, and HELP you instead of work against you.

    Blessings to you,
    Lindsey

  26. Viktoria says:

    Lindsey dear … I believe that your health is already alright … I want to just say that it’s my health is on track … I got after long months of rifampicin with DOXYHEXAL and feel progress …

    however, bone pain and back pain persist …
    Brucella claimed its toll in the form of Tietz syndrome, Steave-Johnson syndrome and vasculitis, fatigue syndrome also …
    Fatigue still persists, even if it is significantly better than it was …
    and especially brain fog completely passed …
    I enjoy the clear and pure thinking …
    I believe that you’re better and you do not have so many consequences of that nasty bacteria …

    Take care and God bless you Lindsey! Good luck

  27. Gillian says:

    I have read that Kefir has/is used for treatment of Tuberculosis, has anyone used it to treat brucelosis? My brother is a sufferer and has been treated many times and sent it into remission only to have it return. Kefir seems to have many antibiotical properties and is said to be good for infections and even cancer.

  28. Lindsey says:

    Gillian,
    I’d only use kefir as an adjunct to antibiotics for these two infections. A case of TB or Brucellosis is not the time to employ antiquated alternative treatments (I’ve tried a number of such alternate treatments, and none of them actually worked, like the antibiotics did). Use kefir throughout treatment to keep the gut healthy and populated with good bacteria, but get actual treatment from an infectious disease doctor, with appropriate antibiotics (combination therapy is a must), continued for a long enough period of time (that last point is important!).
    In other words, kefir will do nothing for brucellosis, but it would help to support one’s overall health which is important in itself – but, does not replace antibiotics!
    Is your brother in the United States? I’m so sorry to hear he’s suffering with this disease; it’s hell on earth.
    Best to you both,
    Lindsey

  29. RIta says:

    Hi…i accidently stumbled upon this site in search of someone else in the US that is or has suffered from Brucella as myself. I fear i will never be normal again…

  30. Rita says:

    I just started this month on oral Rifampin and Doxy. We already did IV getamicn and it didnt help. Ive been suffering for 2 years and treating for 2 years…but my titers keep going higher and higher….Do you know what your Igg/igm was at after not being diagnosed for over a year originally? How long did it take you to kick the brucella? What is the best advice you could give and what was the magic antibiotic combo (and amount of time you took it) that finally worked for you? Im so sad and over feeling alone and hopeless…and advice would be amazing. Thank u in advance.

  31. Lindsey says:

    Rita, I’ll email you directly but wanted to reply here first with a few words – first, of understanding and commiseration! Bruecllosis is hell on earth. Many times you’re afraid you’ll die, and the rest of the time you’re afraid you won’t.
    Don’t forget that your body may be fighting additional stuff too, though, as mine was (and still is), although I didn’t know it at the time. Mycoplasma pneumoniae and a herpesvirus among several other things. My immunity is, and was, so low that a lot of stuff moved in, so to speak. My brucella titer was finally negative in September 2013, after being treated thru end of 2011 and much of 2012 with oral rifampin (600mg/day) and oral doxycycline (200 mg/day). I did those two for 10 months. Upon beginning the antibiotics, I initially felt much worse before I then began to feel much, much better. If you have only just begun Rif/Doxy combo give it a little time as the first weeks were discouraging and rather unbearable for me.

    Currently I am trying to clear out the mycoplasma. If only I had known about this mycoplasma sooner!, but better late than never. Most doctors do not test for it. I feel like I am untangling a huge, tangled, endless ball of string and I am unsure whether I’ll ever get back to my former state of health and energy. However I’m much better than I was in the throes of brucellosis that there is indeed hope. As I said though, Brucellosis wasn’t the only thing going on in my body which I wish I had known sooner.
    Finally I have found a good doctor who actually seems interested in helping me during the ‘brucellosis aftermath’! This is the first D.O. I’ve seen, and the first doctor who really seems invested in sticking with me and helping me feel better. (Most doctors just take the easy way out and say, “I’m not sure what to do. Here, let me refer you to ANOTHER DOCTOR.” And round and round you go in circles.) It is incredible how arrogant, uncaring, superior, and closed minded most doctors out there are. MOST!!!! Not all, but most.

    My hard-won experience has now shown me that going to an independent doctor who is not part of an organization like Kaiser, or staffed by a major hospital healthcare system (i.e., someone who has the freedom to think for themselves), and who is preferably a D.O., is the way to go. If you find a D.O. in private practice, I’d give that person a try first.
    Granted, I was diagnosed and received treatment (eventually!) under Kaiser’s doctors. But if you don’t jibe with your doc, if they’re not hearing you, and taking seriously your symptoms, if they’re trying to paste a mental-health label on you when you’re not crazy, then find another doctor. That is incredibly important okay? FIND SOMEONE WHO WILL SUPPORT YOU and help you and stick with you until you DO feel better, even if it takes trying a couple different antitbiotics until you find the right one for your body, or whatever. It’s really luck of the draw as far as finding a good doc, but just keep searching and seeking until you find one. Take the advice above, if you can. They’re out there, but you really have to look. Trial and error, really.

    As for how I am doing currently: right now I am on clarithromycin 1000mg a day, and am feeling great!
    My lungs are scarred permanently however, and immunologist I was seeing thinks they’re colonized with E.Coli so that is something you basically just “manage” and also of course the herpesvirus is with ya for life, so there are still things I will be dealing with long term. Oh and chronic sinusitis. Some other stuff too. Also, although my brucella titer did finally turn negative, I have read repeatedly that most likely it is with you for life and it’s a matter of your body being able to keep it suppressed. Actually they don’t really KNOW whether you totally clear it, but as it lives inside the macrophages it’s rather unlikely that every single cell will ever be completely killed by antibiotics. There’s a report in a medical journal I read, about a lady who had brucellosis 20-30 years prior, her titers were negative, and yet they found a focus of active brucella infection in ?her liver? I think it was. It’s an awful disease. I’m so sorry you’re ‘one of the lucky ones’ to have it as well.
    Blessings to you Rita,
    Lindsey

  32. Brenda says:

    I am glad you are doing better. One of the reasons you and others are having a hard time being diagnosed is this. You live in a city. The disease you have is based in a rural setting. Ranchers farmers and hunters are very familiar with it and the symptoms.Combine that with a arrogant doctor and well you have great delay in diagnosis. Piece of advice, if you are ever sick and think its a zoonosis, yet can’t get a city doctor to test or treat. Go outside of town to a country doctor. You can even go to a farmer rancher hunter and explain the situation. Many times they can send you to their doctor or one that will test you. You can also go to a medical school hospital. Yes you will have interns look at you. However you are more likely to be tested and treated. They don’t laugh when you tell them you could have been exposed to a zoonotic pathogen.

  33. Lindsey says:

    Brenda – Oh my gosh!!!! This is such excellent advice. In fact, I will utilize it in the future (seeking a more rural doctor) since Brucellosis will always be in my medical chart and some doctors have actually never even heard of it. ! In fact, I was in the waiting room for a doctor and there was a fellow patient there with her friendly mother. We got to talking and they are a rural family very familiar with brucellosis and its effects — however the doctor I was waiting to see actually had never even heard of it!!!
    So yeah – coupled with the fact that no one’s even really sure if it ever leaves your body or if the remaining bacteria just go into a dormant state and can re-activate in subsequent years… it may always “be a factor” for me unfortunately.
    Thank you SO much for writing this comment!! Kudos to you, thank you.

    Best blessings,
    Lindsey

  34. Brenda says:

    I live in walls walla Washington I was diagnosed with Brucella as well after my health declined rapidly. I am so scared, I also feel like I am dying. I saw another MD because the ARNP who diagnosed me with a Probability of Brucella said my case was too complicated and reffered me to an internal MD who said I donot have Brucella. He suggested I get off my antibiotics, because they also made my symptoms worse and referred me to a GI and infectionous disease MD. I am so scared I don’t know what to do! The RN at the health dept suggested it is best I stay on them until I see the ID MD! please some help here! I feel so alone and hopeless. I can’t work I can barely bath myself. I have lost 20pnds without even trying. I am also eating apple sauce, bananas, and avocado. Some advice please?

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