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Ack! I’m so nervous about my upcoming appointment with an endocrinologist to test for autoimmune thyroid disease that I’ve decided to exercise my anxiety on my keyboard. To be clear, I’m not afraid that I will be told that I have thyroid disease. I’m afraid I’ll be told I don’t.

Before going on about me, it is worth noting that autoimmune diseases are on the rise internationally. From type 1 diabetes to lupus to multiple sclerosis (and 97 other ways the body has developed to attack itself), the number of people affected is doubling, tripling and even quadrupling in industrialized nations around the world. In the United States, an estimated 23.5 million people suffer from some form of autoimmune disease and, interestingly, women account for almost 80% of cases. Along that line, we of the fairer sex are twice as likely to develop multiple sclerosis, four times as likely to develop scleroderma and seven times as likely to develop Graves’ Disease – what I ‘hope’ I have.

I think anyone dealing with a suspected autoimmune disease can identify with feeling desperate to be told they are truly sick. Symptoms are so diverse and affect so many different parts of the body that it is easy to feel like you are going crazy – or dying. Beyond that, some symptoms (particularly those related to concentration, mood and energy) are invisible and difficult to convince others – particularly some more chauvinistic doctors – to take seriously or look at holistically. I found it such a challenge, in fact, that I ultimately turned to Dr. Internet as my primary diagnostician. Indeed, if I had continued to listen to my GP instead of digging for information myself, I would be going to see a psychiatrist tomorrow instead of an endocrinologist.

Since this is the first and probably the last time I will ever write about this, I’ll go ahead and talk about my symptoms. And just in case anyone else struggling with the same things ever actually reads this diary, I’ll go into a little bit of detail.

THINGS GOING ON INSIDE: I DON’T FEEL ‘RIGHT’

•    I’m tired. All the time. It doesn’t matter if I sleep a lot or a little. I rarely feel anything but tired. In meetings, even those I am leading, my main focus is on staying awake.

•    My ability to concentrate (particularly on work) has dwindled alarmingly. I’ve gone from decades of highly focused productivity to staring mindlessly at a blank page for hours and even days. It doesn't help that my eyes often decide that they can't be bothered to focus.

•    I often feel spacey and light headed and my IQ seems to have dropped dramatically. Sure, I still know that 2+2=4 but figuring out which direction I’m headed when looking at a map? Lolz! Not lately.

•    Noise – I can’t stand it. The dog barking, happy 12 year old boys talking too loud, the buzz of a faulty television cable… all have become like electric shocks. The nerves all over my body feel raw and I get jumpy, confused and explosively angry.

•    I’ve lost interest in the things that used to bring me joy. Microwave dinners have replaced home cooked meals and I haven’t read a book in almost eight months.

•    My emotions swing from happy to sad to nothing at all. Even when dealing with apathy, however, I have anxiety attacks (although I prefer to think of them as ‘adrenalin surges’). I stopped worrying about whether they could be heart issues or strokes ages ago. I simply accept they’re happening and do my best to ride them out.

•    Despite having no energy, I often feel restless. I’ll jump up from my comfy chair and go stand in another room. Because I have no reason to be in the other room, I then return to my comfy chair.

•    Raging irritability, thy name is me.

•    Vertigo, I’ve started getting it all the time. Normally mundane tasks like walking the dog or picking up groceries become Fear Factor adventures when coupled with sudden whooshing disorientation and rubber legs.

•    I can’t bear heat. My internal thermostat spikes 10 to 20 times a day. When outside, I feel like my clothes are melting onto my skin because a fire is burning under my epidermis. When others are talking about that ‘delightful cool breeze’ and how they think they need a jacket, I’m mopping sweat from my brow. Expose me to hot outside temperatures for long enough and my speech will start slurring. By the time I get home, all I can do is pass out for hours.

PHYSICAL:  IT’S DEFINITELY NOT ALL IN MY HEAD

Polyuria: I have to pee, a LOT. Between 20 and 35 times a day. It has been going on for years and has become so routine that I barely notice anymore. I’ve been to GPs and urologists. I’ve been tested repeatedly for the usual suspects - infections (nope) and diabetes (nope). I’ve had ultrasounds and even a bladder biopsy. I’ve been condescended to, smirked at and even told that the problem is bottled water (huh???).

Early menopause: In my late 30s/very early 40s, my periods suddenly started to get very light and short. Then they virtually stopped. I’m now 44 and have had fewer than 12 periods in the last three years. Four of those happened in a six week span of time. After the bladder biopsy during my inaugural episode of polyuria, I started spotting and went to see an ob-gyn (something I don’t do often enough). He didn’t know what the problem was but causally commented that my uterine walls were “paper thin”. He clearly wasn’t concerned and I really had to wee so the conversation ended there. Writing everything off to early menopause, I never followed up.

Vitiligo:  Michael Jackson suffered from vitiligo. My friends (and complete strangers) have often commented that through his various cosmetic surgeries, Michael Jackson seemed to be trying to look like me. Now I have developed vitiligo and my friends are joking that I am trying to look like him. Ha ha. So funny!

Vitiligo, an autoimmune disease in its own right, kills off the skin’s melanin cells, creating rather sizable pigment-free splotches around the body. It started slow, a few splotches on my torso that I forgot about as soon as I put my shirt on. Now it has spread to my hands and face. You might think this would bother me but it doesn’t. Being fair skinned to begin with, the de-pigmented zones aren’t as starkly noticeable on me as they are on darker skinned suffers. Beyond that, watching the condition spread across my face prompted me to consult Dr. Internet where I learned that every single thing I’ve described in this diary (and a number of things I haven’t) can be tied to hyperactive thyroid disease.

Imagine that! Bottled water might not be the reason I run to the loo five times more often than the average healthy person. And, instead of mumbling about psychiatrists and sending me off with a short scripts for Xanax, antibiotics and antihistamines, maybe my GP and other physicians should have paid a little more attention to the bigger picture during my various symptom-specific visits over the last year.

Tomorrow, based on Dr. Internet’s suggestion, I’m off to an endocrinologist to see if my thyroid is an overachiever. As far as autoimmune diseases go, it is a pretty good one to get because, while serious, it is easy to diagnose and very, very treatable. In fact, with proper medication, I have a 30% to 40% chance of sending it completely into remission. If that doesn’t work, I can swallow pills to radiate the hell out of the gland and kill parts of it off. And if THAT doesn’t work, a surgeon can just remove the sucker altogether.

And this brings me back to the start of this diary. In many ways, I am viewing my appointment with the endocrinologist like a child views Santa’s impending visit. I’m praying I get what I want and will be crushed if I don’t.  Please, dear endocrinologist, I’ve been a very good girl and I really want an autoimmune disease diagnosis this year!

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Comment Preferences

  •  Wow. I hope you do have it....???? (8+ / 0-)

    (Not sure what to say).  Please post a follow-up.  I don't know diddly about hyper-thyroid disease or its treatment.

    To any wingnut: If you pay my taxes I'll give you a job.

    by ban48 on Wed Apr 03, 2013 at 04:45:57 AM PDT

  •  Best of luck. (6+ / 0-)

    I went through that a while back and finally got a decent and rather comprehensive blood test. My thyroid was only marginally low but everything sitting on top of my kidneys was shot, and the good old female hormones were in short supply, as well as a few vitamins, mainly D, B-12, and folic acid.
    It was certainly worth the hassle. Seriously though, have more than just your thyroid tested.

    You..ought to be out raising hell. This is the fighting age. Put on your fighting clothes. -Mother Jones

    by northsylvania on Wed Apr 03, 2013 at 05:04:01 AM PDT

  •  I know what you mean... (11+ / 0-)

    I searched for years to figure out why my daughter changed her personality whenever she ate certain foods. I was told by all of her doctors that every study reports eating sugar does not cause hyperactivity. I finally found something that sounded exactly like my daughter, everything fit...

    Her pediatrician ordered a test and the results were negative for excess fructose. I literally sat down and cried. I know her symptoms are real, I absolutely know her personality changes were beyond her control. Thankfully her gastroenterologist agreed to do a breath test -- and her results were through the roof. It felt so good after all this time that the doctors knew I wasn't crazy.

    Good luck -- I hope you get the results you are looking for!

    First the thing is impossible, then improbable, then unsatisfactorily achieved, then quietly improved, until one day it is actual and uncontroversial. ... It starts off impossible and it ends up done. - Adam Gopnik

    by theKgirls on Wed Apr 03, 2013 at 05:04:03 AM PDT

  •  I hope you get the answers that you need. (4+ / 0-)
    Recommended by:
    DRo, worldlotus, Kevskos, Lujane

    It must be frustrating as hell to go through all of this stuff not knowing what's causing it. Please let us know how it turns out.

  •  Best of luck, hope you get your diagnosis (10+ / 0-)

    or at least are able to finally get the right diagnosis.  I also have autoimmune disease.  Aside from type 2 diabetes, which I have had for over 10 years, I was diagnosed last year with autoimmune hepatitis, lupus and rheumatoid arthritis.  While I test very high for the lupus and RA, fortunately I am symptom free so far.   I am on autoimmune suppressants to control the hepatitis, however I can really relate to some of your symptoms !!

    Just went through a very frustrating few months when my husband became very sick and lost a huge amount of weight.  He has finally been diagnosed and is on the mend, but we had to be really pushy and insistent to get the issue resolved.  Dr. just kept saying take Imodium.  Turns out he has C. difficile colitis - a result of having been on some very strong antibiotics last fall when he was hospitalized with MRSA - that pesky penicillin resistant staph infection.  

    •  Oh my goodness (4+ / 0-)
      Recommended by:
      Kevskos, Ice Blue, Lujane, FloridaSNMOM

      Having recently earned my Internet PhD in autoimmune diseases I've read that several often occur together - such as rheumatoid arthritis and lupus. And, of course, I suspect that I am dealing with two (confirmed vitiligo and hopefully thyroid). Aside from disfigurement, vitiligo is pretty symptomless but the thyroid has knocked me off my feet. How on Earth do you cope with all that is sitting on your plate?!?

  •  Everyone in my family (6+ / 0-)
    Recommended by:
    Kevskos, Jay C, tobendaro, viral, MarEng, Ice Blue

    has autoimmune disorders, from rheumatoid arthritis, gout, psoriatic arthritis, excema.

    I have been doing a ton of research and found
    Leaky Gut disorder to be the most probable cause.

    Of course, the diagnosis for this disorder is not mainstream yet.
    The essential idea is that a weakness in the gut, resulting in excess permiability, allows toxins that normally would be eliminated to be absorbed into the bloodstream, causing autoimmune/allergic reactions that can affect the skin, nervous system, major organs- wherever the weakest point in the persons body might be.

    Fibromyalgia, asthma and MS are also included on the list possible disorders.

    Digestion of carbs, which metabolize into long chain sugars, is the basis for the problem and becomes worse with low digestive enzymes.
    A switch to a diet that excludes most carbs, and adds more healthy fats, veggies and fruits is the first step on getting started to heal.
    Adding digestive enzymes, like those in papaya and pineapple, as well as some supplements along with the better dietary choices give each of us the ability to see what works for us.

    Anyway, i know this all sounds like crackpot territory to people who are not afflicted but i am working on healing myself and avoiding prescription drugs, which only make it worse.

    Some additional links- these have the best explanation of the science.

    Articles relating to Leaky Gut

    Leaky Gut and dietary guidelines

    More from Weston-Price Foundation

    •  This from a letter from a woman (5+ / 0-)
      Recommended by:
      tobendaro, viral, Ice Blue, Lujane, Kevskos

      with hypothyroidism...

      '...The symptoms I experienced were typically hypothyroid: exhaustion, severe muscle pain and cramping, sleep problems, physical sensitivities like skin that was sore to the touch, glare sensitivity and aversion to loud noises. Exercise became almost impossible because of the sharp pains in my legs. My menstrual cycles became constant PMS and periods with severe cramping and pain.

      Most disturbing, my mental acuity was lost, I had mental confusion and decreased word retrieval. My hair was falling out, my skin dry and cracked, my fingernails and hair barely grew at all. I was often found lost somewhere in space while the world continued on without me. My digestive system was a mess and my body temperature was often below 97°F. I was so cold at times I had to jump in a hot shower just to raise my body temperature to normal. Living like this can only be described as a fate worse than death at times.

      All this was due to soy consumption....'

      Soy and hypothyroidism

      I wish you a speedy resolution- feel better soon.

    •  There is a lot to be said (4+ / 0-)

      for looking outside mainstream conventional wisdom for answers and solutions you are comfortable with. It is far more common where I currently live at the tip of Africa than in the US. Here, even among the highly educated, it isn't something that you ever feel a need to defend and it is certainly a route I am going to explore.

      A REALLY interesting thing I've learned about autoimmune disorders over the last week...

      1. They are far, far, far more common in industrialized countries.

      2. Children who are born in industrialized countries but move to less 'advanced' regions while still young, develop autoimmune diseases at the rate of the region they have moved to.

      3. Adults who move to less 'advanced' regions develop autoimmune diseases at the same rate as those in their home country.

      Based on this, it seems pretty clear that the seeds for these disorders are planted when we are very young.

  •  My sister died from MS, I had it too... (8+ / 0-)

    Well, she technically died from cancer, but I was convinced that the heavy duty Betaseron (or is it Betaferon) drugs she took for MS were implicated in her demise. Not that I could prove it.

    I handled MS differently.  My symptoms started about 7 years after she was diagnosed.  Numbness, unsteadiness on the feet, nystagema (or jumping vision), double vision, some degree of impotence, fatigue, depression, etc.

    I researched on the interwebs and found a guy's writing, Timothy Stout, who basically said some supplements had been helpful for people. NOTE: these were generic supplements; he himself wasn't selling them nor pushing a particular brand.  Thinking "why not?", I bought them - bilberry extract (blueberry), grape seed extract, and pycnogenol (pine bark extract).  I didn't really expect anything to happen... Within hours, I was giddy with the lifting of my lack of energy.  My loss of vision and vision symptoms started to recede. Over time, I'd think I was out of the woods and stop taking the supplements and then my symptoms would start to reassert themselves...

    I've been 14 years without symptoms.

    I don't try to preach this solution because I don't think it works for everyone - and because people think its quackery or that I have something to gain, but I learned some valuable lessons:

    - people give doctors and pharma companies a lot of credence. Most of the time this is probably fairly well deserved. In cases such as with MS, though, there wasn't a lot on offer and the medical establishment has ZERO incentive - actually NEGATIVE - incentive to verify the efficacy of treatments they don't profit from.  And no one else will typically fund such studies.
    - there are great numbers of people who have handled their autoimmune conditions with nutritional or dietary changes. I stumbled into the right treatment for me and because I was in the first stages of relapsing-remitting MS, irrevocable damage had not apparently been done to my nerves.

    I told my sister about this treatment and found a doctor who suggested a similar path (he's at bionutrition dot org) or used to be), in case having an MD involved convinced her. She said the nutritional supplements I bought her helped, but that she would go with the Betaseron her doctor prescribed...

    About 4 years ago, a former boss and friend came to me, distraught, losing his vision in one eye. He told me his optic nerve was being degraded, apparently through autoimmune attack. I told him my story. He went away and did more research. A few months later he was in touch and I asked him how he was doing. He said his doctor had never seen such a turnaround and that whatever he had been doing was working.  He was on the regime that worked for me - and with a heavy emphasis on also eating fresh blueberries as opposed to bilberry extract.

    To this day, most of my family considers my experience likely borne of placebo effect (my father is a doctor). I don't really care; I have nothing to prove and I put behind me creeping blindness and all the other things I was experiencing.

    But the medical establishment has completely ignored large numbers of people like me who have treated their autoimmune disorders with diet changes or supplements.  Yep, there's no profit in that...

    I seldom tell my story now, unless someone has a condition and I think there's a chance they might benefit from the moral of it, if not my particular treatment.

    •  Interesting! (3+ / 0-)
      Recommended by:
      Kevskos, flowerfarmer, FloridaSNMOM

      I'm putting research about Timothy Stout on my 'to do' list for the evening.

      Like you, I'm completely open to exploring alternatives to prescribed meds. Luckily, I'm living in South Africa and I suspect recommended treatments are more in line with European thinking than American. I have been shocked to see how many US doctors recommend irreversible radioactive iodine therapy before trying more conservative hormone blockers.

      I know someone else with Graves' and he opted to follow the advice of a local nutritionist who specializes in autoimmune diseases. If I'm not mistaken, like you, the nutritionist sent his MS into remission through diet - almost 20 years ago!

      One of the things he recommended was removing all metal fillings from teeth. There is a school of thought (that I need to learn more about) that believes that the amalgam fillings leech mercury into the system, causing significant deleterious health issues and particularly autoimmune diseases. I have no idea about the validity of this theory but it is certainly very interesting to consider.

      •  If you google around, you'll find (1+ / 0-)
        Recommended by:
        Kevskos

        Several different dietary and nutritional therapies.

        I'm not sure about the mercury fillings issue. I have these fillings, and I've read a lot. I thought I might do more damage having them removed.

        There is a woman now touting a book about her dietary treatment too.

        I don't reside in a particular "camp" - other than the medical establishment is overlooking a lot of evidence and that different treatments can help.

        Just need to avoid quackery and those who peddle false hope...or try to sell others on something from which they profit...

  •  Dear Expat, (6+ / 0-)

    Good luck.  I am having symptoms similar to yours.  I have the 2nd round of EMG's from my neurologist today (arms).  I am also suffering from epilepsy and high dosage of meds to not control now, start upping dosage today again, adds more noise.

    He diagnosised and documented nuropathy in my legs yesterday and probably will in my arms today.  Glad you are still working.  I had to resign my job because I was going to become (already was) a liability to the tribe.  Hard to get to work on bus (1+ hours each way), manage 7 grants and other projects, supervise 3 workers and a prison work crew feeling like shit.

    My neurologist is going to add to the blood work my general had ordered today (glad I had put of that, saves a little bit of money).

    I am also going to print out your diary and bring it in.  You describe some of the symptoms I have not been able to describe and some I had overlooked, especially the emotional ones.  Thank you and good luck.  Hugs.

    •  Yeah. I'm barely working (2+ / 0-)
      Recommended by:
      Kevskos, FloridaSNMOM

      Being freelance and feeling like garbage don't really go well together. I suspect that clients who used to admire me now find me quite flaky. It is a bit of a circle, I get stressed because it takes me 10 times longer to get anything done and the stress seems to aggravate whatever is going on making it even harder to function.

      Now, your disease name(s) I'm very familiar with but, thankfully, not from personal experience. Neuropathy can be excruciating. My heart goes out to you!

      Good luck with your doc and feel free to unload to me anytime!!!

  •  Hi, thyroid disease here, and it can do just about (4+ / 0-)

    everything  you're describing.

    Please make sure the doctor tests your reflexes. It's a quick, easy test of thyroid function. If you don't have any reflexes or they're sluggish, that's low thyroid.

    If you get a simple blood test that shows your thyroid function is normal or maybe low normal, but your reflexes such and you still have all those symptoms, and the doctor wants to ignore them, find another doctor!

    I had doctors who ignored a lot of thing and under medicated me for about a decade. No joke. They want to read simple blood tests and ignore your symptoms.

    There are communities of thyroid sufferers on the internet who put together lists of good thyroid doctors. You could Google recommendations for thyroid doctors and see if there's one near you that people like.

    Confession time: When I'm not ranting about politics, I write romance novels

    by teresahill on Wed Apr 03, 2013 at 07:22:32 AM PDT

    •  Got it! (2+ / 0-)
      Recommended by:
      Kevskos, wilderness voice

      Reflex testing has been added to the list of things I'm going to make sure get tested. Along with blood tests for T3, T4, TSH, vita D, vita B12 and hormones.

      I'm in South Africa and think I have found a very solid thyroid specialist. I didn't ask my GP to refer, I informed him that I was going. I'm feeling so empowered!

      p.s. Confession time: My bookshelves might be stuffed with lofty reading material, but my Kindle is filled with romance novels ;-)

      •  Ahh, the Kindle. So easy to hide our (1+ / 0-)
        Recommended by:
        Kevskos

        guilty-pleasure reading material. :)

        Good luck with everything. On the hormone testing, female hormones, my doctor says the most accurate test is a saliva test. You spit in little tubes at different times of the day. She always has mine tested in that way.

        Confession time: When I'm not ranting about politics, I write romance novels

        by teresahill on Wed Apr 03, 2013 at 10:26:25 AM PDT

        [ Parent ]

  •  While you're at it, (6+ / 0-)

    Get checked for Lyme disease. It also fits ALL your symptoms. That heat intolerance was/is a crazy one for me.

    Insist on a Western Blot from Labcorp or Igenex. (Labcorp is usually covered by insurance. Igenex, isn't.)

    If you need more info, pm me here.

    Good luck.

    "'club America salutes you' says the girl on the door/we accept all major lies, we love any kind of fraud"--The Cure, "Club America"

    by Wheever on Wed Apr 03, 2013 at 08:01:56 AM PDT

    •  Something I haven't even considered! (3+ / 0-)

      I haven't lived in the States for almost 15 years but when I did, and when I visit, hello Lyme Disease territory. I also haven't considered bug bites during my African travels. South Africa is pretty bug-disease free (aside from easy to rule out things like malaria in some areas) but the same can't be said Uganda, Kenya, Tanzania, Mozambique, Senegal, DRC, etc

      I just found a random result for "polyuria" and "lyme disease" and you are right! The symptoms mirror everything I've described except vitiligo and early menopause.

      www.publichealthalert.org/Articles/MMDrymon/Neurasthenia-%20An%20Old%20Name%20for%20Chronic%20Lyme%20Disease.htm

      •  You basically made a list (0+ / 0-)

        of my symptoms. Everything. I suggest strongly you get tested. But even if the test comes back negative, and if no other cause for your symptoms is found, pursue lyme further.

        "'club America salutes you' says the girl on the door/we accept all major lies, we love any kind of fraud"--The Cure, "Club America"

        by Wheever on Wed Apr 03, 2013 at 07:12:25 PM PDT

        [ Parent ]

        •  And oh yeah, (0+ / 0-)

          Hyperacusis is basically diagnostic for lyme along with exhaustion, brain fog, vertigo and heat intolerance.

          "'club America salutes you' says the girl on the door/we accept all major lies, we love any kind of fraud"--The Cure, "Club America"

          by Wheever on Wed Apr 03, 2013 at 07:32:42 PM PDT

          [ Parent ]

  •  Find a broad spectrum doctor (4+ / 0-)
    Recommended by:
    sillia, Ice Blue, flowerfarmer, Kevskos

    Expatgirl, search for a broad spectrum doctor!  Try to find a doctor that ties all your conditions together, not just an endocrinologist for thyroid and another narrow specialist for another symptom.

    flowerfarmer's posting on the gut is very important.  That particular problem might not be yours, but give it consideration about other things that tie together.

    Of course, there is no magic bullet that makes everything well.  That said, look at the attributes of omega-3 fatty acids.  Combine this with other good treatments.  One person I know with several rheumatoid arthritis conditions finally found a doctor who treats it all as inflammation disease.  He has her taking 3 grams of the active ingredients in fish oil (EHA + DHA = 3000 mg) daily as part of the regimen.  It is helping already, along with the other meds and remedies.  (Don't take more than 1000 mg without medical supervision; I don't know if vegetable based AHA relates to this problem.)

  •  I had all of your symptoms (2+ / 0-)
    Recommended by:
    Kevskos, flowerfarmer

    and more, (except the early menopause and the vitiligo). I finally figured out that I have Lyme disease, got tested via Igenex Labs in California and got positive bands. (Lyme testing is very unreliable, you may get false negatives even if you have it.) I also have co-infections, protozoa that came along for the rid in the tick bite and make me very, very sick.

    I was sick for more than 10 years before my diagnosis. Now I'm in my third year of Lyme treatment and getting better, slowly. And yes, thyroid treatment is part of it.

    So I would say that whether you get a diagnosis or not, you are still very sick and need to keep looking for the CAUSE. The thyroid symptoms may just be the result.

  •  Tick-borne disease in South Africa (3+ / 0-)
    Recommended by:
    Kevskos, Ice Blue, flowerfarmer

    Like every other place in the world, they have it there. It's underrecognized, just like here, in part because testing for it is very unreliable and modern doctors do not like to treat patients as individuals, they want test scores.

    See this blog:
    Rickettsia in South Africa

    And you can google "Lyme disease  South Africa" and come up with a lot of interesting accounts.

    Don't feel too bad--if you lived in the U.S. you'd receive exactly the same kind of denial. Many Lyme patients get sent to a psychiatrist because their doctors don't believe their illness. We have to seek out doctors who know how to treat this disease and who get people better. It IS treatable, and most people can get better.

    •  Curious (1+ / 0-)
      Recommended by:
      Kevskos

      Are Rocky Mountain Spotted Fever and Lyme Disease the same thing?

      I know what your are saying about how US doctors under-test for Lyme Disease. A good friend of mine was sent from psychiatrist to psychiatrist and put on a ridiculous number of highly habit forming psychiatric drugs. Years and painful withdrawals later, it was discovered that her real problem was Lyme. My uncle had a similar story (but he needed to see the psychiatrists anyway).

      For me, the canary in the gold mine is the vitiligo. In the mid 2000s, researchers discovered a genetic link between the condition and a number of other autoimmune diseases, particularly thyroid disease.

      www.ncbi.nlm.nih.gov/pmc/articles/PMC2935342/

      I've watched a lot of House in the last decade and was pretty ruthless about counting out linked diseases that don't match my symptoms ;-) In terms of hyperthyroid,  virtually every box was checked except extreme weight loss and visible goiter. That said, I have dropped 10 to 15 pounds over the last eight months doing little more than sleeping. I suppose I discounted that because it only brings me to a size 10 instead of a size 6. Did I mention that my IQ has dropped significantly lately?

      •  Rocky Mt Spotted Fever is Rickettsia (1+ / 0-)
        Recommended by:
        Kevskos

        Rocky Mt. Spotted Fever is a tick-borne bacteria, Rickettsia rickettsii. They do have that in South Africa, see the blog I linked to above.

        Very often these infections (bacterial and viral) come together, as ticks are a stew-pot of infections. Lyme is Borrelia burgdorferi, one of the nastiest bacterium that exist. There are dozens of different strains of this. Another common co-infection that comes along with Lyme is babesia (a protozoa), bartonella (another type of bacteria) and various parasites from the microscopic to the type that are commonly known as 'worms.' And viruses, yeast infections, you name it. MOST of these infections are very good at evading detection.

        As far as the vitiligo, that may be caused by something else entirely (a virus??) but is taking advantage of your system already being whomped. Forget genetics! Genetics only points toward a susceptibility and doesn't help you. The two conditions, your undiagnosed illness and the vitiligo, may be linked because you are very sick. Infections of all kinds go for the sick and the weak, whether we're talking about plants or people.

        I wouldn't get too stuck on "autoimmune" as a diagnosis. That thought might hamper you in looking for causes. Many, many people with an autoimmune diagnosis eventually ended up discovering a bacterial infection. Which causes something that is identified as autoimmune, but goes away with treatment.

        I have watched two seasons of House, and do find it interesting. However, real life diseases can be a lot more complicated and harder to treat (their patients are usually cured by the end of the episode!). The one thing I did learn from House? Do NOT let them do a lumbar puncture. They are dying to do this to everybody but they never find anything that way. I'm having 'no lumbar puncture' tattooed on my back, just in case, LOL.

        Your brain problems could be a neurological/bacterial infection, like mine. Would you like to read the diary I wrote a couple years ago? This is Your Brain on Lyme...My Own Experience This got on the rec list at the time, blush.

        As for your IQ, don't worry. You are still the same person. You will find the right treatment and get better.

        •  Unfortunately (2+ / 0-)
          Recommended by:
          sillia, Kevskos

          I'm all too familiar with lumbar punctures. Had viral meningitis about 12 years ago and the youngish ER doc wanted to get some practice in - despite the fact that I had already been sick long enough to be dead if it had been the bacterial kind. He didn't know what he was doing, dug around but couldn't get what he wanted and then did it all again. Amazing how you will let yourself be tortured after four days of a 104 degree fever and splitting migraines!

          I think I'll join you for that tattoo!

          •  Yeah, and there are risks (1+ / 0-)
            Recommended by:
            Kevskos

            It's actually a dangerous procedure, not only uncomfortable. Why not just give the patient some antibiotics and see if they improve??? Possibly better than accidentally killing them??

            Diagnostics for some diseases are in a much more primitive, inaccurate state than most people would assume. Even if they had found a bacteria in there they might not have been able to correctly i.d. it. Grrrrr.

            •  If you (1+ / 0-)
              Recommended by:
              sillia

              look at a biochemical testing chart for bacteria you will see all sorts of exceptions.  That is why it takes several or more tests to id a bacterium.

            •  Now that I think back (1+ / 0-)
              Recommended by:
              sillia

              that poorly done and unnecessary puncture caused more than a year of radiating lower back pain and cost me a small fortune in subsequent doctors appointments and xrays to figure out just how much he had botched the job. Obviously not comparable to cerebral herniation but rotten all the same.

              I've just read your incredibly excellent Lyme diary and you describe the functioning issues I'm dealing with so much better than I do!! It should become required reading for anyone struggling to explain how it feels to have their brain turn to mush.

              While I'm still feeling confident that my thyroid is strongly involved in what is going on, I will keep an open mind that it might not be the be all and end all magic answer I am hoping for.

              •  Yes, need an open mind (0+ / 0-)

                to navigate medical channels. Because the thyroid issues are CAUSED by something. Typically doesn't just short out on its own. Though some people have thyroid cancers (easy to treat), etc., that can be seen as cause. Or severe metals poisoning, which can be detected and treated.

                The question is, what is causing your thyroid to misbehave?

                An infection is one possibility. Lyme can attack all of your organs, pituitary, thyroid, some people get heart attacks, etc. etc. it is one mean bugger. I don't mean to sound like I'm diagnosing you, just want to make clear a possibility that may not come up at the doctor's office.

  •  asdf... (3+ / 0-)
    Recommended by:
    flowerfarmer, Kevskos, viral

    I'm sorry for your troubles.

    I too suffer from autoimmune symptoms, one of which is polyurea. Strangely enough, this seems to happen to me only when I consume soy products, especially soya milk and a little with tofu. I've been "dry" a few weeks now since going soy free...

    Have you considered doing an elimination diet to see if food is exacerbating your issues?

    "The language of the conqueror in the mouth of the conquered, is ever the speech of a slave." Tacitus

    by letsgetreal on Wed Apr 03, 2013 at 10:27:29 AM PDT

  •  Be careful... (1+ / 0-)
    Recommended by:
    viral

    research thyroid storm and know what symptoms to look for, and when to get to the hospital. Thyroid storm is essentially toxic levels of thyroid hormone. I was hyperthyroid for years, the meds never did much for me, and I tried several. Finally mine were irradiated because it was determined surgery was too risky. My thyroid acted like a sponge, soaking up and storing the excess hormone then releasing it in bursts, cutting into them for surgery would have released the whole lot at once and I would have had a very slim margin of survival.

    Thyroid storm can do permanent neurological damage. I still have twitching episodes that look like grand mal seizures but aren't, they think because of damage done during thyroid storm. My thyroid was irradiated back in 2006.

    So yes, please, see the endocrinologist! Follow his/her directions, but also keep researching, know what to watch for and when to get to the hospital.  Hyperthyroid disease isn't as 'safe' as you think.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Wed Apr 03, 2013 at 02:12:17 PM PDT

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