Discussions By Condition: I cannot get a diagnosis.

Rickettsia ??

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Mondeo
  • May 11, 2007
  • 01:53 PM

Hi,

I first got ill in May last year (12 months ago), it happened overnight I woke up with a viral type illness, shaking, malaise, dizziness and slight temperature. It went on for a few days and I visited GP, he advised probably a viral infection which would sort itself out within a couple of weeks.

A couple of weeks passed and no improvement in symptoms, the defining symptom was the dizziness, except it wasn't vertigo type dizziness, it was a spaced out, detached, unreal type feeling similar to intoxication but at the same time not a nice feeling.

I returned to GP and he ordered standard blood tests, LFT, CRP, ESR, Diabetes, TFT. All came back normal. At this point he advised it may be post viral fatigue which would clear up in time.

A new symptom had appeared then, a strange shaking and vibrating throughout my body, mainly when I was resting or trying to get to sleep, i've learned its called an internal tremor.

A few months passed and the dizziness gradually subsided, I was left with maliase, a strange nervous/adrenaline type feeling in my chest and the internal tremor.

I returned to GP and he repeated the blood tests, again all was fine. He then said I may be developing CFS/ME for which there was no effective treatment.

Again a few more months passed, symptoms same. I visited another private doctor and described my symptoms. He said he was not convinced on the ME theory becuase I had no fatigue, I was working fine full time, could do any exercise without feeling really bad the day after. I just didn't feel right.

Recently I went to see an ME specialist to try and find out for sure if I had it or not. He doesn't think so. He said he strongly suspects a Rickettsia infection. I have extensively travelled before getting ill, Asia and Africa (live in UK.) He's put me on an 8 week course of oxytetracycline, started in on Monday, no change in symptoms but I suppose its early days.

So my question really is if Rickettsia is consistant with my symptoms? My last foreign travel was 2 years before onset of my illness, is it possible that I picked up this infection then and something triggered it off from a dormant state?

Any information appreciated.

Thanks
Ben

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16 Replies:

  • Ben...not Ricketts...Please visit www.ahummingbirdsguide.com I have already heard from several on this site alone...Quite a following is gathering...all similar symptoms...look around site where I've posted...you'll see what I mean...Good Luck and Godspeed...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Ben...keep in mind I went to several doctors and they didn't think it was ME either...now I'm being tested after finding another doctor...They have ruled out several things with me from Chron's to Carcinoid Syndrome to perimenopause...and several others...There appears to be HUNDREDS on this site with ME symptoms...at least you had a doctor who thought to test you...I would look on hummingbird site though and make sure every test was done...I wouldn't go by the doctor"not thinking so"...I've had a "conversation" with a doctor in this forum who apparently doesn't "buy into " ME...not many do...is that why none of us can get a diagnosis and why most of us are here in this forum???? just a thought...Best of Luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Has anybody had any experience with Rickettsia?
    Anonymous 42789 Replies Flag this Response
  • Ben...ME/CFS:( ...sorry:( ...I'm being tested now...I have countless symptoms Best of Luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I'm from South Africa, my aunt has Rickettsia (tick fever) but I have no contact, no idea what she's on. They should test for its bacteria, not "suspect" it. I don't think it is that, or you should have been swelling up and getting rheumatoid arthritis symptoms - plus responding to its medication. However there are many versions. There is a particular small insect in Malawi that bites people, it looks like malaria but isn't. I don't know the name of it.To start something, see www.nutrasilver.com for a type of colloidal silver (silver ions suspended in water) that you can take internally. One can drink the ordinary type as well, but rather just keep a tot in the mouth for 10 minutes and spit it out. Also great for external application, dab it on. Here in ZA we brew it at home. It has proven consistently better than any med or antibiotic, for almost any problem. If it is correctly made there are no side effects. Please see www.tetrahedron.org/articles/colloidal_silver.html for info.Of course boost your immune system all you can, perhaps you already do. Get homeopathic Resque Remedy. Add Vitamin-B12 (complex), Omega-3 (salmon oil / flax seed oil) and of Vitamin-C 1000 mg (slow release) per day. If you use supplements already, be sure not to overdo it. Too much of certain vitamins may have bad results. But you can take quite a lot of Vitamin-C and even tablespoons full of Omega-3. The best Omega-3 is kept in a freezer in the health shop, not in caps. Avoid heated cooking oil (cook veggies in water and flavour with unheated extra virgin olive oil) and avoid processed foods (containing hydrogenated vegetable fat, additives etc). No margarine please, use real butter. Be sure to include cabbage (lots) and garlic.This doctor says we should drink quite a lot of water and also salt: http://www.phenomenews.com/nov2005/0a.htm - try to get Trocomare salt by Dr A. Vogel of Switzerland, in the place of "smooth flowing" salt .. Do read that link, it is most interesting, and cheap to try. This may be why marathon runners are so addicted to their running, they take plenty water and salt.Extras: I'm impressed with a site http://www.westonaprice.org/sitemap.html - be sure to read this one: www.westonaprice.org/soy/complaints.html whole page (!) and elsewhere http://thyroid.about.com/cs/soyinfo/a/soy.htm .. There is a lot of soy in commercial bread, and in almost everything. Even cancer can be fixed by taking flax seed oil, see http://www.cancertutor.com/Cancer/Budwig.html as well as http://www.beckwithfamily.com/Flax1.html .. And it may be due to a parathyroid malfunction, read www.parathyroid.com
    Curly Stooge 319 Replies Flag this Response
  • Sorry - also be aware of http://en.wikipedia.org/wiki/Schistosomiasis .. "Worm pairs can live in the body for an average of four to five years, but may persist up to 20 years." Further info at http://www.lonelyplanet.com/worldguide/destinations/africa/malawi?v=printBut this is not yet that one insect, living in the grass - not a tick, nor a snail, nor a mozzie..
    Curly Stooge 319 Replies Flag this Response
  • Do you have infectious disease specialists where you live?
    rad-skw 1605 Replies Flag this Response
  • Hi Mondeo, I have had the same "everything" as you from blood testing to symptoms! and they still don't know whats wrong with me, they keep tell me it's post viral fatigue! but I am a ex elite athlete and I know my body well, its really effecting my life! my symptoms change all the time but remain the same symptoms. its the internal shakes that scare me the most! does anyone know what this could be.....? I have not travelled in years and live in Australia.
    Anonymous 42789 Replies
    • December 1, 2007
    • 00:09 AM
    • 0
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  • BilharziaDid you go swimming in lake Malawi? or any fresh water lakes, rivers
    TerryG 120 Replies
    • December 3, 2007
    • 03:55 AM
    • 0
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  • Has anybody had any experience with Rickettsia?Hi I was diagnosed in Feb 2010 so can give you first hand experience if you are still interested. I have a severe bacterial infection - rickettsia coronii and coxiella burnetti - as a result of tick bite fever in 1995 which wasn't treated correctly.Battled for 16 years thinking I had multiple sclerosis, lupus or Lou Gerig's disease. Good site is http://chronicfatiguesyndrome.co.za.It came to a head in October 2009. I thought I had been bitten by spiders but it turns out it was a breakout of the bacteria from my body. My EXTREME fatigue could be likened to ME as that was also one of the possibilities way back in the late 90's.
    CityChive 2 Replies Flag this Response
  • Hi, I visited another private doctor and described my symptoms. He said he was not convinced on the ME theory becuase I had no fatigue, I was working fine full time, could do any exercise without feeling really bad the day after. I just didn't feel right. i clearly have ME. i agree that this original poster is very unlikely to have ME as with ME there WILL be POST EXCERTIONAL SYMPTOMS (not always fatigue, fatigue is just ONE of the symptoms those with ME may have.. sometimes it can cause extreme pain or sickness/malaise after exercise). To anyone diagnosed with ME or CFS...make sure you see someone who specialises in this disorder to make sure that is what they think you have. Many who dont know enough about the illness will use it as a "waste basket diagnoses". Thou ME symptoms varies in everyone and even in the same person.. there are some things about the illness which help to distinguish it.. Note that Rickettsia is all over the world as there are many different types of it. On the subject of Rickettsia and CFS/ME, my CFS/ME specialist tests his patients for Rickettsia (im in aust.) and found that i think it was around half of them have been exposed to Rickettsia (not me thou) and treatment of that will help or sometimes cure them. (so does this mean that those with ME are more susceptable to Rickettsia?? or does it mean lots of people are being wrongly diagnosed?) So do make sure you have been tested for Rickettsia if you have CFS.
    taniaaust1 2267 Replies Flag this Response
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  • Hi, Again a few more months passed, symptoms same. I visited another private doctor and described my symptoms. He said he was not convinced on the ME theory becuase I had no fatigue, I was working fine full time, could do any exercise without feeling really bad the day after. I just didn't feel right. i have ME and i agree that this original poster is extremely unlikely to have it. ME will cause POST EXCERTIONAL SYMPTOMS.. be aware not necessarily tiredness/exhausion (that is a bit of a very common misconception as many of us who do have ME sometimes have ME flare without that). ME has a huge range of symptoms and each flare/crash of it may be a bit different even in an individual.. sometimes ME flare may be predominantly pain or sickness/malaise (general feeling of unwellness). One thing stays the same thou.. one gets symptoms and isnt well after excertion. Anyone who has been diagnosed with CFS/ME should see someone who specialises in this disorder to make sure nothing has been missed and that your illness truely fits with ME. ME should never be a "waste basket diagnoses". Rickettsia should be ruled out in ME (Rickettsia of many different types is ALL over the world). My CFS/ME specialist tests his ME patients who others refer to him for Rickettsia and found that half of them have been exposed to this (im in Australia). Treatment of it has fixed so called ME patients.
    taniaaust1 2267 Replies Flag this Response
  • For what it's worth I have battled for many years with painful muscles, painful joints, sore eyes, blurred vision, ringing in my ears, fuzzy headaches, sore throat, loss of voice, swallowing difficulties, reflux, chest pains, weird stomach pains, pelvic pain, sore epididymis, raw anus and I’ve probably left some out because I also have major memory loss. Although I do have fatigue, pain is by far the worst symptom. Because of these symptoms, about 2 years ago I had to give up work. I live in South Africa and have visited dozens of different specialists and have been diagnosed at various times with fibromyalgia, CFS, ankylosing spondylitis and multiple sclerosis. Mostly these diagnoses were tentative because I didn’t fit neatly into any one box. My own opinion is that I have none of these diseases. Until 6 months ago the only positive test I had was elevated thyroid antibodies.Then 6 months ago I came into contact with a Dr Jadin who did blood tests and said I had rickettsia. Her solution is pulse antibiotic therapy. Now, here’s the good and bad news. First the bad. So far I have not improved one iota, though she did say that a few patients take a long time. She claims an average cure rate of 80% at an average cure time of 8 months. The good news is that I have now met many of her patients who are either vastly improved or even cured. One lady was in a wheelchair and now runs marathons. Another had lupus and is now completely cured. Another had rheumatoid arthritis and is now better. And so the list goes on. Interestingly about half the ones I have met are farmers plus a few vets. A niece of mine in Australia who suffered from ME was eventually diagnosed with rickettsial infection, went on the same antibiotic treatment and was cured in about 2 years. Here’s hoping I will be in the 80% group that gets cured. Hope this info helps and good luck to all my fellow sufferers.
    Anonymous 42789 Replies
    • November 19, 2010
    • 02:41 PM
    • 0
    Flag this Response
  • For what it's worth I have battled for many years with painful muscles, painful joints, sore eyes, blurred vision, ringing in my ears, fuzzy headaches, sore throat, loss of voice, swallowing difficulties, reflux, chest pains, weird stomach pains, pelvic pain, sore epididymis, raw anus and I’ve probably left some out because I also have major memory loss. Although I do have fatigue, pain is by far the worst symptom. Because of these symptoms, about 2 years ago I had to give up work. I live in South Africa and have visited dozens of different specialists and have been diagnosed at various times with fibromyalgia, CFS, ankylosing spondylitis and multiple sclerosis. Mostly these diagnoses were tentative because I didn’t fit neatly into any one box. My own opinion is that I have none of these diseases. Until 6 months ago the only positive test I had was elevated thyroid antibodies.Then 6 months ago I came into contact with a Dr Jadin who did blood tests and said I had rickettsia. Her solution is pulse antibiotic therapy. Now, here’s the good and bad news. First the bad. So far I have not improved one iota, though she did say that a few patients take a long time. She claims an average cure rate of 80% at an average cure time of 8 months. The good news is that I have now met many of her patients who are either vastly improved or even cured. One lady was in a wheelchair and now runs marathons. Another had lupus and is now completely cured. Another had rheumatoid arthritis and is now better. And so the list goes on. Interestingly about half the ones I have met are farmers plus a few vets. A niece of mine in Australia who suffered from ME was eventually diagnosed with rickettsial infection, went on the same antibiotic treatment and was cured in about 2 years. Here’s hoping I will be in the 80% group that gets cured. Hope this info helps and good luck to all my fellow sufferers.Hello I find your comments very interesting, I have had supposed CFS for 6 years and have seen many doctors and have lost faith in all of them! Can anyone tell me a name of a doctor in Australia, that can help when it comes to looking at alternative causes such as rickettsia? I have never even heard of this word until recently! Thankyou in advance
    Anonymous 42789 Replies Flag this Response
  • Hello I find your comments very interesting, I have had supposed CFS for 6 years and have seen many doctors and have lost faith in all of them! Can anyone tell me a name of a doctor in Australia, that can help when it comes to looking at alternative causes such as rickettsia? I have never even heard of this word until recently! Thankyou in advance hi there.. pity you didnt register in this site and have notification when someone responds here to your post as I doubt you are going to see my reply but here goes. You didnt say what state of Australia you are in but Dr John Graham in Sth Australia is a CFS specialist and he tests for Rickettsia and other things. There are quite a few different CFS specialists about Australia (I suggest thou avoiding Hickie and Lloyd).
    taniaaust1 2267 Replies Flag this Response
  • It is of my opinion (and Stanford School of Medicine joined me recently) that tick-borne diseases such Rickettsia, Borrelia (such as Lyme), bartonella (and others) may play a role in Chronic Fatigue Syndrome.http://chronicfatigue.stanford.edu/And of course there is a plethora of reactivated infections too (such as EBV, HHV-6, etc) that can reactivate and wreak havoc as well.Certain ME/CFS specialists are getting fairly good at diagnosing the condition, but as you probably already know, nobody really knows how to effectively treat the condition.I am really seeing an enormous ME/CFS epidemic happening right before my eyes. You may just have a serious case of Rickettsia, but that does not rule out ME/CFS even if the government guidelines tell you so. The specialists know far more than government bureaucracies.I personally have Lyme, bartonella, possible Rickettsia (IgG antibodies) and CFS (very thoroughly tested and I lived at ground zero of the first major outbreak). It's a wicked combo, and I wouldn't wish it upon my worse enemy.
    Anonymous 42789 Replies Flag this Response
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