finally a positive test result :rickettsia

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Misdiagnosed, Jan 17, 2004.

  1. Misdiagnosed

    Misdiagnosed New Member

    Hi there

    Thought I'd just update you all; I have posted in the past with similar symptoms to many of you and like many of you always had relatively normal test results - nothing really of note or specifically treatable. Told my symptoms were largely in my head, when I knew damned well they weren't - I could feel something was in me.

    Started going for hyperbaric oxygen here in Melbourne last Sept. and was also started on empirical antibiotic treatment with doxycycline for a suspected infection. Things have slowly started changing for the better for the first time in 3 years. Less nervous system symptoms, muscles and tendons softening etc.

    Just before Xmas i visited an Infectious Diseases specialiist who has a reputation for helping people with unusual illnesses. Got my bloods back this week and they've found Rickettsia, more than one strain. I can't actually see him till Feb so don;t know if he will alter the doxy 200mgs per day I'm already on but I've found a UK CFS site that has stories posted by CFS sufferes who have found recently they also have Rickettsia. There's a whole group of them who are sending their bloods to South Africa as proper testing is not available in the UK.
    And so far lots of them are coming back positive -it appears to be the missing link in their search for what has been wrong with them. There's a couple of stories psoted of complete recoveries after several years of illness. I'm hopeful, now that I have specific diagnosis, I may be able to recover too.

    The treatment protocol by the Rickettsia expert in South Africa is monthly high dose pulsed tetracyclines together with either qunialones, macrolides or metronidazole. Treatment usually takes anywhere form 3 months to 2 years. I understand that Rickettsia can live dormant in myelin tissue for years and a traumatic event, illness, stress or another initiating trigger causes it cascade into the blood stream and then the problems begin.

    In my research I've discovered the people who treat chronic illness conditions, (rheumatism, MS, CFS, Lyme, Gulf War etc), with antibioticsare seem to using many of the same drugs; although in different dosing regimes of either continuous, pulsed, low dose, high dose and/or specific drug combinations. Seems to me all these things are either bacterial or viral in origin and its time mainstream medicine took note of the successes that are happening around the world and do comprehensive testing at the outset.

    Worth following up with your doctor if you haven't already been tested.
    I'll keep you posted on what changes if any are made to my drug treatment and how my symptoms go.

    Wellness wishes to everyone
    Kind Regards
    Gill

  2. ANNXYZ

    ANNXYZ New Member

    at least you have an answer. I felt ENORMOUS relief when I got the results of my PCR tests even though I had many pathogens ( more than I expected) . I knew I was very ill , and fortunately my neurologist and infectious disease docs were supportive and wanted to help me and NEVER dismissed my reports or complaints .
    Hope you get better soon!
    PS This reminds me of a story . My neighbor is a sweet 81 year old lady who has been a widow for 30 yrs and still cries and talks about her beloved "Tommy" . One week Tommy went for a checkup to a prominent ATlanta DR. and was told he was in perfect health . Literally a week later , the children find him "sleeping" and can't wake him up. He died in his sleep of a heart attack at the age of 48 .
    We live in these bodies and are wise to listen to our gut feelings when we have a nagging sense that something is not right even though the tests show " nothing" . We have to persist and keep searching , even if we are viewed as eccentrics ( or worse).
  3. Wombat37

    Wombat37 New Member

    Thanks for sharing your experience. I see you live in Australia as I do, Brisbane actually, and was wondering if you might have a contact for this infectious disease specialist? I'm new to this board so I'm also interested in what sort of symptoms you were experiencing? A brief run down would be great. And lastly was the infection picked up by PCR testing?

    I've been ill with what may be CFS and it's associated symptoms for over 10 years. Became ill after a trip to India. I had numerous vaccinations before I went and then ws quite sick when I was over there with what I thought was Delhi Belly but later I came to realise was something that had taken up residence in my gut and IBS followed. My fatigue is the worst problem. Also get anxious and lightheaded and feel off balance and nausea. Could go on and on about the symptoms.

    Anyway glad for you that you've finally found something that is definitive and may have you on the road to recovery. All the best.

    Wombat
  4. Misdiagnosed

    Misdiagnosed New Member

    Here's an abridged version of major symptoms; have had a long history of ibs & constipation that was irritating more than anything, then after onset of acute bout of constipation in 2001 developed muscle problems (tightening and stiffness), stiff hard neck, swollen lymphs, sore throat and gunk on lungs, furry tongue, skin rash on back, sleep problems (being jerked awake), urinary frquency,
    nervous system symptoms came later with muscle twitching and had 2 tonic attacks prior to getting any treatment, hands and feet started to get stiff then arthritis came with sore joints, hips and knuckles mainly.

    If you want more specific info, please email me direct and I'll give you the name of the infectious diseases specialist etc. Realise I can't give website addresses or names so is a bit vague.

    Regards
    Gill
    Regards
    Gill
  5. sydneysider

    sydneysider Member

    like the name of the infectious diseases doc that you're seeing. I'll email you to ask, however, I think it's OK to give names here, as I know that other doctors names have been given (as recommendations) in the past. I think it's just the URLs, and maybe email addresses that we're not supposed to give.

    I've heard of people who found out that they had rickettsia infection, and not FM. They were able to get treated, and got well again. HOW WANDERFUL!!

    Please post again if you have success, or,if you have any other useful info.

    All the best
    Robyn
  6. Misdiagnosed

    Misdiagnosed New Member

    Hi fellow Aussies

    The name of the Infectious Diseases specialist is Dr Andrew Fuller at the Alfred Hospital in Melbourne.

    Strangely enough, I was given his name by the first Infectious Diseases specialist I'd seen, when I rang him to ask for help. My cats had gotten ill and were showing similar symptoms to me after having their yearly vaccination and worming. My vet suggested I give him a call to get some tests done. (On my first visit to him, he'd felt my glands and told me I didn't have anything wrong with me!!) On the phone he remembered me as the one with the 'anxiety problems'. He then told me didn't believe in zoonotic illness, so when I challenged him with, 'so you're not willing to help me' - he offered Dr Fuller's name!! Can you believe that, they both have the same title; one believes in zoonotic illness and the other doesn't. What are they teaching at medical school. anyway. In hindsight, I'm really glad he did give me Dr Fuller's name - he took my symptoms seriously and ran tests straight away; and he and my vet have been conversing.

    So keep searching if you're not getting treated right.

    Regards
    Gill
  7. Aussie_21

    Aussie_21 New Member

    Hi there. I am an Aussie 2! I tested positive for Rickettsia. I see a CFS specialist in Camberwell Melbourne. Dr. Geoffery Kemp he also is a GP. He is wonderfull. I drive 4 hours just to see him. You don't need a referal...
    Cheers
  8. victoria

    victoria New Member

    would you know how this is different from Rocky Mtn Spotted Fever? (besides the fact that it is an acute disease) -

    I'm wondering if one could get another variation of rickettsia, like you have, if one has had rocky mtn spotted fever...

    seems like it would be possible as I know with the Lyme spirochete over 300 varieties are known worldwide... over 100 in the U.S. alone. And if one has lyme, having a co-infection like bartonella or babeosis is more the rule than the exception.

    I'll have to do some research on this one - my daughter had Rocky Mtn when 9, and while she doesn't have the typical symptoms so many lymies have or even your symptoms, I wonder, as she has had a few other problems.

    By the way, it's okay to name organizations, doctors names, universities, and give phone numbers and street addresses of these places, etc., just not give the actual url unless it is a .org or .edu type site (ie, non-commercial). Also not supposed to give email addresses...

    Thanks,
    Victoria


    <br>[<i>This Message was Edited on 07/05/2006</i>]
  9. Misdiagnosed

    Misdiagnosed New Member

    Hi Victoria

    A lot of water has passed under the bridge since my original post, but they but they did find 8 varieties of rickettsia, including Rocky Mountin Spotted Fever. Said it was an unusual result.

    I stayed on daily dosing of doxy and rulide and pulsed 7 days each month with metronidazle. After one year I was starting to feel better; each month brought improvements. Then I switched to pulsed dosing and was taken off doxy - I've not been able to get back to where I was physically. I went to the UK for six months and had to get new doctor when I came back to Oz; she thinks I have lupus and took me of the doxy. Big mistake in my opinion but doxy no longer does what it did (have tried adding it in a couple of times since). I'm currently on pulsed abx M, W F and it is holding but not improving. Still have very bad problems with connective tissue, swelling, inflamed throat, lungs etc.

    Am at back at work 3 days a week which is a miracle to where I was before treatment so I'm thankful for that but still want more resolution. Am seriously thinking of the Marshall Protocol as my next step. I have classic Vit D dysregulation, which can be tested, and is an indicator of Th1 diseases. According to them it's not important what bacteria you have and I'd have to agree now. What you're after is for the immune system to start working again and their protocol seems to be good at sorting all that out.

    Is your daughter suffering much; do you see signs of arthritis etc? Has she received any treatment?

    regards
    Gill
    <br>[<i>This Message was Edited on 07/06/2006</i>]
  10. victoria

    victoria New Member

    I am actually doing the marshall protocol myself and have experienced some significant improvements. I have no idea what I have as I didn't spend the money on testing after reading how unreliable blood tests are for these stealth pathogens...

    but subsequently realized the symptoms my son wre experiencing indicated lyme and his test was positive according to CDC standards even. He probably has co-infections that they are trying treatment for as progress has been slow.

    My daughter doesn't have any bad physical symptoms but does experience re-occuring problems with anxiety/depression since she was about 13 that interferes with her life at times - this is the same way my son started, which is why I am suspicious... I know in some people these stealth bacteria etc can take years to manifest -

    plus the fact that everything I read and the doctors that are treating my son say if she got Rocky Mtn, it is very likely she picked up some other co-infection that may or may not have been taken care of by the abx she took for the Rocky Mtn.

    I was doing some reading last night, it sounds like you have 'Eastern rickettsia"? which is in Australia, Asia, Mid-East, and parts of Europe... and it sounds like there are lots of tick born diseases that are so hard to find/diagnose.

    Keep us posted on your progress... I wonder how rare some of these things really are or if it is just hard to diagnose.

    all the best,
    Victoria







  11. Misdiagnosed

    Misdiagnosed New Member

    Hi Victoria

    So you're on the MP; wow; what's it like and how long have you been doing it - difficult to do? I'm scared of not being able to do the light restrictions especially because of working. how long have you been on it and what symptoms did you have prior to that? Had you tried any other treatments before deciding to do the MP; and if so, how much symptom resolution did you get and has the MP taken you further?

    Would it not be a good idea to do your children's D metabolites to see if the MP could work for them? Like you say, these cwd bacteria seem to take a long time to cause big problems, but catching it early would be really good. Is your son improving on the Lyme treatment? Re your daughter's anxiety; i developed a lot of that too as I got iller and my doc. says the bugs were all in my nervous system. A spell on Zithromax seemed to calm my nervous system right down which made handling the symptoms a lot easier.

    I agree I think cwd bacteria is really common and probably the cause of most chronic illness - just mainstream medicine doesn't believe in it. Will take another 15 years before treatment is commonplace.

    all the best
    regards
    Gill
  12. Misdiagnosed

    Misdiagnosed New Member

    Hi Sea-dove

    Yes, I was tested for rickettsia and they found an alarming 8 strains; however I think I've also got chlamydia pneumonia and probably other stuff too. From what I've read lots of the population have these bugs but it takes years to manifest and in some instances a traumatic event (physical or emotional)can trigger the decline where the immune system loses control.

    My thinking now is in line with the Marshall Protocol - that it doesn't really matter identifying what bugs you have, as most likely there are lots of others that have not been identified. The main thing is to reduce the inflammation and turn on innate immunity so the abx can actually do the work they're supposed to. With other abx protocols the constant inflammatory response impedes the action of the abx so while things might get better, they never seem to fully resolve.

    I've also read the webpage with the 'scary' possible complications from using the Marshall Protocol, but am not convinced of their validity. It's up to the individual to evaluate the MP and I think the best way is to regularly read the posts at the MP website and see how everyone's doing. So far, I think the MP looks to be the best treatment available if you want to get cured.

    I'm yet to start it because of issues in my current house regarding light restrictions but hope to start it early next year.

    kind regards
    Gill
  13. helloharry

    helloharry New Member

    Dear Gill,&lt;BR&gt;
    &lt;BR&gt;
    I have suffered CFS for 15 years (I'm 30) and by divine intervention went to see Dr Cecile Jadin in South Africa who found 3 strains of of rickettsia. Is this who you are referring to? I would love to know if you are well and what you went through.&lt;BR&gt;
    &lt;BR&gt;
    So hope you are well now.&lt;BR&gt;
    &lt;BR&gt;
    Harriet
  14. Mikie

    Mikie Moderator

    I do not believe infections &quot;cause&quot; our illnesses but I do believe our illnesses cause us to be vulnerable to many infections which can trigger our illnesses full blown. I also do not believe we can heal unless we get our infections under control. One of the biggest problems we have is finding docs who understand this and insurance companies which are willing to pay for testing.&lt;BR&gt;
    &lt;BR&gt;
    When we were kids in CO, we went in to the doc for our &quot;tick shots&quot; every spring. I have no idea what was in them or how they worked to keep us from getting tick fever. As far as I know, none of us got sick from ticks.&lt;BR&gt;
    &lt;BR&gt;
    For me, it was a mycoplasma infection which triggered my CFIDS/ME full blown in 1990. I will always believe it was Gulf War Illness which I had but I also believe that GWI and CFIDS/ME are one and the same. It was 2 1/2 yrs. of Doxycycline which drove the infection into latency. &lt;BR&gt;
    &lt;BR&gt;
    It was discovered that I had some kind of chronic viral infection, likely in the Herpes family and likely EBV, CMV or HHV-6. It took 1 1/2 yrs. on and AV to drive that infection into latency.&lt;BR&gt;
    &lt;BR&gt;
    I do not think clearing up our infections is a cure for what ails us but I also don't believe we can heal as long as infections set up permanent shop in our bodies. They produce fibrin in the blood to keep us in a low-oxygen state in our blood and this, in itself, can keep us sick. Heparin, or better yet, Nattokinase, an OTC enzyme, will break up the fibrin/platelet clots where the pathogens hide out from our immune systems. In fact, by the time the infections take over, our immune systems probably don't even recognize them as enemies. This is where transfer factors can help out. They are like little oral vaccines which wake up our immune systems to the pathogens.&lt;BR&gt;
    &lt;BR&gt;
    I've always looked at my illnesses like a general looks at war--fight them on as many fronts as it takes. People try one thing and get discouraged. It often takes a lot more than that. Finding a chronic bacterial infection and treating it is a big step forward. Good luck.&lt;BR&gt;
    &lt;BR&gt;
    Love, Mikie
  15. Hi everyone,

    This is one of the most informative forums/websites on this topic I have read so far, so thanks to all who posted! I am South African, and have also been diagnosed with Rickettsia (and a few other bugs) by Dr Gerin (the husband of Dr Cecile Jadin).

    Gill, how are you feeling now, after all these years following your first post in 2004? It is my understanding that I will never completely get rid of Rickettsia, and that it might recur quite frequently. Is this the case with you as well? How often do you still need to take meds? I have a colleague who has quite a bad case of Rickettsia, and he needs the pulsed antibiotics at least four times a year, with every turn of the season. That is quite a lot, in my opinion, and I am a bit scared of taking so much antibiotics....

    I think these types of infections are much more common than we realize, and is a basis for a variety of symptoms that can manifest and other illnesses that can take hold of your body. I think so many people are suffering from it these days because of our modern way of living - way too much stress, way too much sugary, refined foods, and the environment around us and everything in it is becoming more and more toxic.

    By the way, I don't know whether you guys are aware, but Dr Cecile Jadin wrote a book named "A disease called fatigue". It is quite a fascinating read.

    Lulu