Has anyone been tested for these infections?
 

Hi there,

I am curious about this because a nurse has asked me if I've been tested for any of this, and I don't think I have been. Has anyone?

Lyme Disease: http://www.lymeinfo.net/coinfectionarticle.html
Babesiosis: http://en.wikipedia.org/wiki/Babesiosis
Ehrlichiosis: http://en.wikipedia.org/wiki/Ehrlichiosis
Anaplasmosis: http://en.wikipedia.org/wiki/Anaplasmosis
Rocky Mountain spotted fever: http://en.wikipedia.org/wiki/Rocky_M..._spotted_fever

I have some symptoms of the things they describe. I don't think I have been tested for any of this but I may be wrong and nobody told me.

I am curious if these are standard tests that other people have had?

Thanks,
Deb

Hi Lbrown,
I haven't been tested for Lyme but I have had the infection twice. It is a reactive test as the others may be as well. This means that you could have Lyme Disease but the test wouldn't necessarily show a positive result. I had all the symptoms except for the bullseye which is what most people look for. Terrible joint pain, fatigue, wild dreams, would wake up in the morning and feel like I had been hit over the head with a 2x4 - terrible headaches. Luckily my Dr.'s wife had been infected as had his nurse so he was on top of things. He treated me with two weeks of Doxycycline and all symptoms went away - actually after just 3 days - which is exactly how long he said it would take for me to feel better. As devastating as these infections can be - if there is any chance you could be infected - I would opt for the treatment just to make sure.
I hope this information helps.
Best wishes,
Sally

John was tested, years after treatment, for lyme but not the others that we know of.

I was told there would be a chance for a false negative. I'm going to ask my GP, because he would be more up on this stuff than the hematologists. I am pretty sure there is some connection to what I have to an infectious cause. The nurse said 20 yrs ago they definitely would not have been testing for this stuff, and it can hang around for decades.

Deb

hi Deb,

When I was first diagnosed with SAA, I was tested for all of those by an infectious disease doctor, but I think it was more that they were trying to find a cause for the AA, also to see if I had those, too. I had just been through treatment for Lyme disease. Also, apparently, a lot of the tick-borne diseases, as viruses, can trigger an aplastic 'crisis', which then resolves itself. I tested negative for all but the Lyme, and it was eventually decided that the Lyme disease was not the cause of my AA, but was coincidental.

Good luck,

Gloria

Yes the test is not definitive and false positives are a problem. Most who get bit by a tic like Sally, will get treated right away to deal with it. Testing is not needed in those cases. Antibody levels won't show up for 2 -3 weeks is how I understand it and remain elevated if the disease is still active. Clinical symptoms and history must be considered when making a diagnosis with lymes especially in cases that have on for a long time undiagnosed. In other words, don't treat just based on the test if you haven't been bitten.

Dr. Maciejewski has a research project going on that is identifying various viruses that people may have had that might cause these illnesses. I think he has something like 5,000 possible viruses he is comparing.

I just came across this on PubMed:

http://www.ncbi.nlm.nih.gov/pubmed/21297542

Lemierre syndrome caused by group C streptococci and associated with red cell aplasia and immune thrombocytopenia.

I didn't know what Lemierre syndrome was & had to look it up. 20 yrs ago when I first got sick, I had almost all those symptoms. I did not have any blood clots but that's the only symptom I didn't have and maybe because I had very low platelets, and also when my fever went to 104 I got started on antibiotics right away. But I had recurrences of the extreme sore throat, fever and swollen neck glands - they thought I had mono but I didn't. I was in hospital for 2 months with a fever of 106.2 and on IV vancomycin and other abx.

If this is the case though, I am on the right track with the treatment I have chosen.

Hmmmm.

Deb

Here is the reference to Dr. Maciejewski's research project I referenced above. Note: The concept can be applied to other autoimmune diseases.

http://www.makeithappen4bmd.org/clevelandclinicchip

Interesting. Thanks for the link.

The theory I'm currently following is that there isn't just one pathogen that causes these diseases, that it is a mix, and everyone will have a different mix. They also believe it is pathogenic L-form bacteria causing a disregulation of the immune system. They live inside cells, are smaller than viruses, and are extremely difficult to culture.

Definitely the only way to find whatever these things are is through DNA testing to see what's really there. It'll be interesting to see what they find. If I was to guess right now, I would say they won't find 1 common denominator across all cases.

Deb

I have to agree....they won't find one. I think it goes deeper and is multi-factoral.

Ironically, I was just thinking about the possible Lyme disease connection just the other day, when I pulled of the 2nd deer tick I found on me this season. It is not even a bad tick year...there were years I picked them off daily! But they are everywhere--in your yard, fields, woods, etc...
Not every tick has Lyme, not every symptom includes a bullseye. Imagine if you had one in the back of your hairline...you'd never know it was there or see any type of mark.
I have had Lyme at least 3 times...once the diagnosis took forever. I thought I had Lyme when I had fatigue symptoms just before I got diagnosed in 2009 and was taking Doxycycline. Then I had vertigo that prompted my blood test. Whoops! Not Lyme, but AML! I mentioned to to Dr's at Thos Jeff UH but they didn't even acknowledge any possible connection.
I do agree, everyone's chemical makeup is different, and we all have our own Acchilles heel........but I think there is something common that is the cause for all of these blood disorders that remain undiscovered... seems like everyone I talk to knows someone close to them that has a blood issue of some sort!

And if blood disorders are part of the bigger picture of autoimmune disease - think how many people you must know with at least one. Chronic disease is so common these days. Three people in my family had sarcoidosis.

Just getting a doctor to recognize that lyme is a disease can be a feat in itself. I have no memory of ever being bitten by a tick, but they could be easy to miss like you say. I have also been outdoors a lot horseback riding over the years and maybe mosquitoes carry disease. But then not every tick carries lyme, etc. That's why I think they won't find 1 single cause for these diseases, because if it was that simple, they would have figured it out by now.

Sometimes I think the specialists are just too specialized to see the big picture.

Deb

As long as you treat just the disease, which, I believe is just the symptom(s) of some other, underlying imbalance, you will never get at the root cause. And as much as we all would like to find some bio-chemical cause, you cannot dismiss emotional/mental, energetic and spiritual aspects of a person in the disease process. Like you said Cheri...the imbalance shows up where there's a weakness that's either inherited or acquired. We are all born with an innate constitution...some strong who can withstand a lot and other not so strong. So the same trigger for you shows up in your BM, for someone else, it's MS.

We are a pretty amazing organism. You wonder how we live as long as we do with all those hazards lurking out there :).

Marlene I couldn't agree more. Well said.

Deb

Hi,

You know, the weird thing is we don't have Lyme disease in Australia but in 1988 I was bitten by a tick and got a rash about 6 centimetres in diameter around the site, A week or two later (I don't remember exactly) I became very dizzy at work and felt as if the floor was moving. This lasted for weeks and I felt very unwell, I also had a rash over my trunk that came and went and various neuro type symptoms with paraesthesia, tics (no pun intended) etc. My GP at the time ordered numerous tests including one for Lyme disease. To this day I don't know why he ordered it when I hadn't been out of Australia for the previous 8 years and couldn't have been exposed to it. Oddly enough it came back positive and I had to have it repeated. It came back positive again. The laboratory and my GP assumed it was a false positive and dismissed the results. I was never treated for it.

Regards

I think that's why it's so difficult to properly diagnose Lyme's disease. From what I understand, even if you test negative, they still take in clinical symptoms and history before ruling it out. Both false and positive results are inconclusive and treating based solely on the test is not done. Of course if you were bit and had the rash, they usually treat right away and don't even test since the anti-bodies won't show up for about one month. This is also true for most auto-immune testing. When I dealing some issues in the 90's, they ran a bunch of blood work and one of the tests was looking for syphilis anti-bodies...They were looking for a false-positive to confirm an autoimmune disease. Since it came back negative, they kept looking. This also happens with the HIV virus. There are other viruses that cross react.

Do you think the tic that got you was carrying some other infectious disease? I know we have few different ones here in the states.

Lyme movie....
 

Just came across this and thought how timely.

http://www.underourskin.com/background

From the site:
UNDER OUR SKIN is a gripping and often terrifying look not only at the science and politics of the disease, but also the personal stories of those whose lives have been affected and nearly destroyed. From a few brave doctors who risk their medical licenses, to patients who once led active lives but now can barely walk, the film uncovers a hidden world that will alarm viewers. While exposing a broken health care and medical research system, the film also gives voice to those who believe that instead of a crisis, Lyme is simply a "disease du jour," over diagnosed and contributing to another crisis: the looming resistance of microbes and ineffectiveness of antibiotics. As suspenseful and hair-raising as any Hollywood thriller, UNDER OUR SKIN is sure to get under yours.

I didn't run the clips but it looks like some PBS stations may show it this month.

Success getting tested?
 

Hi Deb

Did you have any luck being tested for:

Lyme Disease: http://www.lymeinfo.net/coinfectionarticle.html
Babesiosis: http://en.wikipedia.org/wiki/Babesiosis
Ehrlichiosis: http://en.wikipedia.org/wiki/Ehrlichiosis
Anaplasmosis: http://en.wikipedia.org/wiki/Anaplasmosis
Rocky Mountain spotted fever: http://en.wikipedia.org/wiki/Rocky_M..._spotted_fever

Newby,

Terry, Victoria BC

Hi Terry,

No, I haven't bothered asking. I've heard the tests are not always reliable anyway.

I was diagnosed with PRCA as well, although another doctor said it was moderate aplastic anemia while yet another one told me my bone marrow was normal and it is my immune system causing the problem. I tried several conventional treatments and none worked but they all made me feel worse. I am now on the Marshall Protocol and feeling a lot better. Being realistic, I still don't know if it will help my counts but I am hopeful it will over time. My WBC last time was up to 1.0, which is the highest since last June after I quit the tacrolimus. I am riding my horse, going to agility with my dog, and working full time. I don't get sick very often. I am now keeping my HGB level slightly higher and feeling better. I get a transfusion every 2 weeks.

How are you doing?

Deb