In Regard To Antibiotic ?...is this idea to wacky?

[juniemarie]

In my never ending effort to live within my microscopic budget, and thinking about all the money wasted on trying this test or that supplement to find something that will lead me to feeling better, I was thinking about how in the 80's when I had giardia the Dr told me the test for it was not reliable and suggested that since I had all the symptoms, and other possible causes had been ruled out, why not just go ahead and treat me for it. So we did, and I got better.
Recently my Dr said she wanted be to have blood test for mycoplasma & chlamydia pneumonia as many PWCFS have them and I have symptoms that make her believe I have them. The problem is I can not afford the PCR test, which leaves the test thats not reliable/sensitive and often results in false negative, AND I cant really afford that one either..........and since it seems like there is a lot of overlap with the treatment of the various things that invade our bodies, why not just treat for the m.&c. pneumonia? My thinking is if I get a negative we will then be faced with the same question......should we go ahead and treat it and see if I get better?

 

[glenp]

I agree Junie

I believe we have a lot of "stuff" which we may never test possitive for. I am willing to try anything that won't harm me further. I always read up on the side affects first. I am lucky to have a doctor that will go along with something that i might want to try -- if he disagrees he will say "ok you're on your own with thiis one" but hasn't refused me so far, but then I am one to err on the side of caution so havent asked for too much

glen

 

[Victoria]

I am with Glenp on this one too,

I am in the same boat at this very moment. Going back to the Dr this afternoon (to get results of in depth thyroid tests).

I have to pay for one of the thyroid tests (which is not covered by Medicare), but it's the one not usually done by Dr's & Endocrinologists.

I had given up on paying for tests & treatments, but have had a hoarse voice for 2 months now & am getting frustrated. Since I have 99% of hypothyroid common symptoms (& I even have the uncommon symptoms - the hoarse voice being the final straw). I have explored all the allergy possibilities.

I say, if it doesn't hurt or make things worse, give the treatment a go (despite the fact you can't afford the tests which may, or may not support the suggested diagnosis).

I have also had positive tests for various anomalies in my body functions in past years (which have magically disappeared with no treatment at all), hence my theory, that the body can often heal itself, given the right conditions & immune function support).

 

[pine108kell]

I would spare the test if you have little money and just treat. If you have a chronic bacterial infection, I think you will get a herxheimer reaction from taking an antibiotic. Doxycycline is cheap. Taking it for a month is probably a better "test" than the PCR and a hundred times cheaper. The only problem is that treating these chronic infections with antibiotics, such as mycoplasma, lyme etc., does not always lead to signficant improvement.

 

[Athene]

I did the same as you - treatment for Giardiasis based on symptoms, and it made me MUCH better.

Just a few thoughts...

Even if you could afford the test, your lack of adequate immune system could easily make it turn out negative even if you do have the infection. I tested negative for Chlam Pneumonia twice before testing a very strong positive with another lab. I have tested negative on loads of tests and then eventually tested positive.

What this means, though, is that you may need antibiotics for far longer than a person with a fully functioning immune system. You'll need a clever doc to figure out how much. My doc says he has given me enough abx to easily knock out the chlam pneumonia but I still test positive.

It could also be worth discussing some preventative treatment for candida as antibiotics can easily bring that on.

 

[juniemarie]

Thank you guys for your input. Its a mute point right now, as my doc wont treat without a positive test result. So I spend the last of my money this month on a test thats not very reliable, it comes back negative, and I get no treatment. So frustrating these medical hoops and miles of nonsense and red tape. In the meantime I have loads of symptoms that I just will have to live with.

 

[Athene]

I would post an appeal here on PR to people in your area, to try to find lab that is known to be a very reliable one. Also, if you find a good lab, call them to speak to a technician to find out about any factors that could affect the reliability of the test. I have done this for several tests in the past and found things out that doctors never bothered saying to me!
Also for Chlamydia pneumonia you could look into getting nasal swab. I think if you have active/chronic sinusitis this could potentially be easier/cheaper? Worth investigating.

 

[heapsreal]

i think testing for these chronic bacterial infections arent accurate. I agree with others and do a trial of doxycyline, but beware of herx/die off reactions, u might at first have days off the meds here and there so u dont feel terrible all the time. i got to the stage that i could tolerate about 2 days worth then i would feel awful, so i would take every third day off to try an avoid this. it wasnt a cure but it did help my cfs, i think alot of us have multiple infections and its a trial and error finding them. One thing to think of if u go this root is to be weary of possible fungal/yeast infections from antibiotics, its a good idea to use nystatin along with antibiotics and supplement with probiotics at night if taking abx in morning and vice versa

 

[juniemarie]

Athene I think even when this test is done exactly right its not considered sensitive enough to be reliable. I guess I will go and shell out the $$ and have it done and hope I luck out and get an accurate result. Its the never ending CFS crap shoot all of us deal with. Wish docs had a more compassionate and progressive approach to dealing with issues like this. In other words the ability to take into consideration 1.test is unreliable 2. patient cant afford the more reliable test 3 this illness takes a more creative approach,"ability to think outside the box" 4. patient is sick as a dog and needs some kind of treatment 5. lets just go ahead and treat the symptoms and see if she feels better 5. thats a better approach than allowing the patient to go on with no treatment at all. 6. if the medication does not help we stop the meds, put our heads together and see what should be tried next.

 

[nventor]

Hence, why you take all the information that physicians can provide, ignore the retoric and BS( its all in your head, Bla, Bla, Bla,) read what has worked for others, determine the safer treatment to employ, hopefully run it by a doc that is open to try something, and will monitor your general health.

I found for instance that Imunovir, I have to purchase overseas, against the law? so what, I think it has really helped me which is more than I can say for most of the docs I've seen have done.

Desperate times call for desperate measures.

Regards,
Roger

 

[juniemarie]

nventor Exactly! Very well put. If I thought I could get a safe/reliable antibiotic any other way, thats exactly what I would do. While I have ordered some types of meds from India and Mexico, they were not as serious as an antibiotic, plus I had had many testimonials from other people as to the reliability of the source as well as the effectiveness of the medication coming from that source.
We who suffer with CFS are our own best Dr's, that is in the absence of a qualified physician ...........and I dont just mean a degree hanging on the wall. Most of the people on this forum are much smarter about CFS and the incredibly serpentine paths and bunny trials that accompany it than most docs.