husband PCR test POSITIVE!!! Not me yet!??

Discussion in 'Fibromyalgia Main Forum' started by crissyfamily, Aug 7, 2003.

  1. crissyfamily

    crissyfamily New Member

    husband finally had a positive reading on his 2nd PCR test.... showed chlamydia pneumonie (sp?)

    ...and my 2nd PCR test still came back neg. Doc asked MD Labs why and they said could be a hormone thing so i have to wait this time until day 3-6 of my period to retake the 3rd test (getting expensive) ...2nd test was done at 4 days prior to start of period on July 16th.

    Doc wants my husband to start transfer factor specially made for chlamydia (i'll get name later if anyone wants it) and start gradually 1 every 3 days until he is up to 1 a day (take at night). Then at that time she wants to put him on levequin (newer antiobotic - sorry i don't know how to spell yet) and take for 2 weeks... She talked to the lab tech at MD Labs and he said that with the abx and transfer factor that should do the job.....(hmmmm - seems to short according to what i have read). She wants to keep him on cipro until starts the levequin and then stop cipro....

    anyway doc won't put me on anything until retest and then she said i could start the same protocol as my husband.....she sees no harm in putting our teen daughters on it also once I am tested.....

    for those who don't recall, our whole family came down with this DD last spring and summer and girls are pretty low on symptoms right now, but husband has bad symptoms and I am worse with bad symptoms plus lots of neurological problems with peripheral neuropathy and tremors (don't show on outside but inside whole body moves - doc gave me a name for it and said it wasn't tremors, but i failed to write it down and can't recall), etc....

    so our doc, she was happy to finally find one thing and she still wants us to stay on heparin which i think we are starting week seven....don't notice anything yet with the heparin except i go days where i can hardly get up still so tired...but doc said to take less gaba and to stop the tylonol pm or at least 1 every other day.....(yes, i finally can sleep, but i can't wake up - lol) husband quit taking heparin faithfully last week because got tired of sticking himself and the doc got on him to get back on schedule... he did....

    my youngest teen daugher is starting to get bad pms and doubled over in severe pain today and cried hysterically from pain for about an hour (put hot wash cloths on her stomach which helped) and has lots of heavy flow lately....called doc and waiting to find out what now??!!! She'd better get back with me tomorrow - didn't today.... Scary...i was hoping we somehow could make them well before they got worse since we caught it soon...but its not to be i guess...breaks my heart!!!

    well, i'll post again when something happens again....

    p.s. we are very disallusioned with this all (we've spent about $70,000+ so far since last summmer and even went to mayo) and i asked the doc if in talking to the 3 labs and dif. doctors she talked with last week (think 1 was dr. berg, 1 lab tech at mdl and 1 other doc) if they ever saw anyone get better and get rid of this stuff and she said "oh yes"! Hmmmmmm, well it did give me just a little tad bit of hope - and she said that she remains optimistic...(i bet, we pay her a fortune - 7 of my family go to her for appt. and vitamins, probiotics, transfer factor...and on and on)...

    well.... I need a big or little or even teeny tiny boost if anyone has any to share....i promise i'll give them all back when needed....

    take care my friends....crissy
  2. coping1961

    coping1961 New Member

    wish your family much luck.
  3. Mikie

    Mikie Moderator

    Best of luck for your whole family. Please keep us updated on your progress.

    Love, Mikie
  4. crissyfamily

    crissyfamily New Member

    thanks for your prayers and your support...Thanks for help with transfer c and the abx and heparin advice.....can use all the help i can get...

    i know it is hard enough to deal with yourself when ill, but when your whole family is ill like some of us on this board, it is really really tough....and then i know we have passed it along to others and even the family pet so we try to stay away from people which makes it even harder....we don't want to give this DD to anyone else...

    take care and thanks again

    [This Message was Edited on 08/08/2003]
  5. kgg

    kgg New Member

    That's unbelievable! So glad, they have been able to find out what is going on. It must be so hard to have the entire family sick.

    If your daughter can tolerate it, try alieve for her cramps. It was a miracle work for my cramps.

    Praying for a fast recovery for all. -Karen
  6. crissyfamily

    crissyfamily New Member

    thank you for your support for my family...

    i'll try aleve for my daugher

    take care of yourself..
    thanks so much crissy
    [This Message was Edited on 08/08/2003]
  7. AnnetteP

    AnnetteP New Member

    Like your husband I was tested and found to have c. pneumoniae. Unless its in the really late stages, it usually produces no noticeable symptoms. I think the only thing that validated my diagnosis was an elevated cardio crp, indicative of infection.

    I say all this, because its likely all his troubles don't stem from just this problem. I feel absolutely terrific, even though my dr. hasn't aggressively attacked the mycoplasma (she's afraid to reactivate my IBS which is finally non-existant). So, please don't just stop at this test (I'm not sure about what all you have tested for and are taking).

    Now for you daughter. That really touched my heart, because I have been a major PMS sufferer and cramper since day one (and I'm 39 now), plus have had extremely heavy bleeding for about the last 7 years. I finally got much relief with the heavy flow and PMS thanks to my current dr.; the cramping, on the other hand, continues to be a big problem.

    For the PMS the two things targeted to this are: P-5-P and Prometrium. P-5-P, aka pyridoxal-5-phosphate, is a highly available form of B6 and doesn't have to be broken down in the liver, so you can take lots more of this form than you can of other forms of B6; the other forms, if taken in too high doses, can be toxic. I take 200 mgs. a day, as well as Prometrium, a prescription form of bio-identical progesterone. Before prescribing the prometrium my dr. ordered saliva testing as well as blood testing of my hormones. Prior to Prometrium, I was using progesterone cream, as prescribed by another dr., but it did nothing for me. My dr. said eventually I might be able to drop down to the cream, but for now I had very low progesterone levels. I recommended Dr. Lee's book to a friend of mine. After she read it she immediately got on progesterone, following his protocol, and she told me she experienced PMS relief.

    For the heavy flow, I would have her tested for anemia. I was so grateful to my dr. for testing this, because I can now leave my house when I'm on my period. For so long I couldn't, that I still have this "mental" block as far as that's concerned....I have to keep telling myself I won't have an accident and/or faint! I have to take a lot of iron....the basic multi with iron isn't enough to take me from anemic to normal. What is working for me is a prenatal vitamin with 27 mgs. So, if she is anemic you might have to try different strengths of iron before you find what works.

    I wish I had suggestions for the cramps, but this is one of my last battles. I have to admit that I haven't really tried much for that other than OTCs, simply because I had too many other problems that were daily occurrences whereas the cramping is only 1-2 days a month.

    Good luck, and I hope you find some relief for her,
  8. crissyfamily

    crissyfamily New Member

    thanks for your help with treatement for my daugher...i'll ask the doctor about what you said..

    as far as my husband...yes, husband and I believe there are other things going on also also. not only the chlamydia p. but yes, we've had a lot of tests and only still trying to do another hhv6 and then on to stealth virus testing with dr. nicholson i guess.

    lots of hugs...take care
    [This Message was Edited on 08/08/2003]
  9. AnnetteP

    AnnetteP New Member

    I meant I haven't found anything that prevents the cramping (I'm sure I have a lack of "something," just don't know what it is), but I have found things to relieves it.

    I used to take the prescription Anaprox, but after Aleve came out I stopped this and switched. Lately though, Aleve hasn't been working. I got a sample of Midol in a box of Tampons, and its NOT the Midol I remember when I was a teenager. Back then it didn't do a thing for me. Either they changed the formula or my cramps have changed and now require what's in Midol.

    So, try Aleve or Midol. If she's still suffering ask for Anaprox.

  10. crissyfamily

    crissyfamily New Member

    hi again...

    yes, i caught that you did not get relief from cramping, but i thought the anemic part might be of interest to the doctor....but, it might be the heparin my daughter is taking also also as my periods are heavier now with lots of clotting since I also started the heparin about 7 weeks ago...

    i really appreciate your responses and thoughtfulness....
    [This Message was Edited on 08/08/2003]
  11. crissyfamily

    crissyfamily New Member

    hi racwhite....

    what is levbid - is it a prescription? or what...

    my daughter is really bad....

    thanks so much for your support

  12. crissyfamily

    crissyfamily New Member

    hi jellybelly....
    thanks for note of encouragement....

    i had read that there was a probably a problem with the th1 and th2 and did not know that heparin was a booster....i am excited to hear that as we spoke with our doctor about th1 and th2 problems and she said to research it and give her info....

    as always as everyone on this board has experienced, we seem to be the researchers for our doctors...but i don't mind and this board has been a wealth of information...and it seems that once we pass it along to our doctor we are very lucky that she considers it and usually works with us on the treatment that we pass along to her....

    Jellybelly....take care and thanks again....
  13. sk8ter

    sk8ter New Member

    Dare Chrissy,
    Where is your Doc,
    She sounds very educated on Viruses and such. I am in So_Orange Co.
    Thanks Wendy
  14. crissyfamily

    crissyfamily New Member


    You are in CA my doc is in TX....

    actually she is learning with us on CFIDS and FM but she is very educated on the endocrine system which plays a major role in our illnesses....

    if you'd like more info just let me know....

    take care and wishes for better health
  15. beckster

    beckster New Member

    prostaglandins. So she needs anti-prostaglandins. Some are over the counter (like Advil or those in that family)
    or if that is not strong enough you can get stronger ones by prescription from your doc. Take it at the FIRST sign
    of discomfort. Takes about 20 minutes to work. They work great!!!!!!!! I and a bunch of friends can testify to that. Don't wait and have her suffer more. Get some right away. (Like most meds, sometimes you have to try a few to see which one, which anti-prostaglandin, works the best.)
    [This Message was Edited on 09/06/2003]
  16. crissyfamily

    crissyfamily New Member

    Hi beckster..

    I appreciate your assistance. Midol doesn't seem to work as she just went through this same situation a few days ago and missed another day of school. Our doc just told her to try midol....that doesn't help much so we'll go to advil...also she didn't say what caused it so now I can have that info handy to research further.

    Thanks you so much for great advice...can't wait to see if it helps her out next month....

    take care.....

    crissy and family.....