I tested negative to both tests

[ladybugmandy]

both PCR and culture negative. can barely walk. am in constant agony.

may begin AZT next week anyway.

antibody test in 3 - 4 months.

 

[dipic]

You're going to start AZT treatment despite testing negative in both PCR and culture?

 

[Katie]

Was that with VIP or CD?

Have you thought about interferon beta first? It supposedly boosts natural killer cells, might help you before trying something that could mess up your mitochrondria even more than they are already. I know you're desparate, but I worry. Good luck, I know you're not doing this without thinking.

 

[fresh_eyes]

Oh, ladybugmandy. I know you were really hoping for positive - this must be difficult. You're right, though, about the antibody test still being out there. Know that we're all with you and care about your situation.

 

[Kati]

Ladybug, I am sorry you tested negative. I am also sorry you have a really hard time and I understand why. We are all in this together. And we are leaving no one behind. Keep up the fight. Stay connected. Keep positive. This is not the time to give up.

Hugs, Kati

 

[lebowski]

sorry to hear this ladymandy ,
have u ever been to middle east or mediterranean or Mexico ?.. chronic neurobrucellosis , my latest find , seems to be a very stealth chronic infection which is capable of doing every physical and mental damage to its victim, seen also in cfs or lyme .. i posted a few article about it to the " have u been in Asia - xmrv " section , maybe u d like to have a look at it and search it further later ..

 

[KC22]

Sue,

Weren't you still on anti-virals when you tested?? They said to be off of them for 15 days. That may be skewing your results.
Hang in there.

 

[CJB]

both PCR and culture negative. can barely walk. am in constant agony.

may begin AZT next week anyway.

antibody test in 3 - 4 months.

Please hang in there. Don't give up hope now. There are answers in our future.

Big hugs.

 

[MEKoan]

Sue,

Weren't you still on anti-virals when you tested?? They said to be off of them for 15 days. That may be skewing your results.
Hang in there.

I was also thinking about your time on antivirals. Whether you were on them or not at the time of testing I really don't think we are far enough into this experience to fully understand the interplay of antivirals and testing for a little known retrovirus.

I can imagine this is a big blow. I really hope you have a lot of support. This may be a good time to put some in place if you don't. Please reach out. What you are going through is tough, tough stuff.

You're not alone.

 

[Cort]

Don't do AZT; it can screw up your bones, give you anemia and other things. The VIPDx test is not the last word in all this; its not standardized - Klimas and Bateman both suggest not taking it simply because it can be wrong at this point. Some people are upset at WPI for producing any commercial test at this point in the game. Your results simply might not be correct.

Dr. Lombardi say 36% of people are testing positive....... not many...not nearly the 95% we heard earlier

Why not try oxymatrine - herbal supplement from Dr. Chia - cheaper, safer - he's says hes getting better results than interferon in his patients.

 

[maryb]

I would be interested to know if you were on anti-virals. VIP Dx said to me categorically no anti-virals for up to 15days before testing. So sorry it isn't the result you felt you needed. We are all supporting you, please think again about AZT without GP/doctor support. I can't even suggest anything so I know I'm not much use. Is there no information on this site about any other treatment you would consider trying, that is easy for you to access. I understand though when you feel too ill to even think/do anything about treatment options. My heart goes out to you.

 

[hvs]

PMed you, ladybug.

 

[kim500]

ladybug, I'm very sorry about the confusing negatives on your tests, but I'm more worried about you at this moment.

Please don't take AZT - take it from me, someone who knew many AIDS patients and saw first-hand how violent some reactions to AZT can be - if you think you're sick now... AZT will make you feel much worse. It is a very toxic medication.

I recall from other posts of yousr in the past that you are seeing a good CFS doctor in NYC and perhaps live in the tristate area. Is your NYC doctor supervising AZT? I'd be quite surprised if he was. Have you discussed your negative tests with him? Please, please do.

We can all hear the very distressing, careening tone in your words - an instant cause for worry for us all. ladybug, please at least do one thing for us, your friends, and for you - please call the New Jersey CFS Association and ask for support. Their number during business hours: 888-835-3677. If you get a message machine, leave an urgent message. Someone will call you back soon. They are there to help us all, especially in the roughest seas you're struggling in now.

 

[alice1]

My thoughts are with you and I hope you feel better with taking the azt.
Keep posting and updating please.Sending you a huge hug.

 

[Cort]

There are other options; I've been communicating with someone who managed to lower her pain levels considerably using EFT (http://www.emofree.com/). Amygdala Retraining is helpful for some. Something called MBSR can be very helpful with pain. http://www.umassmed.edu/cfm/mbsr/. It was developed for people in chronic pain who couldn't tolerate pain drugs.

My sense with myself is that my pain is associated with this kind of body-wide arousal which does not allow my body to relax - leaving it in a state of constant tension. These practices certainly help with that.

We're not talking about cures - we're talking about potentially greatly improving one quality of life. I think they're really worth a try.

 

[Katie]

There are other options; I've been communicating with someone who managed to lower her pain levels considerably using EFT (http://www.emofree.com/). Amygdala Retraining is helpful for some. Something called MBSR can be very helpful with pain. http://www.umassmed.edu/cfm/mbsr/. It was developed for people in chronic pain who couldn't tolerate pain drugs.

My sense with myself is that my pain is associated with this kind of body-wide arousal which does not allow my body to relax - leaving it in a state of constant tension. These practices certainly help with that.

We're not talking about cures - we're talking about potentially greatly improving one quality of life. I think they're really worth a try.

I know someone who has had great success with EFT and has become a practitioner now because it just worked. I myself have never tried it, but I've been where you are and tried some crazy stuff, some of it (shiatsu and homeopathy) worked. I could see if my friend would like to post on here about Emotional Freedom Technique if you're open to it.

Nice suggestion Cort.

 

[Andrew]

Another possibility is treatment based around Kutapressin. The research I've read shows it having success rates in the 75% range. One of the doctors who does this is Enlander in New York.

 

[alice1]

I just got off the phone with Sue.She said she will start with a low dose and she will be monitered.I know she's hanging on by a thread but I'm hopeful that the doc in NY will possibly suggest something else for her although she feels this is her only shot.She told me she's tried everything and has not had enough success with any of it.
I"ll call her over the weekend and tell her about the Kutapressin.She is so sweet and doesn't have an ounce of self pity in her.
I don't know what else to say.

 

[Andrew]

Hi Alice. Please give my best to Sue. I think I might have met her once in prohealth chat, and know how bad her situation is. But I don't remember if she saw Enlander. Anyway, just in case it helps, here is link about Tagamet that was found to do more than it was designed to do. A member recently posted about her success with this.

 

[MEKoan]

Hey Sue,

Thanks so much for giving us an update!

We worry :worried:

You're so not alone, huh?

Keep us posted, please!