Valcyte help please !!!

[patient.journey]

Omar88 clarify your wbc is it low as in out of range low or just come down from previous tests but still within normal range. If its still within normal range i wouldnt stress too much about it, these numbers can fluctuate within there ranges. if its outside the normal range then it could be a reason for the chest infections your getting.

My WBC came down again, my test yesterday showed mine are 4.5 now so am still in the normal but i was between 9 - 10 when i start the treatment 5 months ago and this is a big difference for my body and the differentiation showed that my Monocyte and Eosinophil got under the normal little bit while the other are still in the danger line

 

[patient.journey]

I think its healthy to take short breaks (like weekends off) while on Valcyte to break up any effect it has on your white blood cells or if you are herxing bad. I couldnt take Valcyte until I was on famvir for 6 months first. And famvir gave me full body aches (9 out of 10 pain level) for a week straight that I treated with some occassional lose dose aspirin that worked amazingly well.

NAC is good for dealing with toxic side effects, helps the lungs, and helps kill c. pneumoniae, a common respiratory/systemic co infection. I take1200mg a day. 3 to 5 grams of vitamin C a day isnt bad either.

DMSA, an oral chelator taken a couple hours after the meds, also weridly helped with my Famvir and Valcyte side effects. about 300 mg 2 hours before and after food, one time a day, but not to be used every day.

Sorry what id NAC ?? is it a short name ? can you send a link please

 

[jimells]

Cautions and Warnings About Valcyte as A Chronic Fatigue Syndrome Treatment

http://www.drpodell.org/chronic-fatigue-syndrome-hhv6.shtml

This was really helpful. Thanks for posting the link.

I started Valtrex three weeks ago for HHV-6 infection. My impression is that Valtrex is not as effective as Valcyte for HHV-6, but is much safer. Is that correct?

Omar88 bronchitis for a month sounds really miserable. I hope you see some improvement soon.

 

[Charles555nc]

NAC

Also known as
N - ACETYL CYSTEINE

 

[Mij]

This was really helpful. Thanks for posting the link.

I started Valtrex three weeks ago for HHV-6 infection. My impression is that Valtrex is not as effective as Valcyte for HHV-6, but is much safer. Is that correct?

Omar88 bronchitis for a month sounds really miserable. I hope you see some improvement soon.

I can't answer your question whether it's safer but I took Valtrex years ago with no problems.

 

[patient.journey]

This was really helpful. Thanks for posting the link.

I started Valtrex three weeks ago for HHV-6 infection. My impression is that Valtrex is not as effective as Valcyte for HHV-6, but is much safer. Is that correct?

Omar88 bronchitis for a month sounds really miserable. I hope you see some improvement soon.

Valcyte was great i went from 4-5 in my worst days to 8, i wasn't cured but it was 5 months only and i have 4 months still up to 7 if the doctor accepted 12 months period treatment.

Valtrex is not effective for HHV6 as Valcyte sure but you could try Famvir as you are just starting and its not expensive in your country i think beside i heard good talking about it.

Yes its hard this is my 5th week pray for me,,

Thanks

 

[heapsreal]

Omar88 those wbc numbers could be low because of the chest infection too and not because of valcyte. if your still in the normal range i wouldnt worry too much about it but just keep an eye on it and look more into ways of treating the chest infection. A lower dose of valcyte like you are doing is probably a good move??

 

[SOC]

I have an active herpes infections such like people with CFS/ME and i have been diagnosed with it from 6 specialist 3 of them are infection disease doctors after they looked to my symptoms,,

Yes am not 100% sure if i got typical CFS/ME like any one of us cause we dont have a definition that we could go under it, and i read people here have different viruses, bacterial infection.

I got my illness after a sexual contact but it might be that my body couldnt handle the CMV like my doctor say specially that i got it with a bacterial STD that wasn't treated until a month later when the virus already came over my immune my system and btw i still have prostatitis so the infection wasnt treated well beside i still dont know what is it but mostly its a Mycoplamsa or Ureaplasma and i hope that treating it soon will make a difference !

Am not stressed but something wrong is happening in my chest and my body and we dont have a CFS doctor here so am working this all over by my self, i ask for tests and treatment protocols and i search for them so I have to know is it a bacterial infection cause i dont think viral will stay this much ! or it is something else ,,,

Finally Am sorry for what is happening for young daughter

Yes, sounds like you are the same as most of us -- who really knows if they have ME/CFS? Too many unclear definitions and no definitive biomarker. Certainly you have the multiple infections that are common in ME/CFS.

The types of immune dysfunction common in ME/CFS make us particularly susceptible to intracellular pathogens -- viruses and some, but not all, bacteria. Viruses in us stay much longer than in people without immune dysfunction because our immune systems to not handle them well. That might explain why a viral infection might last longer than you think it should.

It was horrible to watch a wonderful, smart teenager fall under this illness. The great news is that after being very sick, she is now in remission, graduated from college with an engineering degree, got into graduate school (also in engineering), and is now engaged to be married. So it was worth the risks we took to get her here.

 

[SOC]

This was really helpful. Thanks for posting the link.

I started Valtrex three weeks ago for HHV-6 infection. My impression is that Valtrex is not as effective as Valcyte for HHV-6, but is much safer. Is that correct?

Omar88 bronchitis for a month sounds really miserable. I hope you see some improvement soon.

As Dr Lerner explained it to me, Valtrex is not effective for active HHV-6 or CMV. However, it is effective in keeping all latent herpesviruses in latency, so it can be used prophylactically for suppression after the active infection is cleared. I think it had something to do with where interrupts the replication process...?

If you have only active HHV-6, not Epstein-Barr or HSV, I think the Valtrex is not going to to the trick. If you do have the others, clearing them with Valtrex might let your immune system get stronger and go after the HHV-6. If your doc is a knowledgeable ME/CFS doc or an infectious disease doc, s/he undoubtedly knows more than I do about all this and has a good reason for using Valtrex instead of Valcyte or Famvir.

 

[patient.journey]

Omar88 those wbc numbers could be low because of the chest infection too and not because of valcyte. if your still in the normal range i wouldnt worry too much about it but just keep an eye on it and look more into ways of treating the chest infection. A lower dose of valcyte like you are doing is probably a good move??

Am taking the low dose now "450" and i feel little better " in the scale of pain i was on 7 now am in 6" ,but am not sure if it because of lowering the dose of Valcyte or maybe its just a two good days because i had 3 or 4 in this month before !!

I wanna run some tests so please help me with them,, i will ask my doctor for Mycoplasma, Chlamydia Pneumonia , ASO, sputum culture and throat culture !! are those enough or there are other tests ?

What would help me now from your trials and what do you think of NAC ? i read about it but am not sure if does it help with bacterial infections !

Thanks

 

[jimells]

If you have only active HHV-6, not Epstein-Barr or HSV, I think the Valtrex is not going to to the trick... s/he undoubtedly knows more than I do about all this and has a good reason for using Valtrex instead of Valcyte or Famvir.

This is very interesting, although rather discouraging. I will have to ask her why Valtrex instead of Famvir. What would be a reasonable length of time to try Valtrex before asking for a different antiviral?

So far HHV-6 is my only viral infection. I do have mycoplasma pneumoniae, which the doc wants to treat after taking care of the virus. I understand that it is a bacteria that lives within cells and sometimes called "walking pneumonia".

The types of immune dysfunction common in ME/CFS make us particularly susceptible to intracellular pathogens -- viruses and some, but not all, bacteria.

Wow, this strikes me as very significant. Thanks for pointing this out.

 

[heapsreal]

Am taking the low dose now "450" and i feel little better " in the scale of pain i was on 7 now am in 6" ,but am not sure if it because of lowering the dose of Valcyte or maybe its just a two good days because i had 3 or 4 in this month before !!

I wanna run some tests so please help me with them,, i will ask my doctor for Mycoplasma, Chlamydia Pneumonia , ASO, sputum culture and throat culture !! are those enough or there are other tests ?

What would help me now from your trials and what do you think of NAC ? i read about it but am not sure if does it help with bacterial infections !

Thanks

Many docs will just use a broad spectrum antibiotic and usually on a full blood count that does lymphocyte and neutrophils etc will give them an indication of whats going on?? Maybe google common bacterial causes of chest infections and it will give u a list of the common bacteria found and then get tested for these. Sometimes it will take a long course of antibiotics to get the job done, 2 weeks sometimes wont cut it.

 

[Marianarchy]

If you are not getting better with antibiotics, it might be a good idea to test for fungal infections that can cause bronchitis and pneumonia of the lungs (ex. Aspergillus Fumigatus, Valley Fever). My father had a cough and chest congestion for months on end. His PCP kept giving him antibiotics. They didn't figure out it was a fungal infection until after died of it.

 

[patient.journey]

If you are not getting better with antibiotics, it might be a good idea to test for fungal infections that can cause bronchitis and pneumonia of the lungs (ex. Aspergillus Fumigatus, Valley Fever). My father had a cough and chest congestion for months on end. His PCP kept giving him antibiotics. They didn't figure out it was a fungal infection until after died of it.

I will have a sputum fungus culture in few days i think it will show if there is fungus infection !

Thanks

 

[patient.journey]

NAC

Also known as
N - ACETYL CYSTEINE

is this the same thing you are taking ? at least the same components ?!

http://www.gnc.com/product/index.jsp?productId=2133398

 

[patient.journey]

Something weird happens !

I ran CBC test today and my WBC jumped to 7.4 in less than a week from the last test ,, could this really happens by cutting the dose in a week only exotically that my numbers were 4 point something last time !!

Am having some symptoms of coughing and tonsils so it might be due a new infection ? i think i will run a new CBC test in a week to chick ,,

The question does the WBC numbers jump that fast when we cut down the dose or stop it ?

Thanks

 

[heapsreal]

i know neutrophils can change quickly as in hours somtimes, so its possible.

 

[patient.journey]

Hey guys,,

I ran some tests and they were TB blood test, ASO throat and sputum culture and all were negative !! finally my sputum fungal culture showed Moniliasis infection !!

What do you guys think ? anyone got this before specially in such place ?

I will have another sputum and throat culture next week in bigger hospital and i will have Mycoplasma and Chlamydia pn antibody tests !! I dont think there are other tests still for bronchitis after that

My doctor doesnt know what to do with this infection he asked me to ask my CFS doctor out side the country " i dont have one but this is how i run those test i have to say my doctor outside asked for them" so please guys help me with this ,,

Should i start anti fungal treatment ? would this treatment change any test of results i will have in a week in the other hospital for bacterial cultures and antibodies tests?

Thanks

 

[SOC]

If you search PR for candida (another name for Moniliasis) you can see what other people have tried. It's fairly common in ME/CFS, as well as other immunocompromised conditions.

 

[patient.journey]

If you search PR for candida (another name for Moniliasis) you can see what other people have tried. It's fairly common in ME/CFS, as well as other immunocompromised conditions.

I cant find any stories about fungal bronchitis so i will continue my testing for bacterial infection before i start fungal treatment ,,