Increasing Famvir Dose

[satoshikasumi]

Note there are other kinds of primary immune deficiencies besides common variable. It's not enough to just look at IGG levels. A complete assessment involves looking at whether you are producing antibodies after you get vaccinated (i.e. if you get a vaccine and your titers don't go up, that's proof of a problem even if your IGG levels are normal). Also, absence of certain lymphocyte subsets is an immune deficiency. For example, natural killer cell deficiency is it's own disorder. The chief symptom is recurrent herpesvirus infections.

Also, this is not common, but some patients with "CFS" symptoms have turned out to have chromosomally integrated HHV-6. This means that they were unlucky enough to be born with the virus integrated into their genes. These patients have very high levels of HHV-6 on PCR and need the most powerful antivirals, but they can be treated. Peterson, Kogelnik, and Montoya have run into this subset occasionally.

Just because a patient meets the CFS criteria is no reason to give up looking for other causes. If your diagnosis is not helping you, find someone who is open to challenging it.

 

[SOC]

Just because a patient meets the CFS criteria is no reason to give up looking for other causes. If your diagnosis is not helping you, find someone who is open to challenging it.

Excellent advice, but easier said than done for most of us here.

 

[Gingergrrl]

[my bolding]

I ran across CVID on Wikipedia while looking at something else. Wikipedia is hardly a top-notch resource, but it was still interesting to see how much the description of CVID there sounded like ME/CFS. I wonder why more of us have not been diagnosed with CVID. It would certainly make it easier to get treatment.

@SOC I found this thread from two yrs ago and wondered if more PWC's are being diagnosed with CVID now than back then? This was one of the diagnoses given by my new specialist on the forms for my insurance. It is doubtful my insurance will reimburse me anything but I am curious re: the diagnosis itself and guessing it was b/c my NK functioning was so low (5.)

 

[ebethc]

I have been on famvir 250mg twice a day for awhile now and it has helped but this year i feel the 3 steps forward i had improved with famvir , i have now gone back 2 steps, i dont think im as bad as pre famvir but struggling working part time.

I am working part time but due to several circumstances im going back to work full time after i have had 2 weeks leave. I have got a script from my doc for valcyte but at this stage just cant afford it for a few months atleast. I have a wife and young family that rely on my income and while working part time i have gathered a few bills, im stuck between a rock and a hard place at the moment.

My plan is to use Famvir at 500mg twice a day for a few months and hopefully get good improvement like i did when i used a lower dose of famvir, and hopefully i can manage fulltime work. After a few months i should be able to afford valcyte which i will use at a low dose along with a low dose of famvir. Fingers crossed i notice improvement with this increased dose while on leave but realise its going to take a few months to notice the difference.

Cycloferon i still find helpful, but like most immune modulators we need to have regular breaks from them, so will keep it up my sleeve for when i need it. This aussie winter my family all came down with a cold/flu, my wife needed a couple of days off work so probably more of a flu. I started to get a runny nose and a sore throat, this is when i started adding cycloferon with extra vit c. Normally i would get this flu and be in bed for 2 weeks but i think the cyclo has helped me avoid this flu, although the cfs has got me by the short and curlies.

What doesnt make sense in cfs is that alot of treatments are expensive and to afford them we need to work and without these treatments we really struggle to work at all. This only happens because its not a recognised condition. In australia if it was cancer this sort of treatment would be free and income would be covered by salary insurance or government sickness benefits, so we could rest and recover. it sucks!

cheers!!!

Hi @heapsreal - is Famvir still working for you? any side effects?