Response from Dr Klimas

[Kati]

I finally spoke with her and my results showed Chronic Epstein Barr along with HH6.
My Natural Killer cells are below normal.
So Dr Klimas has recommended a drug called Imunovir which is great for cells and also viruses.
Goggle it and see the list for what it does and targets.
It was a great phone call.I feel vindicated from all those MD's who didn't want to do blood work,who didn't want to know or believe that it exsists.
I'll keep you posted on how this treatment goes.

Alice, it's great that you have managed to see Dr Klimas. Can I ask why she chose Imunovir over Valcyte? (I am reviewing the Kogelnik article on Valcyte in the forum's library at the moment)
I am also from Canada and I am shocked by the lack of treatment over here. I will ask my rheumy to please ask the MSP (medical service plan) to fund my care in the US because nobody knows here what CFS is and how debilitating is. I have been turned down for a consult by an infectious disease as "they don't treat CFS" . The rheumy, most prominent rheumy in town "doesn't treat CFS". The HHV-6 and EBV tests that I requested, the titers, never came out as tiiter, but came out as positive IgG- totally useless. What am I supposed to do? It's not good enough. I am ready to go to the media if need be.

A second question on the side, did you go see Dr Bell in Toronto? We didn't get any report from that and if you went or know someone that did, would appreciate an answer in the appropriate thread! thanks, Kati

 

[zoe.a.m.]

I am also from Canada and I am shocked by the lack of treatment over here. I will ask my rheumy to please ask the MSP (medical service plan) to fund my care in the US because nobody knows here what CFS is and how debilitating is. I have been turned down for a consult by an infectious disease as "they don't treat CFS" . The rheumy, most prominent rheumy in town "doesn't treat CFS". The HHV-6 and EBV tests that I requested, the titers, never came out as tiiter, but came out as positive IgG- totally useless. What am I supposed to do? It's not good enough. I am ready to go to the media if need be.

Kati,
I can't speak for anyone else, but I am amazed at the treatment some folks are receiving as I have never been offered testing or treatment for anything other than a few rounds of antibiotics (even with a fever that has been continual for almost 9 years!). We're sort of in the same region geographically, and Seattle does not seem to have any of the CFS docs that other states and cities appear to have; it's a bit of a mystery to me as to why...

I had the exact same experience with an infectious disease consult I was trying to get before the holidays: after all the paperwork and a referral from my PCP for fever and possibly SIBO, the doctor's office simply said "he doesn't see CFS patients." I'm not entirely sure what inf. disease docs are up to if they're not interested in viruses, bacteria, mycoplasmas, etc. I wonder how and when that policy will change (since docs like Klimas are showing viral loads in patients).

I can't help thinking, again and again, how much different this illness would be (and how much different it would have been in the beginning) if I'd been treated as though I had symptoms to TREAT, even if they didn't understand the illness as a whole. I'm so curious about Klimas still since reading about her thoughts and having watched her at the CFSAC meeting speaking about treating for abnormal biomarkers (what a concept, right!?).

 

[Kati]

I am quite mad at the level of services- and will phone the virology services tomorrow- have e-mailed a dr in infectious disease- will push though my specialist to get me some funding for out of country care if it doesn't work. My health is declining fast and I don't want it to be at a point of no return. I am attaching some relevant scientific papers to my letters to support my claims and see what they say. I got enough bullshit so far- I am now a mad woman in search of up to date evidence-based medecine.

 

[alice1]

She did do the early antigen test and a few others.I'm getting a copy of the results because the cartridge
on my fax pooped out when she sent them to me...
When I get them I'll post what she did.
I didn't see Dr.Bell.
Dr.klimas doesn't want to put me on an anti-vral because they're an immune suppressant and because I live with a type of Lymphoma that could be harmful.
The other option is Naltrexone but she really wants to get my NKC up to the normal range first.
The ID docs I saw here told me they don't call it EBV but CFS ...WTF!!! And that they don't do anything for it so I should pace myself and get used to being tired for the rest of my life.Can't wait to quote that one.

 

[calzy]

Kati.....I was on valcyte for 6 months and it was awful, I have never recoverd and felt better before taking it. I think that treatment is going to the wayside.

Alice, it's great that you have managed to see Dr Klimas. Can I ask why she chose Imunovir over Valcyte? (I am reviewing the Kogelnik article on Valcyte in the forum's library at the moment)
I am also from Canada and I am shocked by the lack of treatment over here. I will ask my rheumy to please ask the MSP (medical service plan) to fund my care in the US because nobody knows here what CFS is and how debilitating is. I have been turned down for a consult by an infectious disease as "they don't treat CFS" . The rheumy, most prominent rheumy in town "doesn't treat CFS". The HHV-6 and EBV tests that I requested, the titers, never came out as tiiter, but came out as positive IgG- totally useless. What am I supposed to do? It's not good enough. I am ready to go to the media if need be.

A second question on the side, did you go see Dr Bell in Toronto? We didn't get any report from that and if you went or know someone that did, would appreciate an answer in the appropriate thread! thanks, Kati

 

[alice1]

EBV-EBNA-G (Epstein-Barr_Nuclear Antigen-type G)
Positive 253.08 AU
Negative is less than 11
Epstein-Barr Viral Capsid Antigen-G (VCA-G)
Positive 227.29 AU
Negative less than 11
Early Antigen type-G (EA-G)
EBV-EA-G Positive 127.23
Negative less than 11
Epstein- Barr Viral Capsid Antigen-M(VCA_IGM)
Negative 4.03 AU
Negative less than 11..Didn't have the opportunity to go over these as it was a phone consult so other than the obvious positives I have no idea what this last one means.
I have low pro-cyctotoxic cyokines,low growth factors but no elevated patterns.
And the low NKC but I can't read the results as it really looks greek.
How long did it take before noticing a difference on the Imunovir? I tried Valcyte on my own,that lasted one day because it made my heart pound but I've read alot of people say Valtrex was less toxic and more tolerable.

 

[Kati]

I tried Valcyte on my own,that lasted one day because it made my heart pound but I've read alot of people say Valtrex was less toxic and more tolerable.

I personally don't think it's a good idea to try medication "on your own". Doctors (some of them anyways) are trained to know the contraindication, side effects, dosage and interactions with other drugs, and required surveillance while on it. It isn't a good practice at all to share your own drugs to anybody else. Also please think that herbal remedies, homeopathy mushroom extract as medicine. Compounded with medication it can have a "synergic effect that can be undesirable or plain dangerous for your organs such as heart, liver, kidneys. Check with your health care provider before adding a new medication to the mix. These drugs are not sold over the counter for a reason.

 

[alice1]

My family doc game me the prescption,I know he thought he was trying to help but they weren't for me.
Dr Klimas checked certain vitamin panals and most were good.More B12 though.
I agree that it's dangerous to ingest a drug that wasn't written for you but there are too many people who are desperate and don't have insurance that will cover the costs of blood work.These are comprehensive tests and are not cheap.

 

[Kati]

Valcyte is not a cure all drug. Ampligen is not a cure all drug. AZT is not a cure all retrovirus either.

I understand desperate. But a patient with ovarian cancer won't benefit much from a leukemia treatment. In fact, it might be lethal.

AIDS patient get comprehensive investigation, and we will too. Soon.

 

[glenp]

Imunovir is covered by insurance in BC. Make sure you get the follow up blood tests. A friend here got it from a local cfs doctor but had to go off of it in 2 months - he regularly monitors its affects with blood tests

glen

 

[alice1]

Thanks glen.

 

[alice1]

Thankyou glenp.

 

[goldiland]

Alice 1,

I was on immunovir for about six months. I've been a Klimas patient since 1998 and also have high viral titers to Epstein Barr and HHV-6 as well as natural killer cell cytotoxicity. The drug was a mixed bag for me... although I didn't respond as favorably as I had hoped with significantly enhanced NK activity, there were some pronouced positive changes in my cellular profiles, indicating a reduction in chronic inflammatory markers. Subjectively, once I came off of immunovir, I absolutely experienced a decrease in my symptoms and improvement in capacity to do things.

If you have questions about the drug or side effects experienced, call Bill Chick... he is the president of Rivex pharma which distributes the drug in North America. I called Bill a number of times and he is extremely knowledgeable and helpful.

Also, to everyone who has asked about why immunovir and not an anti-viral, it is very dependent on individual immune profiles. Klimas is very concerned on making sure that her patients do not become drug resistant to anti-virals; similarly to AIDS, it may take a number of years to develop an effective "cocktail" in CFS which manages our viral loads. Immunovir is a safe immunomodulator with close to 30 years of research behind it... it is a very smart first step in treatment for those with high viral loads/low NK activity.

 

[alice1]

Hi Sue,
I'm surprised you found a sympathetic IF doc here that's great.
I may need his number to get blood work done.
goldiland thankyou for the info about Mr Chick.I do have some questions and now I can go straight to the sourse.
Great info...

 

[Hope123]

Thanks for writing about your experiences with Klimas, Alice and Goldiland.

Out of curiosity, would you happen to know what she uses to monitor inflammation? Is it cytokines? ESR (erythrocyte sedimentation rate)? CRP (C-reactive protein)? Immunoglobulins? Complement (C3B, C4, etc.)? I've noticed some low grade inflammation on my own blood work and have been monitoring it.

 

[goldiland]

Hope,

She uses TNF alpha (cytokines) level mesurements as one of the primary benchmark of an overactive immune response.. When your system is in overdrive and has shifted to its overactive state (TH2), it is producing high levels of cytokines and firing at everything. These cytokines themselves can make you feel extremely sick. Her treatment is definitely focused on shifting the immune response from TH2 to more balanced TH1 response as well as improving overall cellular function.

I've had many of the other inflammatory marker tests done you mentioned; low grade inflammation is very typical in our illness and is part and parcel to the TH2 immune system state a lot of us are stuck in.

 

[hvs]

Getting treated for your obvious chronically-infected state. What a concept, alice1.
Go get 'em!

 

[aquariusgirl]

alice, why does Klimas wait for NK cell activity (?) or is it NK cell numbers to come up before using natltrexone?

 

[alice1]

aquariusgirl yes she wants my NK to hopefully come up before any other meds.

 

[alice1]

Quick udate,
This is my second week of Imunovir and so far so good.I have more energy but I'm not sure if it's from being gluten free,stopping sugar and drinking mate from Argentina,This tea is amazing,better than green tea as far as benefits and gives you a good boost,check it out on google..hopefully its the combination.
I went for a 20 minute slow jog last night and I feel fine this a.m..
Maybe I can go again tonight.yipee