Benefits of Immune Testing at Dr. Klimas' Institute in Florida?

[waiting]

If you are under the care of an ME-literate doctor but are interested in the immune testing and assessment/interpretation offered by Dr. Nancy Klimas and her team at Nova Southeastern, what do you think are the benefits of this testing when weighed against the physical effort (and resulting crash) and cost of travelling to Florida?

I have some specific questions below and would be grateful if current patients at the Institute could comment -- thanks!

1. If the special immune tests you run are abnormal, are these results recognized by other MD's, specialists and LTD insurance companies as abnormalities that are either worthy of treatment or that indicate illness severity?
   
   
2. Would the test results put me in a position of knowing which specific prescription medications – either available now or hopefully available in the future -- might be applicable to me?
   
   
3. Is there any guarantee that my immune test will show abnormalities if they are there to be found or does it vary day by day (i.e. is it better to be crashed when blood is drawn?)?
   
   
4. Do the test results indicate whether an immune prescription medication would have a greater likelihood of success or would I achieve the same thing by a trial and error approach?
   
   
5. Is it required to repeat these special immune tests in the future?

 

[Gemini]

If you are under the care of an ME-literate doctor but are interested in the immune testing and assessment/interpretation offered by Dr. Nancy Klimas and her team at Nova Southeastern, what do you think are the benefits of this testing when weighed against the physical effort (and resulting crash) and cost of travelling to Florida?

You might ask Drs. Klimas & Fletcher if your ME-literate doctor can draw your blood & send it to them for testing, results to be sent back to your doctor. No travel needed....

 

[Kati]

Hi Waiting,

i have seen Dr Klimas twice, in 2010 and 2011
The immune tests she does are 2 folds (at least in my books)
1) cytokine pattern (not recognized by disability insurance cies and most regular physicians do not even know how to interpret this.). This is in my opinion a research test. gowever it is great validation to find out what is happening. I think she uses the cytokines to guide her treatment choices however as you probably find by now, there are few treatments and what she usually ends up using is Imunovir, Equilibrant LDN and perhaps anti-virals

2) Virus titers: she tests for coxsackie B virus, Parvo, EBV, HHV-6, CMV. These are not performed by regular drs and in general the IgG titers from the common drs simply means a past infection.

3) NK cell function, lymphocytes enumeration: once more the NK cell function is not well known in the general dr population and because the normal range is so wide, regular docs do not understand that a 10% reading is in the normal range but considered quite low.

I do not think this kind of testing is good for disability insurance companies becuase what they want to know is how well you function for your occupation and for any occupation. An exercise test would provide proof of disability, and even a TTT would provide proof as well because it shows you cannot sit or stand for 8 hours.

Dr Klimas is very well versed in terms of providing proofs of disability.

Is it worth the trip? Personally i have no regrets. It was great validation. However the flight from Vancouver to Miami are too much for me. Especially if you have to do an exercise test.

The testing that are performed provide just a window in time of what is going on internally. i mean, everybody has EBV. Sometimes it is active, sometimes it's not. So yeah, back then I had 2strains of Coxsackie B. Do they still show up? Who knows.

i think we will have better insight into our disease withing a couple of years.

 

[Kati]

You might ask Drs. Klimas & Fletcher if your ME-literate doctor can draw your blood & send it to them for testing, results to be sent back to your doctor. No travel needed....

They actually want fresh blood for cytokines and Nk cells

 

[waiting]

They actually want fresh blood for cytokines and Nk cells

@Gemini
@Kati

Yes, this is my understanding from the Institute as well -- in fact, they only have early AM appointments when you're doing your blood test because they have to ship it to the special lab the same day.

 

[waiting]

Hi Waiting,

i have seen Dr Klimas twice, in 2010 and 2011
The immune tests she does are 2 folds (at least in my books)
1) cytokine pattern (not recognized by disability insurance cies and most regular physicians do not even know how to interpret this.). This is in my opinion a research test. gowever it is great validation to find out what is happening. I think she uses the cytokines to guide her treatment choices however as you probably find by now, there are few treatments and what she usually ends up using is Imunovir, Equilibrant LDN and perhaps anti-virals

2) Virus titers: she tests for coxsackie B virus, Parvo, EBV, HHV-6, CMV. These are not performed by regular drs and in general the IgG titers from the common drs simply means a past infection.

3) NK cell function, lymphocytes enumeration: once more the NK cell function is not well known in the general dr population and because the normal range is so wide, regular docs do not understand that a 10% reading is in the normal range but considered quite low.

I do not think this kind of testing is good for disability insurance companies becuase what they want to know is how well you function for your occupation and for any occupation. An exercise test would provide proof of disability, and even a TTT would provide proof as well because it shows you cannot sit or stand for 8 hours.

Dr Klimas is very well versed in terms of providing proofs of disability.

Is it worth the trip? Personally i have no regrets. It was great validation. However the flight from Vancouver to Miami are too much for me. Especially if you have to do an exercise test.

The testing that are performed provide just a window in time of what is going on internally. i mean, everybody has EBV. Sometimes it is active, sometimes it's not. So yeah, back then I had 2strains of Coxsackie B. Do they still show up? Who knows.

i think we will have better insight into our disease withing a couple of years.

Thanks so much for providing such a detailed response, @Kati. I really appreciate it.

Did your GP respect the results, as having been done by a specialist immunology clinic, even if they didn't understand them fully?

And re: your #2, even if only IgG shows positive, do they (the Institute) get information from the numbers -- e.g. if they're over a certain value, then it means re-activation...?

Thanks.

 

[Kati]

Hi @waiting

My GP does not support much of my requests for health care. She refused a skype visit with Dr klimas and refused to prescribe Immunovir . The situation here in Canada is harsh, and that is why I get health care in the Us to well known expert.

That said she was kind enough to order monthly bloodwork since I am now on Valcyte and kindly ordered another off-label drug. She isn't much interested in managing my illness because it is too complicated for GP's and they don't have time, and most often no interest.

ME experts usually look at virus titers and the clinical picture and decide with the patient what should be tried first. It is not clear to me what is their Igg threshold, but apparently I met Valcyte criterias when my HHV-6 IgG titer was at 1:320 last September

In my case in 2010 Dr Klimas wanted me to start with Imunovir. i think she likes to start low and slow.

You need to match your ME expert with your own preferences, ie what is the acceptable treatment for you. A bad analogy is that you wouldn't shop for a smart car if you needed a minivan for your family of 6. You need to have the right fit.

 

[heapsreal]

As already said i think it gives you validation. I also think that when testing shows a dysfunctional immune system with low nk function and other t cells not functioning properly, combined with infectious testing with high titres etc, this then helps to confirm certain infections are an issue for you and something to chase after. Having these results and a report written up by Klimas might give weight to another doctor helping you with treatment like antivirals and antibiotics if needed.

I guess if you think the exercise testing would cause you issues that you have the right to refuse the test. I think if you have abnormalities showing up in other tests, then missing the exercise test wouldnt be a big issue and shouldnt stop other treatments. But i guess that having an exercise test now and other later on after a course of treatment might be a good gauge of your improvement??

Personally i would jump at the chance to get all the testing she does.

good luck.

 

[waiting]

As already said i think it gives you validation. I also think that when testing shows a dysfunctional immune system with low nk function and other t cells not functioning properly, combined with infectious testing with high titres etc, this then helps to confirm certain infections are an issue for you and something to chase after. Having these results and a report written up by Klimas might give weight to another doctor helping you with treatment like antivirals and antibiotics if needed.

I guess if you think the exercise testing would cause you issues that you have the right to refuse the test. I think if you have abnormalities showing up in other tests, then missing the exercise test wouldnt be a big issue and shouldnt stop other treatments. But i guess that having an exercise test now and other later on after a course of treatment might be a good gauge of your improvement??

Personally i would jump at the chance to get all the testing she does.

good luck.

Thanks so much for your thoughts on this, @heapsreal. I agree -- I've always had the general opinion that it would be good to have her immune tests done. I just wondered if they carried weight with the general medical world. I never had any doubt she knows what she's talking about.

 

[Kati]

@waiting She has been at it for over 30 years, so of course she knows what she is talking about. However the political situation makes it so that the disease is viewed more as a psych disorder due to the influence of the British psych.

I wanted to give an example from a local consultant who wrote in my consultation report that Dr Klimas' testing was like going on a fishing expedition.

This may only be regional, but the amount of disrespect is unbelievable.

Regardless, validation is a very, very good thing.

 

[Gingergrrl]

@waiting I am not sure what country you are in or where you would be flying from but if you are closer to the West Coast of the US then another good option is going to OMI. They do not do the cytokine testing but they can do everything else that you mentioned.

 

[acer2000]

I am not sure they know what the cytokine data really even means at this point. Maybe Dr. Klimas does in her head, but I haven't seen a clear cut explanation published. Maybe with this new round of papers we will get a better idea. I'd be curious if any Dr. Klimas patients can maybe comment on the different cytokines and what they indicate to her? Would be interesting.

 

[waiting]

@waiting I am not sure what country you are in or where you would be flying from but if you are closer to the West Coast of the US then another good option is going to OMI. They do not do the cytokine testing but they can do everything else that you mentioned.

@Gingergrrl, I am in Canada - closer to the east coast, so Florida is closer for me. It's not the length of the flight, although it's difficult sitting up and not being able to lie down, but it's also the whole effort involved in packing and then, of course, there's the airport. Wheelchairs in airports are now a necessity, but it's still a lot of overexertion, as you know.

 

[Gingergrrl]

@waiting I totally understand and you should go to the place that is closer to you with shorter flight (if you decide and feel you are up to the trip.). Best wishes!

 

[waiting]

I am not sure they know what the cytokine data really even means at this point. Maybe Dr. Klimas does in her head, but I haven't seen a clear cut explanation published. Maybe with this new round of papers we will get a better idea. I'd be curious if any Dr. Klimas patients can maybe comment on the different cytokines and what they indicate to her? Would be interesting.

@acer2000, I can't point to published papers, but over the years I did listen to webinars Dr. Klimas participated in -- they must still be available online -- maybe CAA's website. I'll have to check.

 

[acer2000]

@acer2000, I can't point to published papers, but over the years I did listen to webinars Dr. Klimas participated in -- they must still be available online -- maybe CAA's website. I'll have to check.

If you could find them, that would be great.

 

[waiting]

@acer2000

Here's one thread on PR about a webinar and a paper ... It's 2010, so a bit old. I'll keep looking.

http://forums.phoenixrising.me/inde...-of-cytokine-networks-in-cfs.3823/#post-85755