A trip to Florida! CFS Clinic (Dr. Klimas)

girlinthesnow

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Hello dear fellow PWCers

I feel completely guilt-ridden l but after 17 years I'm getting a holiday, to Dr Klimas' clinic. As I wrote on an earlier post I'll write a

full report on my return to the frozen wastes of Britain but before I go I need help. The clinic does a 'standard range' on tests,

almost all of which are utterly unheard of here:

Viral Serologies and Molecular diagnosis profiles and panels
Immunoglobin Quantitation: IgG, IgA, IgM
Immunoglobulin Sublasses IgG1, IgG2, IgG3, IgG4
Epstein-Barr Nuclear Antigen (EBNA) IgG
Epstein-Barr Virus Early Antigen (EB-EA) IgG
Epstein-Barr Virus (VCA) IgG
Epstein-Barr Virus (VCA) IgM
Human Herpes Virus-6 (HHV-6) IgG
Cortisol (Salivary)
IgE
Tumor Necrosis Factor Alpha
Tumor Necrosis Factor Receptor 1
Tumor Necrosis Factor Receptor 2

Flow cytometry profiles and panels
Comprehensive Lymphocyte Activations/Differential and Natural Killer
Cell Cytotoxicity
CBC

Also ' CANTAB cognitive testing and the VO2max stress test.'

The excitement at finding out which pathogens I may be housing is almost overwhelming!

Like a kid in a candy store I feel like I want more but don't know what. What other tests should I ask to have?

All help gratefully received ( I'd happily hide one or two of you in my luggage but post flaming underwearbomber this may prove tricky)

Michelle

I still don't know how to post those smileys into text
 

Countrygirl

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Hello dear fellow PWCers

I feel completely guilt-ridden l but after 17 years I'm getting a holiday, to Dr Klimas' clinic. As I wrote on an earlier post I'll write
full report on my return to the frozen wastes of Britain but before I go I need help.
Hi Michelle,

I'm green with envy :Green hat: ....I'm just down the road from you......are you sure I won't fit into your suitcase???
How wonderful! I wish you all the very best and so hope that she will be able to help you. Please ask her if she would be prepared to hop over the pond and set up a clinic here as well.Try bribery, corruption...whatever... Oh, to dream....

Give her a big:hug: from all of us lanquishing in the U.K.

I look forward to hearing all about it on your return.

Best wishes,

C.G.


I still don't know how to post those smileys into text
Click Go Advanced. Then click where you want one to appear, then click chosen smilie.
 

Dr. Yes

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Hi girlinthesnow

Yes, I remember you and your vacation...

Just a couple thoughts on some extra tests you might want to ask Doc Klimas if she can run.. (she may anyway)... But, umm -- are you going to have to pay for everything out of pocket? :eek:

-RNAse L test (usually done by one lab in the US and one in Belgium); I'm sure Klimas will have a solid opinion on this test, one way or the other...

-Mycoplasma sp. (there are a few) and Chlamydia -- both are frequently found in ME/CFS patients, and both have been the subject of research studies in this area (Enlander and De Meirleir routinely test for them, I believe; I was positive myself)

-HHV-6 IgM may or may not be useful; a viral culture - best sent to Ablashi or associates - would be a useful thing to do if IgG is very high or if IgM came back positive...

-Vitamins B-12 and D tests (there are a couple tests that can be done to establish whether you may have insufficient B-12... The Vit D test is more straightforward and routine)

That's all I can think of off the top of my drowsy head.. The only one I haven't had done among those is the RNase L one, but I was positive (abnormal, whatever) for the rest..

Have fun in Florida! But don't get too much sun before your Vitamin D test (kidding!)


p.s - like CG said, after you click "Reply" of any sort, click the "Go Advanced" button in the corner of the Reply box and you will get a new Reply box with plenty of smileys to choose from. :victory::sofa::worried::ashamed::innocent1::Retro tongue::rolleyes::confused::D:Retro smile: etcetera
 

joyscobby

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View attachment 778 View attachment 779 View attachment 780 View attachment 779 View attachment 780



Cannot advise you about tests but If you can also go to South Beach and see the Art Deco. How long are you going for. I enquired about it and got a reply but cost of tests is the big question could you let us know in the UK what they end up as. We have to pay for them all.

I want in that suitcase as well. I have been to Florida twice love it.

oh ye and watch thoode gaitors
 

girlinthesnow

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Hi Country Girl

Will try to pack a little sunshine and heat in that suitcase for the return journey. I will give Dr Klimas a big hug, she's coming to the UK on the 24th of May, Invest in ME Conference. What would we use to bribe her to stay?

Stay warm

Michelle
 

girlinthesnow

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Joyscobby

I went to New York years ago but trips across the pond now are to visit family.

The cost of the' standard list' of tests is about $1500 so any extra goodies I want will be more, so have to work out what is most important. I think concentrating on active infections because as you know probably only too well it's near on impossible to get these tests done in the UK. Heard yesterday on the BBC that there are more alternative practicianers than GPs in Britain, everything but science and research here.

Thanks for the advice about the gators, I won't be jumping into any swimming pools!
 

joyscobby

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If you can once you are back and recovered tell us about it including costs as it would help us here to see if we can afford it. I am hopefuly going to invest in me do as I call it as well. got a ticket but travel may be to much. thanks been to NYC as well, I so want better to travel.
 

Countrygirl

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Hi Country Girl

Will try to pack a little sunshine and heat in that suitcase for the return journey.
Thank goodness for that. I am freezing!! I don't 'do' cold. Brrrrrrrr
I will give Dr Klimas a big hug,
Thank you. She thoroughly deserves one for all she does. We are very grateful, tell her.

she's coming to the UK on the 24th of May, Invest in ME Conference. What would we use to bribe her to stay?
Good question.........um...um.....the satisfaction of revolutionising the care of a quarter of a million U.K. patients! :D If only!

Stay warm
I'm trying....Brrrrr! And you, Michelle.

Best wishes,

C.G.
 

girlinthesnow

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Hello Dr Yes

Advanced or not it seems my ISP doesn't do smilies. So you'll just have to imagine a smile and a :hug:

Thanks for the list, i hadn't thought of Mycoplasm or Chlamydia. Have you had tests for fungal infections?

I'll ask about the RNase L, it's an interesting one. B12 injections is about the only thing I could get done here, MUST be short of Vit D in cloudy UK surely???

Stay warm

Michelle
 

Countrygirl

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girlinthesnow has got it!

:victory: :victory: :victory: Michelle's found the :Retro smile::D;):D:sofa:

Well done!:balloons:
 

Dr. Yes

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Hey girlinthesnow (which, abbreviated, is "gits"!),

The only fungal blood test I'm aware of that they do regularly is Candida albicans... And yes, I was positive for that, too... But Candida still doesn't get much respect; very few doctors (including ME/CFS doctors) think it's centrally involved in CFS. Those that at least see it as a problem treat with Nystatin or diflucan, which are prescription meds.. But probiotics are given, too, and other alternative remedies (like garlic capsules, which WILL give you B.O.!) are also sometimes suggested. So you could get the test done and self-treat it back home... Probiotics and garlic are generally considered healthy anyway, but the 'reliable' probiotics I've looked into so far are really expensive (for me, anyway)!! :worried:

p.s - Ah, so you have the power to smile at last. Good thing -- if all you could have done is 'hug' people you would have come off as very affectionate but a little creepy...:Retro wink:
 

girlinthesnow

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Hey Dr Yes

gits, it was only a matter of time.....:Retro redface:

I did a couple of de-sensitization sessions for food intolerance in the mid-90's and took nystatin for a while,never finished it so I'm probably still mouldy:ashamed: It was pretty awful stuff. Ordered Dr. Ohhira's, Essential Formulas Inc., Probiotics 12 PLUS Original Formula' which IS very expensive but in for a penny in for a pound.


Well I wouldn't want to appear creepy so :Retro smile:

:hug: HAH
 

calzy

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;) shes my Doc, you made a wise choice, you will love her:victory:

dont forget, there is no cure, but she will help you feel beter, and she will be in the forefront of XMRV, she has all the resources of the Univ.
 

girlinthesnow

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Hi Calzy

Has Dr Nancy helped you alot? She appears very friendly and wonderful on the videos I've seen. It still seems unreal that I am going to her clinic.

If I get to South Beach I will Definitely go to Joe's :D
 

Dr. Yes

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Pardon my ignorance, but if you have the RNAse L, necrosis, chlamydia, etc., tests, how do these help you? Are they for diagnostic purposes or treatment?
Hi Lucie,

Those tests rarely show any clear treatment route, but they can shed light on what sort of things are involved in your illness, and can suggest what areas or potential treatments to focus on, etc. Abnormalities in the immune panel can suggest pathogens at work (esp. elevated white blood cells/lymphocytosis and elevated immunoglobulins), and/or a weakened immune response (low NK cell function, etc), which is always an important thing to know. I don't think anyone knows the real significance of an abnormal RNAse L test, but it definitely seems to be linked to immune dysregulation and a number of pathogens have been known to cause it. Mycoplasma and Chlamydia can be treated with antibiotics if it's thought that they are contributing to symptoms... A few docs consider them potential causative agents, or at least cofactors. Some patients who had at least high IgG to EBV, HHV6 or CMV have improved while on long courses of antivirals; the idea is that they have low-level infections that are either directly causing havoc or triggering damaging immune responses. (I think Klimas tests pretty routinely for various interleukins, too, to try and catch an inflammatory process in the act).

Immune-boosting protocols could be tried, I guess, if you have low immune markers (but not excessive cytokines). But the basic value of all the testing would be to see if you have the ME "footprint", as Enlander calls it, or to try to figure out what subset of CFS you fall into. Certain treatments out there are NOT a good idea if you already have too much immune activation.. others (like most steroid treatments) may not be a good idea if you have a virus sitting around in your system... And so on.

For me, the positive findings at least made SOME doctors take me seriously and allowed for more insurance reimbursement than I otherwise would have gotten. (Though Aetna insurance, at least, is staying on top of all the CFS research in order to deny payment for things they consider 'still in the research phase', like RNAse L, SPECT scans, and basically everything else that they fear well-informed patients will hit 'em up for.)
 

girlinthesnow

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Hi Luci and Dr Yes

Thanks Lucie for asking questions and Thank you Dr Yes for answering them, :thumbsup:you made so clear the whole jist of what I am trying to get at:

HTML:
But the basic value of all the testing would be to see if you have the ME "footprint", as Enlander calls it, or to try to figure out what subset of CFS you fall into. Certain treatments out there are NOT a good idea if you already have too much immune activation.. others (like most steroid treatments) may not be a good idea if you have a virus sitting around in your system... And so on.


This sifting of patients seems critical for everything; research, testing and (best of all) treating. Makes it labour intensive and time-consuming for GP and patient, everything tailored to an individual. But if it can be done there is genuine hope of an individual getting better. At least this is what I choose to believe.