Klimas et al Questions

[SOC]

My experience with Dr Rey (and my daughter's has been the same so far) is that she is careful, sensible, and incredibly caring and helpful. She can't do much until our original testing is back, so most of us get the same general recommendations at the first visit because they are things that are known to be useful to most PWME and are not often problematic -- CoQ10, vit C, fish oil.

Once my labs were in -- and that takes a couple of months -- my treatment was based on the results of those initial labs. Equlibrant to work on the Coxsackie b, and Valtrex to keep the herpesviruses suppressed (after 2 years of Valcyte under another doctor), and vit D. We're working on my low blood volume and tachycardia, which has been a very big help. She kept me on meds that I've been on for a while since they're still working for me -- Cymbalta for pain, trazodone for sleep, etc.

A lot of people get Imunovir because low NK cell function is common in ME/CFS. Similarly, many of us have untreated (because there is no well-accepted treatment) Coxsackie b, so it shouldn't be surprising that many of us also get Equilibrant early in treatment with Klimas/Rey.

I didn't get Imunovir because my labs don't show a need for it. So treatment is not the same for everybody.

Drs Klimas and Rey are careful and responsible doctors. They know our illness very well. They are smart enough not to change a lot of things at once. They know we have to start low and go slow with most medications. They know there's no one easy fix for ME/CFS, so they keep working on symptoms to give us the best quality of life. It doesn't happen overnight.

Drs Klimas and Rey are moving to the new Neuro-Immune Institute at NOVA Southeastern University, which is causing (relatively) temporary administrative and scheduling problems. Dr Klimas is incredibly busy setting up the institute. Dr Rey is covering most, if not all, of Dr Klimas' patients. They are both training new doctors for the institute. To add to the confusion, their amazing office manager, Hannah, had to leave unexpectedly at the same time.

So yeah, things are kinda messy administratively right now. I've decided to be patient because what they're building right now will be an huge step forward for PWME. Additionally, both Dr Klimas and Dr Rey have gone far, far out of their way to help me in all kinds of ways -- even while they're vastly overworked.

I've worked with three ME/CFS specialists in the 8 years since I was diagnosed. They all contributed something to improving my condition, but Drs Klimas and Rey have, by far, the most treatment options with the most individualized treatment plan and the best patient care.

My suggestion is that if you can't deal with the the disruptions caused by the move, wait another 6-12 months until things have settled down a bit.

 

[PhoenixBurger]

Thanks for that post. Its good to get another viewpoint. I think the poster who expressed frustration about identical regimen's is understandable, but its probably due to the fact that they don't know a lot about this condition. I honestly don't think there's a whole host of other meds and 40 other possible treatment regimens in the first place. This isn't like HIV that has over 25 drugs and they can try various cocktails custom tuned to the individual's situation. So maybe Klimas & Ray do the ME version of "kitchen sink" for those who are very severe. And a lot of people fall into that category. Unfortunately maybe there isn't a whole bunch of other kitchen sink approaches. Only one.

I did see someone say something concerning though - you wait a long time to get in to see them once. You wait a couple months for results. What about follow up visits? Shouldn't they be monitoring people on a monthly basis, or every 3 months at the very most? Seemed a little strange that people say they go only once...

 

[heapsreal]

Thanks for that post. Its good to get another viewpoint. I think the poster who expressed frustration about identical regimen's is understandable, but its probably due to the fact that they don't know a lot about this condition. I honestly don't think there's a whole host of other meds and 40 other possible treatment regimens in the first place. This isn't like HIV that has over 25 drugs and they can try various cocktails custom tuned to the individual's situation. So maybe Klimas & Ray do the ME version of "kitchen sink" for those who are very severe. And a lot of people fall into that category. Unfortunately maybe there isn't a whole bunch of other kitchen sink approaches. Only one.

I did see someone say something concerning though - you wait a long time to get in to see them once. You wait a couple months for results. What about follow up visits? Shouldn't they be monitoring people on a monthly basis, or every 3 months at the very most? Seemed a little strange that people say they go only once...

exactly, with the same condition most are going to be treated the same i guess. It would be strange if we all had the same condition but got treated totally different. The frustration comes when one isnt improving like others or reacts badly to treatments and theres not alot of alternatives.

 

[PhoenixBurger]

Actually I was moreso saying that due to a lack of varied treatments, the regimen ends up being the same. The only variation would be those who are less severe. They would get fewer of the kitchen sink regimen. The more severe ones however, will likely end up with the same kitchen sink, because there is only one kitchen sink. I definitely wouldn't say this condition isn't unique to the person. The symptoms are extremely custom to each individual. I just dont think they know enough about it to have 25 different regimens available in the first place. So you either get "everything" or you get a little less than everything.

 

[heapsreal]

Actually I was moreso saying that due to a lack of varied treatments, the regimen ends up being the same. The only variation would be those who are less severe. They would get fewer of the kitchen sink regimen. The more severe ones however, will likely end up with the same kitchen sink, because there is only one kitchen sink. I definitely wouldn't say this condition isn't unique to the person. The symptoms are extremely custom to each individual. I just dont think they know enough about it to have 25 different regimens available in the first place. So you either get "everything" or you get a little less than everything.

Definately individuals have different things going on but like u say one kitchen sink, maybe a couple more sinks i think immune system and then infection sinks. I suppose it also depends on what they can test for too depends on how many sinks.

 

[PhoenixBurger]

True good point Heaps.

Does anyone know if this new clinic they're making is going to have lab facilities and double as a source of new research and discoveries? Or is it just a sexy new glossy office for them to do business in with a little more square footage?

 

[heapsreal]

True good point Heaps.

Does anyone know if this new clinic they're making is going to have lab facilities and double as a source of new research and discoveries? Or is it just a sexy new glossy office for them to do business in with a little more square footage?

Are they joining up with Open medicine institutte or they a seperate group?

 

[maddietod]

I did see someone say something concerning though - you wait a long time to get in to see them once. You wait a couple months for results. What about follow up visits? Shouldn't they be monitoring people on a monthly basis, or every 3 months at the very most? Seemed a little strange that people say they go only once...

I think you wait 6 weeks for the lab results. Then you have a phone consultation to go over the results. Because it turns out I have Lyme disease, which has to get treated first, I don't know how the next steps work. But I had expected to start a treatment regimen immediately, and to schedule phone consultations and follow-up visits as needed. It's not hard to get a phone consult once you're a patient, and Dr. Rey answered an emergency question of mine by phone, within an hour. [I emailed, she called.]

Madie

 

[SOC]

I think 6 weeks is the "usual" wait time on labs, but this fall it has been much longer. There was a problem at the University of Miami lab which caused a huge backup. Otherwise, my experience with Dr Rey is similar to Madie's.

PhoenixBurger -- Here's some more info about the new institute.

"The Institute for Neuro-Immune Medicine will use the integration of research, training, and clinical care to advance the needs of patients suffering from CFS/ME and GWI. By bringing together some of the best scientific minds in the world, the facility will act as both a think tank and a working institute for the research, train new clinicians, and provide diagnostic and therapeutic clinical care."

http://nsunews.nova.edu/worlds-lead...archers-joins-nova-southeastern-university-2/

 

[CallieAndToby]

Yea my GP is horrible and doesn't believe it exists. I have seen many sleep specialists and one CFS doctor put me on Xyrem, it didn't help and I got horrible side effects. I've pretty much tried everything there is to try for sleep. I take a lot of stuff as it is and am highly sedated, but still no sleep and no restorativeness. Something is truly wrong b/c I am running on adrenaline all the time, I do take a beta blocker every night. I am however looking into seeing an out of town neurologist via phone but I honestly don't know what more he can do that hasn't been tried. I guess I just expected more from my Miami trip, I was hoping for more; it took me forever to get diagnosed so I'm new to treatment and such. Being misdiagnosed for 10 years I am very behind on knowledge and research.

 

[heapsreal]

Yea my GP is horrible and doesn't believe it exists. I have seen many sleep specialists and one CFS doctor put me on Xyrem, it didn't help and I got horrible side effects. I've pretty much tried everything there is to try for sleep. I take a lot of stuff as it is and am highly sedated, but still no sleep and no restorativeness. Something is truly wrong b/c I am running on adrenaline all the time, I do take a beta blocker every night. I am however looking into seeing an out of town neurologist via phone but I honestly don't know what more he can do that hasn't been tried. I guess I just expected more from my Miami trip, I was hoping for more; it took me forever to get diagnosed so I'm new to treatment and such. Being misdiagnosed for 10 years I am very behind on knowledge and research.

Look into high night time cortisol. Usually a 4 times a day saliva test is used for this and normally ordered by an intergrative practioner but i think in the States u dont need a doc to order these tests??

 

[CallieAndToby]

After my first appt. it took me 3 months just to schedule a follow up appt. for 2 months later (that was emailing and calling constantly), so that's 5 months of wait for my lab results and my treatment plan. The previous office staff was incredibly rude to me, that's all I'm going to say on that matter; they were this way with my friend also.

Hopefully things will be different after the big move. Dr. Rey is very nice though, no denying that. I have never worked with Klimas so nothing I can say there other than I've heard great things. I guess you guys are saying I need to be patient? Problem is like heapsreal said, we can't all tolerate the same treatment and there don't seem to be alternatives. The rate at which I am declining and becoming sicker is downright frightening. As far as the NK problems go, what can they do if you literally cannot take immunovir or inosine? I tried as best I could but Dr. R said I had to stop b/c of the adverse reactions to such low doses.

 

[SOC]

After my first appt. it took me 3 months just to schedule a follow up appt. for 2 months later (that was emailing and calling constantly), so that's 5 months of wait for my lab results and my treatment plan. The previous office staff was incredibly rude to me, that's all I'm going to say on that matter; they were this way with my friend also.

Hopefully things will be different after the big move. Dr. Rey is very nice though, no denying that. I have never worked with Klimas so nothing I can say there other than I've heard great things. I guess you guys are saying I need to be patient? Problem is like heapsreal said, we can't all tolerate the same treatment and there don't seem to be alternatives. The rate at which I am declining and becoming sicker is downright frightening. As far as the NK problems go, what can they do if you literally cannot take immunovir or inosine? I tried as best I could but Dr. R said I had to stop b/c of the adverse reactions to such low doses.

It sure sounds like it's not working for you. There is no question they are very busy with the transition and there are an awful lot of people who want to see them, so they are probably beyond swamped, which is not the ideal situation, especially for a new patient with a lot of needs.

For me, the quality of care and the variety of therapeutic options are right for my daughter and I where we are in the progression of our illness, so we cope with the confusion (with a certain amount of whining among ourselves ). That's not going to be true for everyone.

Don't hesitate to look for another doctor who might suit your needs better. A good naturopathic physician might help you deal with some of the symptoms while you learn more about which ME/CFS specialist best suits your needs. What about the doctor that diagnosed you?

Do you know why you are declining so rapidly all of a sudden after 10 years of illness? That sounds like the most urgent thing to address.

 

[adreno]

With the treatments available to us now and the knowledge that we can get off PR, its just not rocket science treating cfs/me. As madie said, i think some good immune testing nk function is a big one i think and can help cement our diagnoses, then i think lymphocyte subset, immunoglobulin subclasses and then some common auto immune problems etc then get tested for all the common viral and bacterial infections in cfs/me and treat the buggers. The immune system is harder to treat and i suppose the only thing easily available is immunovir for nk function and gammaglobulin for immunoglobulin defiencies.

I suppose im saying its not rocket science because we have had enough people on here see these gurus and now the information is more readily available, we just need a doctor to do the testing and write the prescriptions. Some of us have to take it alot slower then others with treatments and we still need meds/supps to treat symptoms like sleep, pain etc I dont think anyone has a monopoly on this illness, yet or a certain cure. Unfortunately its still very much trial and error with treatments. I also think when one is upto full steam with treatments its going to take 6 months to really notice improvements and 12 months to feel good, its not going to happen over night, that just seems to be the case with treatments that have helped others.

cheers!!

Actually, the underlying biochemistry of all this is very complex. I think it would be much simpler building rockets!

I have used the last 3-4 years reading on our condition, and I still don't understand a fraction of what is going on. Yet, there are pattern that can be identified, it just takes so damn long. It's like completing a puzzle, collecting a spider's web of threads of knowledge that ultimately come together in the center. But you do start to make connections after a while.

In my opinion all the clues point towards the same problems: our basic systemic functions don't work. Before anyone starts stuffing themselves with meds, I would focus on getting the basics up and running first:

1. Treat mitochondial dysfunction, get ATP running.
2. Get methylation and detox pathways running.

Actually, (1) might be included in (2), but it's probably more effective to do both. Without these basic biological functions working, immune systems, endocrine system, neurology and whatever else simple can't function. You can't make neurotransmitters, toxins accumulate, cells die, muscles don't work, hormones don't get produced, membranes leak, and neurons fire eradically.

After taking care of these basic functions, you can augment with drugs. But in my opinion, there is never going to be a drug that cures us. Only hardcore lifestyle management will improve our condition. I am talking about pure diet, sleep, no stress, sunshine, fresh air, light exercise, social support and supplements. It's the hard way or the highway.

It starts with screwed up genetics, then environmental insults such as stress, pollution, vaccines, drugs, infections aso. At some point the equilibrium is lost, and the basic functions break down. That is the only way to explain the myriad of symptoms we get: dysfunction at the lowest possible level. The lower the level of dysfunction, the more symptoms you will see. So it is like building a house, you have to work on the foundation first. Layering bricks on a weak foundation will not build you a strong house. Just my opinion.

 

[heapsreal]

Adreno, maybe i didnt word my reply well, not rocket science, i was referring the treatments available to us now. I think understanding the ins and outs of cfs/me probably is harder then rocket science. I think before we can reach the rocket science of treating our illness there needs to be alot more research and studies with lots of testing per patient. I agree with the handful of things we can currently do like infections, immune system, mitochondria, diet etc. I think with current treatments one would have to be very lucky to get to 100%, doing whats already mentioned above if done right i think can help alot of us. I still think we need to be our own doctors mostly and do our own research with supps and finding particular docs to help us with certain things like say adrenal fatigue/dysfunction etc or some other alternative specialty??

 

[adreno]

heaps, I think we mostly agree. My point is that the details of the underlying biochemistry is very complex, but the principle (that basic biological functions don't work) is pretty simple and understandable. Treating it is not simple though, and requires a lot of trial and error, because so many factors are involved. And yes, sadly I agree that we have to educate our selves, and be our own doctors, and some specialists might be able to help. But PR is truly a great resource for us.

 

[adreno]

Phoenixburger, in your case I would hazard a guess that the drugs you took destroyed your mitochondria. Many drugs are toxic to mitochondria, this is quite a common problem. Without sufficient working mitochondria, you can't make ATP and without ATP nothing is going to work the way it should. Immune function falters, membranes cannot uphold their resting potential, neurons fire eradically, muscles ache. So as I said, I would focus on the basics first. Just an idea.

 

[maddietod]

Adreno, can you point me to threads here about mitochondria? How to figure out if they're wonky, what to do if they are?

 

[CallieAndToby]

Adreno, maybe i didnt word my reply well, not rocket science, i was referring the treatments available to us now. I think understanding the ins and outs of cfs/me probably is harder then rocket science. I think before we can reach the rocket science of treating our illness there needs to be alot more research and studies with lots of testing per patient. I agree with the handful of things we can currently do like infections, immune system, mitochondria, diet etc. I think with current treatments one would have to be very lucky to get to 100%, doing whats already mentioned above if done right i think can help alot of us. I still think we need to be our own doctors mostly and do our own research with supps and finding particular docs to help us with certain things like say adrenal fatigue/dysfunction etc or some other alternative specialty??

I'm too sick to "be my own doctor" or do any research. I can barely read and my mind can't take all this in or process it. This is all very stressful and overwhelming for me. I think our doctors should be the ones doing the work, it shouldn't be on us, that is asking far too much. And with all the differing opinions and recommendations, it becomes very very confusing. It's very very stressful for me. Everybody has something different to say and it's not possible to try it all.

SOC Thank-you for your kind and gentle response. Miami was our last resort, no money, no savings, can't travel, and my dad recently left my mother so she is not well (probably my fault), I could not possibly ask her to see somebody else. Since I was 15 I've see tons of doctors and tried tons of meds and treatments (wasted their money and time), I just could not possibly burden her again. We talked to a lot of patients prior to miami, they were all klimas patients though, and we thought this was the right fit.

I think I am declining b/c of running on adrenaline all the time, can't sleep, and the sudden onset of ocd 3 years ago which has become very very severe and causes me to be anxious 24/7. But to clarify, I didn't have ocd until after the CFS and after being bedridden. The adrenaline is some form of severe hyperadrenic POTS that came on suddenly in 08, prior to that I was doing well in 07 and would have been considered a higher functioning patient. I did come down with mono and strep which may have triggered all this.

My mom works full time so I have to set up appt's, get labs done, keep records together, take care of disability stuff, fill prescriptions, update health timeline, this consumes all my energy. Reading makes me very very fatigued, it's just something that I can't do much of. Need to rest now. Thank-you for your responses, it is always appreciated.

 

[adreno]

Adreno, can you point me to threads here about mitochondria? How to figure out if they're wonky, what to do if they are?

I don't have any links handy, but I remember heaps has a good thread on it. If he is nice, he will post the link here