Has Anyone Seen Dr. Kogelnik?

[Jacque]

Hi All...I am new here.. my first chat room EVER after being ill for almost 40 years... Been diag with everything from RA, FM, CFS, Lupus, Chiari Malformation, Hashimotos, Lyme,ETC on my quest to find to find out what in the HELL is wrong with me...I have FINALLY hit the nail on the head thanks to Dr. Kogelnik. I saw him for the first time a few months ago and came home and wrote him a two page letter ( have NEVER done that and have seen prob over 100 docs since getting sick in early adolescence). The man is so humble, intelligent, and HONEST! He didn't even have to run anymore blood work on me to tell that I had ME. I am going for my first infusion of Rituxan this Monday. If you were to tell me 10 years ago that I was going to put Chemo into my body I would have told you you were NUTS...But I just like Irene have NO quality of live and live on my couch or bed... I am 51 and when I look at the average age of severe ME cases being 55 ... I figure I better get busy than wait around for the results. If my lifetime of suffering, agony, and judgement has been to be a part of a hopeful understanding and eventually cure of this THEIF of LIFE then ... I guess it would be worth it. Maybe my question of "why someone like me"? has finally been answered... and that is because you have the GUTS and fire to live and to help others.... Maybe the Rituxan will work ... maybe it won't... but I have to try. It is my understanding that a third see NO difference..a third get somewhat better...and a third get WELL... Crap at this point I would be happy with "somewhat".... I just want to be able to play with my new grandson! I also understand that you do not start to feel a difference until 6 to 12 weeks and there are relapses...and that is the challenge. The bone marrow pumps out new B cells beginning at 2 weeks after chemo...and the challenge is to keep those from getting reinfected... I asked Dr. K if I could take an Anti Viral in addition to the chemo and he was all for it... I am in LOVE with Dr. Kogelnik... I hesitated in going to see him because I have seen so many arrogant A HOLES in my life (even flew to MD to see Dr. Shoemaker...what a JOKE) but Dr. K is the REAL DEAL... Not in his EGO and on a mission to find out how to get us wonderful people back to LIFE.... I would not hesitate to see him if I were you!! I feel like an expert in this area... lol ;( If you are afraid to try the Rituxan the studies should be complete in about 1 1/2 years... and yes he does use Famvir and Valcyte also, however he told me that females especially get some yucky side effects from them. I will let you all know how my first infusion goes... I get 6 over 15 months! Stay tuned...and keep me posted on how all of you are doing!! Hugs... Jacque

 

[merylg]

Wow Jacque...I wish you all the best for your treatment & look forward to hearing how it all goes for you...

 

[Jacque]

Hi Again!!
Well had my first Rituxan treatment on Monday and all went smoooothly - Thank God!! The WORST part of the whole thing other than the anxiety of Chemo was them pulling off the tape to remove the IV.. It was really not a big deal aside from the inconvenience of havin to go and stay there for 2 days. I feel VERY optimistic about what I am doing, which is unusual for me as I have become quite JADED over the last 35 years of illness. The nurses were GREAT and very attentive. Afterward my skin hurt and my pain level increased but that was to be expected. In my mind that means it pissed off something...which is GOOD. I just visualized the diseased nasty B Cells croaking over and dying!
If you are considering on traveling to see Dr. Kogelnick I would highly recommend it! He is the best doctor I have EVER seen. He has gotten on the phone and spoken with me twice by appt. and do you know I wasn't even CHARGED! Usually they require that you whip out your CC first before you even get patched through to a Dr. He is in this for all the right reasons and I feel like I am in such good hands. He did make an interesting comment about Type A personalities are the ones that usually find him. At first he wondered if only Type A's get this illness then it occured to him that it is the type A's who don't just roll over, take their drugs, and lay on the couch and not continually SEARCH for answers. We are determined little S***'s!!! Others just give up after being told they are nutty or there is no answer...they remain complacent or check out of here unfortunately. Dr. K says he estimates that not 1 million but 4 million in US have this horrid illness and estimated 8 million worldwide. CRAZY...
So I have another infusion in 2 weeks and then 4 more over the next 14 months. Desperate is an understatement.
There was a boy there in his 20's from Idaho and people are flying in from all over ... India, Canada, Norway, etc. I feel so blessed to live 4 hours from him!!
I will keep you all posted on my progress...this Type A is gonna beat this thing!!!!! This livin on the couch is NOT OK!! I want to burn the damn thing!!
Strength and better days to all of you! Jacque

 

[joyce.swing]

Jacque,
It is now 2 1/2 months later. I would love an update on how the treatment is going, what your experience is with side effects, and benefits, if any, this soon.

 

[August59]

Jacque,
It is now 2 1/2 months later. I would love an update on how the treatment is going, what your experience is with side effects, and benefits, if any, this soon.

Hey joyce - You may want to jump over to this thread to follow Jacque's progress as it appears to stay pretty current.

http://forums.phoenixrising.me/index.php?threads/good-things-happening-am-i-a-responder.19076/

 

[Jacque]

Jacque,
It is now 2 1/2 months later. I would love an update on how the treatment is going, what your experience is with side effects, and benefits, if any, this soon.

Joyce...not sure if you saw my post today... Had my 3rd infusion yesterday... I am back to TERRIBLE... I will do my best to post weekly positive or negative... Jac

 

[Pam123]

I was wondering if anyone on this forum is seeing Dr. Kogelnik in California and, if so, have they had success with his treatment(s)?

My daughter has been seeing him for a few months now and he has started her on an anti-viral. He seems very knowledgeable but I am wondering what other peoples experiences have been.


Pam

 

[RUkiddingME]

Hi Pam;
Check out the following thread titled Has anyone seen Dr. Kogelnik which might answer some of your questions. I'm also a patient of his and find him very knowledgable regarding anti-viral treatment and Rituximab. I just started on Valcyte two months ago so it's too soon to tell if it will be successful of not. As for Dr. K. I am very confident I am seeing the right person to treat my HHV-6 and EBV. If you just type Kogelnik in the search line you will also find some other discussions. Keep in mind everyone has different opinions and at the end of the day it's what you think of the doctor that matters. Good luck!

http://forums.phoenixrising.me/index.php?threads/has-anyone-seen-dr-kogelnik.6148/

 

[Pam123]

Hi Pam;
Check out the following thread titled Has anyone seen Dr. Kogelnik which might answer some of your questions. I'm also a patient of his and find him very knowledgable regarding anti-viral treatment and Rituximab. I just started on Valcyte two months ago so it's too soon to tell if it will be successful of not. As for Dr. K. I am very confident I am seeing the right person to treat my HHV-6 and EBV. If you just type Kogelnik in the search line you will also find some other discussions. Keep in mind everyone has different opinions and at the end of the day it's what you think of the doctor that matters. Good luck!

http://forums.phoenixrising.me/index.php?threads/has-anyone-seen-dr-kogelnik.6148/

RUKiddingME:

Thanks for the info.

We have been vvery happy with Dr. Kogelnik (I know you can find different opinions on any doctor). My daughter also has been on an anti-viral for only 2 months so again, it is too soon to tell if it will work.

I also am confident that my daughter is seeing the right person for her. I guess I just wanted to hear some words of encouragement from someone who had seen him and is feeling better.

Thanks for your response and good luck to you also!

Pam

 

[SanDiego#1]

Dr. Kogelnik Talk Tuesday 4/19 12:30-1:30pm, Mountain View, CA

Dr. Kogelnik, the Infectious Disease doctor who did the groundbreaking work with Dr. Jose Montoya on anti-virals and Chronic Fatigue Syndrome at Stanford, will be giving a free talk on CFS.

For those of you who are local and interested... Dr. Kogelnik will be giving a 30 minute talk on CFS with Q and A by the Women's Hospital at El Camino Hospital's Mountain View campus. For most patients who've seen him in the clinic - a lot of this will be review. All are welcome. It would be great to show the hospital that there is a strong community interest for this topic.

El Camino Women's Hospital - Lunch N Learn: "Re-evaluating Chronic Fatigue Syndrome and Immunology"
Tuesday, April 19
12:30 1:30pm
El Camino Main Hospital, conference room G

Willow

The first Dr. to examine me when I was so sick over 20 years ago was an Infectious Disease Dr. He saved my life. I had Mono, EBC, CMV, Pesticide poisoning and and Mercury toxicity from working in a Dental Practice. He was doing a trial on Immune Globulin for Aids patients and started seeing patients with CFIDS. He started me on Immune Globulin after tests came back I was positive for everything. Within 3 weeks of my first dose of Immune Globulin-
I started to improve. This man Dr. Richard DuBoise was in Atlanta, Ga. He now is treating Aids only as this was pretty predominant then.I would say an Infectious Disease Dr. would be a good place to start. I do not know Dr. Kogelnik.I see a CFIDS Dr. now plus an Environmental, and Infectious Disease physician. Each one seem to have their EXPERTISE. At least they will read each others tests. I am from California. I would think you have the best of the best out there. We do not have as many to choose from here. Please let me know how he interprets your illness.

San Diego #1

 

[IreneF]

I also see Dr. K. I think he is as knowledgeable as any MD who is treating this disease. He is very science-oriented as well as being very easy to talk to. However, CFS is a difficult disease to treat and I don't think there are any quick fixes or sure cures. You have to be prepared to work with him over the long haul, and the medications are astonishingly expensive.

 

[Pam123]

IreneF:

Thanks for your reply. We really are happy with Dr. K. Although my daughter has only been seeing him for a few months, he has understood her illness more than any other doctor she has seen (and believe me, she has seen many doctors!!!)

I know there is no magic, quick cure. He told us that on my daughter's first appointment. He told us to prepare for a marathon, not a sprint.

If I may ask, what treatment are you on and have you noticed any improvement?


Pam

 

[5150]

Here's the latest info from Kogelnik: The trial he's been trying to get started is for valomaciclovir. He hopes it will be as effective as Valcyte with fewer side effects. The trial has gotten delayed, though, and he now doesn't now when it will happen.

What's likely to happen first is a trial of rituxan in combination with valcyte. But it's going to be a self-pay trial, and the rituxan alone will cost between ten and twenty thousand dollars, plus the cost of administering it, plus the valcyte.

I don't see how people can afford to pay this kind of money to be in a trial. It's mind-boggling to me that at any stage of a working person's life, one can put out $20Grand for such medical help (rituxan, ampligen). Now that i'm older and experiencing the full wrath of this illness, my extra money was spent long ago on trying to get well, albeit not twenty thousand bucks at a time; anyway, the savings is depleted in older patients. It's very frustrating: to be at the sickest point and with the least amount of money / a bad combination. I expect to die of heart disease or cancer. What a way to live.

 

[IreneF]

IreneF:

Thanks for your reply. We really are happy with Dr. K. Although my daughter has only been seeing him for a few months, he has understood her illness more than any other doctor she has seen (and believe me, she has seen many doctors!!!)

I know there is no magic, quick cure. He told us that on my daughter's first appointment. He told us to prepare for a marathon, not a sprint.

If I may ask, what treatment are you on and have you noticed any improvement?


Pam

I don't want to discuss the specifics of my treatment right now. I have noticed improvements but I also just had a major crash and spent ten days in bed. I'm hoping this is a case of two steps forward, one step back, but who knows? I went downhill for about six years, so I think it's going to be more than a few months before I can truly say I'm progressing.

I think the key is patience and persistence. Good luck!

 

[Kati]

I don't see how people can afford to pay this kind of money to be in a trial. It's mind-boggling to me that at any stage of a working person's life, one can put out $20Grand for such medical help (rituxan, ampligen). Now that i'm older and experiencing the full wrath of this illness, my extra money was spent long ago on trying to get well, albeit not twenty thousand bucks at a time; anyway, the savings is depleted in older patients. It's very frustrating: to be at the sickest point and with the least amount of money / a bad combination. I expect to die of heart disease or cancer. What a way to live.

The majority of clinical trials' drugs are covered by big pharma/ by the trial. Ampligen is an exception. rituximab loosing its patent soon causes a problem to get a trial funded, and that is why we need to fundraise in order to get a larger trial to determine if Rituxan is effective in a larger group of patients.
However there is the counter argument that with our disease, nothing is funded, and that's not right. In Canada I can say it's discriminatory.

It would sound reasonnable to me that governments fund this trial. They owe us 3 decades of decent research.

 

[joyce.swing]

I have seen Dr. Kogelnik recently and what I have to say about the visit is very similar to posts I read earlier in this thread; so I do not want to repeat too much. He is very personable. I liked him. He is very much a believer that the root cause of ME/CFS is viral. (He mentioned that he also thought all autoimmune disorders probably have a viral etiology). I believe he is most interested in research. A good part of the session was spent describing his research. I personally found it difficult to understand quite what he was saying. However, he was happy to reiterate.
I am to have some more tests to evaluate my current viral load. He is recommending Valcyte for me. I am not ready to take antivirals without doing more research. I have a moderately severe case of ME/CFS. Disabled for 20 yrs. Have a bad case of POTS/orthostatic hypotension. currently taking 1 L of IV fluids three times a week - which takes a lot of time b/c I go to an infusion center. Consulted with Dr. Kogelnik on my problems with O.H. - he had no suggestions beyond what I am already doing. He can give IV fluids in the office - a real plus if I lived closer to him.

He also plans to be able to measure VO2 max in the future and counsel patients with appropriate exercize.

I am new to this forum and have a couple of questions (which do not really belong here, but I am not sure where they belong).

Is there any way to find members who live near me? I would gather not....
Is there any place where information is shared about primary care MDs who are recommended?
Any thread on treatment at Vanderbilt?
Thanks so much

 

[SanDiego#1]

IreneF:

Thanks for your reply. We really are happy with Dr. K. Although my daughter has only been seeing him for a few months, he has understood her illness more than any other doctor she has seen (and believe me, she has seen many doctors!!!)

I know there is no magic, quick cure. He told us that on my daughter's first appointment. He told us to prepare for a marathon, not a sprint.

If I may ask, what treatment are you on and have you noticed any improvement?


Pam

Pam- LETS ALL FACE IT-THERE IS NO CURE-NEVER MIND THE QUICK CURE!!!!! I FOUND THIS OUT LONG AGO.
THE MONEY SPENT ON THESE EXPENSIVE DRUGS AND DOCTORS ARE RIDICULOUS. I HAVE DONE IT!!!!!!
THE ONLY THING THAT HAS REALLY HELPED ME IS GAMMA GLOBULIN AND B-12. NEITHER ONE OF THESE HAS TO BE EXPENSIVE.ALSO A GLUTEN FREE DIET.

HOPE YOU AND YOUR DAUGHTER IMPROVE.

SAN DIEGO #1

 

[SanDiego#1]

The majority of clinical trials' drugs are covered by big pharma/ by the trial. Ampligen is an exception. rituximab loosing its patent soon causes a problem to get a trial funded, and that is why we need to fundraise in order to get a larger trial to determine if Rituxan is effective in a larger group of patients.
However there is the counter argument that with our disease, nothing is funded, and that's not right. In Canada I can say it's discriminatory.

It would sound reasonable to me that governments fund this trial. They owe us 3 decades of decent research.

Katy- I totally agree with you. I know some of the Drs do want to help. However the charge for these drugs from the drug companies and then the Dr. to prescribe is outrageous. I too have been sick for over 20 years- I cannot pay that for anything and will not!!!!!

San Diego #1

 

[SanDiego#1]

I don't want to discuss the specifics of my treatment right now. I have noticed improvements but I also just had a major crash and spent ten days in bed. I'm hoping this is a case of two steps forward, one step back, but who knows? I went downhill for about six years, so I think it's going to be more than a few months before I can truly say I'm progressing.

I think the key is patience and persistence. Good luck!

Irene F
When you can share your improvements. PLEASE SHARE- It helps all of us.

San Diego#1

 

[SanDiego#1]

I have seen Dr. Kogelnik recently and what I have to say about the visit is very similar to posts I read earlier in this thread; so I do not want to repeat too much. He is very personable. I liked him. He is very much a believer that the root cause of ME/CFS is viral. (He mentioned that he also thought all autoimmune disorders probably have a viral etiology). I believe he is most interested in research. A good part of the session was spent describing his research. I personally found it difficult to understand quite what he was saying. However, he was happy to reiterate.
I am to have some more tests to evaluate my current viral load. He is recommending Valcyte for me. I am not ready to take antivirals without doing more research. I have a moderately severe case of ME/CFS. Disabled for 20 yrs. Have a bad case of POTS/orthostatic hypotension. currently taking 1 L of IV fluids three times a week - which takes a lot of time b/c I go to an infusion center. Consulted with Dr. Kogelnik on my problems with O.H. - he had no suggestions beyond what I am already doing. He can give IV fluids in the office - a real plus if I lived closer to him.

He also plans to be able to measure VO2 max in the future and counsel patients with appropriate exercize.

I am new to this forum and have a couple of questions (which do not really belong here, but I am not sure where they belong).

Is there any way to find members who live near me? I would gather not....
Is there any place where information is shared about primary care MDs who are recommended?
Any thread on treatment at Vanderbilt?
Thanks so much

Do the Saline IV help your POTS???? I would go to the Health Rising Website. They have alot of new info on what is new and who does it.
San Diego #1