Dr. Montoya no longer seeing patients/only research!

[Gingergrrl]

I called Stanford today to try to get onto the waiting list to see Dr. Montoya and the new patient coordinator, Rachel, told me that he is no longer seeing any patients and only doing research! I had no idea and was really disappointed. She said the waiting list is 6 mos to one year just to see one of the physician assistants. I am not really sure if I should bother as it would be a six hour drive up to Stanford.

Rachel referred me to Dr. Kogelnick (about the same length of drive) but then said she is not sure if he is taking new patients? Does anyone know if he is taking new patients or currently see him? I have read mixed reviews on the board (as I have with all the doctors) and trying to make a decision re: who to see.

 

[globalpilot]

As of a few months Kogelnik was taking new patients.
Best to call them and ask.

 

[Seven7]

@Gingergrrl43 There is no cure so it really doesnt matter who you see, is the tests they offer that is important, at least they can help you with your GP so they cooperate on symptoms management. You can laways hunt dowm specific doctor later, but you can start somewhere. When I started I didn't care, I went with the first that could see me. Have not regret it since.

My 2 cents.

 

[Gingergrrl]

@Gingergrrl43 There is no cure so it really doesnt matter who you see, is the tests they offer that is important, at least they can help you with your GP so they cooperate on symptoms management. You can laways hunt dowm specific doctor later, but you can start somewhere. When I started I didn't care, I went with the first that could see me. Have not regret it since.

My 2 cents.

@Inester7 My problem is that I have not been able to get in with ANY cfs specialist no matter how hard I try. I know there is no cure but I agree with you that I would like all the proper tests done so my tx can be more focused.

I have a great ND and she will run tests that I ask for but I don't know what else to ask for. I read so many terms and meds on this board and wonder if these are things that could be helping me if I could get the right care sooner while still relatively early in the illness.

 

[Sushi]

@Gingergrrl43

Last I heard (a few months ago) Dr. Kogelnik was not taking new patients but Dr. Kaufman (in the same practice but with a somewhat different approach I'm told) is taking new patients. You could check here.

Sushi

 

[Gingergrrl]

@Gingergrrl43

Last I heard (a few months ago) Dr. Kogelnik was not taking new patients but Dr. Kaufman (in the same practice but with a somewhat different approach I'm told) is taking new patients. You could check here.

Sushi

@Sushi Can you tell me what Dr. Kaufman's approach is and do you know if anyone on the board has seen him?

ETA: I am also tagging @NK17 as I think he sees Dr Kaufman?

 

[SOC]

@Gingergrrl43
There is a new doctor/colleague of Dr Klimas and Dr Rey at INIM. She is now taking patients. You could check there, too.

 

[Gingergrrl]

@Sushi Thanks for your help and I am in the process of getting more info re: Dr. Kogelnick and Dr. Kaufman.

@SOC I am too ill to travel to Florida right now and my ideal choice is someone within CA. I am appreciative of the info though and am keeping everything in the back of my mind as I am pursuing different options.

 

[Sushi]

@Sushi Can you tell me what Dr. Kaufman's approach is and do you know if anyone on the board has seen him?

ETA: I am also tagging @NK17 as I think he sees Dr Kaufman?

Replied by conversation.

 

[SOC]

@SOC I am too ill to travel to Florida right now and my ideal choice is someone within CA. I am appreciative of the info though and am keeping everything in the back of my mind as I am pursuing different options.

If you get to the point where you can't get a doctor in CA and need to spread your net wider, be aware that there are ways to travel by air with ME. We find the air travel to Miami to be much less difficult physically than the 6-7 hr car drive to our previous specialist. The biggest trick is to tell them you need wheelchair assistance when you reserve your ticket. Don't do any walking or lifting in the airport, the assistants will do all that for you. I usually put in earbuds, close my eyes, and listen to a book most of the time I'm in air travel mode.

I hope you do find a doctor closer to home. That's what we all want, isn't it. Unfortunately, there's just not enough of them to go around.

 

[Gingergrrl]

If you get to the point where you can't get a doctor in CA and need to spread your net wider, be aware that there are ways to travel by air with ME. We find the air travel to Miami to be much less difficult physically than the 6-7 hr car drive to our previous specialist. The biggest trick is to tell them you need wheelchair assistance when you reserve your ticket. Don't do any walking or lifting in the airport, the assistants will do all that for you. I usually put in earbuds, close my eyes, and listen to a book most of the time I'm in air travel mode.

I hope you do find a doctor closer to home. That's what we all want, isn't it. Unfortunately, there's just not enough of them to go around.

@SOC Thanks and I may end up going that route. I am still trying to gather as much info as I can and hope to make a decision very soon.

 

[NK17]

Hi @Gingergrrl43 Dr. Kogelnik is indeed my ME specialist.

Last time I spoke with Lorie (his RN nurse), about a month ago, she told me that although he is very busy with research and grants submissions on top of the clinical practice, he's still seeing patients and Dr. David Kaufman is too and there is ongoing cooperation between the two of them.

From the little searching and reading on the net about Dr. Kaufman he seems an excellent doctor with 30 years worth of experience in internal and infectious disease medicine (HIV and Lyme included), but I don't know him personally.



I've also seen Dr. John Chia in Torrance (back in 2012). He is the ME/CFS doctor researcher focusing on EV (cosackie and echo viruses). He also is a cosignatory of the ICC (international consensus criteria on ME).

Although he is an excellent and caring doctor I'm not currently under his care.

There is a patient of his who has a blog (quixoticmeblogspot.com) on which he writes extensively about treatments and progress, or lack of it, with Dr. Chia.

IMHO you should ask your ND to run some basic herpes viruses titers blood tests (EBV, HHV6, CMV, HSV1 and 2) as per Dr. Montoya's clinic and possibly a NK function test (Quest Diagnostics is the lab used for these test by Dr. Kogelnik) for a start, if you haven't already have them done.

If I was you I'd call Dr. Kog and Dr. Kau and get in their clinic asap, either doctor I'm sure would be great.

As far as treatments Dr. Kogelnik is very much focused on AV antivirals, if that is your case, so you need to judge before hand if you can and are willing to take them. This is a general statement that I'm making, each one of us is different and has a different ME picture, many roads lead to ME/CFS ...

If you're happy with your ND you can see Dr. Kog or Dr. Kauf or Dr. Chia in parallel and try to coordinate the different interventions.

I hope I'm being of help, if you'd like to have more in depth info don't hesitate to pm me. I'll do my best to help you .

 

[Gingergrrl]

Hi @Gingergrrl43 Dr. Kogelnik is indeed my ME specialist.

Last time I spoke with Lorie (his RN nurse), about a month ago, she told me that although he is very busy with research and grants submissions on top of the clinical practice, he's still seeing patients and Dr. David Kaufman is too and there is ongoing cooperation between the two of them.

From the little searching and reading on the net about Dr. Kaufman he seems an excellent doctor with 30 years worth of experience in internal and infectious disease medicine (HIV and Lyme included), but I don't know him personally.



I've also seen Dr. John Chia in Torrance (back in 2012). He is the ME/CFS doctor researcher focusing on EV (cosackie and echo viruses). He also is a cosignatory of the ICC (international consensus criteria on ME).

Although he is an excellent and caring doctor I'm not currently under his care.

There is a patient of his who has a blog (quixoticmeblogspot.com) on which he writes extensively about treatments and progress, or lack of it, with Dr. Chia.

IMHO you should ask your ND to run some basic herpes viruses titers blood tests (EBV, HHV6, CMV, HSV1 and 2) as per Dr. Montoya's clinic and possibly a NK function test (Quest Diagnostics is the lab used for these test by Dr. Kogelnik) for a start, if you haven't already have them done.

If I was you I'd call Dr. Kog and Dr. Kau and get in their clinic asap, either doctor I'm sure would be great.

As far as treatments Dr. Kogelnik is very much focused on AV antivirals, if that is your case, so you need to judge before hand if you can and are willing to take them. This is a general statement that I'm making, each one of us is different and has a different ME picture, many roads lead to ME/CFS ...

If you're happy with your ND you can see Dr. Kog or Dr. Kauf or Dr. Chia in parallel and try to coordinate the different interventions.

I hope I'm being of help, if you'd like to have more in depth info don't hesitate to pm me. I'll do my best to help you .

@NK17 your response was very helpful and I will pm you either later tonight or tomorrow and also respond more here too a bit later.

 

[NK17]

@NK17 your response was very helpful and I will pm you either later tonight or tomorrow and also respond more here too a bit later.

Very happy to be of help @Gingergrrl43.

Will exchange thoughts and opinions with you whenever you have some energy to spare .

By the way if I'm not wrong we both share a common past history of EBV ;(.

I had an awful case of IM (infectious mononucleosis in my early teens), from which I now know I've basically never recovered.

It took me 30 years to get to Dr. Kogelnik and follow back on the steps of my ME...

In your case I understand it to be a more recent event, so the sooner you get some AV treatment the better chance you'll have to re-establish an immunological balance, if such a thing exist in PWME ...

 

[Gingergrrl]

Very happy to be of help @Gingergrrl43.

Will exchange thoughts and opinions with you whenever you have some energy to spare .

By the way if I'm not wrong we both share a common past history of EBV ;(.

I had an awful case of IM (infectious mononucleosis in my early teens), from which I now know I've basically never recovered.

It took me 30 years to get to Dr. Kogelnik and follow back on the steps of my ME...

In your case I understand it to be a more recent event, so the sooner you get some AV treatment the better chance you'll have to re-establish an immunological balance, if such a thing exist in PWME ...

@NK17, I just posted in another thread but in case you didn't see it, I wanted to let you know that I got an appt with Dr. Kaufman at OMI for mid-July!!! Hearing about your experiences and feedback were very helpful and I really appreciate it.

To answer your questions, although I had several "triggers" of my CFS the one that truly caused it and pushed it over the edge IMO was a severe case of mono/EBV in 2012 with the cardiac/dysautonomia symptoms starting in Jan 2013. I have very high EBV titres run by my ND but have not been checked for the other viruses yet.

I have never taken an anti-viral outside of the natural ones like monolaurin, maitake mushrooms, oil of oregano, zinc, etc. I do not have any local doctor knowledgeable and/or willing to prescribe me an anti-viral (nor did I have all the adequate tests and I felt like I would be just guessing at which one, which dosage, etc.)

I feel so hopeful now that I will be going to a place on the cutting edge of CFS research who can run the right tests and give me some guidance how to proceed.

ETA: I forgot to respond from your earlier post that I decided not to see Dr. Chia (even though he is local to me) b/c he seems so focused on only the enterovirus as the cause and to only prescribe Equilibriant which I do not feel is the right path for me. I read the blogs of people who have seen him and although he seems like a medical genius, I feel like his focus is more narrow than what I am looking for.

 

[jsfm]

I called Stanford today to try to get onto the waiting list to see Dr. Montoya and the new patient coordinator, Rachel, told me that he is no longer seeing any patients and only doing research! I had no idea and was really disappointed. She said the waiting list is 6 mos to one year just to see one of the physician assistants. I am not really sure if I should bother as it would be a six hour drive up to Stanford.

I received a call today from one of the physician assistants who works under Dr. Montoya and she said she could see me as a new patient in as little as 2 weeks. If you are still interested in seeing a provider who works with Dr. Montoya you might want to give the office a call again.

Best of luck!

 

[Gingergrrl]

@jsfm I actually ended seeing a different doctor who I was very happy with so no longer trying to get into Stanford to see the PA's working under Dr. Montoya.

But thank you for thinking of me and please keep us posted here on the board if you end up going. I am very interested in hearing different MD approaches and how they compare.

Best wishes to you!

 

[ebethc]

Hi @Gingergrrl43 Dr. Kogelnik is indeed my ME specialist.

IMHO you should ask your ND to run some basic herpes viruses titers blood tests (EBV, HHV6, CMV, HSV1 and 2) as per Dr. Montoya's clinic and possibly a NK function test (Quest Diagnostics is the lab used for these test by Dr. Kogelnik) for a start, if you haven't already have them done.

If I was you I'd call Dr. Kog and Dr. Kau and get in their clinic asap, either doctor I'm sure would be great.

As far as treatments Dr. Kogelnik is very much focused on AV antivirals, if that is your case, so you need to judge before hand if you can and are willing to take them. This is a general statement that I'm making, each one of us is different and has a different ME picture, many roads lead to ME/CFS ...

@NK17 - what are AV antivirals? Like valcyte?

I'm considering going to Drs Kog/Kau... I actually just called their ofc yesterday to get info, and I think I could get in fairly quickly w either one of them.. VERY expensive, and they don't take insurance. Dr Montoya sends new patients to his Physician Asst's and the wait is STILL 6 mos. to 1 year to get in! My impression is that Dr Montoya's clinic and the Dr Kog/Kau clinic tend to give patients similar protocols - do you know if that's true? I believe that they are research partners..

thanks

 

[NK17]

@NK17 - what are AV antivirals? Like valcyte?

I'm considering going to Drs Kog/Kau... I actually just called their ofc yesterday to get info, and I think I could get in fairly quickly w either one of them.. VERY expensive, and they don't take insurance. Dr Montoya sends new patients to his Physician Asst's and the wait is STILL 6 mos. to 1 year to get in! My impression is that Dr Montoya's clinic and the Dr Kog/Kau clinic tend to give patients similar protocols - do you know if that's true? I believe that they are research partners..

thanks

Hi @ebethc and sorry for the late reply.

Yes AV stands for antivirals such as Valcyte, Famvir, Valtrex (active against different strains of viruses in the herpes family).

I'm aware that Dr. Montoya is not seeing patient personally anymore and of the long waiting time to get in with his PA.

I presume that Montoya's clinic @ Stanford accept many insurance plans, while as you know both doctors @ OMI don't accept any.

As far as treatments' protocols I can say that Dr. Ko is pretty much focused on AV and he's also terribly busy with research and grants acquisitions.

From what I hear from other patients Dr. Ka is more reachable.

It's a tough call, they are all great ME doctors and you can't go wrong with any of them.

I also think that you have to consider your clinical picture, if you have any, have you had any preliminary viral titers tested, do you suffer chronic pain and any other co-morbid diagnoses etc.

I know Montoya sometimes prescribes an uncommon anti-inflammatory to some of his patients (colchicine).

The financial part is also a concern, but sometimes patients get to a ME specialist after having spent large sums of money for doctors and therapies which have been of no help.

Not sure we can call them research partners. Dr. Ko has set up an amazing dream team of scientists for the END ME project; the head of the scientific board is Dr. Ron Davis from Stanford.

Montoya's research team has just published a seminal paper on brain abnormalities and he probably has many others in the pipeline.

 

[ebethc]

Hi @ebethc
Yes AV stands for antivirals such as Valcyte, Famvir, Valtrex (active against different strains of viruses in the herpes family).

@NK17 - are these AV's more effective than monolaurin? not sure if you can answer this..

Hi @ebethc
I know Montoya sometimes prescribes an uncommon anti-inflammatory to some of his patients (colchicine).

@NK17 - have you tried colchicine? what was your experience?