Has Anyone Seen Dr. Kogelnik?

[Pam123]

Wouldn't it depend on what caused the CFS/ME to determine if it could be "cured" or not? For example, my daughter's illness happened right after a viral illness. The doctors are telling us that they believe, with the right kind of treatments, she will get better in about a year.

I know many of you have been sick for years and I am not sure how your illnesses started but I refuse to think that our doctors are wrong and they will not be able to help my daughter.

In any event, I would never tell anyone that there is no cure and no hope. Maybe it's just because we have only been going through this for a relatively short time, but there are many things yet to try before we are willing to quit trying.

I believe in Dr. Kogelnik and I believe he is the right person to help my daughter.

 

[SanDiego#1]

Wouldn't it depend on what caused the CFS/ME to determine if it could be "cured" or not? For example, my daughter's illness happened right after a viral illness. The doctors are telling us that they believe, with the right kind of treatments, she will get better in about a year.

I know many of you have been sick for years and I am not sure how your illnesses started but I refuse to think that our doctors are wrong and they will not be able to help my daughter.

In any event, I would never tell anyone that there is no cure and no hope. Maybe it's just because we have only been going through this for a relatively short time, but there are many things yet to try before we are willing to quit trying.

I believe in Dr. Kogelnik and I believe he is the right person to help my daughter.[/quot

PAM- I HOPE YOU ARE RIGHT AND I AM WRONG. MY ILLNESS HAPPENED AFTER A VIRAL ILLNESS ALSO.I AM SAYING THERE IS NO CURE NOW.!!!!! JUST AS THERE IS NO CURE FOR PARKINSON, ME, LUPUS.CMV,ME.EBV
HOWEVER THERE ARE TREATMENTS!!!!!!
GLAD YOU HAVE A DR YOU BELIEVE IN.

SAN DIEGO

 

[joyce.swing]

San Diego#1,
Thanks
Yes the Saline IV does help - I have not always been convinced of that. Actually what I need help with is orthostatic intolerance - on standing my BP was going down to 70/50 and I couldnt handle that. So, although I do have a diagnosis of POTS I am not really clear if this what happens when POTS gets bad, or if this is a part of the broader ANS problem.
I have sometimes had 2 liters with no change in standing BP. - but after sticking with it - now three times a week - I am feeling over all better than before and my BP is staying higher for a while (1 1/2 days) and the pulse pressure is better (systolic - diastolic) which I believe is a sign of being less dehydrated.

 

[SanDiego#1]

San Diego#1,
Thanks
Yes the Saline IV does help - I have not always been convinced of that. Actually what I need help with is orthostatic intolerance - on standing my BP was going down to 70/50 and I couldnt handle that. So, although I do have a diagnosis of POTS I am not really clear if this what happens when POTS gets bad, or if this is a part of the broader ANS problem.
I have sometimes had 2 liters with no change in standing BP. - but after sticking with it - now three times a week - I am feeling over all better than before and my BP is staying higher for a while (1 1/2 days) and the pulse pressure is better (systolic - diastolic) which I believe is a sign of being less dehydrated.

Joyce- You need to be tested for Diabetes Insipidus. I had the same symptoms you do.

San Diego

 

[hollie9]

I've been considering going to Dr. K since he is relatively close to me.

I've had CFS over 20 years and the only thing that ever helped was big infusions of Gamma Globulin every other week. My old doctor retired so I don't know how to get gamma anymore, do you think Dr. K would give infusions like this of gamma?

I'm really bedridden lately, only thing turning up in regular tests is low cortisol. Anyone know what this means?

hollie

 

[*GG*]

I've been considering going to Dr. K since he is relatively close to me.

I've had CFS over 20 years and the only thing that ever helped was big infusions of Gamma Globulin every other week. My old doctor retired so I don't know how to get gamma anymore, do you think Dr. K would give infusions like this of gamma?

I'm really bedridden lately, only thing turning up in regular tests is low cortisol. Anyone know what this means?

hollie

So the Dr left the practice and/or closed the practice without being able to refer you to another Dr? Is this typical for this kind of treatment?

GG

PS I hope when my Dr retires he has someone to replace himself, and I can continue to get good treatment!

 

[Ruthie24]

@Hollie9- You might want to call Dr. K's office and ask, but I know he mentioned that he does prescribe IVIG etc for patients in certain cases and they do infusions in the office so it might be something he'd do for you.

 

[SanDiego#1]

I've been considering going to Dr. K since he is relatively close to me.

I've had CFS over 20 years and the only thing that ever helped was big infusions of Gamma Globulin every other week. My old doctor retired so I don't know how to get gamma anymore, do you think Dr. K would give infusions like this of gamma?

I'm really bedridden lately, only thing turning up in regular tests is low cortisol. Anyone know what this means?

hollie

Hollie- I was tested for Diabetes Insipidus and was positive -clue Dr. said was low Cortisol. Also now they want to test me for Addisons-which would mean I would have to be on Cortisone for a long time. Hollie- I get Gamma Globulin IM shots every week 3 cc. The only problem is getting someone to give you a RX for the right one. I am looking for a new one as the one from Telecris has a detergent in it that does not work for me. Klimas does do Gamma Globulin. I have not been to her.

San Diego #1

 

[aquariusgirl]

san diego....what are they giving you for Diabetes Insipidus? Desmopressin? I asked about that drug.. I was told it was a pretty serious drug.... but I'm sure I have DI.

 

[MeSci]

san diego....what are they giving you for Diabetes Insipidus? Desmopressin? I asked about that drug.. I was told it was a pretty serious drug.... but I'm sure I have DI.

Not San Diego, but...It's a very safe drug if taken sensibly. I've been taking it for years - no ill effects. I haven't been diagnosed with DI. It's sometimes given to children for bedwetting. See here for some info:

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a608010.html

I LOVE desmo - it changed my life. I had got to the stage where I stopped going out socially due to the embarrassment when I had a bad episode and had to go to the WC multiple times in an evening, I was afraid to get on a bus or be more than half an hour from a WC at any time. It kept me awake at night. Desmo sorted it out.

 

[SanDiego#1]

san diego....what are they giving you for Diabetes Insipidus? Desmopressin? I asked about that drug.. I was told it was a pretty serious drug.... but I'm sure I have DI.

Aqua-
My CF DR. gave me Desmopressin. However would not give me oral meds but injectable. I had very bad reaction. My husband thought I was having a stroke and I was only taking 1/3 the dosage. I am now trying Oxeytocin. Still he is sending me injectable. Not working either. Don't know what is next. I am going to consult an Endocrinologist as this condition is very serious. Don't think my CF dr. is on with this one. I am really afraid to take Desmo again. Pharmacist said the injec was 10 times stronger than oral.He said to ask him about Florinef????

 

[SanDiego#1]

Not San Diego, but...It's a very safe drug if taken sensibly. I've been taking it for years - no ill effects. I haven't been diagnosed with DI. It's sometimes given to children for bedwetting. See here for some info:

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a608010.html

I LOVE desmo - it changed my life. I had got to the stage where I stopped going out socially due to the embarrassment when I had a bad episode and had to go to the WC multiple times in an evening, I was afraid to get on a bus or be more than half an hour from a WC at any time. It kept me awake at night. Desmo sorted it out.

How are you taking it? Oral or injec. How much? It can be very dangerous if you don't have DI.
Would like to know how it works. Do you just have a weak bladder??

San Diego

 

[MeSci]

How are you taking it? Oral or injec. How much? It can be very dangerous if you don't have DI.
Would like to know how it works. Do you just have a weak bladder??

San Diego

I have polyuria (excessive) urine production, which is common in ME. I have two types - one which responds to desmo and is characterised by very dilute urine,and one which does not respond and in which the urine is more normally concentrated. The first kind is likely to be due to intermittently low levels of the antidiuretic hormone vasopressin (for which desmo is a synthetic analogue), which involves the HPA axis in its production. This axis is dysfunctional in ME. Some studies have found low levels of vasopressin in ME.

These ones found that desmo improved cortisol production in CFS:

http://www.ncbi.nlm.nih.gov/pubmed/10356627
http://freespace.virgin.net/david.axford/stpres01.htm

My other kind appears to be natriuresis - excretion of large amounts of sodium (and I suspect other electrolytes too) in urine. This is likely to be driven by excessive lactate production due to overexertion and/or excessive gut acidity from abnormal carbohydrate digestion. Desmo does little or nothing for this type, and I can only prevent it by avoiding overexertion, stress and carbohydrates and supplementing the electrolytes I am losing, making sure to drink isotonic and hypertonic fluids rather than water.

Unfortunately when I suffered severe hyponatraemia (low blood sodium) the doctors decided, in absence of any evidence and ignoring actual evidence to the contrary - that it was due to me using too much desmo and drinking too much fluid, when I did neither and was in fact dehydrated. I was later found to be excreting significant amounts of sodium in urine whilst being hyponatraemic.

You can measure your own urine osmolality (the concentration of osmotic particles) using a wine/beer hydrometer and doing some calculations to convert the result to milliosmoles per kilogram. I could dig out the formula if required.

I take it orally, but have also taken it nasally, which is more efficient.

 

[MeSci]

Aqua-
My CF DR. gave me Desmopressin. However would not give me oral meds but injectable. I had very bad reaction. My husband thought I was having a stroke and I was only taking 1/3 the dosage. I am now trying Oxeytocin. Still he is sending me injectable. Not working either. Don't know what is next. I am going to consult an Endocrinologist as this condition is very serious. Don't think my CF dr. is on with this one. I am really afraid to take Desmo again. Pharmacist said the injec was 10 times stronger than oral.He said to ask him about Florinef????

Were your symptoms on being injected with the drug like these:

http://www.nlm.nih.gov/medlineplus/ency/article/000394.htm

A friend thought that I was having a fit when I had my second attack in one day after being sent home from A&W.

When this happens you need to get plenty of salt into you. I have found that sedating antihistamines diphenhydramine and chlorphenamine reduce the muscle cramps/spasms and nausea, because they are anticholinergic.

But really it sounds as though your doctor is giving you an excessively high dose, and I don't know why he is using an injectable form. It sounds as though he is putting you in danger.

I hope you have a better endo than mine. Mine was one of the 'top' regional specialists, but was alarmingly ignorant about DI and related issues. He insisted that DI could not develop later in life, but that you had to be born with it!

 

[SanDiego#1]

I have polyuria (excessive) urine production, which is common in ME. I have two types - one which responds to desmo and is characterised by very dilute urine,and one which does not respond and in which the urine is more normally concentrated. The first kind is likely to be due to intermittently low levels of the antidiuretic hormone vasopressin (for which desmo is a synthetic analogue), which involves the HPA axis in its production. This axis is dysfunctional in ME. Some studies have found low levels of vasopressin in ME.

These ones found that desmo improved cortisol production in CFS:

http://www.ncbi.nlm.nih.gov/pubmed/10356627
http://freespace.virgin.net/david.axford/stpres01.htm

My other kind appears to be natriuresis - excretion of large amounts of sodium (and I suspect other electrolytes too) in urine. This is likely to be driven by excessive lactate production due to overexertion and/or excessive gut acidity from abnormal carbohydrate digestion. Desmo does little or nothing for this type, and I can only prevent it by avoiding overexertion, stress and carbohydrates and supplementing the electrolytes I am losing, making sure to drink isotonic and hypertonic fluids rather than water.

Unfortunately when I suffered severe hyponatraemia (low blood sodium) the doctors decided, in absence of any evidence and ignoring actual evidence to the contrary - that it was due to me using too much desmo and drinking too much fluid, when I did neither and was in fact dehydrated. I was later found to be excreting significant amounts of sodium in urine whilst being hyponatraemic.

You can measure your own urine osmolality (the concentration of osmotic particles) using a wine/beer hydrometer and doing some calculations to convert the result to milliosmoles per kilogram. I could dig out the formula if required.

I take it orally, but have also taken it nasally, which is more efficient.

Were your symptoms on being injected with the drug like these:

http://www.nlm.nih.gov/medlineplus/ency/article/000394.htm

A friend thought that I was having a fit when I had my second attack in one day after being sent home from A&W.

When this happens you need to get plenty of salt into you. I have found that sedating antihistamines diphenhydramine and chlorphenamine reduce the muscle cramps/spasms and nausea, because they are anticholinergic.

But really it sounds as though your doctor is giving you an excessively high dose, and I don't know why he is using an injectable form. It sounds as though he is putting you in danger.

I hope you have a better endo than mine. Mine was one of the 'top' regional specialists, but was alarmingly ignorant about DI and related issues. He insisted that DI could not develop later in life, but that you had to be born with it!

MESCI and Aqua- Love the precious Avatar of the cat. Looks just like my BUSTER.
I am most impressed by the knowledge of you both. I do not feel my CFIDS Dr is doing follow up at all. Just wants to seem like he know everything about everything. I HATE interviewing another Dr. even if Endocrinologist. I just read where it says=do nto take in alot of fluid with Desmopressin. He told me to drink loads of Salt water and fluids with mine. My usuual low BP went to 174/64.I too feel he is putting me in danger. I am just getting weaker and weaker.

Thanks for all your input. Will let you know what new Dr. says.

San Diego

 

[SanDiego#1]

MESCI and Aqua- Love the precious Avatar of the cat. Looks just like my BUSTER.
I am most impressed by the knowledge of you both. I do not feel my CFIDS Dr is doing follow up at all. Just wants to seem like he know everything about everything. I HATE interviewing another Dr. even if Endocrinologist. I just read where it says=do nto take in alot of fluid with Desmopressin. He told me to drink loads of Salt water and fluids with mine. My usuual low BP went to 174/64.I too feel he is putting me in danger. I am just getting weaker and weaker.

Thanks for all your input. Will let you know what new Dr. says.

San Diego

MESCI and Aqua- Have an appointment with Endocrinologist on Monday. Can't wait for him to roll his eyes when I take all my tests in. I know he is good-just maybe not in all my areas. Trying to be positive!!!!! Wish I was back in California Dr. Chia sounds really up on everything. Maybe an infectious Disease Dr.here would be the answer. They were the ones that diagnoses me over 20 years ago.

Thanks to both of you.

San Diego

 

[vli]

Would any Kolgenik patients here be willing to share their experiences of him with me via PM? I have learned to be careful and will not disclose anything you tell me to anyone else. For instnace, could anyone tell me if he has/would still use IV antivirals (incl. Vistide), and how long do you wait between the first and the followup appointment? Is anyone living in the Bay area OR nearby now and seeing him? I am considering going to him now .

Thank you.

 

[SanDiego#1]

MESCI and Aqua- Love the precious Avatar of the cat. Looks just like my BUSTER.
I am most impressed by the knowledge of you both. I do not feel my CFIDS Dr is doing follow up at all. Just wants to seem like he know everything about everything. I HATE interviewing another Dr. even if Endocrinologist. I just read where it says=do nto take in alot of fluid with Desmopressin. He told me to drink loads of Salt water and fluids with mine. My usuual low BP went to 174/64.I too feel he is putting me in danger. I am just getting weaker and weaker.

Thanks for all your input. Will let you know what new Dr. says.

San Diego

MESCI- Sorry I am so late getting back to your last post. The Endo Dr. did absolutely nothing. He said my test for DI was
not complete as it was 17hour water deprivation and no blood. So I ask him to do it over. He said no, as he thought I had a Cardiac issue or Gastric issues. To come back to him after this was checked out. He did no exam on me just consult. He looked at one test result that was done here where they said my Arginine Vasopressin AVP was1.0 .ref range is 1.0-13.3. My My Osmolality (serum) was 300 ref range 278-305.
I feel I am going around in circles. Having heart racing /Palpitation/Fluterring and weakness. Went off of Salt water. Only now on Gatoriaide. Lots of water. Enviro Dr. put me on Adrenal support liquid . Said stay off of salt water.
I also went to see a Cardiologist who specializes in Heart rate and Pacing. I really liked him. I ask him for a 30 day Holter Heart Monitor and he said YES that is what I recommend. He said lets take one thing at a time.
Also ask for Echo and they did it and I have slight DD but everything else is ok with this Echo. I am going to ask for one of my Vascular area also. I am now wearing a Holter Monitor for 2 more weeks. Many events on it. It is also a pain
to record something at 2-3 AM. I DON'T CARE IF I HAVE TO SLEEP ON MY HEAD ALL NIGHT!!!!
Before the Monitor and I saw the Cardiologist I wound up in emergency room as I was having Angina. Don't have it often. Was not having H. Attack. That is when I went to the Pacing Cardiologist.
ALSO found out I have Sleep Apnea and quit breathing frequently during the night. Seeing specialist on this after I finish monitor. I can only handle one of these at a time, as right now the Monitor is my main goal.
Have not even gone over any of this with my CFIDS Dr. I would have to pay $1200.00 for a PC. Nothing from him has helped me-but the Mag/Taurine inj 1/4 of his dosage only when I have symptoms. He wanted me to take 2 x a day at a large dosage.Hope my environmental Dr. Can gt that for me Compounded.
I did tell them I was having Echo and Monitor. NO RESPONSE.

Thanks you for any feedback. again I apologize for waiting so long to respond.

San Diego #1

 

[Little Bluestem]

How did you find the cardiologist who specializes in heart rate and pacing?

 

[SanDiego#1]

How did you find the cardiologist who specializes in heart rate and pacing?

I called a Cardiology group that I was seeing . Saw them about 6 mo ago. I was having Palpitation and Afib. He was the wrong specialist as he did surgery and Caths. I called and asked who did the pacing and heart rhythem. Happen to get the right person. She was the Admin assistant to the Dr. I saw. I won't know what result are yet. But there are specialties in specialties. The first one I saw was good , but he did not refer me to the right one as he did surgery only..

If you are having Palpitations and fluttering you need to see a Cardiologist that does pacng and rhythem. The Dr. now seems to know what he is doing. We will see. This cardiac group is supposed to be one of the best. I told him I wanted a 30 day Monitor test -not a 2 day. He agreed!!!! You also need an ECHO.

San Diego #1