Seeking information on long-term outcomes with Dr. Kaufman

[Daydreamer45]

From what you reported, my guess is that your friend's decline was more due to the antibiotics vs. the LDN or the IVIG. Obviously I do not know for sure, and I personally did not tolerate LDN, but never had any lasting bad effect from it.

High dose IVIG has literally given me my life back (along with another treatment) and I hate to scare people away from it, IF they are a potential candidate with proven autoimmunity.

I also had a horrifically adverse neurotoxic reaction to an antibiotic (Levaquin) that nearly tore my right triceps tendon in 2010. I was able to improve from the systemic neurotoxic reaction after 1.5 years but the arm injury still persists EIGHT years later (and the Levaquin has nothing to do with Dr. Kaufman and was from an ENT I am speaking in general).

@Gingergrrl I’m really sorry to hear that about the Levaquin

If you don’t mind sharing, what test results prompted high dosage IVIG?

Did you do monthly/semi-monthly lower-dosage IVIG infusions prior, and respond well (or not)?

And forgive me if you’ve answered these questions elsewhere. I’m a newbie here

 

[Sushi]

The prescriptions which hurt people were Valcyte, LDN, numerous antibiotics for tickbourme illnesses, and IVIG.

Just a comment: since there is no approved treatment for ME/CFS the doctors with experience and expertise treating this illness only have a certain number of medication approaches they can try. They all have the same medications to select from though of course the choices would vary from patient to patient according to their medical history and lab tests. The medications listed above work for some, don't work for others, and have negative effects for yet others. This is hard to predict but from the reports we get, these medication approaches are only effective for about 50% of those who try them. This isn't the fault of the doctors--it is sadly the options available at the moment. Doctors know this but, in good faith, they may (with the patient's permission) try the medications that seem most likely to help in the individual case.

 

[Gingergrrl]

@Gingergrrl I’m really sorry to hear that about the Levaquin

Thank you.

If you don’t mind sharing, what test results prompted high dosage IVIG? Did you do monthly/semi-monthly lower-dosage IVIG infusions prior, and respond well (or not)? And forgive me if you’ve answered these questions elsewhere. I’m a newbie here

I'm happy to reply and it's my fault for not having my history in one cohesive place (which I hope to some day). The high dose IVIG was recommended both by my MCAS doctor as he uses it commonly in his MCAS patients to reset the immune system and by Dr. K for autoimmunity (positive ANA, eleven autoantibodies on various tests, etc).

I started IVIG in July 2016 (almost 2 yrs ago) and still doing it now. I started with 24 grams, built to 55 grams, and then built to final dose of 82 grams (in a 3-day split dose). I was doing it every three weeks but now have tapered it down to every six weeks and also tapered back down to 55 grams. It has all been Gamunex and no other brand. Am also doing Rituximab but did a full year of IVIG before starting Ritux in July/Aug 2017.

Hope this helps.

 

[Learner1]

As @Sushi says, there are no official treatments for ME/CFS, so the doctors are doing what they can based on the limited research and their clinical experience.

I have been helped by Valcyte, LDN, antibiotics, and IVIG, prescribed by Dr. Kaufman. He also diagnosed and treated my MCAS, found the cause of my POTS and has helped with those meds, and has done an excellent job with diagnostic testing, 95% of which was covered by insurance.

He is on top of the latest research and continually learning. And, he has brilliantly dealt with some very exotic problems his patients have had.

Though he has respect for the nutrient/metabolomics part of this and supportive of taking nutrients like carnitine, vitamin D, folate, vitamin B12, and probiotics, these are not his area of expertise. So, it seems to me that patients who have not faired as well may have needed help in these areas, and by having someone with this expertise on their team, like a functional medicine doctor, their outcomes may have improved.

For example, he put me on an antibiotic protocol for chlamydia pneumoniae which did impact my gut microbiome. I knew this was a big risk going in, but chlamydia pneumoniae is a very bad bug and very difficult to get rid of. And, I took a hefty probiotic throughout the treatment and as soon as it was done, I did a baseline stool test and went on a hefty gut rebuilding protocol my functional medicine doctor and I devised. If I'd just done the antibiotics without the support, I may have suffered too.

It is up to the patient to go in educated about the types of tests and treatments there are and to provide a complete health history, so that the doctor can know as much as possible about the patient's unique issues and the patient can ask questions and fully understand the potential risks and benefits of each treatment offered.

 

[Gingergrrl]

I have been helped by Valcyte, IVIG, and IVIG, prescribed by Dr. Kaufman.

I was curious which treatment you meant to write since you wrote IVIG twice.

He is on top of the latest research and continually learning. And, he has brilliantly dealt with some very exotic problems his patients have had.

I agree with everything you just said in quote above.

Though he has respect for the nutrient/metabolomics part of this and supportive of taking nutrients like carnitine, vitamin D, folate, vitamin B12, and probiotics, these are not his area of expertise.

He actually really helped me last year when I was constantly anemic on blood tests and my B-12 & Folate were really low and homocysteine was really high. We tried different things until I found the Hydroxo B-12/Folinic Acid supplement that I not only tolerate but brought my numbers into normal range.

He took this very seriously and when I asked, "Can't I just wait on adding the B-12?" he really felt it was dangerous and did not want me to wait. He's also advised me re: Vit D, Potassium, etc, because in general none of my numbers stay in the normal range without supplementation. I am still not sure why!

 

[Learner1]

Sorry for the typo - I edited my post above.

I have been helped by Valcyte, LDN, antibiotics, and IVIG,

 

[Daydreamer45]

As @Sushi says, there are no official treatments for ME/CFS, so the doctors are doing what they can based on the limited research and their clinical experience.

I have been helped by Valcyte, LDN, antibiotics, and IVIG, prescribed by Dr. Kaufman. He also diagnosed and treated my MCAS, found the cause of my POTS and has helped with those meds, and has done an excellent job with diagnostic testing, 95% of which was covered by insurance.

He is on top of the latest research and continually learning. And, he has brilliantly dealt with some very exotic problems his patients have had.

Though he has respect for the nutrient/metabolomics part of this and supportive of taking nutrients like carnitine, vitamin D, folate, vitamin B12, and probiotics, these are not his area of expertise. So, it seems to me that patients who have not faired as well may have needed help in these areas, and by having someone with this expertise on their team, like a functional medicine doctor, their outcomes may have improved.

For example, he put me on an antibiotic protocol for chlamydia pneumoniae which did impact my gut microbiome. I knew this was a big risk going in, but chlamydia pneumoniae is a very bad bug and very difficult to get rid of. And, I took a hefty probiotic throughout the treatment and as soon as it was done, I did a baseline stool test and went on a hefty gut rebuilding protocol my functional medicine doctor and I devised. If I'd just done the antibiotics without the support, I may have suffered too.

It is up to the patient to go in educated about the types of tests and treatments there are and to provide a complete health history, so that the doctor can know as much as possible about the patient's unique issues and the patient can ask questions and fully understand the potential risks and benefits of each treatment offered.

@Learner1 @Sushi @Gingergrrl @perrier
Here was my original response to the question of long term outcome with Dr Kaufman: “Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions.”

I never meant to imply that Dr Kaufman was a mediocre doctor.
My experience with him so far as a new patient has been good.
I really do understand the challenges that come with being a specialist for an illness with so many unknowns like ME.
And I also fully recognize that he has helped people a lot – that’s why I’m seeing him

But I also wanted to be honest about the fact that his prescriptions have hurt several friends long-term. Not that he meant to of course. But as you guys have pointed out, medications like antibiotics for tickborne illnesses have potential to heal or damage.

I feel like in saying the above I did something wrong, perhaps even offensive? I really didn’t mean to.
I’m new to this site, and it is so FANTASTIC!
I feel badly about possibly offending people on my very first day.
I’m open to any feedback if you’d like to share it with me Thanks!

 

[Daydreamer45]

Thank you.



I'm happy to reply and it's my fault for not having my history in one cohesive place (which I hope to some day). The high dose IVIG was recommended both by my MCAS doctor as he uses it commonly in his MCAS patients to reset the immune system and by Dr. K for autoimmunity (positive ANA, eleven autoantibodies on various tests, etc).

I started IVIG in July 2016 (almost 2 yrs ago) and still doing it now. I started with 24 grams, built to 55 grams, and then built to final dose of 82 grams (in a 3-day split dose). I was doing it every three weeks but now have tapered it down to every six weeks and also tapered back down to 55 grams. It has all been Gamunex and no other brand. Am also doing Rituximab but did a full year of IVIG before starting Ritux in July/Aug 2017.

Hope this helps.

Very helpful, as Dr Kaufman has suggested me doing IVIG infusion every other week, and I’m eager to learn more about it. What worked for people, what didn’t, etc.

Also interesting that we are both ANA positive, and have POTS.
Several more questions – how did he help your POTS? And what is meant by “autoantibodies”?

No rush in responding, and thanks so much for all your help!!

 

[Kati]

Though he has respect for the nutrient/metabolomics part of this and supportive of taking nutrients like carnitine, vitamin D, folate, vitamin B12, and probiotics, these are not his area of expertise

This is an interesting statement, considering that he has been involved with the MTHFR study from OMI which has funded by OMf. The study is unpublished and i am not invovled in any way with this study. But i remember it was discussed by OMF a couple of years ago.

You seem to suggest that Dr K does not have sufficient information in this regard. Perhaps he does but does not consider it relevant for our patient population, but your online forum experience and whatever you are reading out there differs somehow. His expertise maybe more than where you believe his practice should go.

 

[Sushi]

I feel like in saying the above I did something wrong, perhaps even offensive? I really didn’t mean to.
I’m new to this site, and it is so FANTASTIC!

I think everyone understands that--no worries . I wrote what I did just to try to add some perspective. Every specialist who treats ME/CFS will have patients who benefit, some who don't and some who have difficult reactions to medications. I have been treated by other ME/CFS specialists and this is my experience too--one step forward, one step back, maybe two steps forward, then one step back. That is where we are now.

 

[Jennifer J]

Edit added this quote:

Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions. Some haven’t really benefitted after spending thousands of dollars.

I haven’t been seeing him long enough to judge yet. He’s a very knowledgeable, intelligent, conscientious Dr. His treatments are fairly experimental, which can be good or bad depending on how you respond.

Just a heads up, they don’t accept insurance and a lot of the tests and supplements are really expensive. So be prepared to spend easily $10,000. Of course, if he can help you a lot that’s worth it!

I never meant to imply that Dr Kaufman was a mediocre doctor.
My experience with him so far as a new patient has been good.
I really do understand the challenges that come with being a specialist for an illness with so many unknowns like ME.
And I also fully recognize that he has helped people a lot – that’s why I’m seeing him

@Daydreamer45 what you wrote was very helpful and a good reminder for those of us (especially foggy brained forgetful me) as we weigh out our options and make decisions. Also what I needed to hear as I'm mentally exploring avenues and thinking of plan B(s). Thank you! Please you were fine, it was good what you wrote. We understood what you were saying.

Thank you all the posters too for the information you are sharing. It's so helpful.

P.S. @Daydreamer45 a friend read what you wrote and it helped them and they shared it with me and it helped me toooo!

 

[Gingergrrl]

@Learner1 @Sushi @Gingergrrl @perrier Here was my original response to the question of long term outcome with Dr Kaufman: “Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions.”

I'm not sure how you want me to reply in tagging me, and I read your statement the first time, and my opinion remains that it was most likely the antibiotics for Lyme that were harmful (but obviously I cannot prove it). I do not have Lyme and Dr. K has never given me an antibiotic. There are thousands of Lyme docs across the US and there are probably millions of docs worldwide who prescribe LDN for endless different conditions plus people can buy LDN on-line.

But I also wanted to be honest about the fact that his prescriptions have hurt several friends long-term.

It seems like a harsh statement and I am not sure why you are posting it a second time but you have definitely made your point. None of the meds you listed seemed strange to me and IVIG is widely prescribed for hundreds of conditions. I belong to two IVIG groups on FB and one of them is called "IVIG saved my life" and I literally put myself into that category b/c prior to IVIG, I was having constant anaphylaxis and now my MCAS has been in remission for almost two years.

My IVIG is actually prescribed by my MCAS doctor, not Dr. K, but they consulted about my case and were in complete agreement and Dr. K challenged my insurance until they approved it which was not an easy task. Of course IVIG is not for everyone but it has solid research behind it and it's not some crazy, unknown treatment. Me being a responder to high dose IVIG was a good predictor that I'd be a responder to Rituximab and I was. I realize that I do not need to defend my treatment choices (and Dr. K certainly doesn't need me to defend him!) but I am so grateful that I can now walk without wheelchair and drive my car again after almost four years that I feel compelled to express my gratitude for all that he has done for me.

But as you guys have pointed out, medications like antibiotics for tickborne illnesses have potential to heal or damage.

I agree that antibiotics can be dangerous but mine was prescribed for a throat infection by an ENT in 2010 (several years before I got sick with this illness). It was not for a tickborne disease (which I do not have) and it was not from Dr. K. The ENT never warned me of the black box warnings for fluoroquinolones or I would never have taken it. It was not worth losing the use of my right arm for 1.5 years. Any doctor can prescribe a med that will make some patients better, some neutral, and some worse. We all have different history, genetics, allergies, etc.

I feel like in saying the above I did something wrong, perhaps even offensive? I really didn’t mean to.

I wasn't offended vs. confused b/c you seemed like you were about to post something bizarre or scandalous when patients can buy LDN on-line or get it from their PCP or even a naturopath. Lyme doctors are set up on every corner and some are legit and some are frauds. And IVIG can be life-saving in immune deficiency and autoimmunity and is a well established treatment. Anyone can have a bad reaction to anything. I am grateful to have options, to research them, and to choose what I think is best for me.

 

[Learner1]

This is an interesting statement, considering that he has been involved with the MTHFR study from OMI which has funded by OMf. The study is unpublished and i am not invovled in any way with this study. But i remember it was discussed by OMF a couple of years ago.

There is far more to getting methylation working properly than an MTHFR study. MTHFR is the name of a gene. And I am well aware of the study

You seem to suggest that Dr K does not have sufficient information in this regard. Perhaps he does but does not consider it relevant for our patient population, but your online forum experience and whatever you are reading out there differs somehow. His expertise maybe more than where you believe his practice should go.

And you seem to be putting words in my mouth. I have an excellent functionsl medicine doctor as my primary doctor and he has a much richer knowledge of nutrition. I am very satisfied with Dr. K and don't expect him to know everything. Just like you wouldn't go to a podiatrist for your ear infection.

 

[Kati]

So thankful for Dr K for not buying into everyone’s pet theories without checking them out for himself and without checking his patients from head to toe individually. He is a no nonsense kind of guy.

Only science will determine what is helpful and what is not. We must have different disease because i do not have food sensitivities and food does not seem to improve my state of health. And i know I am not alone.

And while i do take some supplements, it is not the central part of my life. It is not the central part of my disease either.

And to note, take a look at folks who eat out and have fish and chips, beer, burgers, chocolate cake and cinnamon buns on an almost daily basis. Many of them are healthier than most. These can also be incorporated in a healthy diet using the 80-20 rule that is recommended by dieticians.

The big danger of focusing on food in a maniacal way is that it makes people feel guilty for having cereal and milk, and worried that having ice cream that one time contributed to them being sick the next day. It is also very stressful on family members and ‘eating well’ whatever your own standard may be does not mean you will rid of this disease. And then on top of that, it gives the physicians and researchers the idea that this is a lifestyle disease when it’s not.
Heck, just listen to the patient conference in Montreal. They are all over educating patients about broccoli and beet juice. i wonder what the researchers said in the other room. I can bet you they did not discuss broccoli.

 

[Learner1]

take a look at folks who eat out and have fish and chips, beer, burgers, chocolate cake and cinnamon buns on an almost daily basis.

Bet they aren't celiac, like so many of us. Gluten destroys the villi inside the intestines, leading to nutrient deficiencies. Dr K confirmed I was celiac and I believe he has said half of his patients have mast cell activation symdrome, which can include serious food sensitivities.

As a cancer nurse, you might be interested to know broccoli has cancer fighting properties.

www.medicalnewstoday.com/articles/amp/316448?amp_js_v=a1&amp_gsa=1&usqp=mq331AQGCAEYASgB#amp_tf=From%20%251%24s&ampshare=https%3A%2F%2Fwww.medicalnewstoday.com%2Farticles%2F316448.php

And here's some info on why beets are useful:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2993168/#__ffn_sectitle

 

[Kati]

Bet they aren't celiac, like so many of us. Gluten destroys the villi inside the intestines, leading to nutrient deficiencies. Dr K confirmed I was celiac and I believe he has said half of his patients have mast cell activation symdrome, which can include serious food sensitivities.

As a cancer nurse, you might be interested to know broccoli has cancer fighting properties.

www.medicalnewstoday.com/articles/amp/316448?amp_js_v=a1&amp_gsa=1&usqp=mq331AQGCAEYASgB#amp_tf=From%20%251%24s&ampshare=https%3A%2F%2Fwww.medicalnewstoday.com%2Farticles%2F316448.php

And here's some info on why beets are useful:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2993168/#__ffn_sectitle

And there are a number of us who are not celiac and do not nee to worry about gluten. This is not a slam dunk celiac deal with ME.

You seem very keen to wanting to provide reading for me to get educated. I am good in that department thank you. i know my brocoli. I also know my tomatoes. Perhaps my shopping list may be of use to you. And my food diary, to the very last bite.

 

[perrier]

@Learner1 @Sushi @Gingergrrl @perrier
Here was my original response to the question of long term outcome with Dr Kaufman: “Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions.”

I never meant to imply that Dr Kaufman was a mediocre doctor.
My experience with him so far as a new patient has been good.
I really do understand the challenges that come with being a specialist for an illness with so many unknowns like ME.
And I also fully recognize that he has helped people a lot – that’s why I’m seeing him

But I also wanted to be honest about the fact that his prescriptions have hurt several friends long-term. Not that he meant to of course. But as you guys have pointed out, medications like antibiotics for tickborne illnesses have potential to heal or damage.


I feel like in saying the above I did something wrong, perhaps even offensive? I really didn’t mean to.
I’m new to this site, and it is so FANTASTIC!
I feel badly about possibly offending people on my very first day.
I’m open to any feedback if you’d like to share it with me Thanks!

Dear dear Daydreamer,
I feel awful that you even feel you did something wrong. You certainly did not. You are helping folks see things clearly. Please try to erase any uncomfortable feeling. There is no need for it. Folks here have various positions, but that does not mean you are wrong.

We all know Dr. Kaufman is a brilliant caring doctor. Everyone knows this.

But it is also important to hear what has happened to some people. Yes, there is lots of experimenting going on, because as yet there is no official treatment.

It is of utmost importance to hear about what has happened to patients.

I hope you have a more pleasant day today.
xxxx

 

[StarChild56]

Thanks Learner, for this helpful info.

I'm also wondering if some really really sick folks have seen Dr Kaufman, folks who were bed bound all the time.

I am/was very ill. I can walk around my house but it is very difficult. I spend almost all of my time now in my recliner and some in bed. Before, I spent almost all my time in the bed and laying flat in the recliner. When I leave the house, my adult sons or husband takes me, drives me and I am in a wheelchair.

My kids and husband do everything for me - bring me water, food, help me with my meds, etc. I do not cook or clean or do laundry.

I have improved some, in some areas significantly but I have numerous severe/complex illnesses we are trying to manage and get under control. I have more testing to do.

I will say that I used to have severe leg aches - as if you have the flu and that bone crunching pain - all the time. I used to have this horrific feeling of malaise - not just fatigue - but malaise to the point that even on the few occasions I would leave the house with my family, again, in my wheelchair and everyone helping me - I felt so ill I could not even enjoy it. At New Year's dinner in my own home, I dragged myself to the dining table, could hardly chew my food. I tried to enjoy it but it was so difficult almost painful. My son said, "Mom, are you okay? You look exhausted." And he knows how ill I am - it just shows how bad I was. Now, it still is not easy for me but I can manage it sometimes. I am able to get into the kitchen and sit at the table for 20 minutes and mix or chop stuff they bring me (only a couple times). I get PEM but it is worth it to feel human again.

So I have made improvements but have a far road ahead. If we go somewhere (rare) now, I can enjoy the time even if it is hard on me (just getting dressed, walking to car, being out, noises, the commotion while I'm in the wheelchair exhaust me) - I can still enjoy my family. Or seeing the outside.

Dr. Kaufman really is my only hope and he has helped me, he keeps working on the issues, he fought the insurance for meds I needed (and I got approved in 2 days). I can not say enough good things about him. And I have 5 major illnesses he is working on with me, one only diagnosed this week.

So - I feel I am housebound, and spend almost all of my time in my bedroom in recliner or bed. My family is out in the family room of the house and it makes me sad I can't be out there. But I can come out there for a few minutes here and there where I could not before. So I am making slow improvements. I'm on a lot of meds, mostly prescribed but some otc and some supplements/vitamins Dr. Kaufman recommends. Some of my symptoms have improved due to that.

I'm rambling, apologies.

 

[StarChild56]

Dear daydreamer
I’m very interested in your experience. LDN shouldnt cause any long term I’ll effects. As for antibiotics, I have seen many tragic results. But I never heard about damage from IVIG. As for Valcyte, I do wonder what may have happened. If you have more info, I’m all ears...

Just my 2 cents - Valcyte is helping me, as does the LDN.

 

[perrier]

I am/was very ill. I can walk around my house but it is very difficult. I spend almost all of my time now in my recliner and some in bed. Before, I spent almost all my time in the bed and laying flat in the recliner. When I leave the house, my adult sons or husband takes me, drives me and I am in a wheelchair.

My kids and husband do everything for me - bring me water, food, help me with my meds, etc. I do not cook or clean or do laundry.

I have improved some, in some areas significantly but I have numerous severe/complex illnesses we are trying to manage and get under control. I have more testing to do.

I will say that I used to have severe leg aches - as if you have the flu and that bone crunching pain - all the time. I used to have this horrific feeling of malaise - not just fatigue - but malaise to the point that even on the few occasions I would leave the house with my family, again, in my wheelchair and everyone helping me - I felt so ill I could not even enjoy it. At New Year's dinner in my own home, I dragged myself to the dining table, could hardly chew my food. I tried to enjoy it but it was so difficult almost painful. My son said, "Mom, are you okay? You look exhausted." And he knows how ill I am - it just shows how bad I was. Now, it still is not easy for me but I can manage it sometimes. I am able to get into the kitchen and sit at the table for 20 minutes and mix or chop stuff they bring me (only a couple times). I get PEM but it is worth it to feel human again.

So I have made improvements but have a far road ahead. If we go somewhere (rare) now, I can enjoy the time even if it is hard on me (just getting dressed, walking to car, being out, noises, the commotion while I'm in the wheelchair exhaust me) - I can still enjoy my family. Or seeing the outside.

Dr. Kaufman really is my only hope and he has helped me, he keeps working on the issues, he fought the insurance for meds I needed (and I got approved in 2 days). I can not say enough good things about him. And I have 5 major illnesses he is working on with me, one only diagnosed this week.

So - I feel I am housebound, and spend almost all of my time in my bedroom in recliner or bed. My family is out in the family room of the house and it makes me sad I can't be out there. But I can come out there for a few minutes here and there where I could not before. So I am making slow improvements. I'm on a lot of meds, mostly prescribed but some otc and some supplements/vitamins Dr. Kaufman recommends. Some of my symptoms have improved due to that.

I'm rambling, apologies.

Thank you so much for all these details. You cannot imagine how important they are. Would it be too intrusive to inquire what illness you have? And may I inquire what medications you are on? This is all so helpful. Thank you.

And how long have you been in treatment? The improvements will most certainly come.