Seeking information on long-term outcomes with Dr. Kaufman

[StarChild56]

Dr. K is also very circumspect - there is evidence that I would do well on a particular antibiotic, and that I have underlying bacterial infection (in addition to others). But Dr. K is waiting until I get some other testing first. He also thoroughly explains the reasons he wants to do a test, explains how it is viewed in the wider medical community, why he thinks it would benefit me - and he will not do testing without good reasons to do so (based on history, illnesses, etc.). He has helped my POTS with one medication (it is not gone, but it is helped HR). The LDN helped my digestion in ways I can't even describe. I could go on and on. I wish my brain fog wasn't brain cement and I could actually express what I want to, but I am unable to do so.

 

[StarChild56]

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.

Wow I am glad it was helpful I feel like I can't get a single thought expressed. No I do not mind telling you I will actually copy and paste my diagnosis from him (but know that I also am diagnosed with asthma and severe allergies to "the outside" according to my allergist) - and my meds:

 

[StarChild56]

@perrier And hopefully I'll remember all my meds (but these are just the ones he has me on, not my other meds for asthma)

Valcyte (I had Epstein Barre Viremia even while taking Valtrex, so he got my insurance to approve this and finally it was no longer circulating in my blood but still have viral stuff)
Ketotifen (MCAS) 3 x a day
LDN
Allegra, 3x a day (MCAS)
Generic Zantac, 2x a day (MCAS)
Benadryl, 3x a day (I added that on my own and he has me keeping it, my MCAS was so bad I could not breath, constant shortness of breath different from asthma)
Cromolyn, 9 vials a day (MCAS)
Zyrtec, 1 at night (MCAS)
Singulair 1 at night (MCAS)
Propanalol, 3x a day for POTS
He prescribed b12 shots, I stopped as it was too expensive and went to liquid drops (methylation gene issue)
Methyl folate (same as above)
He recently prescribed an OTC nasal spray for MCAS have not gotten it yet
He recently prescribed 1,000 mg TR vitamin C for MCAS (cause I already take a huge amount of H1 I think he said he had to do a different type)
Quercitin 2x a day for (MCAS)
I was taking NeuroProtek for MCAS but too expensive so switched to Quercitin
I take Diazepam as a strong muscle relaxer when my neck is flaring with a migraine - and he said this is something that works on MCAS (but was prescribed by my primary for muscle relaxer)
He just recently prescribed a Choline/Pantothene (I forget what it is called and have not gotten it yet) for dysautonomia I believe - I may be wrong. He is connected to docs who treat dysautonomia and a ped cardio uses it, and he thinks it would be good for me - but this was our last phone visit and I am probably not saying it correctly but I am waiting on his approval for the ones I found as it did not match exactly what he prescribed
What else...oh yes a biggie
Hydrocortisone, 3 x a day (for basically almost no cortisol according to cortisol test)
He treated me with antibiotics (2) for SIBO when I first started with him Aug last year (I believe they helped). He approved my choice for probiotic, which is PrescriptAssist (although the formula changed recently so stopped and using another)
I tested positive on one CellTrend antibody and at risk for the other, but not very high at all

I know I am forgetting so much but hopefully that helps (I think that covers my meds from him - I also have asthma inhalers, nebulizer solution, another kind of muscle relaxer, migraine med, and anti-nausea med I get from my primary doc).

Really I do think Dr. Kaufman has saved my life. I am still very, very ill. He says my case is very complex and it sure seems it is. There is no quick fix. But he is helping me. He listens. He explains. He will fight insurance for you - I hear of so many people that can't even get Valcyte approved and like I said - he did in 2 days!

Ah, I don't know what else now, lol - brain fog is really thick.

 

[StarChild56]

@perrier I started with Dr. K July of last year. And at first, with the meds I started with early aug - I got like a good bit better - like, I would do more cooking (I love to cook and bake) and yes, I had help but I still did it. I even drove my car, with my then 7 year old by myself - not far, just to the park once and the library once less than a mile away and had my wheelchair in the car. My son helped me get the wheelchair out and he'd push me some but I'd also push myself a little. I could do things for like 10 or 15 minutes by myself and I spent more time out in the family room. This lasted for about 2 or 3 months, and then I backslid. Not as bad as just prior to treatment but to like I said. Then my MCAS worsened and the constant SOB really impacted me on top of everything else. I've only been on the valcyte since mid January so I am expecting further gains. So I took 2 steps forward and half or step backward. Recently, for no apparent reason (though coincided with increase in both cromolyn and adding the benadryl) my air hunger went away almost completely.

Please feel free to ask me any questions you'd like. And another thing to show that his treatment is not cookie cutter is I know of someone else who has MCAS and is on a really strong med, Gleevec (?) and even though I'm struggling with MCAS - and my histamine was high as well as my PD2 - he did not put me on it he said he wants to do these other steps first. So that tells me (I already knew) that he truly looks in such depth at your history, your symptoms, you labs, etc. and carefully constructs and adjusts your treatment plan as needed.

I was recently diagnosed (by him) with EDS. I'm lucky - some people wait years to get that diagnosis.

He has referred me (in process) to a Stanford specialist (in Neurosurgery) because he wants to rule out a CFS (? spinal fluid leak) due to some symptoms and a car accident preceding my migraines.

Last September I saw a neurologist in my city, in a respected University medical office. He saw my list of diagnosis I brought (like above) from Dr. K and he literally smiled and told me I was really, really lucky to have a doctor who can treat MCAS and POTS, and that he must be a good doctor! He said he didn't even learn about either in med school (and he is young, though a neurologist).

I read so many horror stories here and on other forums about patients not being believed, dismissed, and worse - and not only does he believe me, he has explanations - medical reasons - for my problems. That alone is priceless.

 

[Daydreamer45]

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

@perrier @Jennifer J @Sushi
Thank you so much for your kind responses! And no worries, yesterday and today were both pleasant

I’m happy to share everything as I continue treatment with Dr Kaufman, which I’m enthusiastic about.
So glad to hear that what I wrote was informative...
I see this thread has a lot of new info on it and looking forward to reading that as well.
Virtual hug!

 

[Daydreamer45]

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). 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.

Thanks for taking the time to give me an honest response. Based on what you and others have written, it does sound like the antibiotics were the culprit in both cases (I still have TONS to learn about all these treatments)

Dr Kaufman has worked very hard to give you your life back, and I can fully understand why you have so much respect for him.
Hopefully he can do the same for me as well! Cheers

 

[Daydreamer45]

@perrier I started with Dr. K July of last year. And at first, with the meds I started with early aug - I got like a good bit better - like, I would do more cooking (I love to cook and bake) and yes, I had help but I still did it. I even drove my car, with my then 7 year old by myself - not far, just to the park once and the library once less than a mile away and had my wheelchair in the car. My son helped me get the wheelchair out and he'd push me some but I'd also push myself a little. I could do things for like 10 or 15 minutes by myself and I spent more time out in the family room. This lasted for about 2 or 3 months, and then I backslid. Not as bad as just prior to treatment but to like I said. Then my MCAS worsened and the constant SOB really impacted me on top of everything else. I've only been on the valcyte since mid January so I am expecting further gains. So I took 2 steps forward and half or step backward. Recently, for no apparent reason (though coincided with increase in both cromolyn and adding the benadryl) my air hunger went away almost completely.

Please feel free to ask me any questions you'd like. And another thing to show that his treatment is not cookie cutter is I know of someone else who has MCAS and is on a really strong med, Gleevec (?) and even though I'm struggling with MCAS - and my histamine was high as well as my PD2 - he did not put me on it he said he wants to do these other steps first. So that tells me (I already knew) that he truly looks in such depth at your history, your symptoms, you labs, etc. and carefully constructs and adjusts your treatment plan as needed.

I was recently diagnosed (by him) with EDS. I'm lucky - some people wait years to get that diagnosis.

He has referred me (in process) to a Stanford specialist (in Neurosurgery) because he wants to rule out a CFS (? spinal fluid leak) due to some symptoms and a car accident preceding my migraines.

Last September I saw a neurologist in my city, in a respected University medical office. He saw my list of diagnosis I brought (like above) from Dr. K and he literally smiled and told me I was really, really lucky to have a doctor who can treat MCAS and POTS, and that he must be a good doctor! He said he didn't even learn about either in med school (and he is young, though a neurologist).

I read so many horror stories here and on other forums about patients not being believed, dismissed, and worse - and not only does he believe me, he has explanations - medical reasons - for my problems. That alone is priceless.

I’m so incredibly glad that Dr Kaufman has been so helpful for you, especially after all you’ve gone through

I know this must be exhausting for you, so no rush in responding, but I’m curious about two things –

1. You mentioned he is helping your POTS, can you tell us more about this?

2. What is your hydrocortisone dosage which you take three times a day? What improvement have you noticed (in terms of symptoms and testing?)

Thanks so much for sharing everything. As @Sushi said, treatment for our illness is very two steps forward, one step back, and so on...if we’re lucky Hoping those steps keep generally moving in a positive direction for you!!

 

[StarChild56]

I’m so incredibly glad that Dr Kaufman has been so helpful for you, especially after all you’ve gone through
Thank you very much, I appreciate it <3

I know this must be exhausting for you, so no rush in responding, but I’m curious about two things –

1. You mentioned he is helping your POTS, can you tell us more about this?
Sure - although there are some overlapping symptoms that could be from more than one illness, too. But one that is for sure POTS is that I get at least a 30 point increase in heart rate from laying to standing and often far more - and even from sitting to standing it was at least 30 points. Also, just walking a few steps my heart would race and get high (for me). So It can easily get Idk 150 after a small about of time - like sometimes I'd walk from my bedroom into the en suite bathroom (so 20 feet?) use the restroom and be panting out of breath. From the Orthostatic Intolerance, I sometimes get a big drop in blood pressure upon standing but sometimes it goes up.

I instantly feel upon standing like my feet and lower legs are made of lead/ super heavy, my feet get tingly sometimes my hands too. I feel weak, dizzy. The longer I am standing I feel sometime shaky and nauseous. I definitely reach a point where I absolutely must sit down (though I feel better laying down).

I hope that explains it? Taking the propanalol helps keep my heart rate much lower which helps but does not in any way solve the POTs. I still feel the symptoms but not nearly as severe but I can't stand for very long nonetheless. Walking is not comfortable and I do not like it. I do not like sitting up - although in the last few weeks I have been able to sit up in my recliner at times whereas before I always recline, or lay flat in bed (and my recliner is a zero gravity one, I can lay flat and often do)

2. What is your hydrocortisone dosage which you take three times a day? What improvement have you noticed (in terms of symptoms and testing?)
I am taking two 5mg tabs in am, then one 5mg tab 4 hours later, then one half of a 5mg tab at 4 pm (this is based on me taking my first dose about 7:30 am).

I really don't know - I was so very ill with so many different things that even though I am a little better, I am still very ill. Dr. K says I have a very complex case, and there are so many illnesses, some overlapping symptoms and still testing left to be done. So on this one I do not feel like I felt a big difference like I can tell with the Valcyte and propanalol. But I trust Dr. K, and I know my cortisol test was almost completely flat - whereas it should start off high and I believe just taper down. Or something. Not flat across the graph. Who knows, if I weren't taking the hydrocortisone I may be way worse off.

Thanks so much for sharing everything. As @Sushi said, treatment for our illness is very two steps forward, one step back, and so on...if we’re lucky Hoping those steps keep generally moving in a positive direction for you!!

I am happy to share if it can help anyone in any way. I have learned so much from this forum although I haven't been on it a lot and still have so much to learn. My brain fog is bad enough that sometimes I really can't grasp the information I read (although that too has improved a bit).

Thanks for your well wishes and I wish you the same.

 

[StarChild56]

I still don't seem to understand how to use multi-quote, I apologize if I've made it difficult to read.

 

[Sushi]

I still don't seem to understand how to use multi-quote,

Just "select" the text you wish to reply to and a pop-up will appear with two choices: Multiquote and Reply. Reply will quote your text and take you directly to the reply window. Multiquote will allow you to select other passages to reply to (even from different threads). Then when you go to the reply box there will be the option to: "Insert quotes." When you click on that all your quoted passages will be there and you can click on "Quote these Messages." Hope that helps.

 

[StarChild56]

Just "select" the text you wish to reply to and a pop-up will appear with two choices: Multiquote and Reply. Reply will quote your text and take you directly to the reply window. Multiquote will allow you to select other passages to reply to (even from different threads). Then when you go to the reply box there will be the option to: "Insert quotes." When you click on that all your quoted passages will be there and you can click on "Quote these Messages." Hope that helps.

I will try this next time, thank you!

 

[Gingergrrl]

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.

I agree and he took the most thorough medical history (back when I first saw him in 2014 and he continues to this day), of any doctor that I have ever seen in my life.

Dr. K is also very circumspect - there is evidence that I would do well on a particular antibiotic, and that I have underlying bacterial infection (in addition to others). But Dr. K is waiting until I get some other testing first. He also thoroughly explains the reasons he wants to do a test, explains how it is viewed in the wider medical community, why he thinks it would benefit me - and he will not do testing without good reasons to do so (based on history, illnesses, etc.)

I agree with all of this as well. I have several close friends who are his patients (in real life and here on PR) and each of our treatment plans are different. There is nothing "cookie cutter" about his approach.

I am so sorry that you are struggling so much right now @Forçe e Honra and feel horrible that I got so behind with e-mails. You have been on my mind and I enjoyed reading your update in this thread (even though I wish you were doing better). But I am happy to hear that your treatments and meds are being clarified and you are having some improvements.

Last September I saw a neurologist in my city, in a respected University medical office. He saw my list of diagnosis I brought (like above) from Dr. K and he literally smiled and told me I was really, really lucky to have a doctor who can treat MCAS and POTS, and that he must be a good doctor! He said he didn't even learn about either in med school (and he is young, though a neurologist).

My Endo said something similar at my appt today. Today was the first time since 2014 that he saw me walk without wheelchair and that I drove myself to my appt. He almost had tears in his eyes and he said that while he personally would not have been comfortable prescribing the treatments that I got from both Dr. K and my MCAS doc, he is so grateful that I found them and that there are doctors out there with this kind of knowledge and expertise.

Dr Kaufman has worked very hard to give you your life back, and I can fully understand why you have so much respect for him. Hopefully he can do the same for me as well! Cheers

Thank you and I apologize if I sounded defensive, I am just so grateful to him and was confused by some of your earlier posts but now I understand better what you were trying to express! Best wishes in your treatment.

 

[StarChild56]

I agree with all of this as well. I have several close friends who are his patients (in real life and here on PR) and each of our treatment plans are different. There is nothing "cookie cutter" about his approach.

I am so sorry that you are struggling so much right now @Forçe e Honra and feel horrible that I got so behind with e-mails. You have been on my mind and I enjoyed reading your update in this thread (even though I wish you were doing better). But I am happy to hear that your treatments and meds are being clarified and you are having some improvements.

@Gingergrrl - Thank you but please do not feel horrible at all, really. I know you are going through a lot with your dog's recovery from surgery and inability to use her back legs - and life - and everything. Do not worry we will touch base when we do and it will be like we spoke the week before. I was so happy to read your updates yesterday about driving and walking more. Just fantastic. So take care and we will connect soon enough



My Endo said something similar at my appt today. Today was the first time since 2014 that he saw me walk without wheelchair and that I drove myself to my appt. He almost had tears in his eyes and he said that while he personally would not have been comfortable prescribing the treatments that I got from both Dr. K and my MCAS doc, he is so grateful that I found them and that there are doctors out there with this kind of knowledge and expertise.

So awesome!

 

[Gingergrrl]

@Gingergrrl - Thank you but please do not feel horrible at all, really. I know you are going through a lot with your dog's recovery from surgery and inability to use her back legs - and life - and everything. Do not worry we will touch base when we do and it will be like we spoke the week before. I was so happy to read your updates yesterday about driving and walking more. Just fantastic. So take care and we will connect soon enough

That is so sweet and thank you so much. There are such amazing people on this board, it never ceases to amaze me! I look forward to catching up with you in the future, too.

 

[Daydreamer45]

I am happy to share if it can help anyone in any way. I have learned so much from this forum although I haven't been on it a lot and still have so much to learn. My brain fog is bad enough that sometimes I really can't grasp the information I read (although that too has improved a bit).

Thanks for your well wishes and I wish you the same.

Hi Force e Honra, I have POTS too, and some yrs back it was about your level (Although not sure it ever got to 150 - I’m really sorry, that’s rough). As my health has improved from rest, so has my POTS. But it’s still a problem that would be great to solve.

Dr Kaufman put me on other meds for my POTS, which unfortunately I had bad responses to. When I see him next I’ll bring up beta blockers like your medication. And maybe that can work for me.

Thanks for the info on hydrocortisone too. I don’t notice any difference, but I’m also in a lower dose.

I really appreciate you sharing everything, especially when you’re so low on energy!

As for understanding the complex info on this site, there is so much for me to learn, and my brain is so slow witted nowadays, that it’s going to be a challenge! But I’ll keep at it
Very best wishes, Amy

 

[Daydreamer45]

Thank you and I apologize if I sounded defensive, I am just so grateful to him and was confused by some of your earlier posts but now I understand better what you were trying to express! Best wishes in your treatment.

Thank you!!

 

[StarChild56]

Hi Force e Honra, I have POTS too, and some yrs back it was about your level (Although not sure it ever got to 150 - I’m really sorry, that’s rough). As my health has improved from rest, so has my POTS. But it’s still a problem that would be great to solve.

Dr Kaufman put me on other meds for my POTS, which unfortunately I had bad responses to. When I see him next I’ll bring up beta blockers like your medication. And maybe that can work for me.

Thanks for the info on hydrocortisone too. I don’t notice any difference, but I’m also in a lower dose.

I really appreciate you sharing everything, especially when you’re so low on energy!

As for understanding the complex info on this site, there is so much for me to learn, and my brain is so slow witted nowadays, that it’s going to be a challenge! But I’ll keep at it
Very best wishes, Amy

Best of luck, I think you are in good hands with Dr. Kaufman. The best, imo.

 

[Dallase1]

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.

I see you were treated for C. Pneumoniae. What were your titers before you started? Did you have breathing issues? I just tested positive for IGM titers, my IGG titers are pretty low.

 

[chris160]

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.

Could you expand on "found the cause of my POTS". What did Dr. Kaufman determine was the cause of your POTS?

 

[Dallase1]

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.

Could you expand on "found the cause of my POTS". What did Dr. Kaufman determine was the cause of your POTS?

That’s great. I am considering LDN. How did it help you? Also, how did you get IVIG? Did you have low subclasses?