Seeking information on long-term outcomes with Dr. Kaufman

[Nickster]

@ivorin My 26 year old son does not respond well to the mcas meds (ketotifen and chromolyn) and is unable to take them. One thing that I have noticed is that when he over exerts himself or reacts to drugs/foods, it sets him back. The only thing that seems to help is rest. Somehow he manages to get better and get thru the day. He still suffers with his pain and cognitive issues, but, they do get better. You have exerted a lot of energy with your travels and doctors appointments and supplements.

Dr Chheda wants him to try ivig since he can't tolerate the supplements.

This "disease" is so hard. These feelings will pass and tomorrow will be a better day. Try to hang in there.
Sending love to you.

 

[Vojta]

Have you tried ivig? If so, what was your outcome?

The doc wants my son to do ivig.

No, because it's not option for me. It's extremely expansive and I don't have insurance in US (also frequency of IVs and indefinite timeline is problem) and nobody will prescribe it to me in my country because it's not approved for any of my diagnosis and nobody will give it to me and I doubt I will convince anyone in the future because they would have problems with insurance company. So my only option would be to move to asia and try getting it there.

 

[pibee]

Anyway if someone takes Ketotifen I have bottle (1mgx178caps). I can't take because I got sick from it just after 1-2 doses and it cost me like 220$...

i want to try it, i am in Croatia so you can send me if you're in Czech Republic. Send me inbox msg.
Btw, you can get IVIG at Kenny De Meirleirs' office either in Brussels or in Slovenia one day a month. I dont know however what dose would he give,... and of course you have to pay yourself, it's 500 EUR for 10 g i think. A bit more than pharmacy price.

 

[unicorn7]

Is SCIg not an option? Maybe there's a difference I don't know about, but it is way cheaper, less potential side-effects and you can do it yourself.

 

[Rlman]

@ivorin do you think it would be worth doing one of those Mayo clinic antibody panels that were listed in Learner1's pdf earlier in this thread? Mayo seems more legit than the other labs though i could be wrong.

 

[Rlman]

maybe can someone e-mail the Cunningham study to Dr. Kaufman to see what he thinks?

@ivorin did you read the study yourself? Please don't rely on my posts with the excerpts from the study to decide if the test is accurate. Read the study yourself please.

the study i quoted also mentions other studies which may be worth reading.

 

[Rlman]

from a 2014 Stanford U article http://stanmed.stanford.edu/2014fall/brain-attack.html (my underlining):
"Madeleine Cunningham, PhD, professor of microbiology and immunology at the Oklahoma University Health Sciences Center, has developed a possible PANS diagnostic panel that tests for one brain enzyme and four antibodies against different brain proteins.

“The evidence she has published is strong, but it’s just the tip of the iceberg,” Frankovich says. “We still have a lot more work to understand what these four antibodies mean and how reliable they are in the clinical setting.” For one thing, healthy people have low levels of these antibodies; scientists still don’t understand what constitutes a critical level of these antibodies and why they enter the brain. Clinical studies at several sites around the world are attempting to independently validate the panel.

 

[ivorin]

@Rlman Thanks for the additional information, we haven't done the full Mayo panel, but we have done most of the antibody tests in it and they were negative. At first we were sure I have autoimmune encephalitis of some type but it just didn't show up in any tests. I will try to see what can be done about testing the cranial instability too.

I haven't been able to try the Cutler protocol as waking up a few times in the night is impossible for me as I can't fall back asleep and after one or two days I'm so exhausted and spaced out I can't take it any more. Until there is a protocol that can be done on a normal sleeping schedule I don't think I can pursue that option further.

Thanks again

 

[Gingergrrl]

@ivorin Please do not give up hope yet. Can you remind me which Mayo Panels you did? Have you been tested for anti NMDA and brain specific autoantibodies? Have you done the PAVAL Panel & paraneoplastic Abs? Is your ANA titer positive?

I know nothing about the Cunningham Panel and Dr. K has never once even mentioned it to me. There are so many auto antibody panels and we chose mine based on muscle weakness, breathing weakness & POTS.

He will keep looking, he will not give up on you and maybe your problem is not even Autoimmune at all. Please don't give up hope yet. You made it all the way to CA from Croatia with your mom who obviously loves you to make this trip. Please don't give up this soon. We are here for you.

 

[Learner1]

I have been wondering about Consulting Kaufman but I feel my issues have a lot to do with toxins...heavy metals ....oxolates...maybe copper & iron dysregulation & he doesn't seem to factor that in ..,

I have infections also. I currently work with a MAPS or autism doctor.

It's such a big investment of time & $$$ ..,it's hard to know what to do.

I'm a patient of Dr Kaufman's. He is a wizard with immune system, infections, and HPA axis issues, and has respect for nutrition.

However, for toxins...heavy metals ....oxolates...maybe copper & iron dysregulation, he was satisfied that my naturopathic/functional medicine doctor had far more knowledge and has left that part of my treatment alone.

If you have an excellent functional medicine doctor with chelation and detoxification experience who understands oxalates, I would bet you'd be best served there. There's a good case for seeing both types of doctors as I do, as long as you keep both informed about what you're doing, ensure labs are shared so they can best coordinate treatment.

 

[aquariusgirl]

Thanks...Dr Brewer says all my viral titers are ok ....but Gcmaf helps?!

My recent reaction to Flagyl has made me realise I have a serious brain infection but god only knows what.

 

[Learner1]

Never heard of Dr. Brewer. What is Gcmaf going to help with, exactly? By what mechanism?

Did they test your CSF to find the infection?

Drug reactions can be from allergies to inert ingredients or MCAS (I just had 2 reactions in the past 24 hous to a drug I've had safely for years - seems my MCAS is acting up...)

Seems wise to figure out what problems you're fighting, prioritize them, then go the the appropriate doctor for treatment.

 

[aquariusgirl]

Are you saying Kaufman tests patients CSF for infections? Because that would be interesting.

 

[Learner1]

I'm sure he could order it.
A friend's daughter with MS recently had one done at a hospital here in Seattle, so other doctors could also manage to order it done. Dr Bergquist, the Swedish ME/CFS researcher is looking into CSF of ME/CFS specialists.

 

[Rlman]

Thanks again

your very welcome @ivorin on the cutler protocol DMPS can be used every 8 hrs unlike the other chelating agents which are about every 3-4 hrs. i know naturopaths have other protocols that use these chelating agents less frequently. maybe at least its worth trying a dose or a few just to see if you have a reaction? if someone is very toxic with metals they usually feel some side effects from the chelation from what i have read. so if you felt something significant maybe it would be a sign that metals are an issue. btw only do so if you no longer have mercury fillings as chelation while fillings are in is counterproductive and dangerous.

btw have you looked into mold toxicity? just wanted to mention that as lots of people with Lyme find that mold is actually the main culprit for their symptoms rather than the lyme itself. there are some blood tests i think that can help determine if mold is an issue (survivingmold.com lists them).

at least California seems to have lots of doctors who specialize in complex illnesses.

All the best to you!

 

[kms1990]

Update:

I am experiencing increasing chest and neck pains as well as neuro-mental issues. The meds I've been given, that I listed before don't seem to be helping at all with MCAS (which I don't believe I have) and could possibly causing me to feel worse.

I feel very torn about submitting myself to Rituximab treatment based on the Cunningham panel given the information provided by Riman. The only other proof of autoimmune involvement is a slightly positive Celltrend panel which is also a very questionable finding.

I don't know what to do. I am declining and have nowhere else to go. I don't think I will make it for another few years which we need even by the most positive expectations. I am unhappy and in pain beyond what I could have even have dreamt before ME, I want to live so badly but whatever I try just keeps backfiring and making me worse. I feel like this has only one way of ending and that's with me taking my own life.

I really need help with coping with the sadness and loneliness but I have extremely bad reactions to antidepressants and supplements meant to help with mood and stress, and I've no idea what to do.

@ivorin - I'm very sorry to hear of your suffering. I cant really advise what will help you, but all I can say is the single most important thing in my case I believe is persistence. You just have to keep going to your doctor, keep trying new things again again and again. Don't give up. Just stay persistent at all costs. Dr Kaufman is a really good sounding board for this and will help you to continue to try new things.

On the more scientific side of things, I had a lip biopsy done at mayo clinic which did find I had white blood cells invading my tissues at a higher level than normal which is proof of an autoimmune type issue. This is something worth exploring in my opinion.

 

[MEPatient345]

I am experiencing increasing chest and neck pains as well as neuro-mental issues.

Hi ivorin, I just wanted to warn you that I had increased chest pain and a major depression / sadness response to taking LDN. Both chest pain and sadness went away when I stopped. Just to be aware of in case LDN has increased your symptoms. I hope you get a break soon. Hang in there.

 

[Gingergrrl]

@ivorin How are you feeling now? Hoping you can update us when you are able and we are thinking about you.

 

[ivorin]

Hi everyone, doctor Kaufman had me stop all the meds and my state calmed down a bit. He still believes it was an MCAS reaction. We are going to start it again but much slower and step by step and see I get a reaction again. One thing I did add was Celebrex which is an anti-inflammatory as all of my prostaglandine tests came back positive signaling some sort of inflammatory state - this seems to be helping.

We are also going to go and do a SPECT scan to see what is going on with the bloodflow in my brain and an upright MRI to exclude structural changes as a possible issue. I'm holding on again now, the symptoms subsided a bit. I ended up at the ER one night from the chest pains but they are calming down too now.

 

[Gingergrrl]

Hi everyone, doctor Kaufman had me stop all the meds and my state calmed down a bit.

One thing I did add was Celebrex which is an anti-inflammatory as all of my prostaglandine tests came back positive signaling some sort of inflammatory state - this seems to be helping.

This is all good news and I am glad the Celebrex is helping and you feel that your overall state of inflammation has calmed down a bit.

I'm holding on again now, the symptoms subsided a bit. I ended up at the ER one night from the chest pains but they are calming down too now.

I'm so glad you are holding on again and that the chest pains are calming down (but am sorry you had to go to the ER). If it was El Camino (near Dr. K), I have been there and was hospitalized there for a week in 2015 when my MCAS was out of control. Thanks for updating us and glad you are getting some relief.