Has anyone been to Cedars Sinai Hospital California and Dr Montoya?

[Insomniac]

Has anyone been to Cedars Sinai Hospital in California to have their CFS/ME treated?

Has anyone also been to see Dr Montoya at Stanford?

An Israeli-American guy I know with the toughest classic definition of ME has been treated in Cedar Sinai Hospital and voila! he is recovering now. He is active and exercising.
The only thing he has left is a bit of POTS.

They did complete testing on him there. They did a spinal tap. They told him that he has antibodies to the brain and they said that it happens a lot in CFS. Then they gave him Gamma Globulin infusions. He has recovered.
He said that he claimed it on insurance as "Limbic Encephalitis".

He says that I should go to Cedars Sinai too, but to do it through Montoya as a foreigner paying privately. The cost would finish my bank account, but I would do it if it would give me improvement like he has got.

It's strange when you hear of someone in faraway, exotic California getting well and you are wondering if you are missing getting well too. Is there anyone else who improved on Gamma Globulin in Cedar Sinai Hospital?

 

[*GG*]

Wow, tough decisions to make. If I recall correctly you have this illness pretty bad, right? So there is no possibility of being reimburse some from your Insurance in Israel? Wonder if the protocol would work as well on woman as a man? Are there hormones involved?

Best of luck on your decision!

GG

 

[Mary]

@redrachel76 - I'm a little puzzled. Dr. Montoya is at Stanford Health Care which is in northern California, not too far from San Francisco, and Cedars-Sinai is in Los Angeles, southern California. So I don't think Dr. Montoya could treat someone at Cedars-Sinai, which is 350 miles away from Stanford.

Wow - though - that's amazing that your friend was treated successfully at Cedars-Sinai. Can you find out the name of the doctor who treated him there? I don't know of anyone who has been treated successfully with Gamma Globulin infusions there, but it is intriguing to say the least!

I just did a little research. Here's a Cedars Sinai Department of Neurology link which mentions encephalitis: http://www.cedars-sinai.edu/Patients/Programs-and-Services/Neurology/Conditions--Treatments.aspx

 

[me/cfs 27931]

When I phoned about 4 months ago, Dr. Montoya wasn't seeing new patients. New patients could only see one of his PA's.

Also, there was a 9-12 month waiting list.

 

[Insomniac]

Interesting. He said that Dr Montoya could do tests on me and then refer me and get me into Cedars Sinai.

I am now wondering if my friend really had mild encephalitis caused by past Hashimotos. (He had Hashimotos once but it went.) and was misdiagnosed as CFS.
But he wouldn't lie to me.

I have been in online contact with him for months now, watching his steady improvement while at Cedars Sinai.

Also, other than the abnormal spinal tap and low blood volume, which they only found in Cedars Sinai, all his blood tests were "perfect", just like mine. It's typical for CFS patients.

I understand that he did not get just one doctor treating him in Cedars Sinai but a couple.

He can't be the only person with CFS and POTS who Cedars Sinai.

 

[me/cfs 27931]

Interesting. He said that Dr Montoya could do tests on me and then refer me and get me into Cedars Sinai.

Give Stanford a call and ask. Perhaps things have changed in the past 4 months.

I wound up going to the Open Medicine Institute in Mountain View. The wait was only a couple months as opposed to a year.

 

[Insomniac]

I would prefer to hear of others who recovered or had improvement in Cedars Sinai or with Montoya before giving them a call or thinking about it myself. I want to know if my friend is a one off success story or if there are others.

 

[me/cfs 27931]

Hope things work out for you and you get the treatment you're seeking.

 

[Mary]

Interesting. He said that Dr Montoya could do tests on me and then refer me and get me into Cedars Sinai.

I am now wondering if my friend really had mild encephalitis caused by past Hashimotos. (He had Hashimotos once but it went.) and was misdiagnosed as CFS.
But he wouldn't lie to me.

I have been in online contact with him for months now, watching his steady improvement while at Cedars Sinai.

Also, other than the abnormal spinal tap and low blood volume, which they only found in Cedars Sinai, all his blood tests were "perfect", just like mine. It's typical for CFS patients.

I understand that he did not get just one doctor treating him in Cedars Sinai but a couple.

He can't be the only person with CFS and POTS who Cedars Sinai.

I guess it's possible that Montoya could refer someone to Cedars Sinai, despite the long distance. I saw Dr. Kaufman at OMI in Mountain View (near Stanford) but live in southern California, and had a test ordered by Dr. Kaufman done at Cedars Sinai because of where I live (it wasn't a spinal tap, it was a gut test, I shouldn't but I forget the name), though I didn't see any doctors at Cedars, just had the test done.

It would be a lot of traveling from Stanford to L.A., especially for someone from out of the country - but I totally get it that if it worked, it would be worth all the effort.

 

[Gingergrrl]

Rachel, I will reply to your PM as soon as I can re: this issue as I have been to Stanford and Cedars (although I did not go to the Stanford CFS clinic and have never seen Montoya.) My experience was very different than your friends and will try to respond via PM as soon as I can hopefully over the weekend.

 

[IreneF]

I see Montoya at Stanford. I don't see why he would refer anyone to a different hospital, since he works for one of the best. Anyway, if your friend had limbic encephalitis or an autoimmune condition, then he didn't have CFS/ME.