Dr.an Extreme Disappointment!

[T_Anna]

DS tested negative for Lyme with the CDC.

 

T.Anna

[JoyBop]

I commend everyone for dealing with this hot and emotional topic so well. This is exactly why so many of us do come here for support and learning. I just wanted to throw in the fact that the doctor - patient relationship is a very individual and unique thing. What works for one or many may not work for everyone for many different reasons. Also, our children's conditions are all unique and we can not generalize others based on our own experiences. We are all on our own journey to seek the best treatment we can for our children. Also, medicine is as much an art as it is a science, particularly when dealing with such unknown and little documented disorder. No one doctor has all the answers and it may take some of us a couple dozen doctors before we find the right one for us. T Anna, I'm glad you have other avenues lined up for your Ds. And sorry again that this just wasnt the right one for you.

[Hopeny]

DS tested negative for Lyme with the CDC.

 

T.Anna

I am not commenting on your specific case but there really is no relevance of CDC criteria to Lyme due to conflicts of interests in regards to patents held by the authors. Fortunately for me my children tested CDC positive so we didn't waste years seeking treatment, but many with active cases of Lyme do not test CDC positive. CDC does not consider a number of Lyme specific bands and considers a number of bands that cross react. I put up a post under the topic western blot to explain in more detail. Sorry I don't mean to hijack the thread but I think it's important for parents seeking answers to have the facts about Lyme testing. The book cure unknown is a good source written by a medical journalist to better understand the testing.

[pr40]

just to respond Nancy: I do say in the post that SSRIs treat symptoms. The opinion that SSRI can treat PANDAS is the one we got from three drs who believed in PANDAS but did so in a specific way and did not want to use abx unless there was an ongoing infection.

For our kids, we are on the same page with you. We don't want to use SSRIs. But we do leave it open that perhaps in the future we might. I seem to recall that Sammy's treatment included and still includes some psych drugs.

At any rate, we need more discussion of this issue how to treat psychiatric part of PANDAS, etc., especially in very young children.

[rowingmom]

DD also tested CDC negative on both the ELISA and western blot, although she reacted at a low level (indeterminate) for some lyme-specific bands on the Igenex WB test.

 

She did test positively for bartonella. If I had assumed coinfections were not a factor because of her non-reacting CDC lyme test, we would be in a different place now.

[trintiybella]

I want to add also that my REALLY SICK child is doing MUCH better since stopping antibiotics for Lyme/Bart. We are treating for viruses with lysine and she started to sleep and is not so agitated! Best we have ever seen her. We also have valtrex to try but I'm not messing with what I have right now. Have u dealt with viruses Anna?? Sorry about your appointment Anna. Don't think I'm going to see him!

[T_Anna]

We have dealt with viruses and the numbers improved, but DS is still very stuck.

 

I am so glad to hear about your improvements!

 

Hope you are getting rest too.

 

T.Anna

[LaurenK]

I'm so sorry you had such a horrific experience. He sounds more like a psychiatrist, than a neurologist whom supposedly is an expert with autoimmune encephalitis. Your experience reminds me of the first psychiatrist I took my son to two years ago. He said the same thing regarding depression, etc., then proceeded to prescribe his standard dose of Zoloft and Clonazapan, which once given, made my son 100 times worse. I know that I don't have to tell you this, as you're a fighter, but don't let this get you too down. We all just have to keep plugging along until we find the right healthcare professionals to best suit our children's needs. I'm sending a great big hug your way!

You could not be more wrong. I'm sorry but you can't make a genuine negative statement such as that without having at least one face to face interaction with him. Have you had that? Based upon what one person "said," you jump in, follow along and insult a great doctor. If someone jumped off of the GW bridge would you too? Its one of those types of situations. These are the types of statements that prevent patients from seeing doctors which could help them. I think we're all sorry that she had a bad experience- that being said, there's no reason for you to be making false and negative assumptions about the man which I can prove are 100% untrue. Very disheartening, your comments.

Edited July 27, 2013 by LaurenK

[Guest]

Wow. I've been referred to this doctor so yea, a lot of conflicting comments here.

 

I don't even really have a root cause for what's going on with me, just tons of isolated diagnoses without any symptom relief from TONS of doctors for the past 10 years. And I am declining month by month. Is Dr. N one to figure out what is going on? Can he sort through a huge mess of problems, symptoms, medications tried, doctors seen, to figure out what is going on? I need to know before I fly from Florida to NYU.

 

I don't think my mother or I can take another failed appt. We just can't. 10+ years, hundreds of thousands of dollars spent, and I get worse and worse. I can't even leave my house, rarely leave my bed, I can't sleep, I have ocd 24/7, when I do sleep horrible nightmares, unspeakable fatigue, severe bladder problems, searing pain through out my body, very severe orthostatic intolerance, running on adrenaline and constant tachycardia even with beta blocker - that would be a long haul for me and probably make me really sick and I just don't know what to do..........................................................

 

I've also seen 2 psychiatrists for the past 10 years and they are really good and well known but have not been able to bring me any relief, my present psychiatrist literally said "you've tried everything, I have nothing to offer you." I also did ECT and it didn't help at all. Perhaps I just have CFS (chronic fatigue syndrome) and I'll fade away like the rest of them getting no help b/c they have no idea what causes it.

 

Sorry I'm frustrated and hearing such conflicting things does not help. I also did lyme treatment already, saw 2 LLMD's (drove 4 hrs to see the LLMD and paid quite a bit of money), and no symptom relief, ended up getting c-diff......... So it's not like i haven't tried that, it never felt "right", it never clicked with my mom or I as an issue and there were no labs to support me having it; also doesn't account for all the viral infections.

 

I have never tried any auto-immune treatment to date. It was just never considered or tried, which is why this is the LAST path I can take. Never been on steroids, or IVIG, or chemotherapy......etc. Vioxx helped a lot with my pain in high school but that is the extent of anti inflammatories. I saw a rheumatologist when became violently ill and he said I had FM and ran a basic auto-immune panel and told me to "stretch and exercise" and at that point I literally was too fatigued to get out of bed.

 

That's all........... CFS doctors don't do autoimmune treatment, have no clue why, they do "symptom relief" (doesn't work clearly) and a lot of immunomodulators / more like immuno-stimulants (made me violently ill / insane side effects - immunovir, equilibrant, inosine)...etc.

 

Guess I'm hijacking the thread. I just need to be sure that this is a worth while trip, may be the last we can afford.

JuliaFaith did mention another doctor and I'm grateful for that information and will try to do some reading on him. Thank-you.

 

But I have to admit, part of me does not want to see any more doctors, I'm so spent emotionally and physically, I'm just so tired.

Edited July 30, 2013 by Guest
changing doctor's full name to just the initial

[LaurenK]

Ophelia, my overall suggestion when you meet him would be to look 100% incapacitated. That's what I looked like when I met him and that's what got his attention. Also, dress right, it's a nice office, try and make a good first impression. Originally, T. Anna made a comment about the nurses and socks, but my personal opinion is dress your kid right if they can't dress themselves. I'm sorry, but that's how I feel. The nurses are a little bit standoffish at the beginning but now they are so kind, sometimes it just takes a little while to get to know them.

 

As I told you before, the first time that I went to see him, I was desperate, I could not walk in a straight line, my tics were so horrific that I was having 50 a minute. I could still talk normally and be myself though. From my experience with him, he is much more receptive to neurological autoimmune issues than psychiatric. My mother was there with me and she said to him very directly, IVIG and steroids put my daughter in remission for 10 years, we need them again and he said ok.I also had my entire medical history typed him. He admitted me within a week...got everything 100% covered. and it was a bit of a " trial" treatment. The results were nothing short of amazing. I think he was shocked at the effectiveness. I had 0 tics. Since he saw me from 20% to 100% functional, he has stuck by my side 1000%. He never even once put any psychiatric drugs on the table- always says no you're issues are autoimmune.

 

I think a lot of it is how you present it and present yourself. Frankly, yes I think he does like 1) the most complicated cases 2) the cases that will get him attention 3) The cases that are fixable. (not everyone is, it's a very sad trueth) Yes, this is sort of messed up but I have no issue with it because I fit all 3 categories. However, unlike you in my past, I had a very clear clinical improvement and remission from IVIG and steroids that last 10 ten years. Going to him with essentially no proof of anything autoimmune, no positive response to immune treatments, and then asking him for an immune modulating procedure might not really get you anywhere, but try.

 

Go to him with 1 thing, don't overwhelm him with several issues. Don't mention anything alternative, he's 100% scientific article kind of guy. He is very skeptical of anything alternative. The chronic lyme, chronic infection piece will not fly with him. He does not prescribe long term abx either. Be very very straight forward until you get to know him better and build a relationship with him. Also, another thing that I did was that I kept going back!! Not every single visit was positive, but I always came back and stuck with him. Furthermore, who's to say if T. Anna went back to him and had the MRI like he prescribed, she wouldn't have a better experience. I'm not sure what else to tell you Ophelia.

[Guest]

Ophelia, my overall suggestion when you meet him would be to look 100% incapacitated. That's what I looked like when I met him and that's what got his attention. Also, dress right, it's a nice office, try and make a good first impression. Originally, T. Anna made a comment about the nurses and socks, but my personal opinion is dress your kid right if they can't dress themselves. I'm sorry, but that's how I feel. The nurses are a little bit standoffish at the beginning but now they are so kind, sometimes it just takes a little while to get to know them.

 

As I told you before, the first time that I went to see him, I was desperate, I could not walk in a straight line, my tics were so horrific that I was having 50 a minute. I could still talk normally and be myself though. From my experience with him, he is much more receptive to neurological autoimmune issues than psychiatric. My mother was there with me and she said to him very directly, IVIG and steroids put my daughter in remission for 10 years, we need them again and he said ok.I also had my entire medical history typed him. He admitted me within a week...got everything 100% covered. and it was a bit of a " trial" treatment. The results were nothing short of amazing. I think he was shocked at the effectiveness. I had 0 tics. Since he saw me from 20% to 100% functional, he has stuck by my side 1000%. He never even once put any psychiatric drugs on the table- always says no you're issues are autoimmune.

 

I think a lot of it is how you present it and present yourself. Frankly, yes I think he does like 1) the most complicated cases 2) the cases that will get him attention 3) The cases that are fixable. (not everyone is, it's a very sad trueth) Yes, this is sort of messed up but I have no issue with it because I fit all 3 categories. However, unlike you in my past, I had a very clear clinical improvement and remission from IVIG and steroids that last 10 ten years. Going to him with essentially no proof of anything autoimmune, no positive response to immune treatments, and then asking him for an immune modulating procedure might not really get you anywhere, but try.

 

Go to him with 1 thing, don't overwhelm him with several issues. Don't mention anything alternative, he's 100% scientific article kind of guy. He is very skeptical of anything alternative. The chronic lyme, chronic infection piece will not fly with him. He does not prescribe long term abx either. Be very very straight forward until you get to know him better and build a relationship with him. Also, another thing that I did was that I kept going back!! Not every single visit was positive, but I always came back and stuck with him. Furthermore, who's to say if T. Anna went back to him and had the MRI like he prescribed, she wouldn't have a better experience. I'm not sure what else to tell you Ophelia.

It's good advice. But there is proof of auto-immunity for me, my main diagnosis is: myalgic encephalomyelitis - which they believe is inflammation of the CNS and possibly the brain.

 

And like I mentioned, I've never done any auto-immune treatment. They put me on stuff to stimulate the immune system (VERY experimental stuff that you buy from canada) and who knows if it may have worked, I had violent reactions to tiny doses and could not continue. I am so sensitive to medication and supplements, it's unreal. I've had supplements make me pass out, medications cause immediate sleep paralysis, seizures at baby doses.

 

I do have my entire medical history typed out. I also have proof that I've tried everything to treat is psychiatrically without any help in the slightest. I've literally been on most the meds and done ECT and CBT for over 10 years and nothing helped.

 

The biggest mystery is how fatigued I am, how taking a shower sends me to bed, how I can't sleep.

 

Thanks, this is good advice. Very helpful. I always look dead tired, sleep deprived, eyes half shut, but I don't have the visible tics you are describing and the movement disorder stuff hasn't been an issue lately (I take klonopin all the time). To the naked eye, other than looking like I haven't slept in a week straight, I look fine.

 

Going back and forth may be a huge issue, I was hoping things could be done by phone. I'm an disability so I don't have hardly any money and I'm literally so ill that flying to and fro could make me permanently worse. NYC is awful too for illness, just the noises and movement make me crash.

 

Does anyone know if he knows about M.E. and CFS?

[LaurenK]

N wants checkups every 6 weeks where you see him and he does a full neuro exam, at least in my case. Make sure you ask if sypke consults would be possible.

Edited July 30, 2013 by Chemar
replacing doctor's name with initial

[PowPow]

Laurenk,

Did dr.give you any idea why you mave have relapsed? Does he consider it a relapse or something news?

I am curious, as my daughter has had strong positive response to pex and steroids, yet relapsed again this spring. she began to improve at 3 months post IVIG & still has some problems but generally is better. I do feel like she is walking a tightrope between major spiral down and normalcy. my other daughter is now about 2 years after her last treatment( pex and ivig) & is 100% better.

just curious if you've gained any insight from Dr N about relapse.

[LaurenK]

He said that once the autoimmune process has started, anything can set it off once you are in that hyper state. He said that IVIG will help fix that because it modulates the immune response to infections, prevents the auto antibodies from causing damage (he's researching this), and gets rid of them. Steroids and PEX only stop the inflammatory cascade where as IVIG changes the immune system. His philosophy interests me because I was never a chronic infection believer and his treatment protocol works.

Edited July 27, 2013 by LaurenK

[PowPow]

does he think you will ever be out of this hyper-immune state?

Thanks for answering. I am not a huge believer in the chronic infection part, either, but that is from our personal experience. I am not discounting anyone's elses observations.

Edited July 27, 2013 by PowPow