IVIG at 25

[Hitman3161]

Hi guys,

I haven’t posted here for a while. At at the end of last year I received a tonsillectomy and removal of my adenoids that showed evidence of chronic bacteria infection.

clinically the Pandas diagnosis fits me to a tee, and the diagnosis has virtually all been confirmed with Dr Kovacevic. I did manage to find some symptom relief  and returned to a good baseline  state of functioning after the operation but unfortunately the symptoms have returned in the last couple of months.

I’m scheduling  IVIG treatment soon in a last ditch attempt to find some long term relief and reclaim my life.

I’m incredibly anxious at the moment as I realise taking into acount my age the possible prognosis!

 

my question is a simple one, are there any success stories out there after receiving IVIG at such an old age?

From all reports the oldest case to receive IVIG with a successful outcome was 24!

Any feedback is much appreciated.

 

[MaryAngela]

This does not answer your question,  but be sure to test for Mycoplasma Pneumonia prior to IVIG.  My DS had his first IVIG with Dr.  K, who had only tested him for strep.  We didn’t see the improvement we were expecting from that treatment.  Another doctor found a Mycoplasma Pneumonia infection.  

As for age, I believe Dr. K has successfully treated adult PANDAS patients.  My DS is almost 14 and had debilitating PANDAS.  He has shown dramatic improvement from IVIG, and we believe his first onset was at age 14 months.  So although he is not near your age, he went untreated for over 10 years.  Since IVIG is used to treat other autoimmune disorders and encephalitis for adults, it seems like you would benefit no matter what your age is.  

[bobh]

Congrats on taking the tonsillectomy step - imagine that stuff still there, constantly provoking.

I may be wrong, but I doubt you will find anyone here that has treated at that age.  But it is still usefull to type IVIG into the search box (near top right) once you are in this forum, and read some of the stories.  There is one of an 18-year old, that ran into trouble I think also because of underlying infections.

[Hitman3161]

Thanks guys for your response. This is an unnerving time for me. Although, after the operation I was able to achieve complete symptomatic remission for 3-4 months and enjoyed a good period of health.

I have responded positively to every treatment intervention so far. Positive response to abx, tonsillectomy etc.

I understand that it may not work at my age, I have had a lot of social stress to deal with as well which has probably exacerbated the symptoms - I’ve dealt with social isolation for many years.

I am going to trust my gut and go ahead with the treatment, I’ll keep you posted and updated for the benefit of others - as I’ll probably be one of the oldest to receive treatment and success would be highly reassuring for the rest of us adults.

Thanks so much for your support.

fingers crossed 🤞 

 

 

 

 

[Hitman3161]

I do feel hopless at this point. Realistically, this one round of IVIG is my last hope. It doesn’t do much to account for the collateral damage that has been incurred over the many years of relapse and remit.

I have faced enormous social stigma over the years and remained socially isolated in all that time.

 

The symptoms themselves perfectly describe my case, as does the evidence of chronic infection last year when they finally removed my tonsils - full of puss; a puss filled cyst was also found in the sinus cavity.

 

I’m sorry guys, the illness has really robbed me of my life. I only wish I pursued this at 16.

 

During episodic flares my personality has dramatically changed along with behavioural regression and almost complete dysfunction add social media and psycho social stress and you have equated a living .

Dr K even describes it on his page as being like ‘the sorrows of welter’

I’ve never had a girlfriend, I’ve never really had friends as the illness has progressed.

 

I had a few months of bliss after the operation, only to downturn in the spring.

 

I feel like I’m grasping at straws here with the IVIG but I’m determined to see it through. To be honest sometimes I wish I wasn’t here at all, life feels like it has no meaning and trouble follows me everywhere.

 

Its like I’m two entirely different people at times, one in desperate state contending the illness -totally out of my tree - the other a calm, composed and proactive young man trying to forward his life.

 

I do appreciate your support, life just won’t seem to let me move on from the past.

 

I will definitely keep you posted though, and cheers Bob, Mary. Thanks again, much obliged for your support.

 

 

 

[MaryAngela]

My son’s case was severe.  We were in a very dark place multiple times, sometimes lasting over a year at a time.  Looking back, I don’t know how we survived.  What kept us going were those times of reprieve, like you experienced after your tonsillectomy...showing that there is an answer out there...but just needing to figure out how to sustain it.  My son responded well to tonsillectomy, antibiotics, NAC, IVIG, but nothing with complete and lasting results.  He is now receiving monthly HD IVIG at least until the end of the year.  His tics have been gone for the most part for over a year.  His OCD improved somewhat after 1st IVIG, but it wasn’t lasting (that is why I recommended testing for Mycoplasma Pneumonia first). His OCD is about 85-90% improved, but he still has major sensitivity to sound and odors, still has anxiety and focus issues.  He just started an herbal antiviral and an herbal antibacterial.  We plan on trying either the Paleo or Ketogenic diet soon.  Watch the documentary “The Magic Pill” (currently on Netflix). It is amazing the impact diet has on physical and mental health.  Also, Joe Rogan has a regular guest on his podcast, Chris Kresser. He promotes the Paleo diet and once used a specific example of a child with PANDAS symptoms (although he didn’t call it PANDAS) that was cured using the Paleo diet.  

Edited July 28, 2018 by maryangela
Additional thought

[Hitman3161]

Thanks Mary. I’ve been told there is 40% chance of success with IVIG. The worst thing of all is in retrospect I can say I’ve had this since childhood and never received any treatment whatsoever. So many years of relapsing and remitting.

 

currently I’m only able to get 500ml of cephalexin liquid form, I do have some prednisone to test the efficacy of IVIG, but the fact remains I’ve been  limited in support for so many years and essentially in all that time it’s gone untreated. At this rate I’m looking at the looney bin.

 

The operation last year was a success though, and showed just how many times my body had been hit with bacterial infection throughout the years. 

 

I think in in life sometimes you have to just bite the bullet, I don’t have full family backing, I’ll be traveling to Chicago alone next month. My Nan\grandma is the only one I’ve got.

 

The clinical picture never lies, I have no insurance as I’m from the UK, so it’s self pay and if it works It will have to be a one hit wonder.

 

The situation really is that bad. I need a miracle! But thanks again, I’ll make sure I’m clear of any possible infection before the treatment.

 

sorry to sound so negative.

My symptoms are:

urinery frequency

short tem memory loss

inability to concentrate 

insomnia, depression and hypersomnia

OCD intrusive thoughts

food restriction

loss in academic ability

behavioural regression, and house bound anxiety

on and off all my teens, the amount of social stigma and rejection I’ve faced because of that is enough in it self.

Does it sound like pandas though? I don’t think I’m mad, try telling that to a medical professional over here!

I wish everyone luck out there, it may be a little late in the day for me but I’ll stay strong and see it through to the end

 

Edited July 28, 2018 by Hitman3161

[MaryAngela]

Yes, it sounds like PANDAS...and miracles do happen.  My son saw his psychiatrist in person this week for the first time in 10 months, and the doctor said that his progress is a miracle.  Again, he has been doing monthly HD IVIG since May 2018.  The doctor said that we need to find something for the effects of the IVIG to be longer lasting.  This doctor does not use prophylactic abx, like Dr. K.  If you do long term abx, it is imperative to aggressively treat yeast.  My son was completely out of his mind from a yeast imbalance in the past. Also, please do watch “The Magic Pill”.  I am a hypocrite, because I haven’t implemented the diet yet, but I feel diet is the long term solution to my son’s health issues.  He already has an aversion to junk food, but I feel he may be sensitive to corn and other ingredients.  

Also, there are recent studies linking infection and inflammation to all OCD (not just with kids).  I’ll try to find the link.  

Most medical professionals are so behind on research regarding mental health issues.  They probably assume your theories were concocted by your OCD.  

Keep me posted.  

[Hitman3161]

Will do. I’m in a desperate position at the moment. 

Truth be told my mother and step father are against the diagnosis.

there is no family support at all.

Once the Dr’s over here opened me up they never bothered to identify the bacteria that had attached me for so long.

honestly, I totally alone and I look like I have dementia with every symptom exacerbation.

Relapse and remit for years and years.

on and off like a lightswitch.

I wouldn’t be able to afford monthly IVIG.

And I’m the case I go to Chicago, I have to go alone.

This is incredibly hard. I was even thinking about Switzerland for some time, my life has not had a single once of normality for such a long time.

I used to study physics, when I’m symptomatic and it hits at once I struggle to count change over the counter.

 

is there anyone I can talk to out there. I’m sorry to be a burden I’m just so desperate.

I know every time the symptoms abate I feel like a completely different person.

life really dealt me the wrong cards.

 

PANDAS I’m sure it is as Dr K has already told me.

is there any hope that one IVIG will be all it takes?

antibiotis helped; after the operation there was complete bliss for a short matter of months. Dealing with this is one thing rebuilding a life is another.

I’m totally lost at the minute, I just don’t know how one can go off and on like a light switch for so many years...

 

[Hitman3161]

Sorry about the rant; last year I looked like I had dementia.

I always remember the very same symptoms all the way through, every time I was ill.

I have argued so much with my parents and they are unwilling to help. The medical community over here hasn’t taken me seriously, but the evidence has always been there of PANDAS.

I am in an impossible situation as there is no clear course of getting better.

My gran  is my last hope at providing the funds for one treatment next month apart for that all I can hope is the disease goes back into remission. I’ve heard all the horror stories of the untreated adults, and I’ve had this for most of my life - it is a pediatric condition.

I'm stressed to the max, because I know with out any of this treatment I will never recover.

 

the worst part for me apart from the collateral damage this desease has caused to my reputation and future prospects. Is that my parents will just put the phone down on me whenever I look for a glimpse of hope and understanding.

I am completely lost. I don’t think about normal things anymore all my time is spent consumed with this condition.

without it though and in remission my whole personality changes.

There is the OCD and anorexia but the short term memory loss and the extreme anxiety has to be the worst part of this condition.

if it was mental illness and I don’t beleive

it is surely that wouldn’t be such a stark and acute change in all areas of my functioning.

no one loses their memory over night like a light bulb. 

Rant over, sorry guys! I’m terrified for the future 😕

 

[MaryAngela]

Please don’t lose hope.  Although we very recently have been able to get IVIG covered for my son, his doctor (Integrative Psychiatrist) feels the long term solution is treating yeast, bacteria, viruses and parasites simultaneously.  We’ve been treating yeast for awhile, and using an antiviral herb for a few months. We just added the herbal antibacterial this week, and he said to stagger the start of the anti parasitic.  I don’t tell my son when we make a change.  When I started the antiviral, I put it in his fruit smoothie. On the fifth day, he asked if I was giving him a new supplement, because he felt much better.  I’m estimating that these remedies cost about $200 a month.  I will keep you posted with my son’s progress and will personal message you what he is taking, if you like.   

I’m sorry your parents are not supportive, and you feel alone in this.  I have close friends that have distanced themselves from me because they don’t understand why we are not using conventional medicine to treat our son.  It doesn’t matter that we treated with conventional medicine for 2 1/2 years, and he became violent, suicidal, angry, negative, hateful, jealous and revengeful.  They attribute his recovery from OCD and tics after IVIG, abx, and herbs to be coincidental.  

I am glad you have your gran for support.  

[bobh]

Yes, thank God for Grandma.

I am several hours and across the Canadian border from Chicago - wish I was closer so as to help you.

Please do keep us posted, and keep your spirits up as you can.

Bob

[Hitman3161]

Thank you bob and Mary will do

[Hitman3161]

Hi guys quick update. 

Looks like Ill have to postpone any idea of IVIG for the moment - my parents want me to have a Cunningham panel and immune function tests  done as a confirmatory measure  to justify any need to try IVIG.

I feel very ill at the moment and I’m hampered with fatigue and weakness.

I’ve just completed a 5 day steroid burst of prednisone 30mg without taper. Is it possible I’m showing signs of withdrawal? At that dose is a taper necessary?

 

Im a little worried now! I’m happy to go through with the Cunningham test though as that will be decisive despite improvement on abx and the outcome of the tonsillectomy last year.

 

Is it withdrawal or is my body fighting an infection that wasn’t cleared properly and now I’m having some kind of rebound effect?

I feel so faint. 

 

 

 

 

Edited August 6, 2018 by Hitman3161

[MaryAngela]

I don’t have any experience with steroids, but are you asking whether the Cunningham Panel could be positive after abx treatment and tonsillectomy?

My son had a positive Cunningham Panel after both.  

I am so sorry you continue to suffer.