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Hi lauren's mom. Is she doing high dose every month?did she have Lyme as well?

My ds11 has minor immune deficiencies. I am just now seeing that many kids are getting more than one ivig. We had to travel half way cross country to get one, and we don't have local doc to monitor him, so wondering if I should

A. Already be planning our second one

B. Wait and see if he has improvement or exacerbation

C. Be testing him for antineuronal or Camk

 

Every couple months along with other mmune deficiencies.

Just wondering what kind of care kids that have pandas expert are getting so I can harass my soca for similar!

Thanks!

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Norcalmom,

 

Did the PANDAS doc who did the first ivig discuss possible subsequent treatments? In our case Dr. B is treating the autoimmune issues and this treatment protocol works for us. Every child and every doctor is going to probably approach diagnosing and treating PANDAS (Lyme or both, etc). a little different. I believe the key is finding a good doctor (immunologist) to thoroughly "investigate" the root cause of the problem (looking at the whole family for clues as well).

Someone that will continue to care for your family beyond ivig for years to come because in our case, even though Lauren is doing amazingly well we don't know what tomorrow (or next week or next year) will bring.

 

We continue to do 1.5g/k (3x now). Starting in October Lauren will have this dose every 4 weeks.

 

We did retest Lauren's camk scores just before ivig #2 and saw drastic improvement in her scores!!

 

I hope this is helpful for you. Good luck and keep us posted on your progress.

Edited by laurenjohnsonsmom
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laurenjohnsonsmom, what are your symptoms of lyme? What made you look into it? I see SFmom said that ivig is not the solution for lyme but rather a means to give some relief with co-infections. Did you try the antibiotic regimine for the lyme first or are you going straight to the ivig? If you don't mind my asking, were you able to get your insurance to cover ivig for lyme? Have you been seeing a lyme specialist as well?

Edited by ajcire
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Laurenjohnsonsmom, Will u be doing the monthly 1.5 over a two day infusion or will u do this in one day? Why so high monthly? I am hoping docs will start to look at trough levels for these kids so others can better understand dosing? Have u done toughs on Lauren post ivig. I heard that in order to maintain an autoimmune dosage IGG tough should never at any given time drop below 1700. Otherwise then this is not a strong enough dose to redirect the autoantibodies. Could u run this by Dr. B and see what his opinion is on trough levels for autoimmune disease. (Not trough levels for immune deficiency level, much different) I think this could be a better way to determine dosage and frequency and it would be child specific since kids tend to eat up immunoglobins at different rates. Thanks!

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Ajcire,

 

I have had weakness in the legs along with numbness, pin & needles etc. that manifested during the last trimester of my pregnancy with Lauren over 13 years ago. It was passed off as "baby pushing on a nerve" throughout my subsequent pregnancy with Audrey who was conceived 13 months after Lauren was born (I might mention the issues were still present during the year between my pregnancies). Long story short, I continued to have these issues and at times throughout the years I wound have episodic manifestations where these issues would worsen (once I had my entire right side of my body go numb-dr thought I had a stroke, etc.). One other time I woke up to having no feeling in my feet/could not walk). Our family (being military moved 11 times over these 13 years so between the moves and raising three children mostly by myself as my husband was off serving our country, I put this on the back-burner for years).

 

There were three occasions in the last 13 years that I took the time/had an episode that could not be ignored and I had an MS work-up but never saw anything significant on the MRI so I kinda convinced my myself that this was all in my head (even though I had multiple emg's that came back showing significant nerve damage to both legs with no reasonable explanation).

 

Fast forward to March 2010..my purse is stolen with my eyeglasses in it. Because I was overdue for my eye exam and I needed to replace my eyeglasses I decide to go to an opthamologist instead of my normal optometrist as I felt my vision decreasing over the last few years but when the optometrist did my normal eye exam I was always told that my mild prescription had not changed. Well..the optometrist discovered eye polar which landed me an appt with the neuro opthamologist who diagnosed me with optical neuritis in my left eye (this is why I had blurred vision for so long). He immediately suggested it was MS (current issues plus past history) BUT Dr. B was not convinced. As the neuro opthamologist pressed forward with the MS work up Dr. B ran list of labs and the igenex testing. Well my igenex Lyme testing lit up like a Christmas tree-multiple positive IgM bands (and IgG as well). Because of the severity of my symptoms and the results of my igenex testing Dr. B and I are working with a LLMD near Dr, B's office an I will be seeing specialists (including a neurologist) at Columbia as well, in a week.

 

This has kept me traveling back and forth to CT and NYC but is far worth it to figure out what's going on and hopefully eradicate this from my body for good, I have been told by the LLMD that I am deep into the rabbit hole with this and that he is convinced this has progressed into MS cause by undiagnosed/untreated Lyme (he said Lyme is one of the infectious agents that can cause MS). He gave me some impressive research and other info if anybody on this forum wants to see it-PM me and I will email it to you! I had to sign a waiver agreeing that the treatment regimen we're doing can increase my symptoms and that I might go blind or paralyzed (temporarily or permanently) during this treatment and that I understand that there is demolition of my central nervous system. As I type this I am on day 4 of 100mg of doryx 3x day. I will double this in 10 days and I already started herxing yesterday. I was in  the grocery store and I started getting this "tingling" sensation in my arms, hands and fingers. The feeling you get when your foot falls asleep but much worse. Like a numbing, tingling almost burning sensation. Also in my legs (especially back of my calves). Even my tongue and bottom lip was "numb/tingly". I'm assuming this was herxing. It did subside about 60% but it's still an issue. Now today my blurred vision has greatly increased making it virally impossible to type this response. The LLMD told me he thought I could definitely benefit from the anti-inflammatory effect of IVIG and we are moving towards that soon. Still working out the fine details regarding dosage/frequency. We have excellent insurance that covers IVIG (we are blessed) but we have spent a fortune already on the "we don't bill insurance" doctors visits and travel expenses.

I hope I answered all your questions.

 

Lynn 

 

 

laurenjohnsonsmom, what are your symptoms of lyme?   What made you look into it?    I see SFmom said that ivig is not the solution for lyme but rather a means to give some relief with co-infections.  Did you try the antibiotic regimine for the lyme first or are you going straight to the ivig?  If you don't mind my asking, were you able to get your insurance to cover ivig for lyme?  Have you been seeing a lyme specialist as well?

 

 

Sent from my iPhone

Edited by laurenjohnsonsmom
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Thanks for taking the time to answer my questions. Had you done the western blot in the past without it showing anything? Do you suspect you have had it even longer and that it is related to your son's issues (I remember you posting about that in the past). I don't remember, have you had the igenex done on Lauren or is it something that has to wait a certain amount of time from the ivig?

 

I hope the herxing is just a quick temporary phase for you and that you find the healing you are searching for.

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Lauren's total IgG levels fall within the "high abnormal range", Lauren had low titers on the pneumonococcal vaccine (the vaccine didn't take on 11 of 14 serotypes) and she suffers from chronic illness/infection (she was sick/absent from school 26 days over several months prior to her sneezing manifestation last October). Most insurance companies require one to three of these to approve ivig/prove immunodeficiency.

 

We have the perfect "trifecta"! (maybe we should be betting on the ponies to help cover our uncovered pandas/Lyme expenses)!!!

 

How do you know if there is an immune deficiency? What are the tests? I think we probably had them done, we are still in Calif. for ERP so I will need to check when I get home.

Edited by laurenjohnsonsmom
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Lynn, Good luck with your treatment. My sister-in-law had undiagnosed lyme for many years. The 3 months of treatment were tough, but she is doing great now. I have and have had the symptoms you described for many, many years too. I have had to put them off too, but after reading your post, I'm going to get on it. Keep us posted if you can. Best wishes for health very soon.

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I had the western blot test done three times over the last 6 months with all negative results. The last time I had it done was the same day I had the igenex test done. I personally feel the western blot testing is just a false sense of security and that Lyme likes to hide! You also are supposed to be off all abx when you take any Lyme test (as so I'm told when I called and inquired with igenex). Lauren's igenex tests came back on the grey area and she was on abx (we didn't know any better at the time) so we're still going down that path. Audrey's were just sent in last week and I am being tested for confections as we speak. I suspect Lyme could be a player in my sons case as I have pulled more ticks off him then I care to count BUT (what we do know) is that all three of my children had strep less than 10 days before we took my son in for his first emergency psyc eval back in Sept/Oct 2006. Hmmm. Strep and Lyme?? We'll never know for sure.

 

Thanks for taking the time to answer my questions. Had you done the western blot in the past without it showing anything? Do you suspect you have had it even longer and that it is related to your son's issues (I remember you posting about that in the past). I don't remember, have you had the igenex done on Lauren or is it something that has to wait a certain amount of time from the ivig?

 

I hope the herxing is just a quick temporary phase for you and that you find the healing you are searching for.

Edited by laurenjohnsonsmom
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I suspect Lyme could be a player in my sons case as I have pulled more ticks off him then I care to count BUT he all three of my children had strep less than 10 days before we took my son in for his first emergency psyc eval back in Sept/Oct 2006. Hmmm. Strep and Lyme?? We'll never know for sure.

 

Hmmm.... Perhaps one day, 5 or 10 years from now, we will know that PANDAS (Or PANC or SOT) is caused by two or more simultaneous infections, one of which is frequently strep and one of which is frequently lyme or myooplasma.

 

Lynn (lauren's mom) - I give you so much credit. When I first joined the forum Lauren had just completed IVIG and I thought "wow - isn't she lucky - her kid had PANDAS and had a couple of months of little sneezes and now she is fixed, while we have been suffering through this for 13 years and I am wiped!". I guess it is like Paul Harvey used to say... now I know the REST of the story.

 

All the best to you and to all the parents on the forum who have been ignoring their own health to treat their children (I am also guilty of this). My hope is that one day PANDAS (PANC, SOT) will be so recognizable and treatable that parents will not have to foresake their own health or sanity to help their children to function.

Edited by kimballot
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My error...Lauren will be having ivig every 8 weeks (I accidently typed 4 weeks on the earlier post). Between Lauren's PANDAS and my lyme, I am starting to confuse myself-sorry!

 

Norcalmom,

 

Did the PANDAS doc who did the first ivig discuss possible subsequent treatments? In our case Dr. B is treating the autoimmune issues and this treatment protocol works for us. Every child and every doctor is going to probably approach diagnosing and treating PANDAS (Lyme or both, etc). a little different. I believe the key is finding a good doctor (immunologist) to thoroughly "investigate" the root cause of the problem (looking at the whole family for clues as well).

Someone that will continue to care for your family beyond ivig for years to come because in our case, even though Lauren is doing amazingly well we don't know what tomorrow (or next week or next year) will bring.

 

We continue to do 1.5g/k (3x now). Starting in October Lauren will have this dose every 4 weeks.

 

We did retest Lauren's camk scores just before ivig #2 and saw drastic improvement in her scores!!

 

I hope this is helpful for you. Good luck and keep us posted on your progress.

Edited by laurenjohnsonsmom
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Lynn.... I am very disheartened about your recent diagnoses but happy you are getting treatment that will someday potentially return you to full health. It sounds like you are in great hands with both Dr. B and your LLMD!!!!

 

One thing I forgot to ask our LLMD is when IVIG is used for LYME and at what dose. Have you asked your Dr. what kind of Herxing can be expected for you from IVIG and would it be hdIVIG or ldIVIG? I think it would be helpful to others now diagnosed with LD to get a better perspective. I will definitely ask at our next appointment too.

 

Thanks for sharing your story.

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