Loosing all hope

[peglem]

Progesterone raises when someone is pregnant and they are currently researching to see how progesterone may help people with brain injuries. So, there may be a connection to the progesterone increase in pregnancy and the relief of PANDAS symptoms at the time. I brought this up awhile ago...

http://www.latitudes.org/forums/index.php?...hl=progesterone

 

alderliefest, can you go through a list of supplements that you are currently taking and what antibiotics you have recently tried or are currently taking? Do you take birth control? Also, if you have blemishes or adult acne you could try going to a dermatologist and often they will give long term antibiotics for acne. Those antibiotics may help your PANDAS. Just brainstorming here.

 

I have read several posts that often girls outgrow pandas when they start their period - maybe this is related to the progesterone also????

Mine started her period last October. No signs of out-growing it yet!

[alderliefest]

Warning-Gentlemen may want to skip this post.

 

I hope this isn't too personal. Someone posted information about a grown daughter with PANDAS feeling relief from symptoms post pregnancy. Did you notice any changes with your symptoms that revolved around your pregnancy?

 

The reason i ask is this... I don't think i have pandas, but I definitely have the ocd tendencies and had moodiness as a younger woman until my first pregnancy (my pandas dd10). Upon her birth, I had low prolactin, so I couldn't nurse and no menstration for 9 months after until I started taking BCPs to bring it on. I needed fertility help to ovulate to conceive my dd6 and did not start menstrating on my own until she was 4 y.o. So, for those 7 years, the moodiness was completely gone. Then, the moodiness returned similar to PMS. But before I had my first child, I was a handful mood-wise. Based on my experience, I thought the comment about the adult pandas daughter finding symptom relief with prenancy was interesting.

 

Does any of this mean anything to your experience? Do you have any history of PCOS? I guess my point is that perhaps you need to look backwards in time at periods of stability for you and see if the pandas docs can derive any meaningful connections. Hormone levels must play some role in this equation.

 

During my pregnancy I lowered my OCD meds significantly and was okay, and got through the pregnancy. The second I had my daughter all my symptoms returned in full force. I had to take full doses of my meds, and felt better but was not allowed to nurse. I got my period 6 weeks after having my DD2 and I have been surviving with my panic since

[alderliefest]

Great advice above - I'm so sorry you are suffering with this - OCD and Panic can be quite debilitating diseases. I would echo Sheila's comments and wonder if you are sure it is PANDAS? If so, I know you'll find someone to help and to try IVIG or abx. However, even if not PANDAS, the therapy for OCD can be quite effective. And it can start to work fairly soon. It's called ERP - exposure & ritual prevention. Have you already tried this? Do you need a recommendation in your area? If so, PM me your general area and I'll see if someone great works there. The difference between a decent & a great ERP therapist is pretty amazing.

 

Keep hoping, there are lots of answers out there for you, even if it does not feel that way today. Do you have anyone that can help you with some of the legwork and support your efforts?

 

 

I was diagnosed with PANDAS in 2000 by my psychiatrist, and was on 500mgs of amoxicillin a day for about a year, then took a round of zithro, and was so much better, then in 2002 i stopped the abx and bu 2005 I relapsed and had ASO levels up to 1400. Now the are at about 580 which is the lowest they have been in years.

[EAMom]

Peglem,

have thought you thought about putting your dd on Yaz (or some other similar birth control)? In case it helps symptoms...?

[alderliefest]

Progesterone raises when someone is pregnant and they are currently researching to see how progesterone may help people with brain injuries. So, there may be a connection to the progesterone increase in pregnancy and the relief of PANDAS symptoms at the time. I brought this up awhile ago...

http://www.latitudes.org/forums/index.php?...hl=progesterone

 

alderliefest, can you go through a list of supplements that you are currently taking and what antibiotics you have recently tried or are currently taking? Do you take birth control? Also, if you have blemishes or adult acne you could try going to a dermatologist and often they will give long term antibiotics for acne. Those antibiotics may help your PANDAS. Just brainstorming here.

 

In 2000-2002 i was on 250mgs of Amoxicillin twice a day

2000-Current I am on Luvox 50mgs twice a day and Clonopin .5mgs twice a day

2009-2010 I was on Clydamicin 150mgs twice a day for 30 days

end of march i took a round of zithro and am now taking 250mgs every 4 days. Also for the past month I have been taking omega3 once a day and cranberry pills.

[EAMom]

Progesterone raises when someone is pregnant and they are currently researching to see how progesterone may help people with brain injuries. So, there may be a connection to the progesterone increase in pregnancy and the relief of PANDAS symptoms at the time. I brought this up awhile ago...

http://www.latitudes.org/forums/index.php?...hl=progesterone

 

alderliefest, can you go through a list of supplements that you are currently taking and what antibiotics you have recently tried or are currently taking? Do you take birth control? Also, if you have blemishes or adult acne you could try going to a dermatologist and often they will give long term antibiotics for acne. Those antibiotics may help your PANDAS. Just brainstorming here.

 

In 2000-2002 i was on 250mgs of Amoxicillin twice a day

2000-Current I am on Luvox 50mgs twice a day and Clonopin .5mgs twice a day

2009-2010 I was on Clydamicin 150mgs twice a day for 30 days

end of march i took a round of zithro and am now taking 250mgs every 4 days. Also for the past month I have been taking omega3 once a day and cranberry pills.

 

250mg of Azith. every 4 days is WAY too low a dose. Try 500mg/day.

Edited April 22, 2010 by EAMom

[momto2pandas]

Hi there,

 

Don't give up hope!

 

I am an adult with PANDAS, and I believe (and have experienced) that it can be managed. You might want to take a look at my old post from early Feb of 2010 with the "things I had learned" and try some of those. I particularly recommend the right birth control pill (I took Yasmin, I think it's called), and the right high-EPA fish oil at high doses (I use omegabrites). Make sure that your thyroid is ok and that you are taking enough iron. I think that you are in your early 20's? My early 20's were tough, but not long after that I managed to get symptom free for several years at a time. And the "episodes" in between were really NOTHING compared to what my youth entailed, couple of days of depression/anxiety here and there, nothing that prevented me from getting a PhD, working, dating, marrying, parenting, traveling, etc....

 

All that having been said, I found out recently that I do have long-standing immune issues, so I would recommend going to see a good immunologist and getting a full evaluation. I wish I had done that 20, 30, 40 years ago! I saw Dr. B earlier this week and he is treating me now, though he did say specifically that his treatment is "not really for PANDAS" for me - he's treating me more as an immunology patient with PANDAS syptoms as relatively minor parts of the complex (currently minor, that is - over my lifetime they have been the most devastating). I am guessing that he would take on adult PANDAS though. Remember that Dr. K is a pediatrician. Dr. B is accustomed to treating adults in his practice.

 

PM me if there is anything I can do for you!

[Megs_Mom]

Great advice above - I'm so sorry you are suffering with this - OCD and Panic can be quite debilitating diseases. I would echo Sheila's comments and wonder if you are sure it is PANDAS? If so, I know you'll find someone to help and to try IVIG or abx. However, even if not PANDAS, the therapy for OCD can be quite effective. And it can start to work fairly soon. It's called ERP - exposure & ritual prevention. Have you already tried this? Do you need a recommendation in your area? If so, PM me your general area and I'll see if someone great works there. The difference between a decent & a great ERP therapist is pretty amazing.

 

Keep hoping, there are lots of answers out there for you, even if it does not feel that way today. Do you have anyone that can help you with some of the legwork and support your efforts?

 

 

I was diagnosed with PANDAS in 2000 by my psychiatrist, and was on 500mgs of amoxicillin a day for about a year, then took a round of zithro, and was so much better, then in 2002 i stopped the abx and bu 2005 I relapsed and had ASO levels up to 1400. Now the are at about 580 which is the lowest they have been in years.

 

Then it sounds like you are clear, and that you need a good PANDAS doc. I agree with EAMom that this zith dose seems VERY low. I am not a huge believer in ASO levels always telling the story - it's more about the level of panic & OCD that you experience. I'd also encourage you to go to someone like Dr. B - or see if you can find a local doctor that will consult on IVIG. Have you tested for immune system disfunction through an immunologist, in the hope that this might help you get IVIG covered? Hope you find great answers soon -

[peglem]

Peglem,

have thought you thought about putting your dd on Yaz (or some other similar birth control)? In case it helps symptoms...?

No. Myself and my oldest daughter have not had good experiences w/ oral birth control side effects. Allie cannot tell me if its having a bad effect. And, her pediatrician is willing to help with prednisone and abx and anything else he can figure to do.

[bubbasmom]

I'm just curious about adult PANDAS since the P in PANDAS stands for pediatric. Have you had this since childhood?

 

 

I have been diagnosed with PANDAS. I have the classic signs of it, along with extremely high ASO titers.

[MichaelTampa]

Alder,

 

I was diagnosed as adult pandas last year, and got some relief with antibiotics. The relief was very significant, and yet probably removed only 10% of my problem. My experience, and yours too, sounds like one where infection related stuff is causing neurological/psychiatric issues. Many with lyme disease have PANDAS. Lyme disease can weaken one so much that you get all sorts of other things--strep, pneumonia, various viruses, fungus, and so on. I did pursue lyme and now am about to start treatment on that. It looks very much like the pandas was just the tip of the iceberg. I do suggest you consider looking into a possible lyme diagnosis. There are various threads on here you can search to read all about that, for lots of details. But, the short info is, you can't just go on the fact that some doctor does some test and says you don't have lyme disease. There is much lack of knowledge, so, anyone that wants to seriously consider it has to find someone truly knowledgable, such as an ILADS trained doctor. There are various blood tests, many are not that good, none are reliable, and while tests can help with the diagnosis, it is really a clinical diagnosis more than anything test related.

 

Michael

[alderliefest]

Progesterone raises when someone is pregnant and they are currently researching to see how progesterone may help people with brain injuries. So, there may be a connection to the progesterone increase in pregnancy and the relief of PANDAS symptoms at the time. I brought this up awhile ago...

http://www.latitudes.org/forums/index.php?...hl=progesterone

 

alderliefest, can you go through a list of supplements that you are currently taking and what antibiotics you have recently tried or are currently taking? Do you take birth control? Also, if you have blemishes or adult acne you could try going to a dermatologist and often they will give long term antibiotics for acne. Those antibiotics may help your PANDAS. Just brainstorming here.

 

In 2000-2002 i was on 250mgs of Amoxicillin twice a day

2000-Current I am on Luvox 50mgs twice a day and Clonopin .5mgs twice a day

2009-2010 I was on Clydamicin 150mgs twice a day for 30 days

end of march i took a round of zithro and am now taking 250mgs every 4 days. Also for the past month I have been taking omega3 once a day and cranberry pills.

 

250mg of Azith. every 4 days is WAY too low a dose. Try 500mg/day.

 

 

Thats what Dr. T prescribed.

[alderliefest]

I'm just curious about adult PANDAS since the P in PANDAS stands for pediatric. Have you had this since childhood?

 

 

I have been diagnosed with PANDAS. I have the classic signs of it, along with extremely high ASO titers.

 

 

Yes. My first onset of symptoms was when I was 12, but I always had panic issues.

[EAMom]

I would be a "squeaky wheel" (you know, the squeaky wheel gets the grease!) and tell him you don't think 250mg every 4 days is helping and you'd like a trial of 500mg/day for 1-2 mo. to see if it makes a difference.

Edited April 22, 2010 by EAMom

[alderliefest]

I would be a "squeaky wheel" (you know, the squeaky wheel gets the grease!) and tell him you don't think 250mg every 4 days is helping and you'd like a trial of 500mg/day for 1-2 mo. to see if it makes a difference.

 

 

Dr T doesn't want to upset my stomach by giving me too many or risking colitus