Possible adult PANS story & advice wanted

[rachiedoubt]

Hi there. First time posting here though I've been reading for quite awhile. I have been dealing with what might be adult PANS for a long time now. I figured I would post to join a conversation about these issues I deal with, as well as maybe find some people in similar situations, or people with an understanding of my situation, my labs, and what medicines I'm taking.

 

In short, I've been sick all my life. I'm 24 now. As a kid I got sick all the time. In the 8th/9th grade I had strep (possibly more than once), as well as mono, and in 8th grade I started to develop pretty serious anxiety, OCD-like symptoms, and began restricting my food intake in 9th grade. The anxiety, as well as severe depression and other mood problems, and panic attacks as well, persisted throughout my high school years. I also dealt with what seemed to be an eating disorder throughout high school. I sought treatment, a counselor, was on multiple psychiatric medications... and really, not much actually worked in terms of the depression, though some of the time I was so medicated that I was in kind of a numb, more dissociated state. From ages 18-22 things got much worse in terms of me being always sick. I almost constantly had a cold, did not have health insurance, was somewhat overwhat, had tons of stomach issues, started having way, way more anxiety as well as severe panic attacks worse than ever before. In early 2014 I tested positive for strep 4 times in a row, even though after each time I was put on an antibiotic trial. It always came back, and sometimes there were even different strains of strep that came back in the results. I also experienced extreme weight loss at this time, food restricting, anxiety, panic attacks, depression, and other symptoms. I could not really function in my life, at 22 years old, and I felt hopeless. I didn't understand why nothing helped. Why I couldn't get better and only seemed to get worse over time. At this point I was (and still am) off of all psychiatric medications (except for Hydroxyzine which is less intense and hardly psychiatric).

 

Summer 2014 I was on antibiotics for two months. The only reason my doctor at the time agreed to that (she was an ND) was because my sister has pretty severe PANDAS and my family is very informed on the disease and has seen many good doctors. My step-mom was the first to say, maybe you are dealing with what your sister is dealing with, but in a slightly different way. I was also doing herbal antibiotics at this time. Less than two weeks after stopping the antibiotics I had the worst panic attack of my life, it was so severe I didn't even realize that's what it was and I went to the hospital sure I was dying. We did more labs, and finally did some tests for PANDAS. My strep and mycoplasma titers were incredibly high. I forget the exact numbers, but they were very high. We worked on the herbal antibiotics and other things to try and help, but come December I had another serious panic episode and could hardly leave my house. December 2014 I started on Augmentin and stayed on it until August of 2015. During this time I had so much improvement and for most of last summer was living the most healthily and happily I ever had and had the least anxiety of my life, though it was still present. ND took me off Augmentin, less than 2 weeks later anxiety increased as well as panic attacks, paranoia, lack of appetite and eating, and by October I ended up in the ER again. Went back on Augmentin promptly until about one month ago.

 

I am now seeing a different doctor who is much more informed. She did tons of blood tests and found that my strep titers have gone way, way done as well as mycoplasma and EBV, but they are still marked as high. I had to have surgery for an ovarian cyst and endometriosis and I had to go off the anti-biotics, and my doctor also wanted to to a test trial. Since March I have been sick a total of 4 times, which is more than I have been sick since summer 2014 when I started doing antibiotics and herbal antibiotics--I hardly had two colds while on antibiotics previously. However all of these sicknesses in the past few months seemed to be viral, and all of them triggered my typical anxiety, OCD, and panic symptoms. My doctor did tests for a bunch of viral stuff and found:

 

- tons of high IGG for Coxsackie (A9, A7, A16, A24)--all at 1:1600. Coxsackie B 1-6 were all at 1:32 or 1:64. I don't ever recall having Coxsackie.

 

- EBV early antigen IGG high at 15.3. EBV Ab VCA IGG at 423, and EBV Nuclear antigen Ab IGG at 172, so all very high. Even though I said I seemed to have viral stuff going on recently I didn't seem to have mono, so it seems weird it would show up as active, but it also showed up as chronic (according to her).

 

- Parvovirus was quite high as well at 5.9, and I did have this when I was about 10. She said since it was so long ago the IGG should not still be so extremely high.

 

- High CMV & HHV6 IGG.

 

These are just the ones she tested, but every single one she decided to test for came back positive and very high. The next step which I just started today is anti-virals. Acyclovir. I'm hopeful and very nervous. I'm also going to start Low Dose Naltrexone within the next month. Part of me is very nervous about being off of Augmentin for so long because my titers still aren't down to a normal level. My gut is telling me that I will need to be on them for longer again, but I don't want to be domineering with the doctor and I don't want to mess my gut up further if I don't have to. Probiotics help, but still. Off of the Augmentin my stomach seems so much more happy. Anxiety is definitely increased and I'm having a really rough time and I feel so alone, I have no one I can really relate to on this. I know 3 kids in the area with PANDAS, one being my sister, but they're all much younger and have a different picture and different symptoms.I just wanted to post my results, my story, and my current treatment plan to see if anyone can relate, or share ANY advice whatsoever. It would be so greatly appreciated.

 

I've been sick and struggling for so long. In the past year I have gained a shred of stability and have finally been able to go back to school, this past January. I was out of school for... almost 4 years. The last two quarters I was in it 3 years ago I completely failed because my brain just seemed to not work the same. I couldn't keep up, understand, focus on the reading, I couldn't write the same. I ended up giving up after my inability caused me even more anxiety. I've felt better recently than ever before in my whole life, literally, but I'm so scared that it will get worse again if I don't continue the Augmentin, or that the anti-virals and LDN won't work and I'll always have this mysterious immune system and health issues. I'm scared I don't fit into any diagnosis and won't ever get the proper help. I just want to continue living my life as I feel I've just begun to. I may have forgotten some stuff. I am also diagnosed with C-PTSD and like I previously stated Endometriosis. Just had surgery and removed very much of it as well as cysts.

 

I hope this was okay to post. I haven't found a forum like this anywhere and have been searching for somewhere to find anyone to relate to or anyone with advice. Thank you again for reading and for any advice ahead of time. It means a lot.

 

- Rachel

[ibcdbwc]

Rachel,

 

There are a number of people on this forum that are considered adult PANS and I am hopeful that you can connect with some of them. I am also going to PM you so please check your box.

 

You have what sounds to be a very difficult yet classic PANDAS presentation. I am glad you are working with a knowledgable practitioner. Please excuse my questions below as I do not myself have the focus needed to read closely tonight.

 

I do wonder, (perhaps you stated this already), if you've been tested additionally for lyme/coinfections. Many people here find that strep and viruses are indeed a problem, but that the reason they have all of this issues is because of a compromised immune system to begin with. So lyme and other more potent initial triggers can leave you wide open for chronic infections of all sorts. It might explain why you have not been able to rid yourself of strep. It might also explain why your sister has problems. There are people who believe congenital lyme is very problematic and widespread. Anyway, its a possibility. You can chase these infections down one by one, but ultimately without a healthy immune system you will always be behind the eight ball so to speak. Which leads me to my next question.

 

Have you done any genetic testing or immune function testing to further investigate why you are so sick and susceptible. I'm sure you read about immune therapy, but once Lyme is ruled out, the next route would be to work on strategies to strengthen the immune system. This is accomplished, as you mentioned briefly with probiotics, but targeting the gut more specifically, nutritional balancing, and possibly even IVIG/PEX if immune testing demonstrates its needed. Some people here have had great success with tracking down micro and macronutrients that were causing more inflammation problems. By removing these items, they experienced a great boost to their immune system. Some people have needed IVIG to jump start a faulty immune system. Also have you had your tonsils removed? Its a safe bet that they are harboring strep and should probably be out if not already.

 

I am so sorry that you have been dealt this lousy hand of cards. The silver linings may not be evident now but there are always some to hang on to. I am betting you are wise beyond your years, incredibly empathetic and compassionate and very intuitive. These are gifts which I bet you will use to help others. Hang on to hope. You will get there.

[rachiedoubt]

Hi there, thank you so much for your response.

 

I have not been tested for lyme/coinfections other than what I listed (mycoplasma, coxsackie, etc). My sister was tested for Lyme and I don't believe she came back positive for it. We had a pretty bad mold problem in our house, just adding this in, and we were able to kind of remodel and get rid of the mold so hopefully that will help her. Where I currently live I think there is mold that is affecting me, and I'm moving in less than 2 weeks so that's good too. I may look into asking my doctor about testing for Lyme.

 

I haven't done any genetic testing because I simply can't afford it. My family did them for my brother and sister, but with all of my sister's issues I only really ask my dad and step-mom for help so often these days and I feel bad asking for more than I know they can afford. My sister is really very sick and has had a horrible year with hospitalizations and intensive testing and IVIG, all the while we were in the middle of remodeling and getting rid of the mold. I don't really have financial support from anyone else in my family either, I tried reaching out to grandparents on my mom's side by they just didn't seem to really get it. The financial support comes from myself and my amazing partner and sometimes his mom. They have been so wonderfully helpful. I had a test done recently that had to do with pneumococcal stereotypes and some were very low and non-existent but others were fine, so my doctor said that at least I was making some antibodies. I have been looking into getting my tonsils out for some time and I think it would be very beneficial. I also need to get my wisdom teeth out, but I just had surgery on my ovaries/uterus so in terms of doing another one I would like to space them out because it was VERY scary and stressful for me and in terms of recovering I'm only just now getting moderately back on my feet.

 

I ended up trying Acyclovir and it made me very, very sick two days in. I ended up in the ER because I was sicker than I think I have ever been in my life. It's been a week since that incident and I feel a lot better. My doctor wants to try me on another antiviral and if I react just as badly then we will have to do an herbal antiviral route. I also just started CBD oil (hemp based) yesterday and it seems to already be helping a lot in terms of my anxiety and intrusive/racing thoughts. I also had enough energy to do a bunch of chores and finish my homework early which was amazing. I haven't had energy or motivation like that in quite awhile.

 

Thank you again so much for your comment. When I first got your response I was not feeling well and it made me cry to hear such kind words and to speak to someone with such understanding.

[ibcdbwc]

Am sorry for all your struggles and for your family's struggles too. And yes this process can get very expensive and frustrating. Most of the time, people start the PANDAS/PANS journey believing and hoping that antibiotics are the quick answer to all the troubles. And indeed they can be lifesaving for so many people. The problem of course is that while antibiotics treat the infection, it doesnt treat the immune system long term. One must keep digging to find out why the immune system is so stressed.

 

I do think if you can come up with the funds, then testing for lyme, bartonella, babsia et cetera would be worthwhile. So many people on this forum have been treating strep for years-- then they finally find out that lyme was the initial trigger. If lyme is negative, I think you have another possibility worth looking into and that is the mold issue. Certain people are genetically more susceptible to mold than others. And it can wreak havoc on the immune system. You might find Dr. Shoemakers book very helpful in this regard. He has tests to look for mold and treatments to follow. This genetic susceptibility - interestingly can be linked with Celiac as well.

 

Diet can affect your gut which is the holy grail for the immune system. So that is your third level to look at. Gluten free is wildly popular right now-- simply because it has been shown to cause inflammation in the gut. And if your gut is a mess, than so is your immune system... leading to a cascade of PANS. Am sure your practitioner can help you look into these areas as well.

 

Please do keep us posted. In the meantime, am so glad that you may have found some relief in the CBD oil. Take care!

[Wombat140]

Hi Rachel, I just wanted to say welcome to the forum and that your story has given me hope which was sorely needed at the time. I'm 25 and have been having trouble since I was 13, and though I know you're far from having got there yourself, you say some things you've tried have made a big difference to your symptoms which is really important for me to know - I didn't believe anything could after so long a time, I'd been despairing that perhaps it would be all permanent by now.

 

I don't know why exactly I thought that - I've hardly tried any serious treatments yet! I suppose I get that impression from having been pursuing treatment for so long and not got anything out of it - but most of that time has been spent trying to get treatment or a PANS-literate doctor and failing! I think - don't want to tempt fate, but I THINK - that I'm definitely on the trail of somebody now, so wish me luck.