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darling787

Could I have adult PANDAs?

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Hi All! New here. For the past few weeks I have been reading through some of the previous threads started on adult PANDAS. I am looking for some support and guidance.

 

I fell ill last June shortly after dental work. My main symptoms were throat infections, deep muscle aches, unrelenting fatigue, and an overall feeling like I was toxic and may slowly die. I was put on over 8 different antibiotics and while they seemed to help for a few days my throat infection and all my other symptoms would return.

It wasn’t until I finally met a doctor who told me I should get my root canal teeth extracted by a biological dentist. I first received root canals back in May right before I got sick.

 

I got all 3 extracted in early October and my health seemed to improve by about 50%. Although during my extractions I was given clindamycin, started oil of oregano and colloidal silver so it is hard to know if the extractions contributed to my healing or if it was just coincidence.

 

I hit a plateau a few months ago and I just don’t feel like I’m getting any better so I found a new physician who specialized in lyme and long-term Antibiotic therapy. She started me on minocycline which seemed to help somewhat but asked me to switch the azithromycin 250 mg twice per day and pencillin daily(based on my ASO titer shooting back up). I took a few weeks off before making the switch and now I am VERY sick. My throat infections are back, muscle aches are awful but worst of all my depression and anxiety (derealization, people sounds funny etc) are debilitating. (Please note I have been treated for anxiety/ depression since a teenager. On and off ssris. Currently taking 50mg zoloft for past 6 years).

 

My ASO titer is back up to 400 ( since june 2015 its done from 400>370>340>390>400), Igenix lyme test which isn’t positive, my IGM results were : 18+ and 41+ and the IGG 41++ all other bands for both were negative or indeterminate. Lastly my mycoplasma pneumonia igg is 725. I have never had a positive throat culture for strep since getting sick but have had recurrent white exudate.

 

 

My questions for the group are as follows:

1) Could this be adult PANDAs and if so is a T& A the best treatment option?

2) Is my antibiotic regimen on the right track? Should I consider IV treatment? Up until a month ago I was running long distance again and feeling better so I didn’t want to get too aggressive right away.

3) Should I find a doctor that treats adult PANDAs? If so, any suggestions?

4) Are there any people out there with similar stories as mine? Any success stories? As you can imagine I am frightened and want my life back!

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With the combo of elevated ASO, anxiety, depression and physical/neuro symptoms, it sounds like it could be both PANDAS and Lyme. A negative Igenex test doesn't rule out Lyme - my son and I have never been pos on Igenex, but we both cultured positive. Did your doctor check for co-infections? These can play a huge role in the psychiatric/neuro symptoms.

 

Here's a questionnaire that Dr Horowitz has posted online which might help you get a better sense of whether this involves Lyme and co-infections or what he call MSIDS.

 

http://www.cangetbetter.com/symptom-list

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I believe it is possible that unusual and unexplainable symptoms, such as fatigue, aches, anxiety, etc are a results of infections and/or toxins. Since you just had dental work, something to consider would be mercury toxicity. Additionally, as your strep numbers are up, you also have a potential clear cause that also needs to be treated.
So your treatment approach could include a general and metal detox, as well as antibacterial/antifungals, etc.

These things are so complicated, and if you can get yourself a naturopath or Dr who treats these things, it would make the journey easier.

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Depending on which bands are IND on your WB, you will be diagnosed by many LLMDs as having lyme. An IND result is an indication of weak reactivity, not non-presence of antibodies.

 

Here is a site with a chart listing which kDa bands are lyme-specific. Just because a test gives you an overall negative result according to Igenex or the CDC, doesn't mean that you aren't infected.

 

http://www.anapsid.org/lyme/wb.html

 

Because of the immune suppressive nature of lyme and the common coinfections bartonella and babesia, a strong antibody response would not be expected if you have a high infection load.

 

Bartonella can be a significant cause of psychiatric symptoms. Please consider that you may have this infection, either in conjunction with lyme or alone.

 

I have had my own experience with depression, anxiety/panic and derealisation which resolved with bartonella treatment (in my case with the same herbs and dosages I was using to treat DD14's infection).

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2100128/

 

For more information please google "bartonella psychiatric disorders".

 

Muscle pain, especially in the larger muscle groups (ie the thigh area) and crushing fatigue are both common symptoms of babesia infection. Babesia infects RBC and decreases mitochondrial function, often lysing the cells. Anemia is also a symptom.

Edited by rowingmom

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Thank you all. I guess I'm trying to figure out my next steps. I have been on various antibiotics for almost 10 months and nothing seems to bring my ASO titer down for good. It's back up from 350 to 400. I have also taken a ton of herbals. Do I consider getting my tonsils out? The fatigue, aches, fogginess, etc. are unbearable!

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I can't advise you on the tonsils, but I agree with James_D that you should explore the possibility of heavy metal (mercury) toxicity, considering the dental work. I don't think PANDAS has really been associated with fatigue and body aches, but mercury sure has. Also, definitely look into Babesia and Bartonella, if you haven't already. With all your symptoms, it's unlikely to come down to just one infection or issue - it's more likely a number of infections and other issues like heavy metals. Hopefully, someone else can help with the tonsil decision - we don't have any experience with that.

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I would be cautious in getting your tonsils out. Not that I am against it- but first, healing is longer in adults, and secondly, many pandas patients flare up after tonsil removal. If you were to do the surgery, be sure to have antibiotics before, during and after- and possibly steroids for after.

 

I would say the description of your symptoms sound a little more like lyme than pandas- to me. Have you tested for lyme?

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I've thought about mercury toxicity but since antibiotics seem to help my symptoms I really think my issue is more infectious. But at this point I won't rule anything out. It's just odd that all these issue began after dental work (root canals for the first time)...and my biggest symptom is a sore throat..swollen tonsils..muscle aches..while lyme could definitely be at play I think a high ASO titer and ongoing throat infections could mean chronic strep that my body just can't eradicate. After yanking three of my teeth out at 28 I don't want to take my tonsils out for no reason ! Especially if this is truly lyme taking my tonsils out won't do anything. I've been tested for lyme and my llmd seems to think I have lyme but I'm not get better.

 

The article below is very interesting..links high ASO, adults PANDAS to fibro (muscle aches) and asserts a T&A is the most successful treatment. Wish I could find more adults in the same situation as me!

 

https://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

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There have been a couple of threads recently with several adults with definite or suspected PANS or PANDAS - so you might want to have a look at those. (I'm one of them!)

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I am so lost and confused. I don't feel like any of my treatments are working. I don't know if it's because I am not patient enough or I am going to the wrong doctors . Below is a summary of my treatment:

I finally found a lyme literate doctor who suspects mycoplasma and possible babesia although I live in NYC and spend very little time hiking, etc. She initially put me on minocycline for about a month but it was giving me bad heartburn so we switched to zith. After being on zith for 5 days (250mg twice daily) I had what felt like a psychotic episode and was bedridden for 2 weeks. In hindsight it was probably a herx.

Frightened I sought another opinion from a leading rheumy in the city and he believes I may have a strain of rheumatic fever and wants me to take penicillin 500mg twice daily until my symptoms improve. He thinks a T&A may be helpful but has seen situations where is hasn't helped.

I've had the igenix lyme test and it isn't positive according to CDC. But since I have band 18 positive my doc thinks I *may* have lyme. My ASO titer stays around 400...goes down for awhile then shoots back up.

Prior to getting sick last year I never had strep as a kid. I don't even know what my baseline ASO is. I wouldn't be so stuck on the ASO if it wasn't for my constantly inflamed tonsils and white spots all over them ( doesn't seem like a coincidence). I'm trying to figure out what to do next! My options are

1) Find a new integrative doc/ llmd and stick with whatever they say. Thinking of Dr. Morrison in NYC. Will cost an arm and leg.
2) Try the long term penicillin therapy. And perhaps IM injections. My doc offered to do these once the national shortage of IM pencillin is over ( should be August).
3) Try Zith again considering it seemed to shrink my tonsils the most effectively but I am frightened of a bad herx since I Have to work full time just to afford my healthcare!. My doc insists I take at least one dose daily. I am so sensitive I am frustrated she won't let me pulse it. Could I perhaps decide to do that myself. If so, would 3x's a week suffice and build up from there?
4) Get a tonsillectomy ASAP. Although I am frightened of the possible complications as an adult.

ANY input you have would mean the world to me. I realize I may not have PANDAs but whatever I have is related to strep and there is virtually NO literature/ forums out there for my condition. I've also ready that PANDAs is the immune response to strep and penicillin isn't effective. Do you find that to be true? Sorry for all the questions. I read this forum all day everyday but don't know what to do next since my case is so unique.

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darling787 --

 

I'm so sorry for what you're going through; I can imagine how frustrating it is.

 

Just for the sake of perspective and empathy, I'm pretty sure I had PANDAS as a kid/teenager, but it just wasn't a discernible condition at that time. I NEVER had strep throat in the classic sense; actually, I was rarely sick at all. But my sister had strep CONSTANTLY, and I was, of course, exposed over and over again. And I was a behavioral handful, predominantly due to (I now can look back and see) being highly anxious; I was therefore always melting down, always trying to control every situation so that I would feel less anxious about it, etc. I see now that while my throat wasn't reacting to the strep or the immune response it incited, my brain was.

 

I did not have a classic case of strep throat until I was well into my 30's and I'd had my son; he brought it home from school and even though HE, like me as a kid, did not respond in a classically symptomatic way, this time, as an adult I did. Horribly sore throat, white spots on my tonsils, incredible swelling that had me spitting my own saliva into a cup because I couldn't bare to swallow it, etc. I was shocked the first time it happened, and a little more prepared the second time. By the third time, I could see it coming a mile off. (Now, if I'd only known what all those strep exposures were doing to my DS at the time . . . but that's another story, sort of).

 

Long story short, I would go after the antibiotics, and I would go after them hard, as hard as my body could take them. If the azith has horrid side effects for you, there are others that have been successful against strep/PANDAS to try. I have read anecdotal accounts of penicillin failing to work, but I've also read accounts of success with penicillin. But I do think that it may be less effective than some of the other abx that are second or third generations, as compared to pen.

 

My son and I both responded very well to Augmentin XR, for instance. Is this an option for you? The extended release version puts the drug to work in your body for a longer period per dose, and the clavulanic acid component is thought to have a number of beneficial properties, both medically and mentally. You might look into it.

 

All the best!

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Maybe I'll give Augemntin XR a try next. I started bicillin shots yesterday. I still have white stuff all over my tonsils. Everytime I get them swabbed its negative but my ASO is rising again. This is a complete an utter nightmare. My body aches are the worst.

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