What does those results mean? Possible Lyme?

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Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 4/26/2018 3:23 AM (GMT -6)   
Hey.
I'm a 25 years old male from Germany so i try to make it short :D
Have been suffering from severe OCD since I was 3 years old or so. Later on BDD, derealization, depression, irrational fears etc.. From age 6 on developed this strange sense of derealization. Also tons of strange visual sensations. Learning difficulties. Couldn't concentrate. Obsessed with my face. Problems reading. Severe handwriting deterioration. And tons of more symtoms. Those didn't hit me all at once but gradually developed. So i found out about Pandas/Pans. Could it be the case that lyme triggered all of these in early childhood? Have had severe separation anxiety very early on, remember a period where I couldn't and didn't want to eat anything, becamse severely skinny, everything tasted wrong. Just rambling at this point. So I have dozens of weird symptoms that hardly can be explained by mental ilness only.
Have had a lyme test, can't attach it here? don't really know if it is elisa or western blot. all i know is that band 39 was positive. isn't that highly lyme specific?
Love,
Sascha

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 4/26/2018 3:33 AM (GMT -6)   
hi and welcome to the community. Germany is blessed with many labs and clinics that test/treat lyme and have much better results than stock tests. So please get in the car and drive to Augsburg where there are several lyme clinics, get tested there.

these two labs have world wide recognition:
/www.arminlabs.com/de
www.bca-lab.de/de/

There are people coming from Australia to get tested here, so u being based in Germany i am assuming it's a plus for you.

As for your band 39, yet is is lyme specific, here's the complete list
lymeaware.free.fr/lyme/Serologies/western-blot-bands.txt

but again ... get tested in a specialized lab ...

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 4/26/2018 9:25 AM (GMT -6)   
Pandas/Pans is very plausible as is Lyme. I think band 39 is highly indicative of Borrelia exposure. Curious if you had any history with Strep infections?

I agree with mpost. Seek treatment with doctors that understand late untreated infections (LLMD's).

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 386
   Posted 4/26/2018 11:47 AM (GMT -6)   
It sound like you might have Lyme. I also had similar strange symptoms as a kid, that now I think were symptoms of babesia or bartonella (co-infections). You could have pandas, but I would definitely see someone who know about Lyme and co-infections. Anxiety plus all your other symptoms might be a sign of babesia or bartonella.

I also had OCD/strange fears since I was 3. They have gone away gradually, and I'm not sure if it was treating the Lyme, getting on a better diet, or what.

Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 4/26/2018 6:17 PM (GMT -6)   
Thanks mpost four your suggestions! Thanks missouri and notime4lyme! I already contacted Dr Armin Schwarzbach, he advised me to fill out an initial testing for lyme and coinfections. He recommended to get the follwing tests : Borrelia-Elispot + CD57 cells
2. Chlamydia pneumoniae-Antik├Ârper + Chlamydia pneumoniae-Elispot
3. EBV-Antibodies + EBV-Elispot + CMV-Elispot + CMV-Antibodies + HSV1/2-Antibodies+ HSV1/2-Elispot

I already talked to a doctor who is well knowledged about Pandas/Pans. He recommended me to get titres against lyme, chlamydia, bartonella, mycoplasmae, HSV, syphillis, measles, mumps. Furthermore IGG, igA,igM,igG, FSME, alpha level. Already checked ASO titer which came back very normal which was disappointing. My theory was that I had Pandas caused by strep in early childhood. And yes, I had lots of strep exposures. But as I dived deeper, I found out low ASO titres dont mean much. Furthmore, I guess the use of antibiotics brought it down anyway? I have used antibiotics in all those years a few times, most of the time for just a few days, max 10-14 days. Suffered from severe Pharyngitis and later on had a myocarditis. Was treated with antibiotics. Don't really know if my condition improved.
I am utterly confused at the moment as they are so many tests and possibilites to rule out. My very early onset of OCD, separation anxiety, tics points indeed towards Pandas. Could it be Pans, triggered by lyme? Again, I lean towards the strep exposure side. Who knows? sad I just don't buy the idea that all of this i just psychiatric. Sorry for all the rambling, but can you guys push me towards any direction? Isn't the band 39 positive weird? After all, could it be a false positive? Ive read that this band is so lyme specific that some say if this one is positive you have lyme? ("There are nine known [Lyme] Borrelia burgdorferi species specific Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is lab evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.") Sorry for all the rambling, hope you make it through it. I didn't expect lyme at all because i don't really have had significatn joint pain, severe headache, swelling or fever.

Post Edited (Saschaaa) : 4/26/2018 5:26:03 PM (GMT-6)


Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 4/27/2018 5:20 AM (GMT -6)   
What is the most horrible and persistent symptom is the sense of unreality (derealization). Everything looks ****ing weird, my brain can't really put the things I see in context. When I enter a room, I cant get the sense of wholeness of the room. My eyes are often tired and feel strained as ****. My brain is always overstimulated and foggy as **** though I basically lay in bed all day. The visual I see sometimes just hurt my brain. Things look wrong. If I am outside the things look awful and wrong. That feeling of wrongness also triggers a sense that I look horribly wrong. I really don't know if this is all just mental, a result of BDD. But I've never come across such BDD symptoms. The objects I see sometimes fuse with my body image. It's weird as **** and hard to explain. Shifting gears doesn't work automatically at all. Everything seems like hard ****ing work and I constantly have to adapt my brain manually. I get stuck on basically everything. Words, songs, visuals, concepts, feelings. I can hardly believe that this is all just "regular severe OCD/ depressions/whoever the **** knows".Underneath I sometimes feel all those positive feelings. But they are all deeply buried inside. Ahh man 25 years old and basically never lived a day of my life. Feels awful..

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33927
   Posted 4/27/2018 12:16 PM (GMT -6)   
Hi Saschaaa - welcome to our community!


There is a link between Pans/Pandas and lyme disease and coinfections.

And yes, band 39 is specific to Borrelia.

I'm sorry you have been suffering your entire life with this.

I also never had a fever or headache with this illness.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 4/27/2018 3:46 PM (GMT -6)   
I'm so sorry for all your suffering and very glad that, at 25 years old, you have the courage to say, "Hey, something is very wrong here," and do something about it.

I would follow through with Dr Armin's advice and get those tests done. That's the first step. Don't be afraid to take it.

Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 5/3/2018 11:12 AM (GMT -6)   
Hey, guys, thank you so much for your replies!
I visited a new doctor and told him my main symptoms and showed up the note from the immunologist from Munchen who is well aware of pandas. I was able to convince him to get lots of tests. There are the following: Vitamin D, Ferrum, Ferritin, Coeruplasmin, copper, another lyme test (don't know which one), titre against chlamydia, mycoplasma, bartonella, herpes simplex, igg, iga and igm and i think some more. Do you guys think that if my ilness was triggered by a infection in chilhood all those tests should come up with something? Also gave him a urin sample and get checked for possible thyroid problems. I am a bit worried that all those tests come up with nothing and I still had the OCD/BDD/anxiety/depression/and lots of more triggered by strep in childhood. Again, my aso titres were totally normal. Will get the results in a few days. What should I do if all those tests show nothing? Sorry for all the weird rambling.. I will get an MRI as well but I read they normally show only major brain abnormalities. Maybe get a SPECT scan? I don't care about the costs. Something is seriously, seriously wrong with me and I get worse everyday. My life is a mess constitued of 24/7 anxiety, depression, derealization, problems thinking, obsessions,visual problems, shame, guilt, nightmares and it just seems to get worse. Hope I'll get a response out of this childish rambling.
I will stay strong no matter what

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 5/3/2018 11:23 AM (GMT -6)   
I'm pretty confident something abnormal will show up on those tests. Those with chronic illness have chronic immune dysfunction that often includes positive IGM or unusually high IGG titers for the pneumonias and various viruses, especially the herpes family of viruses.

Don't be surprised if the Lyme and/or bartonella test comes back negative. Testing for those is frequently negative and I believe even more so for people who have been infected for years. The Lyme specialty labs like Igenex and DNA Connexions are much better for those.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33927
   Posted 5/3/2018 11:43 AM (GMT -6)   
WalkingbyFaith said...
I'm pretty confident something abnormal will show up on those tests. Those with chronic illness have chronic immune dysfunction that often includes positive IGM or unusually high IGG titers for the pneumonias and various viruses, especially the herpes family of viruses.



Not necessarily - I had a gazillion tests done with my GP and only my coristol was high - but normalized on the retest a few months later, estrogen (which she said was menopause) and vitamin d on the low side (but still okay)

So, even if everything - or most comes back 'good' or 'in range' - don't abandon the fact that you do have a tick-borne illness.

The band 39 is specific to borrelia.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 5/3/2018 12:00 PM (GMT -6)   
Thank you so much for your replies guys. I will keep you guys updated.

Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 5/3/2018 12:09 PM (GMT -6)   
If this is all psychological or just severe OCD (guess OCD could be considered a biological disorder, not for everybody probably) I am really ****ed. I don't see how all amounts of therapy in this world could get this under control, seriously. I mean, common, I was 3 years old when I was sitting in Kindergarten and there were ambulancemen that told us about first aid for about an hour. All i could do was think of the fact that I ate sand a few hours ago and that I will probably die in a few minutes. And I obsessed about it, started sweating and couldn't absorb an inch of information. I already felt crushing guilt in Kindergarten, had to tell my mother everything. I mean those symptoms are OCD-related but if it's really just "normal OCD" I definitely have the worst case ever and no amount of SSRI's, CBT or whatever can help me...

Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 5/3/2018 12:14 PM (GMT -6)   
And if so, I have all those ****ing comorbidties. Oh I forgot on top of severe OCD, BDD, depression,anxiety about everything, derealization and depersonalization I also seem to have hypochondriasis. But it's an OCD-spectrum-disorder, so it's not that bad smile Joke, I'm just so intensely frustrated. Ahh, and huge ADHD tendencies. In my childhood I remember that I could watch a movie and not absorb anything. I just focused on the visuals. Gosh, I had sooo many situations that were so ridiciously embarassing cause all of this crap where I seemed like a guy with an nonexistent IQ. On top of all that, of course, I developed a serious case of Avoidant Personality and social anxieties. How could you not if you are derealized 24/7, feel ugly af, OCD makes you doubt everything, nothing you do ever feels right whatever... Had to let that out, sorry

Saschaaa
New Member


Date Joined Apr 2018
Total Posts : 8
   Posted 5/3/2018 12:22 PM (GMT -6)   
And that is really the last ramble of today. I'm just confused that I don't have lots of actual physical problems and therefore subconsciously I think there has been something gone horribly wrong in my childhood. Only "physical symptoms" are all the ****ed up very severe visual derealization symptoms, foggy as hell, can't think straight, lose orientation easily. Besides, just pretty often Herpes on my lips, one or few severe fevers in childhood, mononucleosis when I was about 14 with enlarged spleen for a while, myocarditis a few years later I guess. No real joint paint, I mean my joints are pretty skinny and get hurt very easily, but I guess that's just the way it is. It's hard for me just to stand for a while it feels very exhausting, carrying things like bags for a few minutes seem to "activate" my muscles too much and is too strenoous proportionally I guess. But i go to the gym often and have lots of strength. But only those kind of strength that lasts for 5-10seconds. In school I got side stitches very often and fast when doing aerobic endurance. Had the strong urge to jawn very often in childhood. And it always felt rong and unsatisfing as ****.Pretty often have slight headaches, but nothing special I guess. And very severe hangovers after drinking - I intentionally pointed out those symptoms because I know they could be related to Lyme. Aaah, and the very severe "something is wrong" feeling that feels almost physically, the feeling that I have to do something about it, all those weird, semi-pre-tics that I could do all day. Those are the physical symptoms I could think of at the moment. I am sure they were more but I don't think they were huge otherwirse I could remeber it. That's the last one for today. I'm sorry

Post Edited (Saschaaa) : 5/3/2018 11:26:24 AM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 5/3/2018 12:30 PM (GMT -6)   
Those symotoms are truly awful, and it is a shame you have suffered for so long.

These infections can surely cause those symptoms. Treating them will likely take some trial and error and will probably need a tailored approach. Treatment for most of us is long (years), so there is no quick fix. BUT, it is absolutely possible to get better and even get to a place of remission.

I'll be on the lookout for your post when you get your results back.

Looking at the positive side of things and havung hope can go a long way in supporting any treatment method you end up choosing.

I have had signs of bartonella since childhood, and I have had to work through feelings of anger and bitterness. With God's help, I'm doing a better job of that now and have more peace. That peace helps a lot.

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 386
   Posted 5/3/2018 1:19 PM (GMT -6)   
I had very similar symptoms as a child. I don't know if it was babesia or some kind of tick-borne disease or not but it was awful. I also didn't have too many physical symptoms until I got Lyme.

I don't know what cause these types of symptoms, but someone ought to figure them out. For me, they started going away maybe in my late teens and now they are almost completely gone. You might say I grew out of them, but I don't think so. I think all the things I did to get my health in shape since then really helped.

I started limiting grains, starches and dairy (and no sugar), and I've been taking a lot of different herbs. I make sure I get enough sleep and exercise, and I try not to put too much on my plate and so I don't get over stressed.

I'm to the point where I feel halfway healthy, so I don't feel like I need to worry too much about my health. I tried going for counseling to help the OCD in the past, and getting books on how to get rid of it but honestly it didn't do anything. I think it can be some problem in your brain that is caused by something. I also don't think anti-anxiety meds would have worked for me, and I'm glad I didn't try to find out.

Sometimes I chalked my problems up to heredity, because strange health problems seem to run in the family, but I think your genes don't dictate your whole life.

I agree with WalkingbyFaith. Being at peace with God really helps you to heal in ways that you couldn't before. I think I couldn't have gotten healed of whatever it was if I hadn't been praying. I was really angry for a while.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33927
   Posted 5/3/2018 1:23 PM (GMT -6)   
There's a Canadian woman = Vanessa Farnsworth who treated lyme many years ago.

She stated her symptoms started with neurolyme. Not physical.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 246
   Posted 5/3/2018 1:26 PM (GMT -6)   
I'm so sorry you have suffered for so long, and practically your entire childhood and young adult life.

By the way, many of us have the very specific gripe of being told we are crazy, it's in our heads, see a psychiatrist when in actuality there are multiple infections wreaking havoc in our bodies and that these must be addressed first and/or holistically. We need more competent knowledgeable MDs because there aren't enough specialist (LLMDs) for us.

Germany as a hot spot for tick pathogens, and then treatments, you will do well to see those labs and doctors (Armin, Augsburg, etc).

I hope you begin to unravel the mystery of what ails you with a finer set of diagnosis, maybe an antibiotic or thermal treatment plus herbs could very well help you after all.

I trust you, and I trust my gut to know when something is very medically wrong. I hope you can treat it successfully as I also continue my own treatments.
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