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alexandros

Is this lyme bartonella or pandas, or something more serious?

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Hello to everyone and sorry forry my english, it's not my first language.

I'm 21 years old, male. 6 years ago i had some rushes on my back and on my belly. Since then, my behavior changed dramatically. I'm able to see now what i did and i feel guilty. That period I was always angry, agressive and had rages that even lead me to become violent. I broke things in my house, things that even were'nt mine and the most terrible part ... i would become  violent to my own family who love me like no other. I would bite, push, kick, yell and swear.

The same period, i had other symptoms in addition, like pain on my sole, sleep problems, some memories problems, hyperactivity, especially when i was studying, and anxiety. So the second year of high school was terrible, my grades dropped, there were times that i wouldnt sleep one day in order to go to school and times that i would take naps during the day. My behavior even changed in school. I fighted 2 times even though i didnt start any of them, i had so rage that somewhat i was waiting for these moments. 

The third year of high school was a personal a bet for me. I did everything to reach my goal which was the entrance in civil engineering polytechnique. I did it and even if i was happy, i watched only some lectures the first semester. Every time i would go there i had severe anxiety, i couldnt listen to a whole lecture my mind was somewhere else than there. In order to complete something i need the double time. Beside all, I was extremely fatique and i was gaining weight rapidily. My sleep roblems were continueing,  same with memories problems and mental but i could dicrease some rages and apologize for my fault sometimes, it wasnt the rule though.

So we are now in the summer of  2016, me going to a France village in a volunteer programm for 30 days and failing on university. Returning and somewhere on october is when the started. It begun with a fever, i woke up with chest pain, tinnitus, headache, ear pressure, vertigo, lightheads, numbness, racing heart, dizziness, severe memory problems, depersonalization and a lot more, 24/7. I didnt sleep for 3 days in raw even if i was extremely fatique i couldnt turn off my mind. This is where abstract intrusive racing thoughts started. When i was trying to study, when i would eat, when i would sleep, when i would talk to someone, when i was in the gym, even when i was sleeping. My mind was 24/7 in a chaos and confused and i couldnt do anything to change. So my sleep was restless, its was like i was(is) awake and watching vivid dreams,  i had also restless leg. i couldnt feel a joy when i was waking up and streching my body. Even when i was yawning i would feel exhausted instead of some hedonia. Some weeks after the fever, i had loss of libido. I did a testosterone test and was far away from the lowest limit. Besides all of these i had fears at night that there is someone in the house. Some times i have to say that i would ask for someone to sleep in my room. Also I was closing (still do) the windows because i was afraid of the neighborhood listen to me. Had that since the first year of university, but it became worse.

After a lot of doctors, medical exams MRIs, On May of 2017 a doctor found staphylococus in me ear and gave me antibiotic therapy for 7 days. Doxycycline 2x100 /day. The 7th day i had all my symptoms but worse. I had to take my hormonological results from a hospital so i visited the medical emergencies and they told me my hearts doesnt fuction well for my age. I stayed there 7 days was in rage all the time without knowing why. I couldnt stand up but i couldnt sit down.i felt miserably and terrific. This is where i wrote my symptoms on google and found about lyme and coinfection. I had the rush and symptoms for bartonella and several lyme symptoms. Problaby the worsening of my symptoms was the herxing, i thought.  In my country you can buy antibiotics without the permission of doctors, so i didnt only continued my therapy, but after a research on lyme and coinfection treatment, i doubled the dose , added azithromicyn 500/day, probiotics and some vitamin supplements. I did the a western blot test in my country and showed only one positive band on igg and igm, the p 41. I continoued the therapy and after 1,5 month i noticed some progress but not a big one. I did an eliza borellia and bartonella test and i'm postive on bartonella henselae igg (512 > 64) and bartonella quintana igg (126>64). On borellia eliza test, its doubtable on igg (3) and negative on igm (2). Unlike the results, I continued the therapy. My anxiety has been eliminated so my rages, my sister and mother say that i am back to my old self. Even though, every infectious doctor i visited after, claimed that i had had bartonella  because i have only posive igg and if i have had it, with the first month its gone. My igg are 8 times more of the reference number in order to be postive. I searched it and found a paper from the university of iowa claims that if the igg are 256 and up then its active.  One month ago, after 7 months of antibiotics i sent blood to a german lab. I was negative again on  borellia elispot but i had low cd57+ NK (49). I have done all the test like syphilis, hiv, mycoplasma that can possibly dicrease cd57+  or can show postive  p41 on western blot test and all came negative.

I am stuck and i dont know what to do. Even if its lyme and bartonella that made me agitated and angry and even violent, i am really scared that i hide a monster that can be showed out of nowhere. Every day i'm thinking the same thing i read stories about kids who are very agressive with bartonella and lyme but i dont know if i do it because i want to find an excuse. I apologize everyday to my mom on what i did but it still there. As for the treatment i think it stucked also. I dont have a lot of symptoms i had, but my brain fog, memory and cognitive problems, along with sleep problems and some kind of ocd do not improve. I think i need antibitiocs change, but in order to do that i need a clear postive borellia test and i have done 3 different and all negative and doubtable.

Something that i noticed,  during the treatment, is that i do not bite my nails. I was heavily obsessed doing that for as long as i remember me. I was doing that till it was bleeding. Not only nails but the skin of my nails also. I had never had normal nail size in my life and all of sudden during the 3 month of treatment i have stopped bite them. I suspect someone need more of personal work to stop an obsesse and i didnt do any of it, it just stopped. Also my mom has arthritis, teeth problems hair loss, ear problems, itchy ears and sinus problems. My sister is positive on bartonella henseale igg(256), on chlamydia pneumoniae and yersinia. Which i know all are coinfection of lyme. But she is is negative on borellia western blot as well. She has a ton of synptoms which are same with lyme symptoms. I know also that borellia can pass from mother to child.

So i want to ask you if it is possible to has someone lyme all his life with mild symptoms whithout taking therapy and then flaring up with fever and becoming worse. 

I know that this nail-skin biting habbit, is an ocd symptom which is also found on pandas kids. I asked my mom if i had strepptococcus, she said no. Can a pandas child has strep without strep symptoms. Is strep the only way to have  panda?

Something that i have not talked with doctors, is my thoughts and sleep problems. I daydream almost daily, have fantasy thoughts-dialagues and i am very concious of doing that. I was even searching if i have schizophrenia or other mental disorders. Also, seconds before falling asleep  i hear screams or even words. My sleep is very poor , more likely nonexistent. Its like the time  stopped for 8 hours and when it starts i continue my day.

I dont know, i am really confused and do not know if these symptoms are lyme bart or something more serious and irreversible. I would like to tell me if these are classic symptoms or not.

Sorry for the huge text.

 

It took me whole afternoon to write it and correct the letter mistakes. 

 

 

 

Edited by alexandros

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Hi,

If you are positive to Bartonella, know that bart in itself can cause symptoms that you are explaining, even if there is no lyme involved.  

I don't know where you are located, but a LLMD would be the correct choice.  Antibiotics alone are not the answer.  Lyme/Bart is a difficult disease to test for, and treat.

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Hello and thank you for your answer.

what do you mean by saying antibiotics alone are not the answer. Could you explain it further? 

Yes, i contacted with a llmd, in germany but the price of visit is about 900 €. i cant afford it for now 

Edited by alexandros

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In the Lyme community it is known that antibiotic are the short "long route"; meaning that although there might be some immediate relief, there is usually a problem with borellia cysts, meaning that the spirochete would hide in a shell and come out again when antibiotics are stopped.  There are many different approaches to dealing with this.  Either switching antibiotics every 30 days, or taking several at a time.

Here in NYC, I have seen several LLMD's switching over to the more natural approach.  That would involve herbs and other supplements in trying to get the body to fight the Lyme.  This is the longer "short route".  It might take longer to see results but they are usually more permanent. I would suggest guidance to get the correct supplements.  However, if money is an issue, you might want to try the Buhner protocal for Lyme and Bartonella (you can find a book about this on amazon) or others can chime in with their suggestions as well.

Edited by bws1565
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Thank you again, you helped me a lot.

Yes, I think i have to change my plan therapy since i take 7 months the same antibiotics and supplements. I did a research and found that doxycycline can kill the spirochete but can incerease the cyst. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/  . So i decided to switch it with amoxicillin. Which can kill the spirochetes and cyst as well. It is also less toxic than doxy. Yet, I will add  Grapefruit Seed Extract for a more brave cyst attack and of course azithromicyn wich does a very good job on bartonella.

Along with spirochete and cyst treatment, the plan says that detox involves water-lemon drink, clay on my body, pinela and a lot of vitamin supplements. I already take daily d3 and k2. 

About probiotics, i had been taking 250mg (1/day) of one which involves only Saccharomyces Βoulardii. Curently i did a reasearch about the right ones and i switched them with probiotics wich involves also acydophilus.

Would you think it is an effective plan?

Edited by alexandros

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I have to ask again these imporant things:

is possible to has someone lyme all his life with mild symptoms whithout taking therapy and then flaring up with fever and becoming worse?

Can a pandas child has strep without strep symptoms. Is strep the only way to have  panda?

why there are so many people-kids who have both lyme and pandas and what is the correlation between them?

Edited by alexandros

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I am not well versed in lyme, but can answer your PANDAS questions:

Technically, PANDAS is caused by strep only, but when the same or similar symptoms are caused by other triggers (lyme being one of them), it is called PANS.  You can read more about both here: http://www.pandasnetwork.org/ .

You can hear a short list of PANS triggers at the end of this 1-minute video by an authoritative doctor:  https://www.youtube.com/watch?v=qDuxlDWMgso .

Lyme seems to be common trigger for PANS.  I have seen some lyme sufferers list OCD and other typical PANS symptoms as lyme symptoms, without mentioning (or being aware of) PANS.  It may be symantics, but I believe that PANS is an extra step on top of everything else lyme does.

 

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Yes-sounds like PANS complications from tick borne infections and yes you can be strep positive with out symptoms. You might look into using Alinia in your protocol —but get a detox support in place first. Dr Horowitz’s books are good guides for the big picture. 

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Thank you everyone.

Since i stopped the antibiotics, i m taking vitamin c 1000mg, methyl folic acid 400mg, b6 50 mg, d3 4000iu with k2 50mg, magnesium 300 mg, fish oil (1 tea spoon) along with probiotics ( acidophilus and s. Boulardi) burbur pinella (30-40 drops/day) and water lemon. 

The healing process it is like i slowly discover a new world. I am now sure i had whatever it is always and as the days pass i discover new things of my true self, although i still have flashbacks of my past.

I read a scientific article about lyme and personalities disorders such as narcissism. I found a lot of common things so it would be very interesting to hear your opinions. 

http://journals.sagepub.com/doi/abs/10.1177/1534650106295847?journalCode=ccsa

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Yes sirena, i found the book of horowitz on amazon and i'm gonna buy it. It seems very helpful.

My question is If i do a strep test, is it possible to be positive even after years of strep? 

 

Edited by alexandros

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After years of strep you will need a blood test, not a throat swab.  You should look for ASO Strep Titers, and DNAse B (strep antibodies).  If both are high, and you have not had a recent strep, this would be indicative of Pandas.

There has been some speculation, including on this forum, that aluminum toxicity can cause high strep titers to cross the blood brain barrier, and thereby causing PANDAS.  Dr. Horowitz recommends Malic Acid Chelate for Aluminum removal, and Selenium for mercury; if these might be a problem.

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