My history from 5 years old.

[Guest]

I recently received all my records from my old crummy GP. My first doctor visit with him was at age 5 (I am 27 now) and I am complaining about sore throat and tonsils. Every year till now, I went in about 4 x's with sore throat, enlarged tonsils that were different sizes, and they constantly put me on abx. I frequently complain about post nasal drip and major bladder problems (starting at age 7). Age 8 is the first positive strep. Strep again at age 9. Still won't remove tonsils.

Age 5 - 11: coming in 4x's a year with sore throat, inflamed and infected tonsils, and bladder problems.

Age 12 - first mention of lethargy, migraines, sore throat and tonsils again, bladder getting worse.

Age 15 - chronic pain in shins.

Age 16 - tired all the time........throat problems and post nasal problems persist. Records of me trialing: nexium and pepcid, tons of nasal sprays, claritin and benadryl, and prednisone briefly without any symptom relief.

Age 18 - anorexia suddenly, with depression and insomnia. Continue inflamed tonsils and sore throat. Looked like my GP did very little to help me out with any of this and looking at it all, it is clear that I am getting sicker and sicker each year.

Age 20 - ECT (electro convulsive therapy) b/c the doctors claim my fatigue is due to depression. In the records I state that the ECT made me worse and screwed up my memory.

Age 21 - severe pain in right hand and movement disorder of right arm. Every doctors visit tachycardia. Onset of bulimia.

Age 22 - sudden onset of severe anxiety and constant tachycardia = insomnia

Age 22 - 23 - completely bedbound by death like fatigue for all of year 2009

2010 - 24 - onset of ocd

present - severe fatigue, post exertional malaise, severe insomnia, non restorative sleep, getting worse every week, obsessions without compulsions, POTS, bladder pain all the time, re-occurring infections, unable to use voice so sore, daily migraines, and etc.

Looking at all of these records, it seems like things started back when I was just 5 years old with "sore throat and tonsils". Each year there were new symptoms but that was always they chief complaint. My mother asked many times as they noted to have tonsils removed but they wouldn't. I hope a doctor can look at all of this and put the pieces together.

MY QUESTIONS - I had strep when I was 8 and 9 possibly when I was 5, but major stuff didn't show up till a decade later. Is this still possible for pandas? I am confused by the topic of auto antibodies and BBB.

Also, if it's not reflux and it's not allergies............what is causing this life long sore throat and post nasal drip?

All of these records will be sent to the 2 doctors I am hoping to see by the end of the year. Thanks for any suggestions.

[rowingmom]

Just some things that came to mind as I was reading. Please understand that I am seeing all this through my lyme/bartonella infection lens. I am very familiar with these symptoms, but they could well be caused by other infections or conditions:

 

- continuing sore throat - chronic unresolved strep

 

- chronic shin pain at age 15 - by that age, most females have nearly reached their growth potential so this was probably not "growing pains". This is a very common symptom of bartonella as these bacteria invade bone marrow, in DD's situation her bone pain included shins, forearms and skull.

 

- anorexia, anxiety - can be a PANDAS/PANS symptom. DD had anxiety attacks, but not anorexia. Her OCD symptoms included drawing the same pictures over and over.

 

- movement/pain disorder - lyme can be misdiagnosed as MS, ALS, Parkinsons, all of which have an autoimmune neurological (pain) component. DD did not have this symptom.

 

- tachycardia - bartonella effects endothelial tissues including that of the blood vessels and heart and can cause heart symptoms. DD had palpitations and some tachycardia.

 

- fatigue - this was one of DD's main symptoms. Any exertion ie, bike riding for 1/2 mile would result in her having to sleep for a couple of hours in the afternoon. She was unable to play with friends and had to watch from the curb.

 

- severe insomnia - DD always had trouble getting to sleep at night, and while she was young we resorted to a white noise machine. For the two years before her treatment started, she would wake around 1:00am and be up until 4:00am. I always insisted that she stay in her room, and so she did. Reading the night away. Poor little thing.

 

- reoccurring infections - lyme and the coinfections are very immune suppressive.

Edited September 8, 2013 by rowingmom

[PIK]

I get tachycardia before I get sick. It's like a prodromal thing. I think it has to do with rheumatic fever/strep. I have had an echo, which was normal, but since I do believe I've had rheumatic fever, there are probably cardiac changes that are too minute to be seen by echo.

 

The same goes for the bone/shin pain. I have pains too. I think it has to do with strep etc. Have them look at your vitamin D levels. Mine was really low and vitamin D replacement helped with the pain to some extent. It was a similar "rheumatic" kind of pain.

 

Nonrestorative sleep. I have that to. This, along with your reflux, sounds suspicious to me of sleep apnea. I have severe sleep apnea. You will need to get a sleep study. This is often diagnosed in conjunction with rheumatism.

 

My anorexia symptoms showed up first, at age 12, with obsessive calorie counting and body weight concerns, but my full fledged OCD didn't show up until two years later at age 14.

 

A lot of what you described sound like my story too, and I think people just react differently. It's not as simple as looking at symptoms etc., or else everyone would be a doctor.

 

Ask for vitamin D levels, a sleep study, and ASO and antidnase B studies to be done.

[Pandasphilly]

I believe the best doctor to help your symptoms would be someone in integrative/functional medicine. I just learned that chronic sore throat is a classic sign of Lyme and coinfections (even along with intermittent positive strep results, when strep would leave we'd still have sore throat as our primary symptom)

When I had Lyme I had a fatigue that was indescribable so I understand your year of 2009. Even lifting my arm to brush my hair became impossible. I felt as if my limbs weighed a thousand pounds.

I would need more detail on the urinary issues but there is a common link between folinic acid & b12 deficiency causing urinary problems. This can be easily identified with particular blood tests and if that is the case the urinary issues often resolve immediately with treatment. PM me if you would like more information on this.