Rheumatic fever turned into adult pandas?

[Aaron]

Hi all! I have been trying to find some information regarding my declining health. I have had lyme disease for seven years, I am being treated completely holistically. I had been making great progress with treating lyme, up until March 2017 I had made it almost into remission. I have been going to a lyme specialist since January 2016.

My worst symptoms are insomnia, joint pain, brain fog, memory loss, tremors, muscle pain, muscle fatigue, dizziness, and nausea.

When I was at the treatment center in March last year I became severely ill. I was there from Sunday to Saturday, Monday I started feeling kinda crumby with a sore  throat and cough and my dr. gave me a cream to help,Tuesday the sore throat was worse and I started to get tired more so than normal, Wednesday I was barely able to walk....I had extreme joint pain in every joint in my body, I could even feel the little bones in my toes, my vision became very blurry, I felt extremely hot even though I wasn't really running a high fever (I don't remember), I lost my balance, I slept on and off 24/7 for the next three days, I lost 100% of my appetite, I had a major headache. This was worse than anything I have ever had before, I had never felt such pain even from the lyme. I spent a fair bit of this time in the shower to try to relieve the pain but I couldn't stay in too long before I had to get back to bed. My doctor had no idea what happened, we suspected I had a reaction to the colostrum he had put me on that Monday(never taken it before). So he took me off that and added in something for detoxing. My doctor uses primarily kinesiology, he said everything was set off and I was showing stress towards virus, fungus, bacteria, lyme, metals, the whole 9, which is not my usual at all. This made it hard for him to nail down the specific problem. 

I ate probably 5-6 snacks between that Wednesday and that Saturday. Thats all for food.

After leaving the clinic Friday, I went home Saturday. I should have stayed at the clinic longer but I thought maybe I had a bad flu and a herx reaction, so I figured I would be okay. 

Well, I was semi right. I did start to gain progress a few days after getting home and I was no longer in pain like I had been. My appetite had returned some.

So life continued.

Not long after all this I developed OCD, where I would get the same thought and stick in my head for days at a time, I developed depression worse than ever before that was absolutely crushing, and I developed anxiety which I had never had at all before. 

I had no idea the thoughts in my head were OCD related. I didn't realize that getting thoughts stuck in my head for so long, and being obsessive over certain things were unusual. 

The depression I thought at first was from loosing the progress I had gained with the lyme, but then it continued to get so much worse. It became absolutely life controlling for most of last year.

I have had anxiety all of the time since last summer, this year its probably worse than last. I have it almost daily, sometimes extreme. Since last summer I have completely lost my appetite, everything upsets my stomach right down to water. Food doesn't look good, taste good, or feel good anymore. Doesn't matter if its healthy food or not. I had an endoscopy done recently, they said my stomach looked fine but I had one tiny pre ulcer, no H,pylori or cancer. 

Last year I was too depressed and brain foggy to care about getting better. I wanted to but I just gave up. I didn't have the thoughts for reaching out for help. I continued with my lyme doctor and autoimmune became our focus, I have made progress with this. But it has been extremely slow progress. 

I have been unable to reach out online because I didn't know where to ask or what to say. Communicating long thoughts is very difficult and Ive become extremely self conscience of how I speak because I know I no longer use correct grammar like I used to. Its like my brain has been scrambled even more than when it was just lyme.

Here what I think has happened...I think I may have had rheumatic fever when I got so sick in March. The OCD and anxiety have only gotten worse, I feel like my brain was hijacked. I do not feel or act like myself anymore. 

Looking back, I had rashes which I assumed were candida related. Now im finding pictures of the rashes online that are labeled as being caused by strep, they were round or oval shaped with a red ring and pale or almost normal center. Ive had a few candida rashes before, coconut oil usually fixes it but it didn't fix these rashes. I didn't think anything of it just because I didn't care anymore. 

I had extreme anxiety tics, I would become super stressed and tense up all over. I would cross my fingers all the time, i even caught myself driving once with all my fingers crossed over each other. Sometimes I know its happening and sometimes I don't, this has improved though.

I cried most of last year and I can no longer handle stress. Everything causes me to break down and loose it. 

I know a young boy with PANDAS, talking to his mom, my symptoms sound a lot like his.

Yesterday the naturopath I work for ordered the ASO, ANA, CD 4/8 for me, currently waiting on results. These were the only blood tests he was able to order, I know theres more tests that can be done. 

I have started taking 5HTP, phenitropic, chamomile, and dopaboost in the last few weeks, I had already been doing L theanine and adrenal support, plus a methylation protocol. These new additions have helped a lot but I know they are just helping control, they aren't fixing the issue. 

Last tuesday night around 12:45 I had such a bad anxiety attack I had to get out of my bed and walk. I took 5 phenitropic, 1 5HTP, 2 theanine, and 2-3 chamomile capsules, then walked a mile or two down the street. I finally got in bed around 2am. Then I woke up at 6:45 and was awake the rest of the day. 

since Then I have been waking up more early every day, today I woke up at 3:45 wide awake, after sleeping for about two hours. I managed to doze until about 8am but it was not real sleep. 

 

Something isn't right here. I went from being almost normal, beating lyme disease one day, then OCD/Depressed/paranoid/confused/etc the next.

 

Does anyone have any advice?

I was 13 when I became ill with lyme, 19 when the suspected rheumatic fever happened, and now im 20 trying to find my brain...

(it was extremely hard to write all this, this would not have been so hard before March '17)

[msimon3]

Aaron, many of the symptoms you describe are typical of Lyme disease.  My advice is to discontinue the homeopathy, and instead find a doctor who will treat Lyme disease with antibiotics.  Doxycycline and Metronidazole have been shown to be very effective at treating Borrelia infections, and those antibiotics were the most effective in my experience.  

Here is a relevant study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

[kakrpa]

I agree with finding another Dr. who can help with Lyme, yet also support you with other types of medicines (anti-anxiety, anti-depressives, etc. at least temporarily). You don't deserve to suffer like this, no matter what the underlying issue is - and it sounds like what you're experiencing imho IS significant OCD with anxiety and depression. I've been here too, trust me, and the longer I waited to get on medicine (anti-anxiety, anti-depressants, etc.), the longer it took to get to a much healthier place to where I could better handle the issues at hand.

[Aaron]

No I’m not changing doctors. Before I began with this doctor I did years of doxycycline, IV rocephin, a couple other abx, and never gained any progress. 

The first year I was at the current clinic I went from being bed bound to being almost normal, until I got sick in March. 

In the years before this clinic I had never gained any progress and the antibiotics gave me gut problems. 

I started back on IV’s monthly back in December, no antibiotics though just nutrients and detox.

[MaryAngela]

Aaron—

Have you considered Ozone therapy?  Also, are you able to get the Cunningham Panel lab done?  My son’s Cunningham Panel showed autoimmune encephalitis.  He is improving from monthly IVIG treatments.  He did 15 ozone treatments about a year ago also. It got rid of one of his major compulsions.  

[Aaron]

I’ve looked into ozone but couldn’t find anything around. 

This really doesn’t feel like Lyme to me, I had Lyme 6 years before this happened and it was a different version of . The pain from this has been different and the psychological symptoms have been different. 

 

Im not familiar with the Cunningham panel ?

[MaryAngela]

My son does not have Lyme, and the Ozone helped somewhat. The Cunningham Panel has become the standard lab used to show there is an autoimmune component to OCD and tic symptoms.  Based on the results of the Cunningham Panel, my son’s doctor is treating him for autoimmune encephalitis. Do a Google search on Cunningham Panel or Cunningham Panel PANDAS.  You can probably search within this forum also.  

[Aaron]

Ill see what I can find on that, im desperate to do something. Ive got to do something to feel human again.