PLEASE HELP

[PIK]

I posted a few threads about my history. I have had rheumatic fever, glomerularnephritis, and suspected PANDAS with severe OCD in the past. Most recent ASO titer was 1500 and I was started on penicillin VK 500 mg three times per day for 10 days. Then 500 mg once per day for three months, at which point I will see rheumatologist again. I am now on day 10. Here are some issues I have been having:

 

1. Slight vertigo/dizziness/headache, especially after taking penicillin. It almost feels like the back of my neck hurts, what I would imagine meningitis to feel like. I really doubt I have meningitis though as I would be dead by now.

2. Peeing A LOT and large volumes, with a strange smell. I don't know if the penicillin would make the urine smell or if it's something else.

3. Left ear pain with some moisture in my ear, especially in the morning.

4. A sore in my mouth.

5. A bruise on my arm. I don't usually bruise. I did take aspirin a few times for headache, but I don't think it was enough to cause bruising.

6. A little anxiety and maybe some elevated obsessional thinking/fears about illnesses, but I think I'm pretty okay mentally and the worry is normal.

 

I spoke to the rheumatologist yesterday, who acted like he was doing me a favor by talking to me and he suggested I see my primary care physician Monday and to go to ER if I feel ill before Monday. Thanks, I knew that without wasting my money to call him. It seems like a lot of you have a LOT of experience with strep and PANDAS and ASO etc. Can you please help me. I do plan on seeing Dr. B as soon as possible, but I don't know what to do. The doctor I'm scheduled to see Monday doesn't know what rheumatic fever is and looked it up online when I brought it up to him. What is going on? Is it rheumatic fever again? Glomerularnephritis? Just a strep infectoin. Please help. As far as I can remember I haven't had a strep infection in a long time and all cultures have been negative.

[beeskneesmommy]

Any doctor, no matter how young, who doesn't know what RF is, simply must have gotten his/her degree out of a Cracker Jack box. There are many who mistakenly belive that it "has been eradicated with modern medicine" (thx CDC), but to not know it at all is very strange. Sadly, I have no other advice than to get to Dr. B or another specialist (sounds like an immunologist is the best bet) and check of other types of infection in addition to Strep. I am sorry you are having so much misery! I hope that your appt. w/Dr. B is coming up soon!

[SSS]

Obviously I'm no Dr. or expert, but wish I could help.

What I thought reading your post,

with the titers so high,

some infection must be high, and when

you attack it like you are with full dose antibiotics,

there is some 'die off' and the body needs to process this stuff out.

And it doesn't feel so good going through it.

Are you taking a high count, quality probiotic at least 2-3 solid hours away from the antibiotics?

Liver support is also important, like milk thistle, or ALA supplements,

drinking lots pure water, very low sugar, healthy diet.

Epsom salt baths help, with water warm/ hot enough to sweat-

walking, and rest.

Ibuprofen can help the neck pain, gentle massage can help.

Make sure bowels are moving regularly.

When I was on Bicillin shots, about an hour after receiving it, I would be completely wiped out- need to lay down and shut off everything.

But helping your body process what's happening may make it easier.

[SurfMom]

Please be prepared to hit the eject button if you are dissatisfied with your doctor. I am suspect of the ability of one who does not know what rheumatic fever is. While less common than it used to be, it is a well-known and not unheard of diagnosis. My daughter was diagnosed with it although her symptoms are somewhat dissimilar as she has had no urinary, ear, skin or mouth problems. That said, do not go in thinking any particular diagnosis, just go in with a complete list of symptoms written out and have multiple copies so one can be put directly in your file. One little symptom could be the lynchpin and you don't want anything overlooked.

 

When looking at titers, it will take time for them to be meaningful as they will be looking at trends but any doctor worth his salt will see that you WERE infected at some point.

 

If your insurance requires referrals to be seen by specialists, I would definitely ask to be seen by a neurologist, immunologist and rheumatologist. Good luck...I think you are heading in the right direction just by being here.

Edited August 25, 2013 by SurfMom

[PIK]

I had medical complaints for years with the diagnosis being "somatization" or some other nonsense here in the United States, until I saw a doctor in Greece when I was feeling ill who questioned me about having had rheumatic fever and found ASO level to be elevated. When I started researching it, I realized that I had in fact had rheumatic fever. I clearly remember erythema marginatum on my back, which I thought was just a heat rash. From there everything fell into place, I had glomerularnephritis and severe OCD which I believe was PANDAS and no such diagnosis existed then. She stared picking at the string, and I started pulling it, so the whole sweater shall I saw started unravelling. I too could not believe he did not know what rheumatic fever was, as it's on medical boards, but with the experiences I've had with doctors here, I'm assuming you can bluff your way through medical school. Some nurses, pharmacists, or mere experienced hypochondriacs seem to have more medical knowledge than some doctors.

[peglem]

I too could not believe he did not know what rheumatic fever was, as it's on medical boards, but with the experiences I've had with doctors here, I'm assuming you can bluff your way through medical school. Some nurses, pharmacists, or mere experienced hypochondriacs seem to have more medical knowledge than some doctors.

Yup!!