Diagnosed with Toxoplasmosis; CD4 = 340, VL = Undetectable

[rdavid]

Hey everyone.  I have been HIV positive since early 2001.  I recently ended up in the hospital because I was experiencing weakness in my left arm, and slurred speech.  I was diagnosed with Toxoplasmosis, which is one of the opportunistic infections that HIV+ people can get.  But the doctors are pretty puzzled because I have a CD4 count of 340, and my viral load has been undetectable for several years.  Has anyone else experienced something like this?  Getting an opportunistic infection despite having very good "numbers"?  Also, has anyone ever had a bout of toxoplasmosis?  I'm very concerned because I have read that it can recur, and can even cause vision loss.  Any information/first-hand experiences that anyone could offer would be greatly appreciated.

[Ann]

Hi David,

According to the Toxo Lesson, it is rare in people with counts above 200. I'm afraid I can't tell you anything that isn't in the lesson, so you might as well read it first hand.

Are you still being treated?

And welcome to the forum, by the way. I'm glad you found us.

Ann

[paolo10954]

I'm sorry about your recent diagnosis of toxo. Not long after we were diagnosed with hiv, my partner developed stroke-like symptoms with left sided weakness. At that time, his cd4 was just above 200. Took him to the hospital for left hand weakness and he was immediately admitted as they thought he was having a stroke in evolution. After all the CTscan, MRI, they diagnosed him with toxo and by the 2rd day in the hospital, his left side was already involved, having problems walking. Then he had a grandmal seizure on the 3rd day. His medications included Prednisone, Sulfasalazine, Keppra, Leucovorin, Bactrim, Marinol, along with his Truvada, Norvir, Reyataz. The prednisone did a number on him, can't sleep, severe anxiety, can't be left alone, he was really scared not to mention that his left side progressed to where he had no left hand movement and he can't pick up his left foot. His MRI looked like swiss cheese with the lesions. There were several failed spinal taps as well. I stayed with him for more than a week in the hospital and the staff were so nice they allowed me to sleep in the room. After 10 days I took him home. Being a PT myself, I did all his rehab and after 8 months he was back to driving, and 10 months back to work. He had periodic MRI's with and without contrast which showed continued reduction of the lesions. It's been 1 1/2 yrs since and he was just recently taken off the toxo meds. Last MRI only showed some foci of scar tissue left by the toxo. Because of these, he needs to continue his seizure medications as they could still cause seizures tho he hasn't had any since the grandmal at the hospital.

I hope this give you an insight and realize that it is treatable when diagnosed correctly. This experience as life threatening and difficult as it was made our relationship stronger than ever. I'm hopeful you would get through this.

Paolo

[Dragonette]

Hi,

I am sorry to hear your diagnosis. Although toxo is not supposed to occur over 200 like Ann said, or here in the Netherlands they even say not over 100 CD4s (I know b/c they refused to test me for it when I was 180), I have heard of several cases including one person who was around 600. I have argued with the doctors over this, but they refuse to beleive me. These cases were intially misdiagnosed, b/c of the high CD4s, so I think it is good that your doctors are diagnosing and treating you seriously and not sticking to the book. About vision, I know they do a test (they tested me when I was below 100, but not for toxo itself but for damage to the eye), and I think it has something to do with eye pressure. But all these things you should hear from your doctors and now is the time to harass the hell out of them for the most proper and efficient care.

Figers crossed for your quick recovery and strength on the way to it,

[aztecan]

Hey rdavid,

I am sorry you find yourself in this situation.I have not known anyone with toxo in years and they were all people who had very low CD4s, so I can't be much help.

But I wanted to welcome you here. Glad you found us and I hope we hear more from you.

Hey Paolo,
Thank you for your insight into this. I learned a great deal from it.

HUGS,

Mark

[Ann]

rdavid,

I was at my clinic yesterday, and asked about this as I was curious. This is how I put it to my doc:

If you had a patient (diagnosed in 2001) with a CD4 count of 340, undetectable VL,  who presented with left arm weakness and slurred speech, who also tested positive for toxo antibodies, what would you think?

Answer:

I'd keep looking for other causes, because it would be unlikely to be caused by toxo. Many people will test positive for toxo, but unless there are very few CD4 cells - below 100 - or the patient is pregnant, there are normally NO clinical signs and no need to treat.

So I asked, "what other causes would you initially suspect?"

Answer: A mild stroke.

David, it might be worth it for you to get a second opinion on your toxo diagnosis. There just might be something else going on that your doctor is missing.

Keep us posted.

Ann
(who considers herself fortunate that she is given time during appointments to ask Off Topic questions)

[rdavid]

Everybody, thank you so much for the valuable information you have provided, especially personal experiences with this.  Someone mentioned the possibility of a stroke as an explanation for my symptoms.  Actually, I was first hospitalized in Baltimore where I was visiting friends.  In Baltimore, they diagnosed me as having had a stroke.  I had been experiencing left arm weakness and slurred speech.  Well, I was discharged, went home to Miami, and had a relapse.  I was admitted to the hospital down here, and the neurologist said that in her opinion, I had not had a stroke at all, but that it was most likely toxo b/c the MRI showed a lot of lesions on the brain.  I had a spinal tap done, but apparently the fluid was clear.  This has really been a mystery for a lot of people.  Even the infectious disease specialist in the Miami hospital said he'd never come across something like this (toxo in someone with a CD4 count of 340.  I've done some research in the literature, and I'm beginning to think that I may have acquired somewhat recently a different strain of the organism that causes toxo.  Anyway, since I've been taking the anti-toxo meds, I feel 100% better, so it's probably like that it was toxo.  I'm also very lucky in that I have no residual neurological deficits.  My left side and speech are perfectly normal.  I'm having a follow-up MRI on 10/8 to see if the lesions have shrunk.  I'll keep you guys posted.  Again, thanks so much for the positive thoughts.  You've really made me feel much better.

[Ann]

Hi David, thanks for the update. I was wondering what happened to you! I'm glad you're feeling better and I hope you get to the bottom of your mystery - and let us know what you find out, because we're a nosey bunch.

The main thing is you're better!

Ann

[BT65]

Hey rdavid:

Glad you're feeling better and welcome to the forums!