Welcome, Guest. Please login or register.
December 13, 2018, 10:58:15 am

Login with username, password and session length


Members
  • Total Members: 33796
  • Latest: Davai
Stats
  • Total Posts: 738748
  • Total Topics: 61284
  • Online Today: 287
  • Online Ever: 1421
  • (August 13, 2016, 05:18:44 am)
Users Online
Users: 1
Guests: 234
Total: 235

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Diagnosed with low CD4 and CNS toxo  (Read 717 times)

0 Members and 1 Guest are viewing this topic.

Offline multifan

  • Member
  • Posts: 3
Diagnosed with low CD4 and CNS toxo
« on: November 15, 2018, 12:44:07 pm »
Hey all,
I was diagnosed positive in hospital at 17 May 2018. My CD4 count was 27 and VL was 180.000. I started Triumeq.
I was persistent cough, shortness of breath after light effort, weakness,  some eyesight problems, night swears, feeling cold, hair loss and headache.
MRI scan showed multifocal lesions. The largest was 23mmx20mm.
I started Dexamethasone, Mannitol, Sulfadiazine 2x3g and Daraprim 75mg in hospital. Fortunately, Daraprim is quite cheap in Europe.
My labs is in signature.

After about three months all of the ailments above have passed. I do not remember when I felt so good before,  strength and willingness to come back. The gradual improvement is from week to week.

My doctor suggests a brain biopsy to be sure about the toxo diagnosis. She is
concerned about the slow increase in CD4 and slow reduction of the lesion. Reduction in diameter is 5mm for three months. Last MRI was 16th of August.

I am afraid of biopsy and avoid it. Are my fears right? Whether a brain biopsy is so risky?
I carried out MRS scan privately, that excluded lymphoma lesion. Then, I carried privately MRI perfussion,  it also ruled out lymphoma. MRS and PWI screening was described by a professor of medicine.
Whether so many symptoms may disappear despite untreated lymphoma?
Whether the rate of lymphocyte reconstruction is not too small?


Today I received an result MRI scan mistakenly made with other sequences than before. It isn't  possible to  measure the lesion, and I have to repeat it on Monday.
I'm again afraid of the result.


Any support is appreciated.

best,
Pawel
« Last Edit: November 15, 2018, 01:16:09 pm by multifan »
OI - CNS Toxoplasmosis, oral candidiasis
17/05/2018  CD4 - 27  VL 188.000 Dexamethasone i.v., Sulfadiazine 2x3g, Daraprim 75mg, Leucovorin 15mg 1xd, Azithromycinum 1xweek 600mg
31/05/2018  start Triumeq
21/06/2018  release from hospital
08/07/2018  CD4 - 124  VL 37 Sulfadiazine 1.5g2xd, Daraprim 50mg 1xd, discontinue Azithromycinum
14/08/2018  CD4 - 110 11%
10/10/2018  CD4 -  94  9%  LDH 170 beta2microglobullin  2.2
16/10/2018  CD4 - 154 18/10/2018 VL <20
16/11/2018  CD4 - 180 11% CD4:CD8 0.2

Offline Loa111

  • Member
  • Posts: 96
Re: Diagnosed with low CD4 and CNS toxo
« Reply #1 on: November 15, 2018, 02:53:25 pm »
Sorry to hear about your Dx and related problems. It’s tough when it’s a very advanced Dx. I got Dx’ed in May too, also very advanced CD4 22, lots of health problems n fatigue etc.

Your CD4 is recovering much better than mine as I’m only at CD4 55 right now. My Id doc told me to give it time, to show patience, he said it might take up to 2 years before I recover enough to stop antibiotics

Here’s my story https://forums.poz.com/index.php?topic=69839.0

Luckily I did not have lesions, so I cannot comment on that issue. But in general sounds like our problems and journey is similar.
« Last Edit: November 15, 2018, 02:58:04 pm by Loa111 »

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,594
Re: Diagnosed with low CD4 and CNS toxo
« Reply #2 on: November 15, 2018, 05:33:41 pm »
Sorry to hear about your situation

You mention your slowly improving CD4, however Going from 27 to 154 in 5 months (not to mention UD) is incredible. Especially when you consider how ill you were at the start!

I'm no authority on the brain biopsy so can't comment. It sounds awful but I'm sure if it is used for diagnostic purposes it probably sounds worse than it is.

All I can say is I hope the news is good from the latest MRI, and you can put all this behind you and get on with life. It's hard enough dealing with an HIV diagnosis, so you have my sympathy whilst you deal with all this other stuff.
HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline JosephP

  • Member
  • Posts: 258
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Diagnosed with low CD4 and CNS toxo
« Reply #3 on: November 21, 2018, 10:08:54 pm »
Sorry to hear of all your problems! Slowly but surely you are getting better.. You started with a CD4 of 27 in May and by August you were up to 154... That is a nice increase. I started with 168 and took me more than 6 months to get to 210... Therefore the rate of your improvement is higher than what mine was..
Keep up the good work. Yes, you are going to feel sluggish and lazy but I think is a normal reaction of a body healing.. Don't despair!! :) :)
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline multifan

  • Member
  • Posts: 3
Re: Diagnosed with low CD4 and CNS toxo
« Reply #4 on: November 23, 2018, 05:25:02 pm »
Thank you all for support me in a very difficult time.
Today I received a new result CD4 - 180. I am litte concerned about the high percentage of CD8 - 47%, CD8 absolute id 770 and the still low index CD4 / CD8 - 0.2.
My doc accept the result of the last MRI + PWI scan I made privately and said that the lesion is getting smaller. She said nothing about brain biopsy. She stated that it is much better and she is satisfied with it. I don't have to repeat MRI scan.
I am also a little quieter.
I still have to take Sulfadiazine 1.5g 2xd, Daraprim 50 mg and Calcium folinate 15mg to complete disappearance of changes in the head.
Fortunately, I don't have any visible side effects of these drugs. Only light neutropenia and leukopenia. Leukocytes is about 3 G/L and neutrocytes is 1 G/L.
The next appointment with my doc will be at the end of February.

A few days ago, I vaccinated against HBV - the first dose.
« Last Edit: November 23, 2018, 05:44:32 pm by multifan »
OI - CNS Toxoplasmosis, oral candidiasis
17/05/2018  CD4 - 27  VL 188.000 Dexamethasone i.v., Sulfadiazine 2x3g, Daraprim 75mg, Leucovorin 15mg 1xd, Azithromycinum 1xweek 600mg
31/05/2018  start Triumeq
21/06/2018  release from hospital
08/07/2018  CD4 - 124  VL 37 Sulfadiazine 1.5g2xd, Daraprim 50mg 1xd, discontinue Azithromycinum
14/08/2018  CD4 - 110 11%
10/10/2018  CD4 -  94  9%  LDH 170 beta2microglobullin  2.2
16/10/2018  CD4 - 154 18/10/2018 VL <20
16/11/2018  CD4 - 180 11% CD4:CD8 0.2

 


Terms of Membership for these forums
 

© 2018 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.