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Anonymous
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Starting meds soon, can he start now?
      #213485 - 10/30/06 07:42 PM

My partner has an appointment for the middle of next week to get set up for meds. He was diagnosed this past summer and had a CD4 count of 199 at that time and PCP (that's how we found out). He had previously been misdiagnosed as having Crohn's Disease and was on medication for that which suppressed his immune system, which is how, we believe, he contracted the PCP and his immune system reacted so quickly as he had tested HIV- just last October. I am HIV-. His doctor at the time he was diagnosed as HIV+ this past June, started him on combivir, and that only. We've since switched doctors to a much better hospital, etc., and learned that it's highly recommended to have a 3-drug combination, not just the 2 in combivir alone. Well, he hasn't taken the combivir since this past summer and only took it then for a few days (maybe a week) before he switched to his current doctor, so he still has a lot of that med here at home. MY QUESTION IS.... I'm really worried because he is having some severe memory loss over the past four days and would it help him / hurt him to go ahead and start back on just the combivir by itself until we see his doc next Wednesday for meds? He's not having any other illness rght now other than some headaches and occaisional abdominal pain, which he says aren't really bothering him right now. However, he can't really remember much of what he's done the past 4 days even from the past half hour. I prompt him a lot, and even that doesn't help him remember some times right now. He's driven to work, etc.. and he can remember some things. He said that he forgot what he was doing several times at work today. I'm afraid that something will happen to him and hope that maybe if he started his combivir now it would help? I have no idea. We tried to call and get him in sooner to see his doc but there are no openings. I know they would just say to go to the ER if we are concerned enough about it. I'm a big worrier and worry about him a lot. Part of me says it will be OK and one week won't make a difference. I'm going with him to his appointment next week, I'm just really worried about the mean-time. Any thoughts, help???

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Bear60
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Reged: 12/21/05
Posts: 1390
Re: Starting meds soon, can he start now? new
      #213544 - 10/31/06 02:03 PM

I cannot diagnose what is happening to your partner. But....I have a friend who is having the memory loss and so on and he has just been diagnosed with PML...a serious infection of the brain. If I were you I would be calling the doc and explaining whats happening and telling him your concerns. If you get no response I think you need to go to the emergency room. Your partner may need to be admitted to a hospital.
My friend had MRI and CatScan as well as a biopsy of brain tissue to make a diagnosis.
The best treatment for PML it seems...from reading about it here on TheBody....is improve the immune system ( raise the CD4 counts etc) and to do that your partner must be on the correct medications.

--------------------
6 ft tall poz bear in Philadelphia

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Bear60
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Reged: 12/21/05
Posts: 1390
Re: Starting meds soon, can he start now? new
      #213547 - 10/31/06 02:06 PM

.
What Is PML?
Progressive multifocal leucoencephalopathy is a serious viral infection of the brain.
"Encephalo" means brain. "Pathy" means disease. Encephalopathy is a disease of the brain. "Leuco-" means white. Leucoencephalopathy is a disease of the white matter of the brain.

"Progressive" means that this disease gets worse in a short time. "Multifocal" means that it shows up in several places at the same time.

Researchers estimate that about 6% of people with AIDS develop PML. Most cases of PML show up in people with CD4 cell counts below 100. The exact rate is hard to know because PML is difficult to diagnose.

Most cases of PML used to be fatal. People diagnosed with PML lived an average of 6 months, and most died within 2 years. However, if people with PML start taking strong antiretroviral medications (ARVs) to control their HIV, they can survive much longer. Now only about half of people with HIV and PML die from PML.

The "JC" virus causes PML. Between 80-85% of all adults are exposed to this virus worldwide. In people with weakened immune systems, JC virus can become active.


--------------------
6 ft tall poz bear in Philadelphia

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Anonymous
Unregistered

Re: Starting meds soon, can he start now? new
      #213823 - 11/04/06 10:17 PM

Bear 60,

Thank you for your replies, they were helpful. I got my partner in to see his doctor on Friday and was able to share all of the information with them. They also found that his left side was a little weaker than his right, and he's left-handed. This was of some concern as it is also a symptom as I found from further research about PML. Only his short-term memory has been affected until today, he couldn't remember our vacation in August which lasted about 4 days. I'm thinking that is probably a part of long-term memory. If this continues tomorrow then I will take him to the ER. The doctor said yesterday that he needed to go to the ER if there were any changes such as coordination, fever, long-term memory loss, etc... So I'm watching that closely. He has an MRI scheduled for next Saturday, then his appointment to start antiretrovirals is the following Wednesday. We had some good news that his CD4 was up to around 575, which was an increase of around 200 in the last month or so. However, his viral load had more than doubled and was around 88,000. The doctor yesterday recommended starting the antiretrovirals due to his symptoms, even though his CD4 count has gone up. I agree, and I'm so worried about him as we wait to get the MRI (and possible lumbar puncture) and then begin meds. I keep thinking that the combivir is upstairs just sitting there, but he hasn't had a 3-way combination prescribed yet which is what he really needs. I'm hopeful after re-reading your post and seeing that higher CD4 counts can help keep problems from getting worse..... It sucks being a big worrier, but it sucks even more that my partner either feels "so-so" or "like crap" everyday. I pray for him every chance I get. I hope things improve for him soon.

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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Starting meds soon, can he start now? new
      #214013 - 11/07/06 05:22 PM

Its good that your partners T Cell count is that high. With a T Cell count of over 500 he doesnt even fit into the classification of having AIDS. Our friend who developed PML had a TCell count of under 100 for a very long time. I would suggest if a spinal tap or MRI doesnt show any problems then its not PML.

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6 ft tall poz bear in Philadelphia

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franfrog
Legend

Reged: 01/05/06
Posts: 1342
Loc: NJ
Re: Starting meds soon, can he start now? new
      #214077 - 11/08/06 01:51 PM

I have had some memory loss since and before I was diagnsed back in July '05. I could not understand why I could not remember things and afer my diagnosis was told that a low cd4 count was a contributing factor(52 at the time) Since I have been on meds my memory has gotten better but not back to complete functioning. I have built up my immune system and now have a cd4 of 491 and vl<50. I do notice I can forget something from one minute to the next but it seems more short term then the long term memory. Good luck.

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taurusthecat
Master

Reged: 11/02/06
Posts: 131
Loc: Melbourne, Australia
Re: Starting meds soon, can he start now? new
      #214113 - 11/09/06 05:13 AM

Fran, have you tried taking a Lecithin supplement for this? I recently looked into Lecithin because it is said to halp fat metabolism and found that it is also quite useful for helping brain function, including memory. Lecithin is a substance found in every single cell we have, in the cell membranes and is non-toxic and extremely safe. It comprises a huge part of the brain sheath. They also trialled it for helping people with Alzheimers and found some benefit, though the results were not conclusive.

It's available in all health food stores, I started taking it a while back and found my memory improved and old memories from my past started flooding back sporadically. I reckon you should try it. I"ll put a link to information about it in this post so you can have a read. As it's so safe and affordable, there's no harm in trying it for several months to see if you get any benefit from it.

All the Best, Taurus

http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/pho_0288.shtml

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I'm like fake fruit...... I don't bruise that easy.

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teacherman99
Newbie

Reged: 09/22/07
Posts: 2
Update - Atripla at 10 months new
      #231401 - 09/22/07 07:36 PM

After strong-arming one doctor with a quick switch to the one who provided a very good examination for my partner back in November, he started Atripla about a week prior to Thanksgiving '06. It was a little rough there for a couple of weeks, but things got a lot better. Even though he has asthma and has had several problems with that in past winters, the winter months passed with much better health. By the end of this past April, his viral load was very low (can't remember the number) and his CD4 count was in the upper 500's. Depression however, became a serious problem that I was not as aware of as I wish I had been. My partner attempted suicide in May, which quickly put an end to the secrecy of his condition with my parents as I told them. Luckily, he survived and we have been working on all the sources of depression. He went without his Atripla for 5 consecutive days while he was in the hospital and counseling. We immediately began Atripla as soon as he was released from counseling, and at the end of June, his viral load was considered "undetectable" and his CD4 count was over 600. We continue to monitor this situation for fear that he will develop a resistance to the treatment. He has been battling flu, walking pneumonia, and allergies since the end of July. This is still a problem here near the end of September and we just had a trip to the ER last night for severe chest pain. He has had mild fevers off and on for the last several weeks, fatigue, and swelling in his feet a few times. All tests in the ER last night showed no problems like I expected (pneumonia), all was clear, with the exception of a "little extra fluid around the heart." The ER doc said it was very little extra, but was most likely the cause of the chest pain. I'll be helping to set up a follow-up visit with my partner's regular doctor on Monday for this week. I've done some internet searches and I'm trying not to get bent out of shape over the possibility of "Pericardial Effusion". Hopefully, his viral load is still low and his t-cells high. On the stress and depression side, my partner still isn't even able to get in to see a psychiatrist until this November, which is getting closer and closer, it's just pathetic how few doctors accept Medicaid (hence the long wait). I've been trying to help him, and we've made great progress. I just want him to be able to speak with someone else in private because I know there are things he won't tell me. Luckily with my line of work, I was able to take the summer off to be with him, which helped a lot. I'm back to work now though (for about a month) and I can tell his depression has grown a little bit. I can also tell that my stress and depression levels have grown without being able to be with him all the time (I know, real world, deal with it)! Having been suicidal around 10 years ago, I've got the good sense to have gotten myself back into the gym to relieve stress and work on my own health to combat my own depression from all of this. I had not felt depressed for about 10 years, but this last year has really been difficult at times. I wanted to find a support group we could do together, but I'm hitting some resistance from my partner. Hopefully I can find something nearby to help with this. If we can get his health improved again, I think I can help us move forward again. So, that's my update almost a year later.

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taurusthecat
Master

Reged: 11/02/06
Posts: 131
Loc: Melbourne, Australia
Re: Update - Atripla at 10 months new
      #231422 - 09/23/07 05:17 PM

[quote]After strong-arming one doctor with a quick switch to the one who provided a very good examination for my partner back in November, he started Atripla about a week prior to Thanksgiving '06. It was a little rough there for a couple of weeks, but things got a lot better. Even though he has asthma and has had several problems with that in past winters, the winter months passed with much better health. By the end of this past April, his viral load was very low (can't remember the number) and his CD4 count was in the upper 500's. Depression however, became a serious problem that I was not as aware of as I wish I had been. My partner attempted suicide in May, which quickly put an end to the secrecy of his condition with my parents as I told them. Luckily, he survived and we have been working on all the sources of depression. He went without his Atripla for 5 consecutive days while he was in the hospital and counseling. We immediately began Atripla as soon as he was released from counseling, and at the end of June, his viral load was considered "undetectable" and his CD4 count was over 600. We continue to monitor this situation for fear that he will develop a resistance to the treatment. He has been battling flu, walking pneumonia, and allergies since the end of July. This is still a problem here near the end of September and we just had a trip to the ER last night for severe chest pain. He has had mild fevers off and on for the last several weeks, fatigue, and swelling in his feet a few times. All tests in the ER last night showed no problems like I expected (pneumonia), all was clear, with the exception of a "little extra fluid around the heart." The ER doc said it was very little extra, but was most likely the cause of the chest pain. I'll be helping to set up a follow-up visit with my partner's regular doctor on Monday for this week. I've done some internet searches and I'm trying not to get bent out of shape over the possibility of "Pericardial Effusion". Hopefully, his viral load is still low and his t-cells high. On the stress and depression side, my partner still isn't even able to get in to see a psychiatrist until this November, which is getting closer and closer, it's just pathetic how few doctors accept Medicaid (hence the long wait). I've been trying to help him, and we've made great progress. I just want him to be able to speak with someone else in private because I know there are things he won't tell me. Luckily with my line of work, I was able to take the summer off to be with him, which helped a lot. I'm back to work now though (for about a month) and I can tell his depression has grown a little bit. I can also tell that my stress and depression levels have grown without being able to be with him all the time (I know, real world, deal with it)! Having been suicidal around 10 years ago, I've got the good sense to have gotten myself back into the gym to relieve stress and work on my own health to combat my own depression from all of this. I had not felt depressed for about 10 years, but this last year has really been difficult at times. I wanted to find a support group we could do together, but I'm hitting some resistance from my partner. Hopefully I can find something nearby to help with this. If we can get his health improved again, I think I can help us move forward again. So, that's my update almost a year later. [/quote]

For what it's worth, I have found great success in treating my depression with an amino acid supplement called L-Tyrosine. It is a precursor to Dompamine. I was on Prozac for a couple of years and eventually found it's effectiveness was wearing off, I was getting grumpy and annoyed and down every day, so I went off them of my own volition. My grumpiness actually subsided a bit after going off the Prozac. Soon after that I came across L-Tyrosine and gave it a try. I found that for me it works quite quickly and effectively, though the benefits wear off equally quickly if I stop taking them. But when taking them daily I find my mood has evened-out and I'm not what I would call depressed, and I have the added bonus that the mind-fog caused by the Prozac isn't there either. I'm mentally clear and my moods are stable. I could be happier, on a scale of 1 - 10 in happiness I'm usually about a 4 or 5, but I'm nowhere near as sad and depressed as I was before. As L-Tyrosine is a safe supplement to take, I thought I would let you know about it just in case you or your partner might want to try it, as far as I know it's quite safe to take alongside any other drugs such as antidepressants etc, though I'd advise that you check that out first, I haven't bothered to find that out as I'm no longer on them.

Taurus

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I'm like fake fruit...... I don't bruise that easy.

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