Antiretroviral Trial

[leaves]

Hey Sue
I am sure you know about IRIS, but did your doc check you for cns infection with cryptococcus? It can cause the brain swelling and is quite common with aids patients, it get worse with arv's. Treatment is possible, as it is dangerous I'd love for you to check this out.
Xoxox

 

[Daffodil]

hi leaves. the thing is, i have had this brain thing for a long long time now. it just worsened over time. the brain thing started immediately after my acute "mono" 18 yrs ago.....i guess it can still be another infection. i will run it by my doc....thanks a lot for the suggestion

sue
xoxo

 

[grant107]

It is incredible that we have to keep waiting for someone to study treatments in this disease. Instead we have to experiment on our own with toxic drugs. Why must the researchers wait for more studies.

 

[citybug]

hi sue,
I don't have any answers, but was scared myself lately. I've had lots of vertigo this summer, new to me, then when WPI opened I had a twinge in my heart that didn't go away, and that feeling of pressure on the chest. It spread to my back. The next day my back was all out of whack. I remembered other patients have said the chest pain can be that central part of the rib cage hurting. Then I woke up a couple days later with chills and temperature then vomiting. Now I think it could have been a flu or cytokine storm making that connective stuff hurt, also glasses were hurting my head. Aren't they saying that cytokines can give you that sense of doom feeling? I was trying to figure out how to move to a nursing home when I couldn't pack anything, mind racing while had the chills. Definitely scary the whole time the chest pain was there. Still have the vertigo. Was trying each supplement to see if affected vertigo, maybe allergy drops or advil helped. What else could help cytokines?

 

[leaves]

Enhansa is a big help!! This is a very strong curcumin supplement. It is expensive but your insurance may reimburse it. It is also a potent brain inflammation reducer, antiviral and Nf kappa b inhibitor.

 

[Daffodil]

a doctor once suggested curcumin to me

 

[leaves]

Enhansa is a special form, much better absorbed and no oxalates in it. But before starting that I really would want you to ensure you don't have a bacterial or yeast infection in the brain.

 

[Daffodil]

kdp...im really sorry you arent doing well.. sounds like you are in the same boat as myself. i wish i could help...

 

[Alesh]

Eight years ago I discovered that the spice turmeric or curcuma helps me. My parents scoffed at me that I was eating large amounts of a spice. Various antidepressants are even better at inhibiting central proinflammatory cytokines and promoting antiinfalmmatory cytokines. I have to look at

http://www.neurotransmitter.net/

if there are some new drugs affecting directly the central proinflammatory cytokines.

 

[Jenny]

Thanks Alesh - I started a thread on anti-depressants and cytokines here

http://www.forums.aboutmecfs.org/showthread.php?7070-Treating-cytokine-up-down-regulation

Treating cytokine up/down-regulation
I wonder whether it's worth having a thread discussing what we know about treatments for over and under expressed cytokines, following Sunshine's very helpful post below:

.................................................. .................................................. .............................................

WPI & NCI

Type 1 IFN Pathyway Response to Viral Infection in Chronic Fatigue Syndrome

Mikovits,J. Hagen,K. Peterson,D. Stephens,R. Lombardi,V.

Whittemore Peterson Institute, Reno, NV, USA. Laboratory of Experimental Immunology, National Cancer Institute-Frederick, Frederick, MD, USA.


118 CFS patients
138 Controls

Cytokines/Chemokines:

CFS:

IL-8: 1045
MIP-1a: 763
MIP-1b: 1985
IL-6: 336
TNF-a: 148
IL-1b: 500
IP-10: 98
IFN-a: 35
IL-13: 28
IL-7 160

Controls:

IL-8: 13
MIP-1a: 91
MIP-1b: 164
IL-6: 29
TNF-a: 13
IL-1b: 56
IP-10: 32
IFN-a: 60
IL-13: 86
IL-7: 60


Guide to Chemokines/Cytokines:

IL-8: RNase L & CMV activated
MIP-1a: Elevated in neurodegenerative disease
MIP-1b: Elevated in neurodegenerative disease
IL-6: Stimulates chronic inflammation
TNF-a: Stimulates chronic inflammation
IL-1b: Stimulates chronic inflammation
IP-10: Interferon response protein
IFN-a:Stimulates macrophages and NK cells to elicit an anti viral response
IL-13: Inhibits inflammatory cytokine production
IL-7: Stimulates proliferation of B & T lymphocytes & NK cells



Summary and conclusions:

Cytokine and Chemokine profiling in combination with machine logic algorythms reveals an inflammatory signature consistent with an over-expression of herpes virus and is useful for diagnosis for CFS

.................................................. .................................................. ............................................
I think it's worth looking at studies on how depression is treated as this involves cytokine up and down regulation. There are there are quite a lot of studies on Pubmed on how anti-depressants affect cytokines. For example:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248234/

This found that sertraline lowered HDRS, and IL-12 and increased IL-4 and TgF-B1.

Others have found that anti-depressants inhibit TNF alpha and IL -1b.

I've been on sertraline for 7 weeks, starting at 12.5 mg and very slowly increasing to 50 mg a day. I've rarely felt at all depressed with this illness - in fact I'm pretty cheerful most of the time despite being bed-ridden for nearly a year with my current relapse, but I do get sudden episodes of a profoundly depressed feeling which last just a couple of minutes, particularly on waking, which are almost intolerable. They appear out of nowhere and disappear as suddenly. These have decreased over the last few weeks. Also I've hardly been able to eat anything for 6 months and lost a stone in weight (5 ft 6 in and only 8 stone) but three weeks ago my appetite returned to normal. I don't feel any better otherwise and am still bedridden, but now I've got this far with virtually no side effects I'm going to slowly increase to 100mg. (I don't actually have much optimism about this, but it's been an easy thing to try!)

Jenny

 

[Daffodil]

jenny....how do you manage not to get depressed? i am severely despondent all the time, as soon as i wake up to the moment i fall asleep.

 

[gu3vara]

Are you all by yourself at home daffodil? I know that when I was at my worst, having people around helped me a lot to feel less depressed, as soon as I was alone for a whole day I would cry.

 

[Daffodil]

gu3vara. thanks for post. no i just have my mom and my illness/depression has made her depressed too. we just stare at the wall all day and wait to die. i dont even draw the curtains anymore.

 

[Daffodil]

i know my posts are not constructive anymore. i am too down. but i post anyway cuz this board is all i have now

 

[Cloud]

Many of us can't take pharmaceutical anti-depressants, but if you can....it certainly seems a worthy venture for relieving depression and the added benefit of immune regulation. The most effective natural anti-depressant I have found is SAMe, which also has other benefits. But even that can be an issue with methylation problems. All are worth a try. I do hope you find some relief somehow Sue.

 

[Jenny]

Sue - I can't say why I'm not depressed - I do seem to be getting worse over the last few years, but I'm not as ill as you, and I'm so sorry to hear about what you are going through. You have great courage.

I feel fed up and frustrated a lot of the time, but it's not depression. I try to focus on what I have in life - particularly a lovely, supportive husband and grown up children. I'm very lucky compared to a lot of people. I'm also very glad that things are a lot easier for me now than they used to be - my first husband left me with two toddlers when I was first ill and it was so hard being a single parent with ME.

Have you thought seriously about anti-depressants? Perhaps starting with very small doses?

Jenny

 

[leaves]

Poor sweetie, sending big hugs your way

Pleasssse check out the brain infection. If you don't have that then I think Sam-e and enhansa are certainly worth a try. In addition, a carb free diet (think Atkins) helps many people too; it reduces inflammation.
There are many options to consider still so please don't give up fighting for yourself. I myself have had bad brain inflammation, feeling my head would explode, climbing up the walls, it was terrible. It is so much better now fortunately. Xoxoxo

 

[Alesh]

Hi Jenny and all,

In the past I met on the internet one man who had ME/CFS for several years and he recovered completely by taking sertraline. He didn't suffer from depressive disorder. He tried various antidepressants out of desperation, some of them also from the SSRI family but he only felt worse. And then he came accross sertraline and after about a year he reported complete recovery, return to work and sport.

I believe a subset of patients with ME/CFS can substantially benefit from some antidepressants because of the cytokine connection. But some of them may be harmful. I tried these antidepressants: Clomipramine, Amitriptyline, Fluoxetine, Citalopram, Paroxetine, Sertraline, Escitalopram, Trazodone, Mirtazapine, Bupropion, Tianeptine, Venlafaxine, Milnacipran, Selegiline. Now I am taking again a small dose of escitalopram. I have never suffered from depressive disorder.

It is strange that although my illness subjectively feels like viral or bacterial encephalopathy antidepressants help me.

 

[jenbooks]

It is strange that although my illness subjectively feels like viral or bacterial encephalopathy antidepressants help me.

Not really. There is already a pretty good literature on the fact that various psychiatric drugs are also antiviral. Drugs for schizophrenia, for instance.

 

[energyoverload]

I have now ordered a one month supply of Indinavir to take along with the AZT I have. I will keep you all posted on any progress or otherwise. I'm taking other precautions to minimize side effects. By the time the Indinavir arrives, they might have the MLV testing ready, so I may or may not wait for my test results prior to commencing. My time for change is now.

Jake.