Strong Support System

Im so lucky. I have a strong support system. It makes me feel positive all the time. It makes me feel confident about my treatment.

I have a loving partner Tag. He was there when we first heard the bad news and he is still beside me up to now. He was there when I got confined, even took time off from work. He always accompanied me to all my lab work, blood work and all consultations. He drove me to the hospital and the hub every time I needed to go. he reminds me to be careful and sometimes get mad when I am being complacent. He is my errand boy while I do everything inside the house. He is person to lean on. He makes me laugh even when we get bad news. I am so grateful for his love and affection.

Tag and I have understanding and loving families. The minute we found out that I'm a pozzie, we shared the news to them fast. They accepted it without question. Up to now they are all asking about my condition and how I am doing with my treatment. They are all supportive.

We have great friends in the hospital who make it easy for us to deal with my condition. My friend doctor always replies to my queries and suggests her doctor friends to us. One of her doctor friend doesn't even charge me whenever I have consultations with him. If we need other doctors, my friend would always refer somebody for us. Really, it's nice to have connection in the hospital, but most of all a loving and caring friend there.

I am grateful that we have good friends who know my condition. They are supportive. I have a mom-friend who always checks on me through text. She wants to be part of what I am undergoing. She makes her researches too.

A strong support system makes everything easy. Later on, when I am stable and out of danger, I want to come out and share my experience. I am still in the bottom of the well, but I know, having confidence with my treatment, soon I will come out and tell the world about my experiences. I want to show people that there is a great hope... all we have to do is to believe and be grateful to the people who love us.

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Still on First Line Regimen

I asked Dr. Ditangco if I'm still on the first line regimen and she said yes. I asked her this because it's really confusing. She added that the second line regimen is an addition of the protease inhibitor in the regimen. She mentioned that we have no third line regimen here in the country.

I researched about this from the WHO guidelines (sorry terms are maybe confusing):

"WHO continues to recommend that the first-line regimen for adults and adolescents contain two 
NRTIs plus one NNRTI. This recommendation is based on available evidence, clinical 
experience and programmatic feasibility for the wider introduction of ART in resource-limited 
settings. Regimens based on combination of two NRTIs plus one NNRTI are efficacious, 
are generally less expensive than other regimens, have generic formulations, are often available 
as FDCs and do not require a cold chain. In addition, they preserve a potent new class (protease 
inhibitors) for second-line treatments. Disadvantages include different drug half-lives which 
complicate ART stopping procedures, the fact that a single mutation is associated with resistance 
to some drugs (3TC and the NNRTIs), and cross-resistance within the NNRTI class. 
The thiacytadine analogues (3TC or FTC) are pivotal to first-line regimens. 3TC or FTC should be 
used with a companion nucleoside or nucleotide analogue, the choices here being AZT, TDF, 
ABC or d4T. 


The preferred NRTI backbone is composed of AZT or TDF combined with either 3TC or FTC. Didanosine (ddI) is an adenosine analogue NRTI recommended to be reserved for secondline regimens (see Section 10.2). Finally an NNRTI, either EFV or NVP, should be added.1
WHO recommends that countries purchase and stock a higher proportion of the preferred NRTI 
and NNRTI and a smaller amount of the drug that will be used in case of toxicity and/or 
contraindication of the first choice. This means procuring two NRTIs and two NNRTIs in addition 
to 3TC/FTC. For example, TDF can be a substitute for AZT in patients with severe AZT-induced 
anaemia, and EFV can be a substitute for NVP in cases of NVP-associated hepatotoxicity.


A triple NRTI regimen should be considered as an alternative for first-line ART in situations where 
NNRTI options provide additional complications and to preserve the PI class for second- line 
treatment  [C-I] (e.g. in women with CD4 counts of 250−350 cells/mm3; coinfection with viral 
hepatitis or tuberculosis; severe adverse reactions to NVP or EFV, infection with HIV-2). 
Recommended triple NRTI combinations are zidovudine + lamivudine + abacavir  [A-I] and 
zidovudine + lamivudine + tenofovir."


In the country, 2 of these NRTI's (Nucleoside Reverse Transcriptase Inhibitors) are part of the regimen:
     -zidovudine
     -lamivudine
     -tenofovir
     -stavudine
     -emtricitabine
     -abacavir

They are mixed with 1 of these NNRTI's (Non-Nucleoside Reverse Transcriptase Inhibitors to form the first line regimen:
     -nevirapine
     -efavirenz
     -etravirine
     -rilpivirine
     -delavirdine

So what am I taking now? I'm taking tenofovir and lamivudine (2 NRTI's) and Efavirenz (an NNRTI). I'm still on the first line regimen then!

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WHO Clinical Staging of HIV/AIDS

Dr. Ditangco wrote on my form that I'm WHO stage IV. I got interested in knowing what it meant, then found this on the net:

WHO Clinical Staging of HIV/AIDS for Adults and Adolescents

Primary HIV Infection
Asymptomatic Acute retroviral syndrome
Clinical Stage 1
Asymptomatic Persistent generalized lymphadenopathy
Clinical Stage 2
Moderate unexplained weight loss (<10% of presumed or measured body weight) Recurrent respiratory infections (sinusitis, tonsillitis, otitis media, and pharyngitis) Herpes zoster Angular cheilitis Recurrent oral ulceration Papular pruritic eruptions Seborrheic dermatitis Fungal nail infections
Clinical Stage 3
Unexplained severe weight loss (>10% of presumed or measured body weight) Unexplained chronic diarrhea for >1 month Unexplained persistent fever for >1 month (>37.6ºC, intermittent or constant) Persistent oral candidiasis (thrush) Oral hairy leukoplakia Pulmonary tuberculosis (current) Severe presumed bacterial infections (e.g., pneumonia, empyema, pyomyositis, bone or joint infection, meningitis, bacteremia) Acute necrotizing ulcerative stomatitis, gingivitis, or periodontitis Unexplained anemia (hemoglobin <8 g/dL) Neutropenia (neutrophils <500 cells/µL) Chronic thrombocytopenia (platelets <50,000 cells/µL)
Clinical Stage 4
HIV wasting syndrome, as defined by the CDC  Pneumocystis pneumonia Recurrent severe bacterial pneumonia Chronic herpes simplex infection (orolabial, genital, or anorectal site for >1 month or visceral herpes at any site) Esophageal candidiasis (or candidiasis of trachea, bronchi, or lungs) Extrapulmonary tuberculosis Kaposi sarcoma Cytomegalovirus infection (retinitis or infection of other organs) Central nervous system toxoplasmosis HIV encephalopathy Cryptococcosis, extrapulmonary (including meningitis) Disseminated nontuberculosis mycobacteria infection Progressive multifocal leukoencephalopathy Candida of the trachea, bronchi, or lungs Chronic cryptosporidiosis (with diarrhea) Chronic isosporiasis Disseminated mycosis (e.g., histoplasmosis, coccidioidomycosis, penicilliosis) Recurrent nontyphoidal Salmonella bacteremia Lymphoma (cerebral or B-cell non-Hodgkin) Invasive cervical carcinoma Atypical disseminated leishmaniasis Symptomatic HIV-associated nephropathy Symptomatic HIV-associated cardiomyopathy Reactivation of American trypanosomiasis (meningoencephalitis or myocarditis)

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Getting Fit Again

I made my fitness program. I want to be fit again. I know this will help boost up my immune system.

A. Monday:

     1. Cross trainer 30 mins

     2. Weights: Chest, Triceps, Abs
     3. T'ai Chi/Qigong

B. Tuesday:

     1. Cross Trainer 30 mins

     2. Weights: Back, Biceps, Abs
     3. Yoga

C. Wednesday:

     1. Cross Trainer 30 mins

     2. Weights: Shoulders and Traps
     3. T'ai Chi/Qigong

D. Thursday:

     1. Cross Trainer 30 mins

     2. Weights: Butt, Thighs and Calves
     3. Yoga

E. Friday:

     1. Cross Trainer 30 mins

     2. TRX

     3. Weights: Arms
     4. T'ai Chi/Qigong

At night, Tag and I can walk or run outside. Weekends are for travel or eating out...

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Dr. Ditangco, My New Doctor

She was referred to me by my doctor friend. We deserve to have the best doctor for my case because we always want educated decisions when it comes to the ARV's. We don't want doctors panicking and then make me switch fast to another medicine without even thinking that the side effects are worse for my current condition.

We met Dr. Ditangco in the hospital. She has no clinic there but she was a consultant on deck. She happened to be free at that time so she was able to meet us. I was formally introduced by my doctor friend then she talked to me alone first without Tag. Then she came out and explained that there is nothing to worry about the ALT. We were just panicking, she claimed, when in fact she has lots of patients who have high ALT's without symptoms like me. She said report fast if I see and feel any symptoms ..that's it. I asked her if she can take me in and she said yes. Yehey! One of the best HIV experts in the country is my doctor. I asked a lot of questions which she answered with confidence.

She then enrolled me to the RITM program, since she is the head of the HIV hub there. She just asked for my HIV test result and she filled out everything for me. She gave me my code name too. She made me the prescription for my meds for a 2 month supply which I have to get next week. She told me too that she will bring my meds every time I have consultations with her in her clinic so I don't have to go to RITM. That was nice of her. We felt relieved.

She told me that treatment of HIV/AIDS is comparable to treatment of diabetes now. As long as I have confidence with the medicines and I take them regularly without skipping them, I will be fine. She realistically said that it will take time, but she wants my viral load to be undetectable hopefully by 1 year. Nice, I whispered to myself. At last we have a goal to beat.

I am confident that everything will be fine from now on. Tag asked me what my plans are. I told him I want to go back to work. He said rest for 2 more months, start on January and I agreed. He likes me to take care of myself and him while I'm not working. We both agreed that since I moved to another hub, we should be grateful to all our doctors who helped us get through the process. We will visit my previous hub and Drs T and R in the hospital for all their help.

I found this article about Dr. Ditangco: First Line Forever

"First-line Forever"

IN THE PHILIPPINES, STOPPING DRUG RESISTANCE BEFORE IT STARTS

July 2010 - Approximately 950 people are on antiretroviral therapy (ART) in the Philippines, and Dr. Rossana Ditangco knows them all.

As head of the AIDS Research Group at the Research Institute for Tropical Medicine (RITM) near Manila, she may not have met them all in person but she has become familiar with key details of their lives: where and when they get their medications, what kind of support they receive from their healthcare providers, and how their immune systems are responding to treatment. This knowledge comes from an ambitious new program—inspired in part by RITM's participation in the TREAT Asia Studies to Evaluate Resistance (TASER)—to enhance treatment adherence and monitor the emergence of drug resistance in the Philippines.

Preventing drug resistance, which can lead to failure of first-line treatment, is particularly important in countries like the Philippines where access to second-line drugs is limited due to cost. Dr. Ditangco began planning the resistance monitoring program several years ago when first-line ART became more widely available in the Philippines. "Thanks to my constant interaction with other clinicians and researchers in the region, I knew that drug resistance was one of the major challenges of scaling up treatment," she explained.

Staff at RITM’s AIDS Research Group (from left): Cresset Manucat, Elizabeth Navo, Laila Grace Marquez, Rosa Lyn Bantique, Ana Inocencio, and Dr. Rossana Ditangco.

Drug resistance is not widespread in the Philippines, which is how Dr. Ditangco and her colleagues want to keep it. "Our motto is First-line Forever," she says. Among the small population of patients who are experiencing treatment failure as a result of resistance, most have been living with HIV for many years and began taking ART before the country had a systematic treatment and counseling program.

Dr. Ditangco and her colleagues spent more than two years developing the monitoring program, aided by the technical assistance they received through TASER. The program she has designed includes training for healthcare workers on treatment guidelines and adherence counseling, a physician guidebook, informational materials for patients, and standardized enrollment forms and adherence evaluation forms. It also includes a standard operating procedure for patient enrollment, monitoring, and laboratory testing, which includes regular CD4 and viral load testing, as well as resistance testing.

"TASER enabled me to bring the technology into the country, and then transfer the technology to the national program," she said. "I've also been able to interact with top scientists in the area, which is very important. In developing countries like the Philippines, we would not have access to this technology and knowledge without joining a regional group like TREAT Asia."

In addition to her role as a researcher, Dr. Ditangco is still a practicing physician, caring for patients at RITM who are enrolled in TASER and the TREAT Asia HIV Observational Database (TAHOD). "Working in the field helps me see firsthand what is going on," she explained. "Patients now are very educated when it comes to treatment. But they are still dealing with personal issues that interfere with adherence, and that's very difficult to contend with. We have to do a lot of counseling."

According to Dr. Ditangco, RITM acts as the "central nervous system" of the national treatment program, overseeing a network of treatment hubs—government hospitals that provide ART. For the monitoring program, Dr. Ditangco established a database into which HIV/AIDS clinicians across the country enter all their patients' information, and then transfer the data to RITM for analysis.

Following the first data transfer this spring, most participating clinicians are enthusiastic about the program. "They are all in agreement that we cannot allow drug resistance to develop because we may not be able to provide second-line treatment to everyone," said Dr. Ditangco.

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Body-Mind Treatment of HIV/AIDS

Sometimes called psychoneuroimmuno (PNI), these approaches are based on the concept that the mind or brain can influence the body`s ability to fight disease. Mind-body approaches such as meditation, visualization and guided imagery cannot probably help one will away HIV, but one can use any of them to make living with your condition easier, and maybe even reduce susceptibility to AIDS-related infections.

Meditation

Meditation uses deep breathing or other focusing techniques to enable a person to center his or her thoughts. Meditation may be used to reduce tension, fatigue, or anxiety and increase resistance to stress. Getting the stress out of your life may help you resist certain infections, and will enable you to handle any adversity that may come from living with HIV or AIDS.

Yoga Nidra

Yoga nidra is a hypnagogic state of psychic sleep reached by systematically inducing complete physical, mental and emotional relaxation. As in meditation, one emerges from yoga nidra feeling more rested and relaxed than after a good night`s sleep.

Visualization

Visualization is the process by which a person is directed to see himself or herself in some other physical, emotional, or spiritual state. Patients might be guided to imagine themselves in a state of vibrant health and the disease organisms as weak and destructible. Through these mental images, patients might try to direct their immune systems to fight the virus. Other mind-body techniques for people with HIV/AIDS include hypnosis, humor therapy, biofeedback training, and listening to inspirational or relaxational audiotapes.

Guided imagery 


This describes a process where you are asked to focus on images selected to help you achieve certain goals. Common applications include relaxation, relieving pain and other physical symptoms, reducing distress from surgery and other medical procedures, increasing creativity, enhancing confidence, stimulating healing responses in the body, and enhancing memory and learning.

Interactive Guided Imagery


IGI is a specific way of using imagery with particular applications in mind/body medicine. It is particularly effective in helping you to discover and improve your relationship to your health, to discover what role you can play in your recovery, and in helping you to use your resources most effectively. In this form of imagery, a trained guide helps you discover and work with your personal imagery about your illness and your healing, clarify any issues that may be involved, and learn to use your mind to support your own healing.

Other mind-body remedies such as auto-suggestion, neuro-linguistic programming (NLP), Bach Flower therapy, hypnosis, progressive muscle relaxation, laughter therapy, color therapy, DNCB (a color photography chemical that sensitizes the immune system and balances it with minimal toxicity), biofeedback, sound and music therapy, oxygen/ozone therapy, neurotherapy (a form of acupuncture) and thymus therapy—could also relieve HIV/AIDS patients. Ultimately, the power of positive thinking simply cannot be overstated in the battle against a disease that first cripples the mind before felling the body. And bear in mind what doctors say: the majority of PWAs who survived for over five years are those who made drastic changes in previously unhealthy lifestyles.

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AIDS and Exercise

I read this article about AIDS and exercise: 

by Connie B. Scanga, Ph.D.

According to the Centers for Disease Control and Prevention, more than 240,000 Americans are living with Acquired Immune Deficiency Syndrome (AIDS), a disease caused by a retrovirus, the human immunodeficiency virus (HIV).

There is a growing body of evidence that exercise training can improve mood state and quality of life for HIV+ individuals, and there is widespread belief among the HIV community that exercise training will make them stronger, improve their endurance and protect them from infection.

The symptoms of HIV infection vary during the course of the disease. In the first few months following infection with the virus, many people notice mononucleosis-like symptoms. After that time, the disease enters a symptom-free stage that may last up to 10 to 15 years. Eventually, as the infection takes its toll on the immune system, patients begin to experience night sweats and fevers, swollen glands, anorexia and digestive complaints, widespread musculoskeletal aches and pains, and fatigue.

This collection of symptoms is referred to as AIDS-related complex (ARC). AIDS, the most advanced stage of the disease, is diagnosed in HIV infected people when CD4+ cell counts become very low and opportunistic infections or cancers occur.

Introducing exercise

HIV infection can lead to loss of muscle strength and reduced aerobic capacity. Deconditioning often becomes more severe as the disease progresses. An appropriate program of exercise can improve exercise capacity in infected people, and prevent or delay the downward spiral of deconditioning.

Unfortunately, there is no evidence that exercise directly stimulates immune function or slows the onset of AIDS in HIV-infected people. However, regular exercise does have psychological benefits and can enhance the overall quality of life for HIV+ people.

Starting an exercise program

Persons living with AIDS should consult their physician before beginning an exercise program or increasing their level of physical activity. A physician can offer advice on HIV-related medical conditions and side effects of medications that might affect one's ability to exercise.

An appropriate exercise program includes three basic components: aerobic exercise, strength training and stretching activities to improve flexibility. In the early weeks of exercise training, sticking to light or moderate-intensity activity will improve physical conditioning without harming immune function.

A plan might include exercising three to four times per week on alternate days and can include 20 to 30 minutes of aerobic activity, such as outdoor or treadmill walking, cycling, group sports or aerobics classes. The resistance phase of the exercise session should include eight to 10 exercises that train major muscle groups.

Initially, one set of 12 to 15 repetitions of each strengthening exercise will be a good start. A good routine should begin with a warm up and end with a cool down that includes light-intensity activity and stretching.

If the infected person has a fever or is experiencing a secondary infection, they should decrease the level of activity or take time off altogether from exercise training. They can try to get back into their regular exercise program as soon as they are feeling better.

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My ALT is not Cooperating!

We decided to get the blood tests yesterday in preparation for my consultation in my hub. We wanted to get my next month’s supply of my meds because the long holidays are coming next week and it maybe hard for me to schedule an appointment. Also, I can show the results of these lab exams to Dr.T when she comes back on Thursday. Good thing, on Sundays, there were no more lines in the hospital so in just 15 minutes I’m done.

Early today, we decided to get the results. Shocking was my ALT. It was 328! This is more that 5X increase from the normal level. Tag and I freaked out and called our doctor friend and asked if we need to see my GI doctor. She said I have to see him ASAP. I then scheduled for an appointment. Dr.T is still in Boston so my doctor friend orchestrated everything. She contacted another ID that I can see today too for an opinion. I guess this is an emergency move.

We saw Dr. R in his clinic and showed him the result of my blood work. I made him a table with all the data of my previous and present blood tests for easy comparison. I also gave him some literature on the three medicines that I am taking. He said the efavirenz is causing the increase! He recommended that I should stop taking the meds and he wants to know from my ID if it will be continued or not. Else, he wants another set of blood work after a week. He said to give him an update that day. 

He then checked me physically and palpated my liver. He said everything is normal. I have a good appetite and I am gaining weight which made him more happy. He said I have good skin color (not yellowish) and that my eyes are normal. Overall, I am still healthy despite my ALT being high.Whew. We left his clinic and I wasn’t even charged. My friend doctor is friends with him that’s why. Before we left, the secretary told us that our friend doctor had arranged for an appointment with another ID doctor in the afternoon. Leaving the hospital, we decided to eat in Bubba Gump Shrimp in G3, Makati. After lunch, we decided to go back to to the hospital so we can be there early. Tag dropped me at the condo for me to get my iPad since we will be waiting for 2 hours for my scheduled appointment.

We came back to the hospital and went to Dr. Saniel’s office. She is a “pillar” to the ID Society and was the Chairman of the UP-PGH IDS where SAGIP is. While I was signing her patient form, Dr. Saniel came out and told us that she is very busy that afternoon but she can accommodate us at that time. Wow. Nice to have doctor friends in the hospital! She then evaluated me and said that she would talk to her fellows about my medicines but definitely, the efavirenz is the culprit. She told me that she would call me by the following day but I should skip the efavirenz that night. She assured me that one night is ok to skip. It got me worried. 

We then came home and after two hours, Dr. Saniel said that SAGIP knows my situation already and my doctor there will change my meds the following morning and to stop taking the efavirenz. 

The following day, Tag and I went to SAGIP and met Dr. R. She explained to me the new medicine and that is already the second line. OMG. I just smiled of course, but inside I’m already worried. I was given Lopinavir and Ritonavir tablets. Upon reading the literature, these meds are protease inhibitors, really the second line. Once I start taking them, I can’t go back anymore to the 2nd line.

I then asked my friend doctor for her opinion. She said come back to the hospital and get another ALT test and we will decide from there. Back in the hospital, after blood was drawn from me, we decided to go and see Dr. R, GI for his opinion. My new ALT was 311. Still high. Upon reading the literature of my new meds, he said that the meds that SAGIP gave me was even worse for my liver and should not be given to patients with already high ALT! Talking to him like a friend, I said I have a deadline to make because I already skipped my efavirenz the other night so I have to decide if I’m going back to efavirenz or take my new meds. I told him that while waiting for a “real” decision, I might as well stick first to efavirenz. Dr. R agreed with me and said we will do a close monitoring of my ALT, to take it again after 2 days.

We were kinda worried but since this was a bad day, we decided to celebrate. We had an early dinner in Texas Roadhouse and just forgot about my condition. At home, my doctor friend texted me and said she was able to talk to Dr. Ditangco who sees patients also in the hospital. She is really the HIV expert and is the Head of the HIV department in RITM. Dr. Ditangco advised my doctor friend that I should stick to my original meds and will see me after two days in the hospital. My doctor friend said she will accompany and introduce us to Dr. Ditangco personally.

For now, I am back to efavirenz. I don’t know what will happen tomorrow with my check up with Dr. Ditangco or how will my ALT test go. What I know is I’m still positive about this despite of all the struggles me and Tag are experiencing now. 

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UP-PGH SAGIP: The Lab Fees

I went to UP-PGH SAGIP yesterday to get my meds. I usually see my doctor there whenever Dr. T wants me to pick up my meds. SAGIP is located on the second floor, right on top of the Emergency Ward. Facing the PGH Building from Taft, just stay on your left side and look for the emergency ward. On the right side of the ward is a door . Just look for the stairs and come up. SAGIP is on the right side. The second floor is the Infectious Disease Section of the hospital too and it's not hard to find. The hallway outside is clean and there is a bench outside and one will see some patients come in and out of the room. The SAGIP office is a small, airconditioned room with only 2 cubicles for patient assessment.

Nina, the nurse/secretary was friendly and always smiling. She is very accommodating. I, being "adopted" by SAGIP for only my medicines, I really don't know the policies there or how patients are really being treated. But worrying about the financial burden of a lot of pozzies with regards to the lab exams to be undertaken, I began to interview Nina.

She said that there are 3 classes of paying scheme in PGH. First, the out-pay which covers the actual price of the lab exams. The second is the Class B, wherein patients secure a blue card so they can get discounts from the lab exams. Third is the Class D which the patient secures a white card and needs to be interviewed by the social worker. The white card holder usually gives the patient free lab work fees. SAGIP services including doctor consultations and ARV's are all for free. Great, right?

Nina said for most of their patients, they ask them to get a blue card so they have discounts. She then told me the actual prices for the lab exams and tests:

A. HIV Test:
     1. Walk in : P295
     2. Blue Card : P185
     3. White Card : P150

B. If HIV Positive and Asymptomatic (no symptoms of illness), these are the REQUIRED lab tests/blood work for baseline information. These prices are under the Blue card Class:

     1. Sputum ASB Smear - P30 (if they want cultured, it's P165)
     2. Chest Xray- P110
     3. Hepa Profile: P1,075
     4. CBC - P50
     5. Creatinine- P30
     6. AST/ALT - P40 each
     7. Lipid Profile: P170
     8. RPR: P65
     9. Toxo IGG: P390

Total amount for these lab tests is P2,000

C. CD4 Count Test is free for baseline in SAGIP, but succeeding CD4 tests are not free anymore. SAGIP sends their patients to get their CD4 counts every 3 or 6 months regularly to:

     1. San Lazaro Hospital : P2,000
     2. RITM in Alabang : P3,000

   *** It is imperative to regularly check the CD4 once diagnosed with HIV because even though the patient is asymptomatic, the virus inside is active and can lower the immune system without any warning at all. The CD4 will tell when the patient will have to undergo treatment already, when to take the ARV's to prevent the CD4 from falling down fast.

D. Not included here are the symptomatic HIV cases because the doctors will then dictate what other lab exams have to be undertaken.

The problem with a lot of pozzies is financial support. Most, have not even told their families yet about their condition so the burden goes only to them. It is really hard but one has to really pay attention to his/her condition as soon as he/she becomes a pozzie. But if one doesn't do what the doctors tell them to do, if one doesn't have regular check ups every 3 months after he/she was diagnosed, it would be more burdensome financially, if his/her condition already progresses to AIDS.

HIV is a silent virus. Don't allow your CD4 counts to go below 200 because there will be a greater possibility that the symptoms of your weak immune system will show sooner than you think.



For inquiries call:
UP-PGH SAGIP
Tel No. 5548400 loc 3249
Look for Nina

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Monitor CD4 Once You're A Pozzie!

I told a new blog friend of mine that there were instances wherein I found blogs of pozzies with high CD4 counts when they got diagnosed, then after a year, their CD4 counts are less than 200 already. Some had 300+ then after 5 months , a sudden drop to 100+. Sad, I know but we all should learn from this. HIV is a killer virus. So we should never neglect it even we feel healthy and not at all sick. I read this article from the net:

"HIV disease is a continuum of progressive damage to the immune system from the time of infection to the manifestation of severe immunologic damage by opportunistic infections (OI), neoplasms, wasting, or low CD4 lymphocyte count that define AIDS. The time it takes to traverse this spectrum varies greatly, ranging from 1 year or less in some persons to a still unknown upper limit in others that has reached nearly 20 years in a few individuals. The period from infection to development of AIDS is known as the incubation period. The period from an AIDS diagnosis to death has been studied separately as AIDS survival time. "


What is progressive? Progressive here simply means that HIV can lead to AIDS if left unmonitored!


"The length of the AIDS incubation period means that laboratory tests to identify persons at high risk of disease progression are needed to guide clinical decisions in asymptomatic seropositive persons, such as when to begin antiviral therapy and prophylaxis against OI. Because depletion of CD4+ T lymphocytes is the hallmark and the apparent source of the central immune defect of HIV disease, determination of the CD4 lymphocyte count (or percentage) has been the most important laboratory marker of disease progression. Absolute CD4 lymphocyte count or percentage correlates strongly with AIDS-defining disease, has been included in the surveillance case definition of AIDS since 1993, and has been used to set indications for therapy."


So what does this mean? It means that since we know that HIV is a progressive disease, a pozzie should be on surveillance mode from the time he was diagnosed. He should get his CD4 fast and have it checked regularly (usually every 3 or 6 months). Don't wait too long to have it checked because you'll never know it's rate of progression. To some it's slow but to some it's fast. 


Don't wait. Act now! If you're a pozzie, monitor your CD4 regularly. I'm not here to scare you but you have to take HIV seriously! It is your responsibility to yourself and to your loved ones. Always remember that you have a virus multiplying inside you and the best way to protect yourself is knowing when to get your medications before the OI's attack you. 

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What is Oral Thrush?

Since I was diagnosed, I had this white film on my tongue. There was one instance that my tongue became painful that Dr.T had to prescribe an antifungal pill.

So what is it really? Well I found this article on the net:

"Oral candidiasis (kan-dih-DEYE-uh-suhss), or thrush, is a type of fungal infection inside the mouth. Thrush causes swelling and a thick white coating on your mouth, tongue, throat, and esophagus (The infection is only called oral candidiasis if it appears in your mouth.) Thrush happens when candida,
a fungus that is normally found in the body, grows too much in these areas. It also can overgrow in your vagina. This is called a vaginal yeast infection. Thrush is common in people living with HIV and can be hard to get rid of. Thrush is partly diagnosed by how your mouth looks. A doctor might also take a scraping of the white patches in your mouth that will appear with an infection. Thrush is usually first treated with prescription lozenges and mouth rinses. If this doesn't work or the thrush keeps coming back, antifungal drugs are used. If thrush is not treated, symptoms will last. In very rare cases, untreated thrush may enter the bloodstream and spread throughout the body."


Today, my tongue is pinkish, looking healthy for the first time after a long time. It seems that my daily regimen of cleaning my mouth is helping me to get rid of it, at least temporarily.


1. I brush regularly 3-4x a day usually after meals.
2. I gargle with listerine after brushing or in between brushings
3. I eat yogurt which helps the build up of probiotics 

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DT. T's Convention

My attending physician, Dr. T left for Boston on my second rash day. It's the Infectious Disease Society of America (IDSA) 49th Annual Meeting. I am proud that she is attending. Wish she will learn a lot there about HIV/AIDS which she can apply here. I know practice in the US is different than here, but still if there are breakthroughs in practice and the medicines, surely those can help. Good luck Dr. T. Bring home the bacon!

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Being Domesticated

For 3 years I stayed at home while Tag worked. I was domesticated, like they said. When I started working, my career flourished. For 4 years, we worked on our finances, paid off debts and established our emergency fund. We travelled a lot, ate a lot, joined a lot of fitness runs. It felt good to bring home money, you can do a lot of things.

Now, after I got confined, we are more careful. We decided that while my CD4 is low, I should just stay home. Well, there are other opportunities related to my career online, so why not. But, having no maid around this time, I became domesticated again. Lots of things to do at home, again! To distract me, I started cooking again. I like cooking for Tag. He likes to be pampered. He deserves that, after all he is really taking care of me.

Sooner or later, I will work again. I miss my job. People are asking about me and I miss them all. A celebrity just called me minutes ago asking me to join her in yoga. I wanted to but I declined. Maybe next time.

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Bye Bye

My rashes are almost gone now. Yehey! Good thing they reacted to the antihistamine or else I will need to switch to another line of medications.

Good thing Dr. T changed the schedule that was given to me by the resident doctor in the hub. Instead of taking them all at one time, Dr. T gave me 3 schedules. One medicine in the morning, one in the afternoon and one in the evening. In this way we can pinpoint fast which ARV is the culprit in case there will be side effects. For 2 weeks now, this has been my schedule:

                - 6am: Bactrim (my daily anti PCP)
                - 7am: Tenofovir
                -12 noon: Lamivudine
                -10pm: Efavirenz

So what was the cause of my rashes? Most probably the efavirenz because an hour after I took it I felt itchy already on the back of my things. Analyzing that day too, I started my vitamin intake but it was closer to Tenofovir in the morning. Hmmm ... It can't be my Bactrim because never have I had any reaction to it.

Well, the antihistamine worked. In 3 days, my rashes are almost gone. I stopped the vitamins until I get the go signal from Dr. T or once I reschedule my ARV's. Actually I wanted to take them all at the same time in the evening, or just one intake in the morning like tenofovir and lamivudine then just the efavirenz in the evening.

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My Doctors

I have seven doctors so far who are on the lookout for my condition. My attending physician is Dr.T, an infectious disease consultant. From the hub I have 1 infectious disease consultant and Dr. R., the resident physician. I have my friend, B., my nephrologist who monitors my creatinine. I have my pulmo doctor Dr. T. who is ready in case I have recurrence of my lung problems. I have Dr. N, my gastro intestinal doctor who monitors my liver. Today I'll be seeing Dr. M, my immuno allergologist who will monitor my body's reaction to the medicines. I guess I'm fully equipped!

So who really is the best doctor for HIV/AIDS? First and foremost your attending physician should be an infectious disease consultant who has a vast knowledge about your condition. This "head doctor" usually consults with other "head doctors" so he or she can give you the best treatment possible. Your head doctor will dictate who you will consult with when problems arise. He or she will dictate what lab exams or blood tests to take. Basically he or she is your overall coordinator of your entire team. Your head doctor will also coordinate with your hubs for the medicines.

If you would go to the hubs, an infectious disease resident doctor will be your head doctor. But don't worry, they are really monitored by the consultants of the hubs regularly. 

Still I don't know who is the best doctor in this area. But right now, I feel the love and concern of all my caregivers!

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A Letter from My Brother

I wanna share a letter from my brother from California. From my first blog, I said that the minute we found out I was positive, we told our families about it to lessen our burden. I am sharing this because this may help other pozzies out there. So here it goes:

XXX,

I was traveling the last 2 weekends so I was not able to follow up on you. Sorry about that.
I hope you are feeling much better now.

Here's a response from XXX about one person's medical condition:

"It is a law and mandatory in our Order if we are sick to consult a licensed physician
and follow his advice. So please do it first. Concerning your tumour, try to stop worrying,
and concerning practices for healing, just do the negative aspect or the second part of
pentagram and try to reach 30 minutes per day. Also, try to practice radiation, J-VPL-K for
5 minutes, two times a day. Concerning porebreathing, it must be done 2x a day but if
you’re having a hard time doing it, even just once a day will do until you can do it twice daily."
You know you will not die from HIV, but it is the breakdown of the immune system that will be your
demise.There are 3 to 4 things you must do, aside from medication, which will help, but will also eventually fail, you just don't know when.

There are 3 simple techniques you can use to help you regenerate your immune system:

1. 30 minutes of negative pentagram, one or preferably 2x a day. The way to do this is to stand up straight
with both feet together. Then with both hands clasped together and stretched straight up above your head.
Stay in this stance for 30 minutes. You can watch TV while doing this - but it has to be continuous. If you
stop anytime, you have to restart over to complete your 30 minutes.

2. 5 minutes of radiation, 2x a day. Sit & relax. Close your eyes. Focus on your heart, imagine a white
ball of light around your heart. Then feel the following in your heart 15 to 30 seconds at a time: Joy, Vitality,Vigor, Peace, Prosperity, Life, Love, Kindness. Then expand this light to cover your body, then your room, then expend it to cover the city, the country, the earth, the universe. Then stop your visualizing & for a minute just go back to your heart and feel it beating. And you are done.

3. Pore breathing. 1 or 2x a day. This is the most difficult to do, since it takes time and focus. Sit and relax.
Breathe in & hold for as long as comfortable. Focus your attention on your left foot. Exhale normally, thn
breathe in again & focus your attention on your right foot. Do the same for each part of your body until you get to the top of your head.

Last thing is prayer! Pray everyday my brother. You are God's son. If you think you have sinned, just ask
for forgiveness, we are still mortals and prone to mistakes. Be charitable, do not hurt anybody. You will be
fine and will have a long happy life.

Regards,
XXX   

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Pay It Forward

I am just a luck guy. Well, that is, we are financially ok. Tag and I worked hard before that we have an emergency fund in the bank so in case of emergency we have money to spend. Good thing, Tag was so smart about money matters. I believe that our doctors are happy about us getting all lab exams and blood work when they are needed. We even have my CD4 tests done every month and my Viral Load every 3 months. Tag and I just want me to be well, soon.

I dreamt about a plan that I have been thinking of for the past weeks since I was diagnosed. How can we pay forward? I am one lucky guy, having Tag with me by my side. How about other people? When I researched about HIV/AIDS, there are almost all programs of prevention and counseling. How about helping people on their treatment? I believe that this virus is very costly, with all the lab exams and blood work, with the CD4 tests and viral load. However, even with the public hubs, still one needs to spend money. How can people afford it. All HIV pozzies' CD4 counts will go down sooner or later and it seems like only a few are monitoring theirs. Is it all because of financials or just negligence? Out of 7,235 cases of pozzies, 884 are already AIDS. Every pozzie should act now.

Pay it forward, I told Tag. When I get stable, let's help others get what they need. We can pay for their lab and blood work fees or even CD4 and viral load tests. Once I'm better, we can start telling friends to do the same. I know some generous friends who are more than willing, because while we have the medicines for free for now, we can at least help people deal with their treatment. But I'm not ready yet. I want to fight this every step that I can so people will know all the struggles that I went through later on. It's easier to convince people if you already have the experience. Fighting is easy when you have the resources. We all know that.

What I need to know now is how each hub operates, what are their freebies and requirements to avail of them. Blogs are confusing. Better to really ask the hub doctors and management themselves.

I wish to get my CD4 up fast, that is my goal. Once I get out of this dark hole, I can work again. Then we  we will start paying it forward!

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"Rash Boy"

I don't want to post pictures of my rashes here because they might be scary to some people, but I can just describe them. They look like prickly heat at first, then when they merge and multiple, they become one flat redness. First they appeared on my upper chest back of head and upper shoulders, on the first day. Second day, they are everywhere including face, back and legs. I am kinda used to rashes before especially when I apply astringent on face, thus the name "rash boy" coined by Tag every time I have rashes.

Yesterday afternoon, my rashes seemed to disappear on my chest , shoulders and back of head, the first body parts where my rashes appeared. They were less itchy too. When Tag came home from work, instead of having pity on me, he laughed at me especially while looking at my face. He called me Rash Boy again. I smirked at first but we ended up laughing. He kept on insisting that I looked depressed, trying to affirm one side of effect of Efavirenz, which is depression. I kept on laughing, because I was not depressed at all. When I rolled to one side of the bed he embraced me but I told him to stop it because it made my arm itchy upon contact. He laughed again. Oh really, laughter makes everything so easy to handle!

We ordered pizza for our afternoon meal and dinner. Tag follows the 6pm cut off for me, well sometimes, hehe. I don't take anything starting at 6pm in preparation for my 10pm Efavirenz. It should be taken on an empty stomach. In the afternoon I texted Dr.T to remind her of the doctor who I will contact in case there is a problem since she is attending a conference in Boston for one week. After a few minutes she said DR. M will see me at 5pm tomorrow (today). She is an immuno allegologist. I like it. New specialization. She knows better when it comes to these allergic reactions.

In the evening, more improvement on my rashes. Chest, abdomen, shoulders, face and back of head were clearing up. Rashes on back and legs were more pronounced though.

This morning when I woke up, my chest, shoulders, arms, face and back are almost clear of rashes. My rashes on my legs. This is the third day of having these rashes and 3rd day of taking my antihistamines.

So in case you have rashes from your ARV's, these are the things that you can do:

1. IMPORTANT: Call and have an appointment with your doctor fast. Your doctor can prescribe an antinhistamine for you.
2. Take your antihistamine as prescribed by your doctor
3. Drink LOTS of water to remove your toxins. Yesterday, I drank water every 30 minutes usually after I pee.
4. Avoid scratching your rashes. I wore light cotton long sleeves so I wont have the urge to scratch them or when I take a nap, they wont run on the sheets
5. Apply prickly heat powder or calamine lotion. I used Fissan powder and Caladryl when I felt itchiness.
6. Take a lukewarm shower. I alternated wam and cold water though.  
7. Don't panic. Smile and stay positive!

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Spreading Like Wild Fire!

My rashes didn't go away overnight even after taking my antihistamines. Instead, when I woke up this morning they were all over my body now, even my face. Whoa! Tag was so positive today before he went to work saying everything will be fine. I am glad. Well, it's the itchiness that's bothersome though. It would have been fine if it's just rashes. Oh well.

There are many conflicting articles about the rashes. Some literature says that rashes will just go away, some said they don't unless you stop the ARV causing it. Some said observe the symptoms fist and some said discontinue the ARV causing it and switch to another one which is from the different class. I said wait first and observe. Well, that was what Dr.T said too.

It is just my second day with rashes. Dr.T said usually it will take like 5 days to disappear with antihistamine. Really, wish they will disappear fast. I don't want to switch to the protease inhibitors that have a high risk for heart problems.

Everything is part of this one big fight. I just have to endure this.... and smile. Rashes can't put me down!

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On Antihistamine Now

Early morning today, while in bed, I started to feel itchy on my head. This caused me to wake up at least 3 times. When I woke up, I saw rashes on my shoulders and chest. Wow. Perfect timing cuz today is my check up with Dr.T. Tag was quite happy because he feels that the medicines are working inside of me even though they are just rashes. Well, not to me. I would rather have no adverse effects at all. What I felt early this morning was my body was hot, like I didn't feel that the aircon was on.

When Dr. T saw me in the hospital. After thorough evaluation, she said everything was ok with me. All my vital organs are in good condition. She saw my rashes and she prescribed me 2 antihistamine medicines. I have to observe my rashes because if they wont go away, we will have to switch ARV's. No way, I thought. I might as well stick to these medicines if possible. I said to myself, tomorrow they will be gone. Watch me. The power of the mind. 

We bought the medicines when we left the hospital and I took one fast. The Xyzal 5mg. Dr.T said it will make my rashes subside fast, hopefully. Well I know how to treat rashes in the past so I bought too some prickly heat powder and 2 bottles of calamine lotion. Might as well do everything. 

I have 10 days to get rid of these rashes, well before I see Dr. T again. The sooner the better. I have to careful with myself again cause like what Dr.T said, I'm under observation. What I know is yesterday, me and Tag ate a lot. We ate at Subway, had DQ ice cream, ate at Hooters, ate lots of chocolates. I also took my vitamins again (multivitamins, vit c, e and fish oil). Those were the only different things that I did. Maybe I didn't drink a lot of water yesterday because it was really hot outside.

From what I know the rashes are generally temporary. I just have to endure it until it goes away, which I know will!

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Why Am I Writing?

I’ve been searching for solace in most blogs. I wanna feel what others are feeling. However, most of the blogs are those of HIV pozzies and less of the full blowns like me. Sometimes it’s hard to identify myself because basically, we are on the different end of the spectrum. Especially me who really is on the deep end of the tunnel with my low CD4 and with my experience with an OI.

So why am I writing? Simple. To reach out to people who are still afraid like me. Who are still scared about treatment, of the stigma, of facing families and friends, of being weak and emotionally unprepared for the big battle, of what the future entails us. I wanna share my personal experiences and my knowledge, bit by bit, because maybe we have common experiences. 

Still I have lots of questions. But like what I wrote before, we need to ask our doctors and surf the net. We have to be knowledgeable and by doing so, we will know our potentials, we will know how to deal with the virus, we will know what to expect in the treatment, and we will know that there is hope.

Everything will be ok, soon. We just have to keep the faith. And while waiting for the magic cure, we have to stay healthy. We have to focus on ourselves, on being strong both physically and emotionally. No need to look back. Instead, we have to face our future, may it be hard or easy but at the end, remember we are up for a good fight till the end!

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I Had Low Grade Fever

I talked too soon. Today, I felt chills all over my body after I was doing my abdominal exercises. I abruptly stopped and just sat down and did my usual routine of surfing the net. After a few minutes, I felt that I had fever. I wasn't wearing a shirt then so I donned on my sweatshirt fast and laid down. I took my temperature and it was 37.8. Fever! Shit. I thought about the things that I did today. Usually I have brief moments of chills every now and then, but today was different. I had fever! It was impossible that I caught something in the lab of the hospital when they drew blood from me because I was wearing a mask then and I know I was really careful.

I wanted to text my doctor but I thought I don't want to panic her or Tag. So I did my conventional treatment of fever which was the blanket warmer. I hid inside the blanket with no fan or aircon on and stayed there until I felt better. After 30 minutes and I was already sweating in my hands and my temperature went down to 37.4. Yehey! It worked.

I researched about this and I found out that prolonged fever is a sign of infection. Also, I have to remind myself that I have a virus inside me that I may have symptoms like this every now and then. Good thing my fever was very brief! Still will ask Dr. T on Monday about it. But for now, time for my early afternoon snack. Krispy Kreme!

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My 1st Week of Treatment

I finished my first week of treatment. Yehey! No side effects so far. Good. I don't feel anything at all. I just wish my liver and kidneys will cooperate too. I don't want a decrease of dosage or change of medicines. I am fine with what I am taking right now.

I had my blood work done again early this morning. My GI doctor and ID doctor as well as the doctor in the hub where I got my medicines require it before I seek consultation on Monday. These were the following:

1. CBC with platelet count
2. ALT
3. Creatinine
4. AST
5. ALP
6. Bilirubin
7. Prothrombin time

I am so used to these drawing of blood now. There are 2 separate occasions that I got bruised by them, so I always tell the nurses to be careful. Unfortunately, I have to tell the nurses to wear gloves when they are drawing blood from me.

I just updated my iPhone and Ipad to IOS 5. I like it especially the reminder app cuz sometimes I get paranoid if already took my meds or not. Now I can check them out when I am done.

I started my vitamins again. I wish they will help work wonders on me.

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Understanding the Test Result

When I was in the hospital last September 2011, while I was so sick with cough and fever, I was told that we need to get my CD4 count. After 2 days, Dr. T said that my count was 73. We got worried even though we didn’t fully understand what that really meant. 

A month later, I got my 2nd CD4 count. It was 70. How come it didn’t go up now that I don’t feel anything. I didn’t get it until I was researching about medicines in american websites. I wondered why americans would always put their results of CD4, CD4 % and viral load in message boards. I checked my CD4 result last September and it showed 6% under CD4%. Unfortunately, the nurse from RITM can’t read to me the result of the 2nd CD4% so I don’t know if my immune system really improved or not. After reading more I found out their real importance.

What are Lymphocytes?

Lymphocytes are a type of white blood cell that helps the body fight infection. There are two main types of lymphocytes; B-lymphocytes and T-lymphocytes. Let's focus on T-lymphocytes, also know as T-cells. There are two types of T-cells:

          CD4 Cells - These cells have molecules called CD4 on their surface. They start the immune response that protects the body from infectious invaders such as bacteria and viruses.

          CD8 Cells - These cells, with molecules on their surface called CD8, destroy other infected cells and produce antiviral substances that fight off infectious organisms.

What is the absolute CD4 count?

The absolute CD4 count is a measurement of how many functional CD4 T-cells are circulating in the blood. The lower the absolute CD4 count, the weaker the immune system. The absolute CD4 count is measured by a simple blood test and is reported as the number of CD4 cells per cubic millimeter of blood. HIV-negative people typically have absolute CD4 counts between 600 and 1200 CD4 cells per cubic millimeter. HIV-infected people have counts that are typically less than 500, and people with AIDS can have 200 CD4 cells per cubic millimeter or fewer.

What is the CD4 Percentage?

CD4 percentage represents the percentage of total lymphocytes that are CD4 cells. The CD4 percentage is measured using the same blood test as the absolute CD4 count. Typically, HIV-negative people will have a CD4 percentage of about 40 percent, while HIV-infected people's CD4 percentage can be as low as 25 percent or less. To better understand the concept of CD4 percentage and absolute CD4, let's look at an example.

Say your lymphocytes are 10 apples in a basket. There are two types of apples in the basket; red ones, which represent CD4 cells, and green ones that represent CD8 cells. If five apples are red and five are green, then the CD4 percentage is 50 percent.

Why is it Important to Know the CD4 Count and CD4 Percentage

The CD4 count and CD4 percentage give your doctor a snapshot of the health of your immune system. The immune system needs CD4 cells to function properly. The more CD4 cells in circulation, the stronger the immune system. By knowing the absolute CD4 count, your doctor has an idea of the strength of your immune system.

As early as 1988, infectious disease specialists determined that an absolute CD4 cell count of less than 200 cells per cubic millimeter placed the person at risk for opportunistic infections. In addition to measuring the strength of the immune system, the absolute CD4 count in part determines treatment needs for the patient. If the absolute CD4 count falls below 200, the doctor knows the patient is at risk for opportunistic infections; the doctor may prescribe protective antibiotics for the patient. If the absolute CD4 count rises after starting a new treatment regimen, the doctor knows the medications are effective.

The CD4 percentage provides another clue to the health of the immune system. Because the CD4 percentage takes in consideration the total number of lymphocytes present, many feel the CD4 percentage is a more reliable indicator of immune system health. Let's again take our basket of apples example. Remember, our basket of 10 apples had an absolute CD4 count of five and a CD4 percentage of 50 percent. Say the basket now has 25 apples, five red and 20 green. The absolute CD4 count is the same - five. However, the CD4 percentage in the second example is only 20 percent (five apples out of 25 are red), indicating a much weaker immune system.

CD4 percentage takes in consideration factors which could cause a false high or false low CD4 count. If the absolute CD4 count is higher only because the total lymphocyte count is higher that does not indicate the immune system is stronger, only that there are more lymphocytes contributing to the absolute CD4 count. In our example, the absolute CD4 count of five didn’t mean as much in the basket of 25 apples as it did in the basket of 10. The count was five only because there were more apples.

There is some debate as to which measurement is a better predictor of opportunistic infection risk. In some situations, CD4 percentage seems to be as good a predictor as absolute CD4 counts. A recent study by D.M. Moore and his colleagues, published in HIV Medicine in September 2006, showed that in the case of people with no HIV treatment experience, absolute CD4 count and CD4 percentage both could predict HIV progression. However, the same study found that when the CD4 percentage is less than 15 percent, CD4 percentage should be considered along with the absolute CD4 count when determining illness risk and when to start HIV treatment. Finally, a study due out in the February issue of Journal of Infectious Diseases suggests CD4 percentage is a better predictor of disease progression.

So next time you talk to your doctor ask also about the CD4 %. It’s best that we are all knowledgeable about this.

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