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Certain HIV positive, but negative tests (Page 119)

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March 31st, 2015
Thanks jammy, i will go for those tests. I hope it is nothing really serious.
thanks rider, your right, i will keep my chin up and keep trying to find out whats happening in my body; its funny you mentioned about your Harley, last year i purchased a really cheap yamaha sr250 from 89 i think, i was planning on turn it into a brat style or bobber but right now is in the garage getting rust and dust but im gonna start working on it, i have a low budget and don't have all the tools needed but that doesn't mean i can't start giving it some shape (=
I think i don't have any swollen lymph node at least not noticeable but in deed have some stiffness in neck from time to time, is not like when you do to many crunches or when you sleep in a bad possition is more like having something stucked inside but not really painful just a little unconfortable.
Thanks for your words guys im gonna keep you updated from my progress.
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Users who thank Paparanoid for this post: jammy88 

replied March 31st, 2015
Experienced User
jammy I was reading late last nite on your mole situation, they say normally people have 10-40 moles on there body I know some folks esp red headed people who have more then that on average, all you can do is watch your situation closely an if a mole changes get in to your doctor,paparanoid if you have experience riding I would just do whats needed to get bike in safe working order for now an get out there an enjoy the ride an weather, sunshine is a good source of vit d, an forget your problems at least for awhile,it works well for me,if you are 8 month post exposure an have not had lymph node swelling that's a great sign,mine nodes swelled at 6 months post exposure, an now they have general swelling,can be swollen during day an then not at nite for instance, your still occasional neck may be stress from this whole experience read all the symptoms of stress its very similar to those of hiv, as well as candida infections,which you can catch from someone as well likewise parasite infections now all these can be underlying infections caused by something else as well or not? this is why its so hard to determine what one has theres many viruses, bacterial,fungal infections etc,but to not have any swollen lymph nodes after 8 months is a very good thing.
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replied April 9th, 2015
Extremely eHealthy
All of our moles are going to grow, since we are all being immunosuppressed by the virus. The best thing we can do is have the moles removed, since they are just reminders that we are getting sicker.
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replied April 10th, 2015
Experienced User
I can confirm they're growing fast. I already got 1 removed (a couple of weeks ago). My GP wants me to get annual check-ups and said to get other moles removed in the next months/years.
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replied April 10th, 2015
Active User, very eHealthy
TonyDewitt wrote:
All of our moles are going to grow, since we are all being immunosuppressed by the virus. The best thing we can do is have the moles removed, since they are just reminders that we are getting sicker.

Tell me, i cannot even begin to read more posts now, and dont pretend to understand how/what u are going through. I only know others have removed moles through the acv (apple cider vinegar) method, and of course ur situation is more complicated. We only wish there was a way, simpler ways to help heal. When i can spare maybe i should go through ur exchanges more, if u dont mind=). Am not very well myself, esp the eyes so i try to reduce my reading.
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replied April 12th, 2015
My health issues remain at muscle twitches & severe gum recession & await appt for hopefully a PCR for HTLV (even though that may confirm my issue, though there is nothing that can be done for it). Eyes red also. Most annoying thing is that the person who gave me this was a quick one night stand & she removed the condom during sex. I started it protected & she removed it during the event in an attempt to give me this! (I questioned this at the time but at her persuasion I stupidly carried on) She also bought me drinks prior to offering sex up in an attempt to get me worse for wear & unfortunately I succumbed. I woke the next day with a bruise on my chest that was not there prior to the night (abroad from my home country but with a British girl) and really thought no more of it.. But that quickly changed & not been the same since. (I think if it wasn't the sex she infected me with a needle?) I have no contact for this person but she obviously knew what she set out to do and achieved it! Honestly naively thought that would never happen too me & it disgusts me that someone would set out to do this. Unlucky to say the least as my friend had been offered it by the girl the night before but he truthfully said he was married and I never. She said she did not sleep with married men... I now know why! So through lies I have affected my own family and that of my wife's and my parents. How I wished I had been honest! Since being engaged / married I haven't looked elsewhere. Abroad with friends & drunk & meeting the devil in disguise = my situation.. How I wish I could find this women and have a chance to give her a piece of my mind!
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replied April 12th, 2015
Experienced User
scared1010: I know how you feel, I too was set up intentionally for this disease, her family knew she had this an would not go by her an took her daughter away, she was from another state an came here to see her daughter when they refused she got very upset an gave this to not only me but who knows how many others, here, an then when the phone calls started coming she ran off hundreds of miles away to her home state, I still have no idea what this is other then we believe its a retro-virus of some sort, ive spent last 14 months testing for everything, just had my blood tested last month all my counts good so far, but im watching it, going in for a series of colon, checks now,an in july more tests to see what type of infection this is? blood work etc,all the common stds, hep a,b,c, an hiv 11 tests over 1 yr, are all neg.but I as well as you were lead down a evil path by evil women.I had the red eyes in morning as well try this turmeric/curcumin,you can buy them on amazon, only takes 2 days to get them, tony d told me about them the red was no longer a week later an it helps with inflammation thus your muscles wont be as bad, im much better with these pills, thanks tonyd,whatever this is its very catchy, even my dog has all sorts of the same nero- symptoms as me an he has now gotten seizures as well, I know some people think im nuts for saying this but its true,these older retovirues came from monkeys,you think they cant infect my dog if they can infect a monkey? well hang in there scared, you are not alone rider
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replied April 13th, 2015
Has anyone figured a way to put lost weight back on? Tried all sorts. Whole saga frustrating to be honest after batch after batch of negative & normal everything... I Iive in a country where fortunately these tests / work carried out has been free but they have failed to unearth anything after umpteen tests. Rider I did use cur cumin but it didn't really offer much against red eyes. Am using pro biotics & coq 10 & gonna get green tea tablets & take it from there. Bizarre thing all this. I feel ok but for few things really (weight/eyes/teeth/twitching) madness in this day & age nothing can detect & sort these issues... Obv like everyone else I've had all standard test for STI & HTLV & bloods & CT/MRI & colonoscopy but nothing unearthed. Just a whole host of negative & normal.
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replied April 13th, 2015
Experienced User
Scared,

I understand your feeling. I'm really sorry for your story. Everybody here is a victim of a few seconds / minutes of mistakes. However we're humans and we can make mistakes… I mean it's pretty normal, and this does not automatically imply a punishment - unfortunately in our case it did.

I believe our situation will get better with time - if we don't get leukemia in a few years. We need to hold on and rely on science and research advancement. It will be pretty tough to determine the real *cause* of our issues - every test might come out normal indefinitely. Supplements and vitamins are the best treatment we can have, so you've taken the right path. I would personally avoid immune suppressors - as they might lower our immune system and cause even more serious issues.

I conclude this post by saying that if there's an 'autoimmune epidemic' out there, it is not a coincidence. One day better drugs will get released on the market and we might get able to have some relief.
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replied April 14th, 2015
Experienced User
Viruses that can lead to cancer
Viruses are very small organisms; most can’t even be seen with an ordinary microscope. They are made up of a small number of genes in the form of DNA or RNA surrounded by a protein coating. A virus must enter a living cell and “hijack” the cell’s machinery in order to reproduce and make more viruses. Some viruses do this by inserting their own DNA (or RNA) into that of the host cell. When the DNA or RNA affects the host cell’s genes, it can push the cell toward becoming cancer.

In general, each type of virus tends to infect only a certain type of cell in the body. (For example, the viruses that cause the common cold only infect the cells lining the nose and throat.)

Several viruses are linked with cancer in humans. Our growing knowledge of the role of viruses as a cause of cancer has led to the development of vaccines to help prevent certain human cancers. But these vaccines can only protect against infections if they are given before the person is exposed to the cancer-promoting virus.

Human papilloma viruses (HPVs)

Human papilloma viruses (HPVs) are a group of more than 150 related viruses. They are called papilloma viruses because some of them cause papillomas, which are more commonly known as warts. Some types of HPV only grow in skin, while others grow in mucous membranes such as the mouth, throat, or vagina.

All types of HPV are spread by contact (touch). More than 40 types of HPV can be passed on through sexual contact. Most sexually active people are infected with one or more of these HPV types at some point in their lives. At least a dozen of these types are known to cause cancer.

While HPV infections are very common, cancer caused by HPV is not. Most people infected with HPV will not develop a cancer related to the infection.

HPV infections of the mucous membranes can cause genital warts, but they usually have no symptoms. There are no effective medicines or other treatments for HPV, other than removing or destroying cells that are known to be infected. But in most people, the body’s immune system controls the HPV infection or gets rid of it over time. To learn more, see HPV and HPV Testing.

HPV and cervical cancer

A few types of HPV are the main causes of cervical cancer, which is the second most common cancer among women worldwide. Cervical cancer has become much less common in the United States because the Pap test has been widely available for many years. This test can show pre-cancerous changes in cells of the cervix that might be caused by HPV infection. These changed cells can then be destroyed or removed, if needed. This can keep cancer from developing. Doctors may now also test for HPV, which can tell them if a woman might be at higher risk for cervical cancer.

Nearly all women with cervical cancer show signs of HPV infection on lab tests, but most women infected with HPV will not develop cervical cancer. Even though doctors can test women for HPV, there is no treatment directed at HPV itself. If the HPV causes abnormal cells to start growing, these cells can be removed or destroyed.

Our document HPV and HPV Testing has more information on this topic.

HPV and other cancers

HPVs also have a role in causing some cancers of the penis, anus, vagina, and vulva. They are linked to some cancers of the mouth and throat, too. Again, although HPVs have been linked to these cancers, most people infected with HPV never develop these cancers.

Smoking, which is also linked with these cancers, may work with HPV to increase cancer risk. Other genital infections may also increase the risk that HPV will cause cancer.

You can get more details in HPV and Cancer.

Vaccines against HPV

Two vaccines, Gardasil and Cervarix, are available to help protect against infection from the main cancer-causing HPV types. The vaccines are approved for use in females aged 9 or 10 and into their mid-20’s. Gardasil has also been approved for use in boys and young men.

The vaccines can only be used to help prevent HPV infection - they do not stop or help treat an existing infection. To be most effective, the vaccines should be given before a person becomes sexually active (has sex with another person).

Because the vaccines are still fairly new (first approved in 2006), and it often takes decades for cancer to develop, it’s not yet known how well they will protect against it, or exactly which types of cancers they might help prevent. These vaccines and others like them are being studied further.

See HPV Vaccines for more on this.

Epstein-Barr virus (EBV)

EBV is a type of herpes virus. It is probably best known for causing infectious mononucleosis, often called “mono” or the “kissing disease.” In addition to kissing, EBV can be passed from person to person by coughing, sneezing, or by sharing drinking or eating utensils. Most people in the United States are infected with EBV by the end of their teen years, although not everyone develops the symptoms of mono.

As with other herpes virus infections, EBV infection is life-long, even though most people have no symptoms after the first few weeks. EBV infects and stays in certain white blood cells in the body called B lymphocytes (also called B cells). There are no medicines or other treatments to get rid of EBV, nor are there vaccines to help prevent it, but EBV infection doesn’t cause serious problems in most people.

EBV infection increases a person’s risk of getting nasopharyngeal cancer (cancer of the area in the back of the nose) and certain types of fast-growing lymphomas such as Burkitt lymphoma. It may also be linked to Hodgkin lymphoma and some cases of stomach cancer. EBV-related cancers are more common in Africa and parts of Southeast Asia. Overall, very few people who have been infected with EBV will ever develop these cancers.

Hepatitis B virus (HBV) and hepatitis C virus (HCV)

Both HBV and HCV cause viral hepatitis, a type of liver infection. Other viruses can also cause hepatitis (hepatitis A virus, for example), but only HBV and HCV can cause the long-term (chronic) infections that increase a person’s chance of liver cancer. In the United States, less than half of liver cancers are linked to HBV or HCV infection. But this number is much higher in some other countries, where both viral hepatitis and liver cancer are much more common.

HBV and HCV are spread from person to person in much the same way as HIV (see the section on HIV below) — through sharing needles (such as during injection drug use), unprotected sex, or childbirth. They can also be passed on through blood transfusions, but this is rare in the United States because donated blood is tested for these viruses.

Of the 2 viruses, infection with HBV is more likely to cause symptoms, such as a flu-like illness and jaundice (yellowing of the eyes and skin). Most adults recover completely from HBV infection within a few months. Only a very small portion of adults go on to have chronic HBV infections, but this risk is higher in young children. People with chronic HBV infections have a higher risk for liver cancer.

HCV is less likely to cause symptoms than HBV, but it is more likely to cause chronic infection, which can to lead to liver damage or even cancer. An estimated 3.2 million people in the United States have chronic HCV infection, and most of these people don’t even know they have it. To help find some of these unknown infections, the US Centers for Disease Control and Prevention (CDC) recommends that all people born between 1945 and 1965 (as well as some other people at high risk) get blood tests to check for HCV. (For a more complete list of who should get tested for HCV, visit the CDC website at: www.cdc.gov/hepatitis/C/cFAQ.htm.)

Once an infection is found, treatment and preventive measures can be used to slow liver damage and reduce cancer risk. Both hepatitis B and C infections can be treated with drugs. Treating chronic hepatitis C infection with a combination of drugs for at least a few months can get rid of HCV in many people. A number of drugs can also be used to help treat chronic hepatitis B. Although they don’t cure the disease, they can lower the risk of liver damage and might lower the risk of liver cancer as well.

There is a vaccine to prevent HBV infection, but none for HCV. In the United States, the HBV vaccine is recommended for all children. It’s also recommended for adults who are at risk of exposure. This includes people infected with HIV, men who have sex with men, injection drug users, people in certain group homes, people with certain medical conditions and occupations (such as health care workers), and others. (For a more complete list of who should get the HBV vaccine, visit the CDC website at: www.cdc.gov/hepatitis/B/bFAQ.htm.)

For more information, see our document Liver Cancer.

Human immunodeficiency virus (HIV)

HIV, the virus that causes acquired immune deficiency syndrome (AIDS), doesn’t appear to cause cancers directly. But HIV infection increases a person’s risk of getting several types of cancer, especially some linked to other viruses.

HIV can be spread through semen, vaginal fluids, blood, and breast milk from an HIV-infected person. Known routes of spread include:

Unprotected sex (oral, vaginal, or anal) with an HIV-infected person
Injections with needles or injection equipment previously used by an HIV-infected person
Prenatal (before birth) and perinatal (during birth) exposure of infants from mothers with HIV
Breastfeeding by mothers with HIV
Transfusion of blood products containing HIV (the risk of HIV from a transfusion is less than 1 in a million in the United States due to blood testing and donor screening)
Organ transplants from an HIV-infected person (donors are now tested for HIV)
Penetrating injuries or accidents (usually needle sticks) in health care workers while caring for HIV-infected patients or handling their blood
HIV is not spread by insects, through water, or by casual contact such as talking, shaking hands, hugging, coughing, sneezing, or from sharing dishes, bathrooms, kitchens, phones, or computers. It is not spread through saliva, tears, or sweat.

HIV infects and destroys white blood cells known as helper T-cells, which weakens the body’s immune system. This might let some other viruses, such as HPV, thrive, which might lead to cancer.

Many scientists believe that the immune system is also important in attacking and destroying newly formed cancer cells. A weak immune system might let new cancer cells survive long enough to grow into a serious, life-threatening tumor.

HIV infection has been linked to a higher risk of developing Kaposi sarcoma and cervical cancer. It’s also linked to certain kinds of non-Hodgkin lymphoma, especially central nervous system lymphoma.

Other types of cancer that may be more likely to develop in people with HIV infection include:

Anal cancer
Hodgkin disease
Lung cancer
Cancers of the mouth and throat
Some types of skin cancer
Liver cancer
Some other, less common types of cancer may also be more likely to develop in people with HIV.

Because HIV infection often has no symptoms for years, a person can have HIV for a long time and not know it. The CDC recommends that everyone between the ages of 13 and 64 be tested for HIV at least once as part of their routine health care.

There is no vaccine to prevent HIV. But there are ways to lower your risk of getting it, such as not having unprotected sex or sharing needles with someone who has HIV. For people who are at high risk of HIV infection, such as injection drug users and people whose partners have HIV, taking medicine (as a pill every day) is another way to help lower your risk of infection.

For people already infected with HIV, taking anti-HIV drugs can help slow the damage to the immune system, which may help reduce the risk of getting some of the cancers above.

For more information, see our document HIV Infection, AIDS, and Cancer.

Human herpes virus 8 (HHV-Cool

HHV-8, also known as Kaposi sarcoma-associated herpes virus (KSHV), has been found in nearly all tumors in patients with Kaposi sarcoma (KS). KS is a rare, slow-growing cancer that often appears as reddish-purple or blue-brown tumors just underneath the skin. In KS, the cells that line blood and lymph vessels are infected with HHV-8. The infection makes them divide too much and live longer than they should. These types of changes may eventually turn them into cancer cells.

HHV-8 is transmitted through sex and appears to be spread other ways, such as through blood and saliva, as well. Studies have shown that fewer than 10% of people in the US are infected with this virus.

HHV-8 infection is life-long (as with other herpes viruses), but it does not appear to cause disease in most healthy people. Many more people are infected with HHV-8 than ever develop KS, so it’s likely that other factors are also needed for it to develop. Having a weakened immune system appears to be one such factor. In the US, almost all people who develop KS have other conditions that have weakened their immune system, such as HIV infection or immune suppression after an organ transplant.

KS was rare in the United States until it started appearing in people with AIDS in the early 1980s. The number of people with KS has dropped in the US since peaking in the early 1990s, most likely because of better treatment of HIV infection.

For more information on KS, see our document Kaposi Sarcoma.

HHV-8 infection has also been linked to some rare blood cancers, such as primary effusion lymphoma. The virus has also been found in many people with multicentric Castleman disease, an overgrowth of lymph nodes that acts very much like and often develops into cancer of the lymph nodes (lymphoma). (For more information, see our document Castleman Disease.) Further study is needed to better understand the role of HHV-8 in these diseases.

Human T-lymphotrophic virus-1 (HTLV-1)

HTLV-1 has been linked with a type of lymphocytic leukemia and non-Hodgkin lymphoma called adult T-cell leukemia/lymphoma (ATL). This cancer is found mostly in southern Japan, the Caribbean, central Africa, parts of South America, and in some immigrant groups in the southeastern United States.

In addition to ATL, this virus can cause other health problems, although many people with HTLV-1 don’t have any of them.

HTLV-1 belongs to a class of viruses called retroviruses. These viruses use RNA (instead of DNA) for their genetic code. To reproduce, they must go through an extra step to change their RNA genes into DNA. Some of the new DNA genes can then become part of the chromosomes of the human cell infected by the virus. This can change how the cell grows and divides, which can sometimes lead to cancer.

HTLV-1 is something like HIV, which is another human retrovirus. But HTLV-1 cannot cause AIDS. In humans, HTLV-1 is spread in the same ways as HIV, such as unprotected sex with an HTLV-1-infected partner or injection with a needle after an infected person has used it. Mothers infected with HTLV-1 can also pass on the virus to their children, although this risk can be reduced if the mother doesn’t breastfeed.

Infection with HTLV-1 is rare in the United States. Fewer than 1% of people in the US are infected with HTLV-1, but this rate is much higher in groups of people at high risk (such as injection drug users). Since 1988, all blood donated in the United States has been screened for HTLV-1. This has greatly reduced the chance of infection through transfusion, and has also helped control the potential spread of HTLV-1 infection.

Once infected with HTLV-1, a person’s chance of developing ATL can be up to about 5%, usually after a long time with no symptoms (20 or more years).

Merkel cell polyomavirus (MCV)

MCV was discovered in 2008 in samples from a rare and aggressive type of skin cancer called Merkel cell carcinoma. Most people are infected with MCV at some point (often in childhood), and it usually causes no symptoms. But in a few people with this infection, the virus can affect the DNA inside cells, which can lead to Merkel cell cancer. Nearly all Merkel cell cancers are now thought to be linked to this infection.

It is not yet clear how people become infected with this virus, but it has been found in a number of places in the body, including normal skin and saliva.

For more information, see our document Skin Cancer: Merkel Cell Carcinoma.

Viruses with uncertain or unproven links to cancer in humans

Simian virus 40 (SV40)

SV40 is a virus that usually infects monkeys. Some polio vaccines prepared between 1955 and 1963 were made from monkey cells and were later found to be contaminated with SV40.

Some older studies suggested that infection with SV40 might increase a person’s risk of developing mesothelioma (a rare cancer of the lining of the lungs or abdomen), as well as some brain tumors, bone cancers, and lymphomas. But the accuracy of these older studies has been questioned.

Scientists have found that some lab animals, such as hamsters, developed mesotheliomas when they were intentionally infected with SV40. Researchers have also noticed that SV40 can make mouse cells grown in the lab become cancerous.

Other researchers have studied biopsy specimens of certain human cancers and found fragments of DNA that look like they might be from SV40. But not all researchers have found this, and fragments much like these can also be found in human tissues that show no signs of cancer.

So far, the largest studies looking at this issue have not found any increased risk for mesothelioma or other cancers among people who got the contaminated polio vaccines as children. For example, the recent increase in lung mesothelioma cases has been seen mainly in men aged 75 and older, most of whom would not have received the vaccine. Among the age groups who were known to have gotten the vaccine, mesothelioma rates have actually gone down. And even though women were just as likely to have had the vaccine, many more men continue to be diagnosed with mesothelioma.

The bottom line: even though SV40 causes cancer in some lab animals, the evidence so far suggests that it does not cause cancer in humans.


Last Medical Review: 09/24/2014
Last Revised: 09/24/2014
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replied April 14th, 2015
Experienced User
good job jammy! I was reading all this online last week, my sons gal has tested pos for abnormal cells in a recent pap test so we are all nervous for her to go in this next time,so it was good to read that again, thank you, my under arms an groin is swollen just alittle painful have some very lite chill sensations as well,not good,tony d hope your eyes are better, everyone hang in there.
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replied April 18th, 2015
Experienced User
Hi everyone. I know we are still plagued with our health issues and the hardest part is that no one knows the cause.

I was infected with some form of infection over three years now and I am still having symptoms. Every day my lower back hurts, serious gas issues, a little joint pain recently and very dark stool.

Hope we will get over all these illnesses one day before they kill us. Keep strong guys.

Tony and Scared, how are you guys?
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replied April 21st, 2015
Extremely eHealthy
Ustas,

Good to hear from you - I'll never forget your posts and how you began to see the same symptoms in other people where you live. I have some decent days, but I also have days where I feel like I've been hit by a truck. Pain is constant, just a matter of how small or big it is, or if I can find something to help my mind ignore it - back pain, joint pain, wierd stools, same as you. I'm afraid to exercise, not knowing if that will accelerate the illness or not. Like you said, hopefully they will accept and treat this illness before we die from it. You & me are on the same timeline of infection, three & a half years later.

Best wishes.
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replied April 18th, 2015
Experienced User
Hi everyone. I know we are still plagued with our health issues and the hardest part is that no one knows the cause.

I was infected with some form of infection over three years now and I am still having symptoms. Every day my lower back hurts, serious gas issues, a little joint pain recently and very dark stool.

Hope we will get over all these illnesses one day before they kill us. Keep strong guys.

Tony and Scared, how are you guys?
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replied April 19th, 2015
Experienced User
ustas; nice too have you back, I have not had the pleasure,its been 15 months for me, an nothing positive as to what this is yet, have same signs plus stiff neck, very lite white tongue, doctor states its normal told him normal for me was pink,off an on swollen general swelling under right arm an left groin. no back pain yet thou,otherwise likewise. 3 years how do you feel otherwise? I have read your old posts, an all others, as well as combing net searching for answers, my doctor is not interested in even trying. just shakes his head an stares ate me, im going in for colon testing, june then another check over in july, just had full blood count done month or so ago all normal,are your energy levels good yet, its good to hear from one of the old regulars,
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replied April 20th, 2015
Experienced User
Hello Therider14, thank you. My energy level seems good at times but whenever I try to exercise, my muscles ache. Apart from that, I am doing ok.

I forget to tell you guys that I am having constant groin pain.

I am living my life with the expectation that something bad is going to happen one day. I was tested positive for H.Pylori and mycroplasma years ago and I would really love to know if mycroplasma could be the cause. I am just hoping for the best Therider14.
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replied April 20th, 2015
Experienced User
USTAS; nice too hear from you again, my left groin has a burning sensation an when I do a lot of walking its worse same with my underarms,too much motion the get hot an burn,i get sore as well if I have too do lots of work, they say its normal when you are immune system is compromised,to be stiff an sore easily.but I keep plugging on I too know my days are numbered,so im living faster!otherwise my energy is good as well an ive never felt sick, or weak or tired, but got all the other stuff,do you have the white ness on your tongue,as well? my stiff neck is better to day I hope the swelling an stiff neck go away someday,alot of these symptoms seem to come an then go but new symptoms keep occurring,like jammy said never know what each day will bring,i don't let it stop me from being me, I ride my Harley, go fishing,an continue on life as normal, I really try to be careful around people, I don't think whatever this is its catchy, for sure have nothing to do with the ladies,it was a lady who knew she had this an set me up for it,then laughed an ran back to her home state.but from what stories ive heard im not alone there. my dry skin is getting better,my eyes are better,tony d stated he was having problems with his eyes I hope hes doing better? im enjoying everyday,no matter what,til my last. hope you are doing the same ustas,til next time hang in there, do give up the fight. rider!
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replied April 21st, 2015
Experienced User
Hi guys,

nice to read something from you again, Ustas. Please hang in there and try to live your life 'normally'. I know it's tough…

Rider, thanks for your words of encouragement.

Like Ustas said, I have myself the feeling that something bad is going to happen in the future. I got advised to see an Hematologist, however I won't go sooner than 2-3 years. I know that going to see Doctors is pointless - considering the current level of knowledge in Medicine.
It is really like having HIV in the 70's. I hope we'll get able to have some relief, one day.

All the best my friends.
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replied April 22nd, 2015
Experienced User
Thank you Tony, Therider and Jammy.

My years of dealing with this illness was very rough in the first year of contracting it. I had a trailer load of symptoms, some were very painful. After that, I started feeling better. These days, thank God, I am feeling a little like myself again. Only minor symptoms these day as was mention in previous post.

I can tell you that my doctors didn't really helped. They said its nothing and I should believe in my results.

You guys are the ones that really helped me in feeling better. Maybe if it was left to me alone, I would have hurt somebody or even myself. Those things are no longer meditated, I am just living and enjoying life as you guys.

Thanks a million guys.
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Users who thank Ustas for this post: jammy88 

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replied April 22nd, 2015
Extremely eHealthy
Ustas,

Well stated, I know many of us have had the same thoughts as you, considering the desperation and hopelessness of this virus, and isolation from the medical community. I'm glad you are doing better, but I worry about the guys we don't hear from anymore (Scared49, AdviseMe, et al); those guys had it much worse than us, both in terms of desperation and level of sickness.

Best wishes.
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Users who thank TonyDewitt for this post: jammy88 

replied April 22nd, 2015
Experienced User
well said by all jammy, tony an ustas,I can tell you guys are all genuine an mean what you say. I never thought as well as you guys we would all be in this boat together but here we are. I do so agree with jammy an ustas comments about doctors an the medical profession an I have stated it many times, there at this time is nor the caring for finding out what we have an running to doctors does not seem to help, I have 2 more apt, after that if they come up with nothing im done that would be nearly 2 yrs they had to figure it out.I really think we are all better off to stay in touch an monitor each others symptoms, an try to help each other an others here as we have been doing,maybe someday we will stubble onto some type of help,all I know is tony d jammy ustas you guys are all great sources of information,here an have helped me,i thank you,an hope you lead the way in helping others who come here seeking answers. I have learned more reading all these posts here, then anywhere else, an I cant believe how little my doctor knows compared to tonyd. ustas I to in beginning had a lot of symptoms come an go, an have leveled out never felt sick or weak for these symptoms were very mild,i know my stools may not get better, nor my tongue color,but I do hope the mild burning an off an on swelling unders ares an groin goes away, along with the stiff neck, those are annoying. hang in there guys rider
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replied April 22nd, 2015
Hey all,

I am doing a little better over the last week or so. I seem to have put weight on! Now weighing in at 12 stone 4 - 12 stone 7 depending on the time of day. I was about 12.8 - 12.10 but was well built around my shoulders / upper body. That is no longer the case. A fair few of my clothes still fit but others are too big. I think at one point I dropped to about 11.8 and steadied around 12 stone (it's took an effort to put 4 - 7 lbs on). Eyes remain red during the day. Back pain comes & goes, I have leg muscle twitches & Bowel movement remains inconsistent & same issue with my gums though the recession seems to have slowed. I'm also feeling a bit more like me, and have more of a positive outlook / attitude and trying to think beyond just what this is (which for 10 months has been my sole thought) Honestly I hope this continues. My wife has told me to get over it all after every test I have had (listed previously) has come back negative or normal and the fact s I have two children. One major mistake screwed me but never thought I would be in a position where the medical profession wouldn't have a clue what's up with me... I have a follow up on the 6th May and after being told they would liaise with the infectious disease team re progression I'm not optimistic about the appointment. I believe they will label me with post vital fatigue syndrome as they mentioned previously having come to the end of the road with what to do with me. (The last doctor I saw had no idea what to say to me when I discussed the issues. The consultant I saw was of use but this one was pretty useless. Having waited 3 months for the appt to be told more of the same normal MRI & colonoscopy I'm not sure we can do much more) frustrating to say the least. I live in U.K. and the NHS is heralded worldwide but it ain't doing much for this. I hope something crops up bug just hope I continue feeling the way I am now for some time.

Good to hear from you all, I use this as my main point of contact now as I've been to all the sites time and again looking for answers and don't seem to get any further.

Regards

Scared.
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Users who thank guest98809 for this post: jammy88 

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replied April 23rd, 2015
Experienced User
Hi Scared,

thanks for your words showing faith and good attitude.

I'm exactly where you are - same symptoms, same 'post viral syndrome' label. If you are willing to, try going to see an Hematologist. That's what I was told to do, although I don't have the courage to afford that yet.

Best
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replied April 22nd, 2015
Experienced User
Therider, my tongue looking is normal (pink).My only visible symptoms are; red eyes and my skin. My skin is not so bad as before, so I am not paying it much attention. My partner is going through the same issues as I am. Her gas problem is way worse than mine, However, her skin did not show any symptom as mine.
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replied April 22nd, 2015
Experienced User
USTAS; that's a big plus, they say if your tongue is white its a sign of a compromised immune system, like my stiff neck is a sign of a infection, had it for over a year now,my swollen gland the same sign of infection, so if you have none of these that's awesome, not to mention these symptoms suck,I also have the stool issues an ringing ears. so you my friend are doing well,as I said I hope these symptoms go away,but they say some people have the swelling under arm an groin for the duration.I did have the red eyes for 2-3 months ustas then it went away so maybe your will too, sorry to hear about your gal as well,an my skin is not so dry anymore but the texture is not right, my nails have lines in them how bout yours ustas, scared so good to hear from you I was just wondering how you were doing today, have not heard from you, glad to hear you are better an the weight is coming back,do you think the stress may have done it?I know how hard it is when people tell you to drop this subject, but you know deep down something has invaded your body,my boys tell me same, an think im nuts,i always sanitize everything when there over, they just roll there eyes but you guys know whatever this is is catchy,i got this from a single 1 sec unexpected French kiss, so I understand its hard to let go,its funny you would say doctors are not going to help us or figure this out, we all were just saying about that same thing on here, don't beat yourself up too bad whats done is done,must look ahead, sound like you have the support of your wife an she wishes to more forward . let us know if you figure anything out scared, rider
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replied April 23rd, 2015
Cheers Gents,

Jammy every blood test I've had in terms of routine FBC / LFT all normal & had a synacthen test looking at adrenal/pituitary glands which again was normal. Due to all the normal results not sure a haematologist would take me on.. Certainly not under NHS conditions (at hospital) the post viral thing seems to be a cop out as they don't know what's going on. Therefore a label to say that's what it is & discharge you. (Funny that once you've been diagnosed with it you can't give blood. So on one hand it's nothing to be too concerned about but on the other we won't take your blood just in case) I am feeling better and weight is going on & having checked all sorts of sites many of the issues I have this could be stress related rider. My gums & bowels concern me most due to length of issue and find it hard to accept that's stress along with the twitches.. Although I hope to god it is & it will all go away soon. Never had anything before this event. My wife is supportive which is great & I'm fit enough to continue to work which is good. Not really being taken apart by this just big concerns. Glad to hear people are doing good.

Bye for now.
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replied April 23rd, 2015
Experienced User
scared before you run off, check out the symptoms of a parasite infection they are the same as yours an you can catch them from people as well, its something to check out you can get pills from doctor to kill them they say parasites have killed more people then all the wars put together,plus the stress on top of it,if you had a serious disease you would not be putting weight back on like you are.an still able to work.also jammy had a list of stds that are pretty much uncommon an you don't hear much about last august, check out his list an go thur there symptoms, you can get pills to kill those from the doctor sometimes its easier to get cure then figure out the disease. follow up let us know how you are doing rider
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