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Certain HIV positive, but negative tests (Page 122)

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June 12th, 2015
Experienced User
jammy, alittle weight loss can be caused by stress an sucked in face as well main thing is your going too live a long time, you told this hard , wheres tony been?anyway what you have an have gone though may help others, therider
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replied June 15th, 2015
Experienced User
So I went to a very good dietologist here in Italy. He said that having no gammopathies means that there's no chronic infectious/rheumatic issue, which is great news. I lost 10% of my weight - due to the disease, which he said attacked muscles.

He's very optimistic on my current health condition, and stated I should gain all the weight back after the diet he's giving me this week.
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replied June 15th, 2015
Experienced User
JAMMY THATS AWEOME!!!! IM SO HAPPY FOR YOU! I too am just starting to feel something funny in calf muscles an chest is not what it was im watching my arms cause they were large,cant see any changes yet alittle bit in cheeks starting now at 17 months out, like you stated you never know what to expect next I hope you found your way out of the dark woods an into the light. got my colon check next week an check over next month but don't expect them to do much or find anything, an if I say anything they tell me they are not running anymore useless tests.i have insurance an pay my bills don't matter to them.i have not lost any weight in fact put weight on cause since this I have been hungry all the time like my body needs more fuel,have not felt sick neither, but have had most of the same side effects as others here, all from a frenchkiss, don go kissing anyone you don't know lol
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replied June 15th, 2015
Great news Jammy! I had an appt with ID specialist consultant the other day. He reviewed my tests & current issues. They are as you stated similar to yours. Eyes, muscle twitch / leg pain, gums, stools. He stated there is no infection present in my system & tests confirm this. I too as stated previously have been feeling better. Dr stated HTLV would have showed on test & infection would be present in system if there was that issue with htlv or other significant virus. But for low salt he said everything sound with me. Given tests I have had something would have tipped the balance had there been something really wrong. I have had plenty of tests like everyone here. Still working every day & running round after 2 kids & living life. Hope like you whatever this is / has been is getting kicked out of me hence no infection signs. My weight as stated previously has steadied. Even been on bike rides, playing golf & socialising. Hope that continues which I'm sure it will as bit by bit I feel / look better. Here's to your news buddy. Hope the diet works wonders! What's he got you eating?

Regards

Scared
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replied June 15th, 2015
Experienced User
scared what up? WOW THIS IS GREAT NEWS ALL THE WAY AROUND !! IM HAPPY FOR YOU GUYS! I HAVE TRIED TOO SEE THESE DISEASE DOCS AS WELL BUT THEY WONT SEE ME UNLESS IVE BEEN SENT BY PRIMARY CARE DOC OR TESTED POS FOR SOME DISEASE, AN NEITHER HAS HAPPENED ASKED MY DOC TO SEND ME TOO ONE HE SAID WHY! TOLD HIM I NEED TO FIND OUT WHAT THAT WOMAN PUT IN MY BODY HE SHOOK HEAD WALKED OUT,scared im glad your back in the game of life, I keep living mine reguardless, not going to live forever either way, THIS IS A VERY GOOD DAY!!!!!!!!!!!!!!!!!!!!!!! RIDER
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replied June 16th, 2015
Cheers Rider! It's taken 9 months to get to this stage & over 12 months since it all started. Having been to GUM where everything was neg, I had to go via GP which is our primary care centre to request seeing a physician in a general out patient clinic (GP was a little miffed as to why I wanted this but agreed). It was there they tested for everything non GUM (HTLV, blood work after blood work looking at thyroid, liver, kidney function & for infection / inflammation levels in my body. I had further investigations in terms of synacthen test looking at hormone production in adrenal / pituitary glands to see if they were causing me issue. Full body CT scan then head MRI then more blood work. Only after this was I sent to an ID doctor as general medicine / consultants were scratching their heads. This process of seeing them started in November & obv in middle of June now. ID specialist reviewed every test / result has done some further blood work and discussed everything to date. He stated that no infection present was from everything he had reviewed & work carried out this time to confirm the fact 13 months post exposure. Prior to seeing him as I had said feeling better & looking better & weight has been improving. This guy is a consultant doctor in infectious disease & was aware of HTLV as many arnt.. He went through everything in detail & had spent time looking through my notes which unfortunately most do not. I am hoping I continue along this path now and everyone else in this predicament get some answers soon.

Cheers again Rider

Scared
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replied June 16th, 2015
Experienced User
my blood work results the same after one yr from exposure no sign of infection an all normal levels, an I stated why are my lymphnodes slightly swollen for almost a yr now, they swelled up 6 months after exposure to present,an tongue mildly white doc said that's normal I said normal is pink an that was the color it was before that French kiss, So scared what do you think caused your symptoms any clue? we all had they same stuff going on give or take a symptom, im just glad too hear good news for some of us here,stay safe out there scared the rider
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replied June 16th, 2015
Hi!

I'm in the same boat you! It has four months that have symptoms similar to all of this forum, and the idea of suicide going through my head.
As you initially thought about HIV, but made the exams, nothing of the symptoms pass. Already tested for HTLV by Elisa, Western blot and PCR, all negative, but I know there's something wrong with me.
I have started my treatment based on vitamins to relieve pain and inflammation, but we need remedies that fight the virus itself. I am tired of being called "crazy" by doctors.

I read that this week will have a conference on HTLV
Let's wait for good news.

Do any of you managed to regain the weight? How?

Faith in God / Christ.
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replied June 24th, 2015
Extremely eHealthy
E,

You are the new poster child for this disease - I see you did the appropriate testing, especially for HTLV, which is an accomplishment in itself considering the backlash and resistance against testing for it.

Welcome and best wishes.
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replied June 17th, 2015
That's the thing Rider I don't know.. I have had everything possible checked over 14 month period. I forgot to say, I too had a colonoscopy & yes you guessed it normal. They also looked at my immune function re antibodies production & that is working as it should & producing antibodies sufficiently to fight infection. They tested for immunology to rule out auto-immune issues also (sjogrens etc) I had never heard of these issues / infections before. The ID consultant stated the only way you wouldn't produce antibodies would be because of lymphoma.. He then continued that any lymphoma (which I've showed no sign off) would be detected & tests show I'm producing antibodies.. So in terms of a retrovirus it would be detected not only because of presence of infection in system but because of sensitivity / specificity of the tests in detecting the antibodies.. I believe I caught something that my body has slowly dealt / dealing with over time and on top of that my stress / anxiety levels have gone through the roof. A combination of the two I believe has been my issue. What is certain is my weight is improving. As are my eyes, (generally whiter). My muscles don't twitch as much and any pain I had is lessening. I'm sleeping slightly better as my 18 mo isn't waking as much. My energy levels are up as is my outlook generally. I have continued throughout this ordeal working full time which probably didn't assist my issue but something I had to do. I am back playing sports & looking forward to going out socially. I feel I'm actually improving physically & I'm hoping that continues until this thing is well behind me & us all!

Regards

Scared
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Users who thank guest98809 for this post: jammy88 

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replied June 17th, 2015
Experienced User
Hi Scared & Rider !,

so basically the dietologist wants me to increase calories intake, as well as carbs and proteins. He's going to give me the detailed program on Friday. This will be accompanied by an average physical activity aimed at muscular mass improvement.
I will keep you guys posted on how it goes.

At the moment, my main physical concern is about fat loss in face and muscle loss in legs and shoulders - but I'm working on it and I'm seeing some slight changes.
I can tell that I look much better than 1 year ago, which is already a good thing. Legs are not an issue anymore. Hopefully this continues for a long time.
Of course, I'm keeping the vitamins intake high and constant. My vitamin D level in my last bloodwork was perfect (high, in range).
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replied June 17th, 2015
Congratulations Scared1010! Very cool you be coming back to your routine, also I hope I and others succeed it.
Today I made an examination of my lungs as it has three months I have cough with secretion fortunately nothing has been found. My doctors also spoke of the sensitivity of tests to identify the antibodies, the problem is that the symptoms do not go.
Jammy keeps us informed of how you are doing to increase their weight, must recover, I am very thin and skeletal.

Someone faced skin problems: how yellow skin? How to solve it?

Faith in God / Christ.
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replied June 23rd, 2015
Experienced User
Hi evan,
I still have yellow skin, mostly on my legs. I don't know how to solve it and have no idea what it is… Neutral
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replied June 24th, 2015
Today I spent in a dermatologist, I now have to do more tests, especially Vitamin D, for her I'm healthy, but I know there's something wrong inside me. Liver tests were normal, as always all normal and no symptoms pass.

Faith in God / Christ.
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replied June 17th, 2015
Experienced User
Hey what's up guys? I hope you doing well! My symptoms almost gone since last time I was here (maybe one year ago or so). All 90% gone I would say. I have no idea why. Immune system stabilised probably. It took 4 years. No doctors. Just some supplements. Something is going on with the immune system - there are no flues/colds during last couple of years. I used to have them several times a year. No idea. I gained weight during last 12 months. It's not easy to ged rid of it now.I have to go to bed cause it's a deep night here. See you guys.
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replied June 24th, 2015
Extremely eHealthy
JB,

Keep in mind that HTLV causes an upregulation of the immune system, i.e. overproduction of clonal T-cells. While this might mean that you are less likely catch a cold or flu, it also means your immune system is on overdrive, which can lead to those horrible cancers, lymphomas, and leukemias that HTLV causes. I'm glad you said that it took about 4 years, since I am just past the three & a half year mark. For the weight, recall that HTLV interferes with mitochondrial energy processing, my advice to you is stay away from carbs and do low carb (or no carb) diet. That's how I lost the weight.

Best wishes.
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replied June 18th, 2015
Anyone ever had increased numbers of leukocytes in the exam?
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replied June 24th, 2015
Extremely eHealthy
My platelets are through the roof, another sign of HTLV.
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replied June 20th, 2015
Experienced User
Hey its awesome to hear from more people with the same issues, I have never been sick but had lots of symptoms, but as with you guys at 17 months they are fading away, have a mildly white tongue ringing ears more so one ringing ear, right under arm swollen just alittle yet, an I had a hugh list before this, legs are feeling much better no muscle twitching any more, that really scared me I like to stay upright long as I can,getting my colon checked Monday, an some more tests, but stomach feels good bladder good I work from 6am to 3pm no bathroom breaks,everyday but if I sit around an drink stuff im going every 4 hours, so im good there, bowel is better however not as it once was, enough of me, evan we have all thought of ending it, but don't do it, I really thought this was hiv, but 11 neg tests over one yr ended that have one neg test for htlv,an ebv,cmv, all the common stds neg, lymes disease neg you don't know what you even have yet evan hang in there lots of good news on here as of late, no sign of leukocytes yet for me but I will continue to watch for all these things once a year, I don't know if this disease is highing now deep in me or if my body is recovering, as my blood work an all looks good, yet? Jason good to hear from you this adds more hope for us all as well as jammy doing well, lets all stay in touch an keep fingers crossed, jammy I really feel now that a lot of stress is lifted from you your body will come back stronger. lots of great pasta in Italy I go get some jammy. lol
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replied June 21st, 2015
Experienced User
My dietologist said the infection I got caused a catabolic syndrome in my body. Try to google it and you'll find all the symptoms we've suffered from. I hope he's right and everything is gone for real. But my face looks so different - skinnier and kinda older - that i'm still terrified about what is going on with my body.

Let's hope…

Best.
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replied June 21st, 2015
Experienced User
I HAVE TOO CHECK THAT OUT JAMMY, MY SKIN LOOKS FEELS,OLDER AS WELL,NOT AS DRY AS IT WAS,COULD BE THE COCOUNUT OIL IM USING, BUT SYMPTOMS GETTING BETTER SLOWLY,NO NEW ONES HAVE COME UP,BUT I TOO JAMMY AM WONDERING AS I STATED LAST TIME IF THIS INFECTION IS BURIED DEEPER IN ME,AN HIDING OUT? AM I CONTAGIOUS? I DONT KNOW? IM GUESSING I MUST BE IF I CAUGHT IT FROM A FRENCH KISS,AN NOW ITS IN ME WHATEVER IT IS? I JUST HOPE IT DOESNOT CAUSE CANCER,AN KILL ME.THIS SURE DOES SUCK TO NOT BE ABLE TO DATE OR HAVE ANY CONTACT WITH THE LADIES,BEEN 17 MONTHS, AN THE DOCTORS TOLD ME HERE DONE TESTING ME FOR STDS, INFECTIOUS DISEASES, SO UNTIL I KNOW WHAT SHE PUT IN MY BODY IM A LONE WOLF,IM TRYING TO FIND OUT THE TRUTH NOT SPREAD DISEASE,I DONT WANT TO MAKE ANYONE SICK. THE RIDER
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replied June 22nd, 2015
Experienced User
had colonoscopy, done one small polyp found 6 mm was removed, no other issues all good, blood work on t-4s an t-8s overall blood cbc good normal ranges 17 month out from exposure, do had bowel issues since exposure, stool not right , but all look s good there yet, results are as I figured they would be, something has invaded my body but has not left a big enough track to find?jammy I read up on that catabolic syndrome yea that's a lot like what we have but is it contagious?
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replied June 23rd, 2015
Experienced User
Hi pal,

I get what you mean… my bowel has been a mess since exposure and I haven't gotten able to overcome this issue yet. Many times I wake up at night with abdominal pain, and stools are pretty dark.
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replied June 22nd, 2015
Active User, very eHealthy
Keep on with the VCO, and may i ask do you take it as food or part of food, or apply only. I understand it is a good antifungal and antibacterial also, so no harm if ingesting. There was a site where i read theres a country, some islands in the pacific if i'm not mistaken? where they get up to 60% of their calories (is that right!) from coconut products. Look, memory isnt so good, but ill check that out if mistaken, ok=).
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replied June 23rd, 2015
Hi!

Jammy how are you? I'm wanting to do this exam gammopathy. It is definite to disregard any infection?

No longer stand it go on medical, off the pain does not pass.

Faith in God / Christ.
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replied June 23rd, 2015
Hi!

Jammy how are you? I'm wanting to do this exam gammopathy. It is definite to disregard any infection?

No longer stand it go on medical, off the pain does not pass. The next one will see will be a dermatologist.

Faith in God / Christ.
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replied June 24th, 2015
Experienced User
Hi evan,

yes, according to every Doctor I saw, no gammopathy = no infection / rheumatic issue.

My symptoms are slowly vanishing but I'm still far from my old self.

Best wishes my friend
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replied June 24th, 2015
Hi Jammy!

I will create courage to do this test, although estaje scared to death to do it. Very good to know that its examination gave normal happy for you and your family. You nozzles faced problems, I am having problems? Each day a new problem.

Good luck my friend.

Faith in God / Christ.
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replied June 23rd, 2015
Experienced User
samm00 yes you are so right the coconut oil is awesome my skin is much better an so is my bowel movements. jammy get that coconut oil you will see skin texture improve in 3-4 weeks.samm00 is right.
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replied June 24th, 2015
Extremely eHealthy
TR,

What are you doing, drinking it?

Best wishes.
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replied June 25th, 2015
Experienced User
jammy is that test just called a gammopathy test im going in for check up again in august my doctor is moving thus quitting at my hospital now I have a choice of 6 dif doctors so I want to go down there an tal too them an decide who I want based on how well I think they are going to respond to my needs, an ill have that done or at least tell them to do it getting them to is another matter. the rider, you got to be more stress free now right???
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replied June 28th, 2015
Active User, very eHealthy
Yes, vco can be taken by the spoon or mixed w/ other food like salads, or for cooking they say.
Guys, i dont know if uv noticed, but theres a question i posted in polls a while ago on exercise/sports. Mind posting a reply to start it going? it isnt very noticeable=)
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replied July 3rd, 2015
Hi all. Hope you are good. Been out for a run tonight. Warm weather but managed 2 miles. Been a while since I have done this but need to get back into fitness things. Still feel like I'm improving. Symptoms slowly improving and I'm feeling more like me. Still have leg twitches and some pain and sleep still an issue. Hopefully exercise will make it easier. Gum recession remains. At the start of all this on the day of exposure I played Golf in Portugal. My first post also explained bruising when I woke post exposure. On this topic has anyone tested for Lyme disease. Symptoms match mine and others in this post though appreciate it's from tick bites but cause symptoms similar to the ones I have. Having tested everything sexually I'm looking outside of the box. As I say a long shot and I'm improving but just a thought. Similar to the mycoplasma shout sometime back. This too isn't easily seen during routine tests..

Regards

Scared
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replied July 6th, 2015
Experienced User
Hi friend,

Lyme is a good bet. It is also transmitted sexually.

My test was negative, but ID dr. said all the symptoms matched.
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replied July 3rd, 2015
Experienced User
samm00 I take one table spoon of coconut oil per day you may take up to 4 if you wish it states on label, I do have other supplements as well, SCARED! GLAD TO HEAR IT! no matter what happens your life is now or never live it now!!! that goes for every one don't shut yourself in a closet, keep pushing on! scared I tested for lyme disease,when I tested a 4 th time for al stds,lol yea 11 for hiv in a yr, 4 times for all stds, including lyme,all neg,an cmv hep a ,b,c as well my doctor stated there could be unknown viral conditions people have out there,keep that in mind,no tests for those, I still have all the same symptoms still feel good thou, know something deep down isn't right but what, colon check revealed nothing,hate to see that bill, hope ins covers most of it but have big deductible,stiff neck gone that's awesome what a pain that was,im hoping more symptoms go away someone stated 4 yrs til they got better, im 17 months, going in for check up august new doctor see what he thinks, everyone enjoy your summer!!
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replied July 7th, 2015
Experienced User
I'm glad you are doing better my friend… hope everyone here is.

My main problem now is with skinny face (fat loss) … hope the diet helps. Other symptoms are mild, but still there sometimes.
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replied July 5th, 2015
Experienced User
jammy you were talking about your dark circles under eyes just watched a doctor talk about that claims in most cases its a malfunctioning thyroid gland or deficiency,there is hormones for that you can take,whatever infected your body may have thrown the thyroid out of balance, symptoms of thyroid as as follows, hair falling out,esp in front,dark circles under eyes, chills,feeling cold in hands or feet,fatigue,brain fog,headaches,constipation,dry skin,body aches,weight gain,memory loss,high cholesterol,heart palipitations,allergies.arthritis,cancer, heart disease,diabetes, I feel my thyroid an entire syytem is out of balance due to whatever this infection is as well, so ask your doctor for blood tests, an test your t-4s as well, im going to in august when I go in rider
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replied July 6th, 2015
Experienced User
hello friend,

my thyroid values are in normal range, but I believe I have some sort of thyroid malfunctioning (I have positive anti-thyroid antibodies, but apparently this is not causing any particular issue. I believe this has started after my EBV infection 5 yrs ago)
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replied July 6th, 2015
Experienced User
well jammy im sure you know ebv can cause an lead to other health issues,so maybe this is or is part of problem? lets hope your problem is something you can live a long time with if one must,but hopefully you can beat it as well. rider
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replied July 8th, 2015
Experienced User
Hey TR,

yes I know about EBV, but I got that infection back in 2010; the one I got in 2014 is something different, I know this for sure.

EBV is a nasty virus, tho.
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