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Certain HIV positive, but negative tests (Page 143)

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March 9th, 2017
So, I have been a reader to this topic for quite a while now and decided to write down my story here. First of all, Im not a native speaker (english). Second, my story began in May 2015
which is a little while ago, so this might turn out a little lengthy.

It all began with a hight risk encounter - unprotected episode with a girl in her prime...and a profession of meeting many men.

Two weeks after this, the first thing I recognized were bloody ulcers in my mouth. I decided to go to my GP that ran a blood test with the result of an infection being present(raised neutrophils, leukocytes). What followed was a
rash that was 1:1 this one: http://www.dermis.net/dermisroot/en/11096/ image.htm This rash was burning (basically on the chest). Together with that I developed following symptoms:

- Loss of appetite
- Weight loss
- Sore throat
- White tongue
- Night sweats
- Difficulties swallowing
- Folliculitis on my head

What followed after a while (might have been some days or even weeks, I do not remeber) was a massive neuropathy, and recurrent muscle aches. The neuropathy was tingling/pins and needles, beginning in my arms, then feet, legs,
going up to my torso and also affecting my face. What also started was a pain in my right upper stomach, together with loose, slimy, decolorized stools.

No fever was present during that period.

Up until now, following symptoms are ever present or new:

- Bloody ulcers in mouth
- Neuropathy/Pins and needles, in the meantime mostly present in feet/legs and arms
- Pain in right upper stomach and loose, slimy, decolorized stools.
- Recurrent painful lymph nodes under my armpits, staying like that for some days, then "disappearing" again for some weeks.

There are days when symptoms are a little decreased or even seldom days where they are not present at all, but this unfortunately is really seldom. Basically they are present all the time and on most days pretty strong.

So sure, with that encounter and that symptoms I suspected HIV. Test at 6 weeks was negative...many followed and all were negative, also 2 HIV-1 PCRs and 1 HIV-2 PCR. Last 4th gen was negative at 17 months. I visited
some doctors (will go into details on that for those interest a litte later) who did tests, I also visited the laboratory myself to do some tests. Those included HAV, HBV (incl. PCR), HCV (incl. PCR), HEV, EVB, Lyme
(incl. Western Blot), Lues, Chlamydia, HSV1, HTLV, stool test for parasites, some auto-immune-antibodies and others. All negative, besides:

- EBV, indicating a past infection
- HSV, indication a past infection
- evidence of Blastocystis spp. in stool

Now for the doctors I have seen and the examinations I took: The most interesting one was an ID specialist, to whom I went 17 months past infection. I was telling him what happened and was also showing him photographs that
I took at the beginning of infection (of bloody ulcers in mouth, rash, folliculitis...) and he was like : "Ok, so do you have HIV? Do you want me to treat you for that disease?". I showed him my previous tests and examinations
from other doctors and he was like: "This is really interesting, as this basically looks like a by-the-book HIV infection. But with all the negative tests....I havent seen something like that before" So he offered me to
run some more tests (HAV, HBV, HCV, HIV, Lues), which all came back negative.

Some months after infection and resulting from my neuropathy, I also went to see a neurologist. There were some test done in that field, also including an examination of my liquor. Also here, no irregularities besides elevated
liver encymes.

Because of the elevated liver encymes and the pain in my upper right stomach I went to see a gastroenterologist that did some test and an ultrasound of my liver, resulting in the diagnosis of a fatty liver (that is a condition
that does not cause any pains, as also confirmed by the doctor, so that was not the cause for my pains). Since after months condition did not get better I visited him again. He did examine my stomach finding Heliobacter pylori
bacteria. That was treated with antibiotics for one week. What a good week that was - no symptoms, no pains Smile After antibiotics were stopped, symptoms started to occur again. Heliobacter pylori could not be detected (anymore).
Not long ago he also examined my bowels where an infection was found that supposedly is Crohns disease - so at the moment I am taking cortisone, but that does not seem to help really.

So here I am, ongoing symptoms, not knowning what is really causing them and not knowing what I was infected with some (nearly) 2 years ago.

Oh yes, I also did a lymphocyte subcount 19 months past infection, T-helper cells are at 58% (range is 57-87), CD4 720, CD8 380, CD4/CD8 ration 1,8.

With all that happened and ongoing disorders, its really hard not to think of HIV....
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replied March 10th, 2017
Experienced User
CD4CD8 ratio of 1.8. No way HIV.
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replied March 10th, 2017
Experienced User
Hi geris,

I think we have lot of symptoms in common..

few questions,
I noticed that you didn't check CMV! and for HSV1 was it igg or igm ?
now i'm 15 months post exposure, and neuropathy still one of my all time symptoms,
check my topics please

regarding your CD4, CD8 counts and their ratio are more than normal!!
a 1.8 ratio is quiet assuring that this is not have HIV ( HIV 1 at least)
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replied March 10th, 2017
>I noticed that you didn't check CMV!
Sorry, I forgot to write that down, but CMV was also checked (both igg & igm) - negative.

As for HSV, I just checked my papers - test was for HSV1/2, igg and igm, only igg were raised.
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replied March 11th, 2017
Experienced User
if hsv1 igg is positive, than mystery solved..
what about gonorrhea
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replied March 11th, 2017
>if hsv1 igg is positive, than mystery solved..
igg positive means past infection with hsv. This test was done 2 weeks after my encounter when infection was new/acute, no way igm are negative and igg positive in acute infection.

>what about gonorrhea
was tested - negative.
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replied March 11th, 2017
Experienced User
never rely on igm herpes test !
for me i kept testing for hsv 1 and 2 up to 7 months !
at 6 months mark both were negative.., 2 or 3 weeks later my hsv1 igg turn positive !
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replied March 11th, 2017
What were your intervals of testing? Did you take Aclicovir or similar? Since you are igg positive too, is your mystery then solved, so to say?

Nothing of the infection resembles HSV1/2, talked with the ID about the things that were tested positive so far and he didnt suspect those to be the cause of ongoing symptoms. Also, I never had any blisters or similar things resembling hsv1/2.
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replied March 11th, 2017
Experienced User
@:
2 months mark, igg igm negative HSV1 AND 2
4 months mark, igg igm negative HSV1 AND 2
6 months mark, igg igm negative HSV1 AND 2
6 months and 3 weeks mark, igg postive igm negative HSV1
i have a non-stop recurrent blisters on my face, burning feeling in my scalp and forehead

yes i took Acyclovir 200,(twice daily)and my esophagitis pain went way after 1 week, but still feel like something is stuck in my esophagus till now,

No for me, the mystery still unsolved, because i can not blame HSV1 for my long list symptoms, unless HSV1 activated some type of autoimmune disease

sorry but i think you should visit a new qualified ID specialist,HSV (new or reactivation) cause Neuropathy and many other mentioned symptoms by you
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replied March 11th, 2017
That was/is a qualified ID specialist.

I know most people here lost all faith in doctors, I had my experiences with that as well - still I think you need to to find one/some that will take their time and run some examinations.

>i have a non-stop recurrent blisters on my face, >burning feeling in my scalp and forehead

That are no symptoms I have to cope with, sorry.

>yes i took Acyclovir 200,(twice daily)and my >esophagitis pain went way after 1 week, but still feel >like something is stuck in my esophagus till now,
>No for me, the mystery still unsolved, because i can >not blame HSV1 for my long list symptoms, unless HSV1 >activated some type of autoimmune disease

Its good that you have found something of a cure. I guess you have been diagnosed by an ID specialist and prescribed the medicine as well? Did you see him again after treatment? What did he saym, did you get that examined - Autoimmune antibodies, autoimmune disease that can affetc your esophagus? I read e.g. crohns disease can also affect esophagus, but many conditions can I guess.
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replied March 11th, 2017
Experienced User
to be honest, NO !
the ID After 4 months mark, he told me "it can't be HSV since you are beyond the window period, its not HSV"

But again, after lot of research i found that it might takes up to 6 months to show up, and igg is the only accurate test for HSV 1&2 ... so i repeated the test at 6 month mark and after 3 weeks.. and i wasn't surprised honestly.. because all things pointed to HSV or HIV... and when hsv1 came back positive i was "relaxed" a bit.
yes one Doctor told me that it's Fibromyalgia.. but still not convinced
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replied March 9th, 2017
Hi , been looking here for a while now , I have the same as what a lot of you people have .
I won't go into how I got it but it wasn't from sex or blowjob etc but very close contact with someone .
My symptoms were from the next day after the event in this order .
Felt sick as a dog the next day .
Threw up that evening a few times.
Nausea for a week or so after that .
Big bald patch on tongue .
Dry mouth at night .
Ulcers .
Weight loss (initially about 11lb)
Oral thrush .
Geographic tongue (to this day)
Itchy scalp (on off but almost all the time ) .
Loss of muscle mass .
Cough comes and goes .
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replied March 9th, 2017
Sorry I published that without finishing , I never had any of these symtoms before contact with this person and I still have a lot of them 3 and a half years down the line with no explanation , also I seem to yawn almost all of the time and feel tired to a point that people notice .
I tested to 6 months at clinics where they took a big phial of blood and tested for everything and all came back negative.
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replied March 10th, 2017
Experienced User
Update. I think I may have found out why I have an inverted CD4\CD8 ratio and its starting to make sense. After my incident I was diagnosed with post infectious IBS - this can cause low CD4\CD8 ratios. Anybody else with IBS out there?
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replied March 10th, 2017
Experienced User
Mm..

not me and i don't know if there is any link between low cd4, cd8 ratio and IBS
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replied March 10th, 2017
Experienced User
its well documented.
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replied March 11th, 2017
Experienced User
Great.. so now your fears should subside!
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replied March 11th, 2017
Experienced User
I can only hold onto this as a reason, if I don't I will drive myself crazy.
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replied March 11th, 2017
Experienced User
I was dignosed with ibs.. and this is what i have "learned" and "know" since then, when doctors dont know what u have, basically everything is negative with continuous gastro symptoms, they will diogonse you with "ibs" just not to make themself look bad.

"Ibs" it self doesnt have a diognosis test, its only diagonsed based on assumptions when everything is negative and when you have what they call "ibs" symptoms (diarhea or constpiation, belly pain and one more symptom i forgot).

Ibs in fact is defiently caused by a virus or bacteria or fungi, but the exact reason is not known till date by the medical world.
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replied March 11th, 2017
>its only diagonsed based on assumptions when everything

Did you guys have gastroscopy and/or colonoscopy done? That is a way a doctor can go more "into detail" for diagnosis, rather than just basing diagnosis on assumptions.
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replied March 11th, 2017
Experienced User
No i didnt myself. Just made stool test which came fine. Doctor said "alrighty then, it seems like your gastro problems is because of anxiety and fear if hiv which caused ibs".

Those doctors make me laugh
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replied March 11th, 2017
Experienced User
No i didnt myself. Just made stool test which came fine. Doctor said "alrighty then, it seems like your gastro problems is because of anxiety and fear of hiv which caused ibs".

Those doctors make me laugh
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replied March 11th, 2017
Experienced User
This is one of the most ridiculous, unrealistic unprofessional words i ever heard from "responsible" doctor..
every time they reach a level where their limited knowledge have no answer to many symptoms, they blame anxiety!
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replied March 12th, 2017
Experienced User
Exactly.

I went to a doctor for my oral painful tounge, she asked me whether im facing weight loss, diarhea, So i answered Yes i faced such symptoms (around 12kg weight loss and chronic diarhea/loose stools), she gave a me a look like never before, i was looking in her eyes and she was terrified i swear, she literly was saying this guy is Hiv postive without saying a word to me 100%.

Then i told her about my exposure and that i have tested negative for hiv up to 8 or 9 months at the time, she then told me that my tounge burning is due to stess and anxiety of hiv. She refused to give me any medications other than some vitamins, and after insisting she prescibed some oral thrush med like a luiquid to apply on tounge.. What the hell is this???
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replied March 12th, 2017
Experienced User
The problem most doctors now days dont wanna use their brain, they only follow guidlines.. they use guidelines like its a bible, like guidelines are never wrong.

I mean what more can i say, words cant describe how im feeling right now.
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replied March 15th, 2017
Experienced User
OK. I am trying to think this is IBS CFS, but I am still pursuing HIV. I am booked in to my local GUM clinic where I will present my case. I have also written over a dozen emails to various scientists. I have had 2 replies saying that they do not work in an area of science that can help me. The others have not replied. How is everybody else doing?
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replied March 15th, 2017
Experienced User
Good job, but don't limit your investigation to the above potential diagnosis,
i'm having a bilateral swollen parotid glands, slight swelling and pain in my cheeks, esophagus pain becoming more painful, severe headache
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replied March 15th, 2017
There is good news hiv reservoirs could now be detected read this article on google
(Hidden HIV reservoirs exposed by telltale protein)
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replied March 17th, 2017
Experienced User
Guys,
if you check 90% of HIV specialist reply on 6 months HIV negative test,(especially for high risk exposure)

The majority of them use the terms:
1- Most likely not infected
2- it's possible but unusual..
3- some take 6 to 12 months to show but, its not recommended to retest.

and when you ask them when its recommended they say: based on clinical judgment.
and what does clinical judgment means???
the answer is symptoms..
AND BEFORE THAT THEY TELL YOU, you can not diagnose an individual based on symptoms" only test tells if someone is infected or no, euhh...

Well, here we are,
All the above means that symptoms can't be ignored and 100% replaced by test result, unless they catches another disease that causes all those symptoms..

No one knows your body better than you do..,

for me, i'm not going to exclude that virus from my list until a clear proof and reason of my pains is 100% justified
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replied March 18th, 2017
Experienced User
You are right. Anything a Dr says, or especially writes down always comes with a disclaimer. One of the Doctors recently asked a haematologist if my inverted CD4CD8 ratio and case history were relevant he said "UNLIKELY". Whenever I read up on HIV tests it is quite apparent that the test isn't that accurate, what with PREDICTIVE VALUES, BOOTSTRAPPING, CUT OFF RATIOS, the list goes on. The LIKELIHOOD of a false negative or false positive depends on the HIV prevalence of the population, Also they say as my exposure was from getting a blow job, the doctor said that I didn't need to retest at 3 months because the CHANCES of infection were so small multiply that by the chance of being one of the 5% that don't show up at 4 weeks and I'm looking at LOTERY SIZED NUMBERS. There is way too much GUESSWORK on such an important diagnosis. I'm really starting to doubt the medical profession.
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replied March 22nd, 2017
Experienced User
now, i'm more convinced than ever that i'm HIV infected

Two days ago, i noticed white/gray patch inside my right cheek
went to dentist, he asked me if i'm a smoker and i'm not..

He said: seems a kind of leukoplakia


my wife having flu for the third time during the last three months.. blisters on her nose Sad
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replied March 23rd, 2017
I'm so glad I found this forum. I am 20 years old and had a moderately low risk exposure 9 months ago. I have tested negative 6 times since then with my last test last week. I have serious symptoms of HIV infection and need help. My symptoms are:

- HUGE weight loss: 18 kg in 6 months
- Swollen lymph nodes
- Fatigue
- Flu-like symptoms
- Aches and elevated temperature
- Lumps that appear on my skin lasting about a day
- More frequent ear infections
- Hot red face
- More frequent sore throats
- Dry eyes
- Chest pain/tightness
- Blurry vision
- Abdominal cramps

I have seen multiple specialists to rule out any other problems i.e. cardiologists, neurologist.

There is something going on here. It must be some rare strain that wont show up on standard tests. I need to be treated but I am denied HIV treatment because of my "negative" HIV tests.
I am very very sick. My vision also seems to be getting worse. The virus is causing havoc in my body. Also I get frequent stomach upset now. I have to see an ophthalmologist because I am concerned I might have something like Glaucoma as well which may be related to my infection.

Please help. Can anyone here relate to my symptoms. Do the symptoms improve? How can I get more advanced testing done? Without HIV treatment I will continue to get worse. This must be some rare strain.
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replied March 23rd, 2017
Experienced User
Dear Help3822,

We need to know more about exposure to evaluate the risk, was it protected or no, receptive/insertive, is it oral, anal or vaginal..

Your partner status, type of tests.

Please note that HIV is not the only existing STD !
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replied March 28th, 2017
My exposure only involved kissing HOWEVER, on the morning that day I used a new toothbrush which caused my gums to bleed which could have exposed the virus to my bloodstream directly. I felt suspicious of this girl and immediately avoided all further contact after realizing what I had done. I do not know her status but the symptoms I now suffer from is enough evidence I have contracted HIV from her.

As for the test types, I am not certain but my doctor ordered complete blood work and full panel screen. It all came back negative expect with a vitamin deficiency.

I have gotten over three ear infections this year all which required antibiotics to clear it. In addition I am fatigued, have blurry vision, frequent rashes that come and go, elevated temperature, GI upset, fluctuation blood pressure, unstable blood glucose levels, lightheadedness, palpitations, tinnitus, I can see more white blood cells in my vision when I look at the blue sky, migraines, chest tightness, aches and pains that come and go, hand tremor, twitching eyelid, restlessness, night sweats, malaise..... the list goes on.

I can't believe I did this to myself. I have ruined my life and health just for one encounter. How do I go about getting further testing done? This has destroyed my life. I always had unusual symptoms suggesting something serious and in the end I would see a doctor or specialist and I would get the all clear. However I don't feel im so lucky this time. I have classic symptoms of HIV but can't get a diagnosis
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replied March 31st, 2017
Experienced User
Update. I have sent 25 emails to scientists, professors, the CDC and WHO with no replies. The last Dr recommended finding a private ID Dr which I have done. I am now going to get a referral next week. How is everybody else doing? Are you getting anywhere?
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replied March 31st, 2017
Hi justamateroftime nothing yet since my last cd4 cd8 which I posted here tomorrow im going to have another cd4 cd8 test. I will update as soon as I get the results.
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replied April 2nd, 2017
How is everybody doing? Any update from scared and gotserved
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replied April 2nd, 2017
Did anyone test cd4 cd8 and got results? Please update
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replied April 3rd, 2017
UPDATE: NOT GOOD NEED ADVICE

I saw a HIV/Infectious Disease Specialist today and he ordered a multitude of tests including p24 with 4th generation. I showed him my previous tests. My previous tests were actually 2nd generation. The specialist got worried when I told him my symptoms and he was surprised to see my immunoglobulin E (IgE) levels were elevated. He said it is normally seen in classic HIV-1 infections and autoimmune disorders.

My anxiety is at an unbelievable extreme now. After 8 months testing negative with symptoms my IgE levels are well above normal suggesting HIV-1 infection. I am going for a battery of tests including protozoan tests. This is clearly some rare strain as it doesn't show up on tests but has caused my IgE levels to increase. Also my family is now getting sick and starting to suffer identical symptoms to me. I can't believe what I have done.

DOES ANYONE HERE WITH NEGATIVE HIV RESULTS WITH SYMPTOMS HAVE ELEVATED immunoglobulin E (IgE) levels?? THIS HAS CONFIRMED MY WORSE FEARS
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replied April 3rd, 2017
UPDATE: NOT GOOD NEED ADVICE

I saw a HIV/Infectious Disease Specialist today and he ordered a multitude of tests including p24 with 4th generation. I showed him my previous tests. My previous tests were actually 2nd generation. The specialist got worried when I told him my symptoms and he was surprised to see my immunoglobulin E (IgE) levels were elevated. He said it is normally seen in classic HIV-1 infections and autoimmune disorders.

My anxiety is at an unbelievable extreme now. After 8 months testing negative with symptoms my IgE levels are well above normal suggesting HIV-1 infection. I am going for a battery of tests including protozoan tests. This is clearly some rare strain as it doesn't show up on tests but has caused my IgE levels to increase. Also my family is now getting sick and starting to suffer identical symptoms to me. I can't believe what I have done.

DOES ANYONE HERE WITH NEGATIVE HIV RESULTS WITH SYMPTOMS HAVE ELEVATED immunoglobulin E (IgE) levels?? THIS HAS CONFIRMED MY WORSE FEARS
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replied April 3rd, 2017
Experienced User
Hi RELAX. I can see you are very worried and need to calm down. I know that's easy to say, but step backward and look at your situation. You believe you were exposed by kissing. That really is a no risk situation. I like you completely believe I am positive and I freak out each and every time my girlfriend gets an infection or symptom. Your story should give hope to me and others that stress really can play havoc with you physically. A quick google about IgE levels flags up a variety of causes, NON conected to HIV.
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replied April 3rd, 2017
I read in a lab manual that ige could be raised due to parasites
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replied April 3rd, 2017
The specialist said it is elevated because my immune system is actively fighting something. He confirmed there is indeed some infection/virus if it is not autoimmune related. But given my symptoms and previous tests, he is almost certain my body is fighting something and not an autoimmune disorder. I don't have asthma or allergies I/he know of so that leaves some pathogen to be causing an immune response. These were his words and this has caused me pure agony and extreme anxiety.

My previous doctors missed these signs in blood testing. They didn't request the IgE levels or the pathologists didn't look for it. It wasn't until the infectious disease specialist requested it last week for today's initial consultation.

My symptoms have gotten worse. More blurred vision, even seeing double in one eye now and streaking and starbursts in both eyes at night. Extreme fatigue and chest pains and crushing anxiety. This feels like it will be lethal
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