Lyme disease and HIV

[sam6386]

I recently had tonsilitious and swollen glands and achyness. I was sooo worried so I asked the Dr. to take my blood. a few days later (today) she calls me and said its Lyme Disease. I have no rash or anything that I can see that can be a "tick bite" but she says sometimes the bite and u feel and see nothing from it... the tests to determine this was an ELISHA TEST and a WESTERN BLOT TEST. same tests used for HIV. could it be at all possible that I could have HIV and not Lyme disease and they were diagnosed wrong? Im freaking out and very worried.

[sam6386]

this is just too crazy to have this all happening because I am sooo scared I have HIV.

[patsy10]

You are most welcome.

[sam6386]

Thank you Patsy 10 and SOONERMOM I appreciate all of your time and responses!!!...anyone have any other opinions/advice/help with my situation? I would appreciate anything...

[sam6386]

I know but its so hard :-/...Thank you for your time and patience and for helping me out Patsy, I really appreciate it. I wish everone the best. Its so nice that there are people that are willing to take their time out and help people they don't know. You are all very sweet.

[patsy10]

Try to get some sleep.  You need it to heal.

[sam6386]

My Lyme test- ELISHA was positive and WESTERN BLOT was also positive. a few days later I tested for the HIV which came back negative from the ELISHA test (the first test they use to determine anything) but note this has only been 2 weeks since my last unprotected sexual encounter. (my ex. who says hes clean and had a test before we started talking again.)  

[sam6386]

Thank you so much Pasty on all your information/advice and opinions...yes I did and she believes exactly what you have said... I am just so worried and this LYME came out of no where. If it really is LYME...my tonsilitious and swollen glands seem to practically be gone since I am at the end of my antibiotics 4 that... except 4 a cough which hurts my chest a little...a little achyness still continues but I think I might have caused some of this upon myself... with all of this stress and anxiety about the HIV and my encounters and my mind going crazy...the doctor gave me doxycycline ( I doubt I spelt that right) 100mg twice a day and I will start that in 2 days after I finish the Augmentin 875...I am just thinking if Lyme could affect a test like HIV, if I indeed had Lyme, and visa versa, if HIV would affect the LYME tests. (which I heard it can) I heard HIV can give a false reading of LYME but not the other way around... but who knows???...Ive been waking up about every hour and have not had a full nights sleep in over a week...and also attending school at 8am until 2:05pm mon-thurs and working fri-sunday.  

[patsy10]

EBV remains in the body dormant.  It can become active again during periods of stress or illness (lyme).  It is common to have active EBV when one has lyme due to the immune system being down from the lyme.

I will have to read more but I "think" it's the ELISA that can cross react with HIV.  
the ELISA is not a very specific test and is often false negative.  It can be false positive too.  The western blot is specific to the weight of certain parts of the lyme bacteria like the flagellum.  So this test is more specific.  The HIV virus does not have a tail so I don't believe you could get a false positive with HIV.  Also viruses are very small so the overall weight of the virus would be different than bacteria.  You may want to read this website drcharlescrist.com.  It explains the WB.

Try to get some sleep.  You need some rest to recover from the lyme.

Did you talk to your doctor about your concerns regarding the test?

[sam6386]

I have had mono before... and she said its very rare to have mono again and that I don't have that now. Does EBV always come hand in hand with mono? Is it the same thing?

[sam6386]

Thank you SOONERMOM for helping me out and giving me advise I really really appreciate it. You have no idea....Basically I was freaking out because I have had some previous sexual encounters that were unprotected as I looked up my symptoms they pointed to ARS (sore throat, achyness (I don't know if I brought that upon myself from anxiety and stress though, because I might have.) and swollen lymph nodes. I haven't really had much sleep at all. Its been about a little over a wek that I was on augmentin 875 2 pills a day for the tonsilitious and I believe swollen lympnodes. It seemed to work pretty well. I still have a little cough though and the nodes are a tiny bit still there. She explained to me about the IgM and the IgG but I honestly don't remeber. She showed me the papers, but I did not take them. I told her to check for everything that is why she checked and then the Lyme came out positive on both tests. I have hear that HIV can make a Lyme disease test mess up ( I have read it online) also other diseases and bacteria can too. I am just very worried because I have no recollection of any "bites" or any rash what so ever on my body at all. I have been going crazy with this anxiety and haven't slept much at all and wake up about every hour. I will retest for HIV since my test won't be conclusive until another 10 weeks about...any other advice? ideas? thoughts?

[SOONERMOM]

If the lyme test was somehow a false positive from HIV (which I have never heard of), then the HIV test would be positive as well.  I don't see anyway they could be reversed like that.  

If you get a copy of your western blot for lyme and give us the positive bands listed we can tell you more.  IgM usually indicates an ongoing infection, while IgG shows it has been there a while.  EBV can cross react with bands 30 or 31.

Your doctor must have seen something that made her test for lyme disease.  Maybe this is a fairly recent infection and your immune system is doing a good job of fighting it and that is why you don't have any more symptoms than you do??

[sam6386]

yes I do live in a lyme endemic state. but I am so worried about HIV and if the positive Lyme test would or could result in a false nagative HIV test...would anything affect it?

[patsy10]

Welcome.  I would have to believe it is lyme and not HIV.  Lyme is harder to test for.  I would not worry, especially since the test was negative.  Do you live in a lyme endemic state.  

[sam6386]

thank you for your help and understanding and for telling me your story...
Do you think that positive for Lyme could lead to a false negative in an HIV test? The day after I got the positive results to Lyme I went to get the HIV test that said negative...

[SOONERMOM]

One thing for you to consider is the Epstein-Barr virus.  It can cause tonsillitis and swollen lymph glands and cause some false positives on the lyme western blot.  They can do a test for it and I believe tell if it is a current or past infection.  Diarrhea is a very common symptom from broad spectrum antibiotics because it kills off the "good" bacteria in your gut along with the bad.

Is this your GP?  Most doctors are hesitant to jump to a lyme diagnosis.  Maybe you are in a very endemic area.  Unfortunately, we don't currently have an approved test that is able to look for the dna of the lyme bacteria (although it is being researched) and so we are stuck looking for the antibodies to lyme...which isn't as accurate.  The bacteria is very difficult to culture also.

I am not saying that you don't have lyme disease, but maybe your symptoms are pretty limited to what COULD JUST be an EBV infection of your tonsils???  Most of us have numerous crazy symptoms that change around a lot.  I believe that sore throat and swollen lymph nodes are on the list for lyme, but I would bet most people with lyme disease have about 10 more symptoms added on top of that.

My own story is more neurological and involves brain lesions and headaches, left sided numbness & paresthesias, fatigue, muscle spasticity and fibromyalgia like issues and joint stiffness...plus some others.  I have recently developed night sweats and am getting pain in my lymph nodes under one arm....so I will see my lyme doctor and see what he thinks about it.  Even though I had a CDC positive western blot for lyme, none of my doctors in my state believed that I could get it here (OK).  It is a very controversial diagnosis.

If you do live in an endemic region and test positive for lyme, then I would probably go ahead and finish that doxycycline prescription ... just in case.  If it were me I would ask about EBV testing and go from there.  I think one thing that makes lyme so difficult to diagnose is that we all have different set of symptoms.  

I think someone has listed this recently on this forum, but I will add it here too:

Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

Okay, so I hope that helped and didn't confuse you more!!  I hope you don't have lyme and keep us updated on what you find out,

Stacey

[sam6386]

also from what I researched is that it can also be a bacteria (which I am assuming could have caused the tonsilitious and the swollen glands) that is being tested positive for the Lyme test, when it might not really be Lyme at all...this is so confusing :-/

[sam6386]

thank you for responding! I don't even go outside much at all recently I went to 2 fairs one at my school and one at the mall where I was walking around outside. I also went golfing where I was outside. Not mini gold though. And then to an outside concert at a friends schoo. I have no rash at all and don't know if I have a bite or not...those are the 4 times in a few months that I have been outside for longer periods of time. My doctor said they can come from ANYWHEREEEEE but I don't know its just so random. I had an HIV test too. yesterday and got the results back about an hour and a half ago. It was negative. But I am going to test again in 3 months just to be sure. Symptoms were swollen glands and tonsilitious diareeah (sp?) happened only after taking the high dosage of medication she had given me for the tonsilitious and swollen glands which have basically cleared up about 95% by now. I am now on Doxycycline (sp) for the Lyme and she had told me to come back in 3 or 4 weeks to see what tests results say after the medicine is all done...can you explain your story to me?

P.S- she had also said its very common around here for Lyme disease to occur and many people don't even know it...no rash,or bite or symptons, says that the tick can just bite you and fall off. which would mean you probably wouldn't know it was even there ever.

[SOONERMOM]

From what I understand, even though the test methods are the same..they are testing for different diseases and there is no correlation between two.  One tests for antibodies to the bacteria that causes lyme disease and the other tests for antibodies to HIV.  The methods for determining if there are these antibodies in the blood are the same, but each test is very specific for the antibodies to each disease.

Basically they take "pieces" of the antigen (HIV or Lyme) and wash the blood over them and see if anything (antibody) "sticks" to it and forms a band.  If it makes you feel any better you could request an HIV test.  I had an HIV test for a life insurance policy come back negative right before my lyme  test came back positive.

It is true that many people don't remember a tick bite.  Some of these ticks are extremely small.  Do you know which bands came back positive?  What are  your symptoms?

[sam6386]

please help me if you know the answer... I heard this could be true because of the antibodies....