I teste for HIV 1 at 3, and 6 months + HIV 2 at 1 year and it was neg.

I am getting; face swalloen, like black rash type on side of my face, headaches, liver pain, abnormal alt, joint pains, eye stiffness, very very fatigue, tired, lack of energy and just getting bad day by day.

My doc wont order lyme because I live in Arizona and says there arent no lyme in arizona.

I been tested for everything and all normal.

Do you think I may still have HIV ? Or does my symptomes sound like lyme

gatric problem, endoscopopy shows gastritis problem, sinus problem, dry mouth, mouth burning, weird feeling in the gut area, sick all the time, very very very fatigue, headaches, eye problem, easy nose bleed, nose burning.

The progression of HIV exposure to symptoms almost never occurs in a year. It takes years. This fact alone would tend to rule out HIV.

However, some doctors are quick to jump to that explanation if they assume that you are a member of an at-risk population (ie. gay male, I.V. drug abuser, sex worker, etc...)despite the fact that HIV has moved far beyond the original high-risk groups.

Having Lyme is no picnic but it is definitely treatable. Some of your symptoms sound like they could be due to Lyme. The question of whether Lyme can be passed sexually is controversial but some of the best Lyme docs believe that it can.

However, there are plenty of ways to be exposed to ticks and many people with Lyme do not recall a tick bite or the "bull's eye" rash that is sometimes characteristic. Living an outdoor lifestyle is a risk factor in and of itself. Although, I was bitten in my back yard.

Several people form Arizona post here and hopefully they will be along to offer their ideas.

You are young. Do you have any family support? The reason I ask is that it may be time to change doctors and play some hardball.

Chin up. I think you will be able to figure this out and get beneficial treatment. People here are realy good at helping people in your situation.

David

[This message has been edited by David95928 (edited 11 November 2004).]

List: Allergies Immune Specialist, Infectoin doc, 5 MD, Gastro Doc, 3 ENT doc, 2 Rhumatoid Aritirits Doc

And they all tell me its nothing becase my lab test is NORMAL. What the hell ?They tell me that I have fibro and I should go home and sleep and take care of my health.

Hell, Fibro is not a disease its a under lyning cause of something freaken virus.

I am so mad at my life.

Many people here have been to MANY physicians and have been misdiagnosed as having fibromialgia, MS, CFS, ALS etc... Many of us have had the experience of being told repeatedly that since our labs are normal, we are well. My point is that you are not alone and others have gone down this road to either cure or stable containment of the infection.

You have posted on the "Seeking a Doctor" forum and should get some responses in terms of Doctors who specialize in actually treating Lyme disease. We call them LLMDs (Lyme Literate Medical Doctor). These physicians tend to diagnose Lyme on the basis of symptoms and course of illness and use the tests (which are pretty unreliable) to support the diagnosis.

Generally speaking, the primary form of treatment is long-term antibiotics.

Looks like you've gotten good advice so far. Your symptoms sure sound like lyme to me but only an llmd can make that determination. One point I want to make is that if you do get an appointment, make sure you write down your symptoms ahead of time so you have them for your first visit. It's important to give your doctor a clear list of your symptoms. You might want to check our Dr. Burrascano's list of the most common lyme symptoms at this website to see how many match yours:
http://www.igenex.com/burrascano_1102.htm#sympt

Jack

Facial flushing is a symptom many here have experienced. That is also true in my case. As is often the case with Lyme, I went undiagnosed and untreated for many years resulting in my having a multitude of symptoms. Thankfully, I was eventually diagnosed and treated and am much better. Because of the long infection, I don't have a strong expectation of being cured but have attained stable management that allows me to live a normal life other than taking medicine all the time. Hey, it's not nearly as bad ahs having diabetes.

Almost a year ago, I wrote up a progress report on myself and posted it here. I will again. You will see the wide range of symptoms and the range of improvement possible.

Of the people here who have been sick a long time, I've had a pretty good response to antibiotics. If your problem is Lyme, you probably can respond equally well. Having been ill much less time, you may still be able to actually be cured.

Here is that progress report. Since that time there has not been too much change, although I think there has been some gradual improvement.

............................................

Objective improvements since starting antibiotics January 2002 (Observed by others)

1. Respiratory

a.No respiratory infections in twelve months
b.Stopped snoring
c.No ``asthma'' symptoms (have used no inhalers)
d.No ``air hunger''

2. Cognitive
a.Improved speech, word substitutions reduced.
b.Disorientation resolved
c.Short-term memory resolved
d.Train of thought resolved

3. Neurological
a.Vertigo only when herxing
b.Facial twitching is very rare
c.Tingling and numbness in hands is gone
d.Excessive perspiration not a problem unless herxing

4. Dermatological
a.No angular stomatitis or aphthous ulcers in last 4-5 months
b.Facial flushing gone except when herxing

5. Neuropsychiatric
a.Exaggerated sense of poignancy (choking up over nothing) dramatically reduced
b.Irritability dramatically reduced

6. Urogenital
a.Am consistently able to go though most of the night without needing to urinate
b.PSA dropped from 2.6 to 1.4
c.Starting urination is MUCH easier and faster

Subjective improvements

1. Muscoskeletal
a.No arthralgias except when herxing
b.Tendon pain absent except when exerting myself or herxing

2. Neurological
a.Visual contrast sensitivity is no longer an issue
b.Depth perception seems improved
c.Vision has improved (hard to describe)

General Effects

1.Have not been ill in a year
2.Often feel like I did before 1991
3.Have returned to being a confident driver
4.Doing my work isn't a struggle
5.I'm able to do physical work and enjoy it
6.I'm not in constant pain

............................................

Ben, I hope this is helpful and ecouraging. Let me know if you want to know more about the protocol I used.

Well I have been on doxycyline for 1 month and I didnt feel any difference besides my prostate. Does lyme take more time to hit ?

Also how about Lyme affecting your LIVER, does it cause pain around the liver area and cuase abnormal liver test ?

I am going to call the doctor lisa has given been and see if I can see him.

Do you mean that when you took Doxycycline you didn't feel any better other than the prostate infection. Or do you mean that you did not have a herxheimer reaction?

Not everyone has Herxheimer reactions while on antibiotics. Also, the dose may have been too low to kill off much Lyme. When one has had Lyme for a long time, like a year, it can take months of antibiotics to start seeing real clinical effects.

Seeing the doctor Lisa recommended might help you get a clearer idea of what you are dealing with. Also, it might be good to start doing some research on this site to get some ideas about what medicines you think might work for you. I have pretty definite opinions on this but don't want to sound like a broken record.

David

It seems that it takes higher doses of antibotics to kill lyme than other bacteria....

also not all antibotics work for all of us.

leviquin didnt work at all for me

also some medicines can take to work

when I was on rocephin the first time it took 7 weeks before I had ANY improvement.

Your symptoms are symptoms of lyme and many other things.....

You had very good advice when you were told to seek a lyme literate dr. If you have lyme they will be able to rule out other possibilities first... and they know how to diagnose and treat lyme disease.

It sounds like someone recommended a good llmd? If so try to make an appointment with them as soon as you can.

One time before I knew I had lyme (but I had it) my liver enzymes were elevated and they couldnt figure out why. I believe lyme caused mine....other things can also cause it some are hepatitis, alchol, certain meds.

I really don't know how accurate hiv tests are or how long you have to have it before it shows up in the test.

But at least mention to the llmd that you see that you were exposed...if you know when you were exposed .... and take copies of your tests.

If you have lyme, with the right treatment your symptoms can be eliminated... (unless youve had it for a long time and have some damage (example: joints)

I've had it 17 years (been in treatment for a little over 4 years) and as far as they know I have no damage.

Getting an llmd is really important... The right type, amount and duration is essential to getting well and because of political issues many drs are not willing to treat lyme how it should be treated.