posted 01-04-2003 04:52 PM            

1. Overweight
2. Sleep Apnea (on C-pap machine)
3. High Insulin (was treated 3 years ago and level returned to normal after medication and diet) Insulin level was checked in May 2002 was fine.
4. Triglyseride levels ( slightly elevated but would come down with low carb diet)
5. High Blood Pressure (controlled with Tenormin for 15 years 50mg)
6. Had a couple attacks of gout (take Allopurinol 100mg no further problems)
7. Sexual History Divorced Heterosexual, No STD's 3 girlfriends over last 10 years.

July 15, 2002

I made an error in judgment on this day and had a low risk exposure with a woman.

July 28, 2002 (Symptoms started and went on for 2 months)

From this day on is when my health changed: None of the symptoms below had I ever had if my life before.

1. The outside of my lips changed: sores and at the corners of my lips cracks and inside my mouth a sore appeared.

2. When I took a shower the water burned my eyes. Water I would drink from my kitchen faucet would taste different (sometimes it would taste over chlorinated some times sweet.)

3. Joint pains started in feet and eventually severe in elbow and knee

4. My body for the next 8 weeks went through a violent reaction.

5. Sweating, I never had a fever but my head would just start sweating during the day to the point that my hair was drenched.

6. Watery diarrhea, This was everyday usually once or twice a day

7. Dry mouth, sore throat, burning tongue, Everyday and at times would wake up in the night without any saliva in my mouth.

8. Glands or lymph nodes in the body felt swollen.

9. Mucus membranes more sensitive and feel different

My Symptoms Jan. 2003
1. A cold that never goes away, phlegm and nasal,sneeze
2. Eyes burn and are blurry sometimes
3. Bowel movements are loose and never returned to normal
4. Some mild joint pain
5. Athlete's foot worse than ever had it
6. When I get a cut , seems to heal slower.
7. Still have dry mouth some mild burning tongue, mouth sores
8. chest feels funny like an infection is going to settle there

My take: Is that I contracted a virus, it made me very ill for 2 months, my body has not cleared the virus just gotten used to having it around... It is a virus that has depressed my immune system in some fashion... But the only answer I get is that I have some virus and will get better. It has been 6 months and I have not gotten better, when this all started I did not have a cold everyday or eye problems everyday. My concern is that I am not being treated or monitored for an immune disorder by any medical professional based on the fact I am HIV negitive and that my health will continue to detoirate

The doctor visits and the blood tests.

When my body had such a violent reaction , my first thought of was that I was in the acute infection phase of HIV. So during the past 6 months I have had probably 50 office visits and 25 blood draws from internists, rheumotoligists, and infectious disease specialists. I have kept copies of all of the individual test results. {you can probably be sure if there was a blood test available(std's, autoimmune, infectious diseases) I had it done}

Selected Blood Tests:

HIV Results: over the course of 6 months 8 Hiv 1elisa tests, 1 Hiv 2 elisa test ,
1 Hiv 1&2 & strain O home test, 1 pcr dna branch test , 2 RNA viral load tests.
All tests negitive

Sed Rate:

September 50
October 30
November 20
December 10

CD 4:

August 807 54 %
September 658 51 %
October 767 54 %
November 873 51 %
December 637 54 %
January 658 51 %

C Reactive Protein
October 2.3
December .50

Herpes 6
Herpes 2

Insulin and Trygliserides
December extreamly high
taking: glocophage

posted 01-06-2003 12:54 AM              

YOU DO NOT HAVE HIV.

You are major-league stressing, which more than likely accounts for almost every symptom you've listed.

Schedule your next appointment with apsychiatrist, and do not wait another second. I rarely ask people to exclusively see a mental health professional, but in your case it is both warranted and necessary. Doctor's office and lab copays are not cheap, and I'm sure you're driving yourself right into the poorhouse.

posted 01-06-2003 11:55 AM              

However, and this is a feature of hypochondriasis, you are not going to believe us.

I would be more specific than the previous poster: you don't need any old shrink. You would benefit from seeing a Cognitive Behavioural Therapist. CBT is - to be frank - one of the few 'talking cures' that has been proven to be effective, and it will help reshape your thoughts so they are less harmful and more grounded in reality.

posted 01-06-2003 04:58 PM            

Two weeks after contact I became very ill with:

1. The outside of my lips changed: sores and at the corners of my lips cracks and inside my mouth a sore appeared.

2. When I took a shower the water burned my eyes. Water I would drink from my kitchen faucet would taste different (sometimes it would taste over chlorinated some times sweet.)

3. Joint pains started in feet and eventually severe in elbow and knee

4. My body for the next 8 weeks went through a violent reaction.

5. Sweating, I never had a fever but my head would just start sweating during the day to the point that my hair was drenched.

6. Watery diarrhea, This was everyday usually once or twice a day

7. Dry mouth, sore throat, burning tongue, Everyday and at times would wake up in the night without any saliva in my mouth.

8. Glands or lymph nodes in the body felt swollen.

9. Mucus membranes more sensitive and feel different

I actually think there is a unknown virus that is being spread by sexual contact in addition to the known STD's I am not the only one with this problem.

posted 01-06-2003 05:04 PM            

letter # 1

CD4=140, ELISA Negative, why?
Posted: Sep 19, 2002
I am in a strange situation--I had a sexual encounter with a sex worker 1.5 years ago, then developed typical ARS within 2 weeks. Soon my girlfriend started to have similar symptoms. We've been tested negative by ELISA HIV 1/2 and PCR RNA, bDNA, P24 many times over the years and all negative/nondetectible. However, my CD4s keep going down from initially 800+ to 420 to a recent 142 (CD4/CD8=.25) during the 18 months period. Same trend for my girlfriend: CD4 620, 358, and 280 at the last check-up. I've lost more than 35 lbs in a year, and my girlfriend has all sorts of infections she never had before (yeast, skin, eye infections, herpes, medication don't work well). What's going on? Our internal medicine doctor refused to talk about the possibility of HIV due to repeated negative results, but he could find no other causes either. My girlfriend saw one ID doctor early on, but she told her that CD4=620, CD4/CD8=.7 is perfectly normal and refused to take a further look at other possibilities. What should we do? Waiting to die? My health condition is going down quickly. We are hopeless. Please help! Miserable couples

Letter 2

Re:CD4 140, Elisa -ve, WHY??
Posted: Sep 24, 2002

I am not the original poster of the 1st mail but I read it with great interest. I unfortunately find myself in a similar situation described in the post. 12 months post a condom break with what I didn't realise at the time was a HIV+ infected person I am still testing -ve on Elisa 1 and 2, P24 antigen, bDNA, RNA PCR and DNA PCR. Normally of course I would take great comfort in these 'conclusive' test results. However, I have monitored my CD4 throughout the 12 months and it has fallen from 680+ (2 weeks post exposure) to 370 (6 months post) to 255 (12 months post). I also suffered from an ARS type illness 1 month post exposure and the swollen glands have persisted to this day.
Before writing this post I referred to the John Hopkins 'Medical Management of HIV' publication and read about Idiopathic CD4 Depletion Syndrome - it says that that several conclusions can be drawn from the experience of patients with this syndrome including 1) they lack risk factors for HIV infection, and 2) CD4 cell counts tend to remain stable

These two factors clearly do not apply to my situation. I am very concerned that I will not be treated for HIV because of the negative test results and that I will in a short period of time see my CD4 counts fall below 200 and thus suffer from an OI.Whilst I realise this is a sensitive subject I would very much value your opinion in terms of what I should do. Are there any other tests that I could take and would you recommend trialling HAART to see if my CD4 responds?

Please do respond - I do not know where else to turn

posted 01-06-2003 05:08 PM            

scaredspittless
Junior Member

posted 01-10-2003 08:27 PM            

I have been trying to hunt down a cause for all my symptomatic concerns over the entire last year...now it seems others are going through the same thing.

posted 01-20-2003 01:55 AM              

It's fairly obvious, even from a layperson's point of view, that you don't have a medical problem. So you may wish to schedule your a follow-up appointment with your psychiatrist so you can get an analysis and an appropriate treatment.

posted 01-20-2003 12:49 PM            

Its normal for CD4 counts to fluctuate anyways. A cold can brind down the numbers.

Yes I agree that both of you might have some sort of virus, but its not hiv related.

posted 05-03-2003 07:07 PM              

Regards -

quote:

---

Originally posted by wkudon:
My Health before July 2002
I have had complete physicals yearly and my past medical history includes:

1. Overweight
2. Sleep Apnea (on C-pap machine)
3. High Insulin (was treated 3 years ago and level returned to normal after medication and diet) Insulin level was checked in May 2002 was fine.
4. Triglyseride levels ( slightly elevated but would come down with low carb diet)
5. High Blood Pressure (controlled with Tenormin for 15 years 50mg)
6. Had a couple attacks of gout (take Allopurinol 100mg no further problems)
7. Sexual History Divorced Heterosexual, No STD's 3 girlfriends over last 10 years.

July 15, 2002

I made an error in judgment on this day and had a low risk exposure with a woman.

July 28, 2002 (Symptoms started and went on for 2 months)

From this day on is when my health changed: None of the symptoms below had I ever had if my life before.

1. The outside of my lips changed: sores and at the corners of my lips cracks and inside my mouth a sore appeared.

2. When I took a shower the water burned my eyes. Water I would drink from my kitchen faucet would taste different (sometimes it would taste over chlorinated some times sweet.)

3. Joint pains started in feet and eventually severe in elbow and knee

4. My body for the next 8 weeks went through a violent reaction.

5. Sweating, I never had a fever but my head would just start sweating during the day to the point that my hair was drenched.

6. Watery diarrhea, This was everyday usually once or twice a day

7. Dry mouth, sore throat, burning tongue, Everyday and at times would wake up in the night without any saliva in my mouth.

8. Glands or lymph nodes in the body felt swollen.

9. Mucus membranes more sensitive and feel different

My Symptoms Jan. 2003
1. A cold that never goes away, phlegm and nasal,sneeze
2. Eyes burn and are blurry sometimes
3. Bowel movements are loose and never returned to normal
4. Some mild joint pain
5. Athlete's foot worse than ever had it
6. When I get a cut , seems to heal slower.
7. Still have dry mouth some mild burning tongue, mouth sores
8. chest feels funny like an infection is going to settle there

My take: Is that I contracted a virus, it made me very ill for 2 months, my body has not cleared the virus just gotten used to having it around... It is a virus that has depressed my immune system in some fashion... But the only answer I get is that I have some virus and will get better. It has been 6 months and I have not gotten better, when this all started I did not have a cold everyday or eye problems everyday. My concern is that I am not being treated or monitored for an immune disorder by any medical professional based on the fact I am HIV negitive and that my health will continue to detoirate

The doctor visits and the blood tests.

When my body had such a violent reaction , my first thought of was that I was in the acute infection phase of HIV. So during the past 6 months I have had probably 50 office visits and 25 blood draws from internists, rheumotoligists, and infectious disease specialists. I have kept copies of all of the individual test results. {you can probably be sure if there was a blood test available(std's, autoimmune, infectious diseases) I had it done}

Selected Blood Tests:

HIV Results: over the course of 6 months 8 Hiv 1elisa tests, 1 Hiv 2 elisa test ,
1 Hiv 1&2 & strain O home test, 1 pcr dna branch test , 2 RNA viral load tests.
All tests negitive

Sed Rate:

September 50
October 30
November 20
December 10

CD 4:

August 807 54 %
September 658 51 %
October 767 54 %
November 873 51 %
December 637 54 %
January 658 51 %

C Reactive Protein
October 2.3
December .50

Herpes 6
Herpes 2

Insulin and Trygliserides
December extreamly high
taking: glocophage

[This message has been edited by wkudon (edited 01-21-2003).]

---

posted 05-05-2003 08:35 AM            

Let me throw in only one thought for one symptom:
Up your allopurinol to 200 mg/day. Those foot pains, later joint pains sound like gout again. (If it's not in the big toe, doctors simply don't see gout...Myfirst several bouts were in the instep and ankle...THEN the podagra)

I think you can stop going from doctor to doctor, though. They won't devise any new tests anytime soon.

Maybe ONE exception:
Have you done the autoimmune battery (ANA first and if positive, the battery of tests to exclude SLE and it's ugly sisters, RA, scleroderma...YADA YADA)