If you fear, read this !

[John2038]

Hi,

during the last 2 months, I went through the following fears and symptoms:

Symptoms
repeating fever, dizziness, sweating, bpm >95, weight loss (4kg in 3 weeks despite good appetite), CD4 drop (543 to 361 in a month !), VL increase (1731 to 5002 and maybe more -not measured), swollen lymphs nodes, muscular, articulation and bone pain, abdominal pain.

What I have think I have got was:

1) Neutropenia
Because of a neutrophiles level of 290 (<500 = high danger)

2) Lymphoma
Because of swollen lymph nodes and nodules 6-12 mm in the neck and new near the legs

3) Sepsis
Because of the procalcitonium has slightly increase to reach the sepsis threshold, and because of the neutrophiles level.
And a rise of the neutrophiles count is a sign that an infection is going on (so no way to relax !)


I'm writing this post to give hops to those anxious with their labs results, as my story have a happy end despite true symptoms and bad counts !


1) I might not have a neutropenia because my neutrophils level have increase (from 290 to 1620 in 3 weeks).
I still have to follow-up this count, but above 1000, you can start to relax.
So if you fear having neutropenia as well, please don't loose hops !

2) I was fearing lymphoma because:
- the scan was showed few nodules (6-12mm)
- the symptoms
- the low neutrophilis level

I don't have lymphoma because:
- the bone marrow biopsy haven't shows any evidence of cancer
- The size of the nodule haven't change in size and are < 2 cm

Note
I'll do soon a PET scan to ensure that no cancer of any kind is developing anywhere in the body.

3) I might not have a sepsis (despite all the symptoms!) because after an increase of the procalcitonin parameter, it has finally fall to 0.11 ng/ml today (while it was still of 0.48 yesterday).

In more, last Saturday, I went to the hospital cause of:
- difficulties to breath
- tachycardia (bpm >95)
- high blood pressure (systolic = 140 diastolic = 180 !)
- fever (for 2-3h repeating)
- sweating (day)
- diziness

These symptoms were again present a couple of time this week.
So the moral is:
despite having all the symptoms, you cannot be certain of anything until you get the test results over an enough long period of time !

What you should know if you fear

Don't fear haha cause can be nothing as well (at the end of the day, we are poz, so) !!!

Be patient if you fear about something. Try to relax (not easy !) !
Even if you are having ALL the symptoms, still keep hops.

It might be nothing, benign, anxiety or whatever non related, like immune system adaptation (my case) !!!

Don't read too much on the net  !

Good luck to you too if you fear and God bless you !


What I have learn

1) In case of doubt, insist to get a specific treatment
In my case, I insisted to get a prescription of antibiotics (here Tavanic).
As the procalcitonin marker have double in 1 week reaching the sepsis level (but to finally drop today under this threshold!),
this antibiotics (among the strongest available, broad spectrum) have probably prevent a possible infection or sepsis (got all the symptoms since 4 days).

The reason why I asked to get antibiotics (I'm not under med otherwise) was because of the very low neutrophilis level, in order to prevent infection (as the risk at this level of neutrophilis is very high).

2) Lot of symptoms might be caused by anxiety

3) Test everything you think you should test
I have tested me against everything that sounded important to be diagnosed now, as I'm still having good counts (so as I can still support a treatment).
So I tested me against hepatitis, syphilis, ebv, smv, blood culture (results next Friday), scan, bone marrow biopsy, PET scan, blood tests.
Its a lot, but then you know exactly what is your condition and you can then relax for a while.
In case of bad result, the more early is are the test made, the more high are your chance to be cured.

4) Follow-up your condition yourself
Many time, the doctors are too busy. They might still look at your blood test, etc but sometime they have no time to compare the results all together, or to see their trend.
I do not say that this is always the case, but I believe you are the only one who might push the alarm button.
Many time, even if the doc is seeing the trend and all, he can take a wait and see position, so have a positive chat with you while interpreting the result. He surely knows what he is saying, but sometime, you can also loose time and it should be always your decision to start or not a preventive treatment, or launch additional test (like for me the blood culture).
My doc was thinking it is not necessary yet, but I requested it because of the increase of the procalcitonin level (and symptoms).
Yes, I can look ridiculous but at least, if I was right (eg developing an sepsis), I will have increase my chance to be cured immediately.

5) Pray
No comments.

COUNTS

FBC

Neutrophilis  x10^9/L (reference = 2.0-7.5)

Sept 26, 2007 26%   1.32
Nov 07, 2007   8.4% 0.29
Nov 14, 2007  14.3% 0.62
Nov 17, 2007  24.5% 0.77
Nov 21, 2007  28.2% 1.62

Lymphocytes x10^9/L (reference = 1.0-40.)

Sept 26, 2007 65.0% 3.29
Nov 07, 2007  74.8% 2.63
Nov 14, 2007  72.6% 3.14
Nov 17, 2007  63.4% 1.99
Nov 17, 2007  65.1% 3.74

Monocytes x10^9/L (reference = 0.2-1.0)

Sept 26, 2007  7%    0.35
Nov 07, 2007   14.2% 0.50
Nov 14, 2007   11.0% 0.48
Nov 17, 2007   9.3%  0.29
Nov 21, 2007   5.4%  0.31

Eosinophils x10^9/L (reference = 0-0.5)

Sept 26, 2007  2.0% 0.10
Nov 07, 2007   1.9% 0.07
Nov 14, 2007   1.3% 0.06
Nov 17, 2007   2.1% 0.07
Nov 21, 2007   1.0% 0.06

Basoophils x10^9/L (reference = 0-0.3)

Sept 26, 2007  0.7% 0.02
Nov 07, 2007   0.7% 0.02
Nov 14, 2007   0.8% 0.03
Nov 17, 2007   0.3% 0.02

CD4/VL

Sept 26 (pm):   509 / 1731 / 18.7%
Nov 7 (am):      381 / 5031 / 17.2%
Nov 12 (pm):    543 / ? / 18.2%
Nov 19 (am):    364 / ? / 24.29%

We haven't communicate me the VL for my last test, and this stressed me..