Thursday, April 3, 2014


As you may know, my last blog was about me and Lyme desease. Since it was January 22nd, a lot of things happened. I am going to try to make it as clear as possible, and chronologically so its easier to follow.

1 - January 14th - HOSPITAL - DOCTOR #1.
They didn't test me, but just by the description of my symptoms and the way I walked in, I was prescribed:
- Amoxicillin 500 mg, 3 times a day/30 days (ANTIBIOTICS)
- Naproxen 375 mg, 2X a day/30 days (Anti-inflammatory med)
DOCTOR #1 suggested, for me to see a Rheumatologist and to take an appointment at the free clinic, since I don't have Health Insurance.

That same day, I applied for Medicaid.
I also researched Lyme desease online and called my friends who had or have it and follow advices as best I can. NO SUGAR, NO WHEAT, NO ALCOHOL (I'm still sober so it's all good for me).
Drinking all sorts of detox teas and herbal concoctions to get rid of bad things.

2 - January 27th - HOSPITAL - DOCTOR #2 - (Free clinic)
After a long discussion with a foreign doctor, he realized that I am gay, so told me it's not Lyme but most likely something related to my sexuality such as AIDS.
I told him to test me for anything he wanted, but to make sure I get tested for Lyme desease.
He renewed the anti-inflammatory meds for another 30 days and gave me a follow up March 3rd.

3 - January 28th - HOSPITAL
They took about a pint of blood and told me to go home and continue the antibiotics and painkillers. For the results, the doctor will call me if anything is abnormal.

4 - February 4th
I called the hospital, as I was in pain and would have liked to hear about my results.
Answering machine. I leave a message.
2 days later, a nurse called me and said that since the results were inconclusive, to stick to my next appointment and to continue the treatment.

5 - FEBRUARY 11th I went to the hospital and asked for my medical records. I get the blood test results, and the first thing I see is that ALL the protein levels are very high, translating into an infection. Yet I have no wounds, I have not injured myself, but everything hurts.
The Lyme test is negative, so is HIV and the other weird things I was tested for.
It's also my last day of the antibiotics.
I began to take B12, Pro-biotics, and Vitamin D.

It's a snow day, so doctor #2 took the day off and I was to meet a new doctor.
She confirmed the infection based on the blood test results, but she refuses to believe it's Lyme...
I asked her to do anything to find what's wrong, and I mentioned how much my neck and upper part of my spine has been bothering me since my accident in 2010.
She prescribed NAPROXEN 500mg this time, for another 30 days, and a muscle relaxer BACLOFEN 10mg for 30 days. In addition I get her to prescribe an MRI of my spine and more blood tests.

The doctor also managed to get me an appointment with a Rheumatologist.

Blood test, another pint of blood out of me.

March 5th I celebrated 8 years of sobriety, but it's irrelevant to this blog. ;)

MRI of my neck and upper back. Easy.

March 7th, I decided to stop the muscle relaxers as I woke up nearly paralyzed and in extreme pain....
March 18th, I went to the medical records for my tests as no one called me since, and see that everything we tested for was negative.

9 - MARCH 19th - HOSPITAL - DOCTOR #4 and #5.
Once in the hospital, I was introduced to a doc (#4), who for about 30 minutes made me go over the story (All the way since April 2013, see previous blog...). He also made me undress, touched here and there, wrote about 2 pages in tiny characters. Finally he told me to dress up and wait in the room.
        Since dressing up takes me forever, as I cannot grab anything, and perhaps 15 minutes later, Doctor #4 entered with another man, older and more mature, and told me he is Doctor #5.
Doc #5 is the Rheumatologist every one was there to see that day.
For 25 minutes, I re-told my story that he also wrote over 2 pages, and as he touched the back of my knees, he turned to doc #4 and told him that something was wrong and that it shouldn't be so hard.
Doc #5 was the first to say, "Lets be aggressive, and figure out what is wrong with this young man. I have never seen these symptoms on someone under 45."

10 - MARCH 20th - HOSPITAL
MRI of my right knee.
XRay of both hands, right elbow, lower back. (14 in total)
Blood tests to check my iron levels and other things, to see if it could be an hemochromatosis.

March 28th, I went to the hospital and got all my blood results, and the reports of the MRIs and XRays. I also got the images on a CD, just in case...

The same day, I sent everything to my chiropractor in NYC, who is an excellent doctor, I only wish I could travel to see him. He looked at the reports and results, and is sending me some more tests to do and send back...

So at this point, I still don't know what I have, but I can tell you how I feel.
- My hands are almost always freezing cold, even with gloves inside the house. Only 3 fingers can bend almost as normal, the rest is too painful.
- My feet are very tender and sore, as if I had walked for days with bad shoes.
- My right ankle began to hurt MARCH 25th. It feels like a tendonitis. (Burning sensation inside)
- My knees hurt in the back mainly, but sometimes on the inside as well. Like a nerve.
- My right elbow hurts all the time and I can no longer stretch my arm. (Since July 2013)
- My left shoulder started to hurt in mid February.
- My middle back alternates from right to left pain. the more the back hurts, and the more everything hurts.
- Every few days, I get a high fever for a couple of hours, generally in the evening.

Again, these pains are constant, and vary from a 7 to a 10... Back in January when I was taking antibiotics, everything had gone down to about 5 and maybe 4 at times.
Also since the first round of antibiotics, my depression totally lifted.
My situation is as bad as ever, but I'm happy.
Drinking DETOX tea.

A friend who had lyme and caught it right away, was prescribed antibiotics. Since he was allergic to these, he was prescribed another one and he sent me the first ones.

Since APRIL 1st, I am taking doxycycline twice a day, as if it is Lyme that I have, this will be the only way to get rid of it.
I have more appointments with Doctor #2 on April 14th and May 15th with Doc #5.
Hopefully I'll survive til then.
Thanks for reading, and excuse my short replies to your personal emails and messages, but as you can imagine, typing is very challenging.
I love you, and please remember that you are beautiful.


  1. It saddens me to know that you are in pain, and yet you inspire me because you are have such a great attitude (always have) about everything. I miss you and love you.
    I pray that you find out what it is soon and will receive treatment for it.
    Get well my dear friend <3

    1. Thanks Sue-Yenn, it means a lot to me. <3

  2. Omg Saba...I hope you are better soon!

    1. Thanks Robert, I miss dancing the most, and I know you know how it feels. Love.

  3. Omgosh! Saba I hope you are pulling through ok

  4. Today is a DR appointment and I hope you get an answer today.
    I hope you are better today yet, and even more tomorrow.
    love you

  5. Saba!!! I'm so very sorry to just now be reading this ~ You know I'm a praying woman and I PROMISE you, my sons and I wilL CONTINUALLY lift and keep you in prayer. .. I love you, Friend!