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.

Wednesday, January 22, 2014

Got Lyme!

To take my health and my high pain threshold for granted was a big mistake. For the past nine months, my body has fallen apart in many ways. It all began in April 2013.
I was on a short business trip to Europe, and life was good. Since my friends were taking Zumba, I decided to give it a try. It was so much fun, that I took the class again. But after the third class, I woke up at my friends' really tired and with a very high fever and strong headache.
After spending the day inside and resting all day, that night became hallucination-land!
I couldn't sleep, and the fever made me see all sorts of characters in the room with me.
In the morning I went to the doctor, and after a long examination, he said I had everything like the flu, without the flu... (Only doctors can come up with something like that).
After 3 days in bed with fever and headache, advil and aspirin 3 times a day, I got better and returned to NYC!
Attending the premiere of "The Sneaky Boa Brothers" was great and flying the next day to Mexico City to teach a 5 days dance workshop in "Ryver Dance Studios" with around 150 students.
That week was excellent, I danced 7 hours a day, and felt great. Tired yes, but great. The Saturday before departure, I woke up in the hotel room with a light fever, and the same knee pain I had the week before in Europe. More to it, it felt like my knees were encased in plaster and it was challenging to bend them.
All I thought was that after 5 days of teaching, I was a little tired, nothing serious. I returned home and all went well.
For the longest time, I've had a yeast on my skin and it looks like little red or brown islands on my torso. When 3 weeks earlier I had noticed a 3 inches spot under my belly button, I only thought that the yeast had found a better place to develop, and I treated the area the same way I treat my torso.
July was a busy month, as I was finishing the editing and the last version of SNOW, my first feature film. Apart from being tired and a little depressed, I woke up in the middle of the night, with a strong pain to my right elbow and my neck and middle back. Again, I only thought it was me getting old and something I had done in my weekly dance classes.
In any case, I did see a wonderful chiropractor, who fixed me every week til September.
The pain would go away for a day or two, but returned, slightly stronger each time.

By September, people around me speculated that it was the fact that I teach dance twice a week, or that I ride my motorcycle to work (300 miles a week on average).
Well, it was time for a vacation, and off I went to France and Italy for almost 3 weeks, and where I didn't dance nor ride a motorcycle. In fact all I did was eat and visit museums.
The pain continued as if I was working out every day.

I returned home and after a one week cruise for my birthday at the end of October, I began to be extremely depressed. Sad, dissatisfied, crying most days and night, not wanting to live, not seeing any light around me. And for November and December, it was coupled with new pains in the hands, the feet and by then, I couldn't bend my knees and had to change some of the exercises in my class, to be able to demonstrate them to my loyal students.
Of course, more speculations were shared by people around me: "you're getting old," "It's arthritis," "you need a break, you work too much."
It's true I tend to overwork myself, and I always cease the day as if it was the last, but I know my limits and I have my days (Rarely) where I do nothing and watch movies all day.

2014 started with a lot of snow, and bound me to stay home. On the 5th, I went on another cruise (My roommate is awesome and always invites with him ;0) and that's when things went nuts.
On Explorer with the cruise director and staff - Awesome people!
The first 3 days were okay, I was still in pain, but was able to move around and even dance (Through the pain...Only dancers can do that). On the 4th day, I woke up with so much pain, I could barely walk and forget about dancing. The bottom of my feet, my knees, my middle back, my shoulders, my right elbow, my hands and my neck felt as if they were connected to an electroshock and randomly sent me charges. It was not fun, I couldn't sleep, sit, walk...
A woman I had met at the Zumba class saw me sitting at one of the cafe, eating a granola bar, and asked me what was going on? I explained to her that my body wasn't right and that I would go to the hospital as soon as we were on land. After describing my symptoms, she said to make sure to get tested for Lyme desease, as it is common to have only one joint affected.
Reading and researching info on Lyme.
Last tuesday, I drove myself to the emergency room, and explained why I was there. Before I could say anything, the man said it sounded like Lyme.
A few minutes later, a nurse cam and asked me what was wrong. I explained. She said it sounded like Lyme desease. Finally the doctor comes, and after looking at me (In my underwear), and listening to my problems, she said it sounded like Lyme.
Now, you should know that I don't have Health Insurance, so I asked what my options where:
1 - The hospital no longer does the Lyme desease test, as it is followed up by a doctor. The option is to go to an infectious desease specialist and get treated there. (NOT happening, too expensive...)
2 - Go to a rheumatologist  as it might not be Lyme, but if it is, he could treat it. (NOT happening, even more expensive)
3 - Get a prescription as if we knew I have Lyme and treat like that. (HAPPENING).

So I left with a prescription of 4 weeks of antibiotics and anti inflammatory medication without being tested. How wonderful to be a human in 2014.
Luckily the internet is full of resources and many of my friends had Lyme, so after spending hours on the phone and reading hundreds of blogs and such, I am treating myself.

I managed to get an appointment at the free clinic, on the 27th, and I will make sure they do blood work and xrays of my neck and back.
This is what I've done this week (WEEK 1)
- Antibiotics (3 a day Amoxicillin 500mg)
- Anti inflammatory (1 to 2 a day Naproxen) Sometimes I don't even take them.
- Vitamin supplement (One a day - Generic brand)
- Glucosamine (1 s day - Also generic)
- NO sugar (I miss my muffin and nutella in the morning)
- NO honey, maple syrup, agave (It's still sugar...)
- NO coffee (Tough too)
- NO bread, pizza, wheat.
- Lentils, beans, carrots.
- Garlic (1 head a day - I always eat garlic, so it's easy for me)
- Flax seed (1/4 cup a day - in my salad, soup...)
- Hot tea (Green, detox, anything to cleanse)
- Hot tub bath {103 degree helps breaking the biofilm protecting the bacterias} (Lucky to have a roommate with a hot tub, I know)
I miss Nutella!
That's all so far, but after 1 week of this, I actually feel a bit better. I'm trying to find homeopathy remedies from my European friends, and more supplements to take, but trying to keep it a very low budget. (Yeah I ain't got no money).
At this point, I still don't know if I have Lyme or not, but til I'm certain, I'll continue the treatment.
I miss teaching dance and talking to my wonderful students, I miss the city, I miss my acting classes, and I miss Nutella. But I feel better and hope to get ready to go soon.
Thank you for reading and remember that you are beautiful.