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itsmylife 07-16-2007 11:22 PM

My appt today with Doctor Raxlen
Well, today was the day, July 16th, a day for which I was able to go in and finally see the "Master of Lyme disease and Confections." I heard about him years ago, he was seen on an episode of "Mystery Diagnosis" with regard to his vast knowledge of the BB infection and its co-infections.
I considered contacting him last year when I felt I was at an all time low, during my divorce and chronic illness. But when I found he was located in Stamford CT, an hour drive in an unfamiliar area for me and did not accept insurance, I put it off to the side and that option eventually faded.

Recently, since I hit an all time low, I remembered this man and looked up him.
I contacted his office and learned there was a cancellation and that I would have the ability to be seen by him in four weeks. During the my discussion with his staff, I was alarmed to hear his fee was 900.00 for a new patient (first visit, then down to 250.00 for following visits) and even more alarmed to learn he moved to NY city.

The last time I was in NY City was when I was 10 years old back in the 80s and the memories of that were so disturbing. The street people, the beggars, the smell of urine, the subways with the lights going off and on, more often off. I thought, between the cost and the overwhelming experience I was in for, this would not be an option.

Something inside of me said, it doesn’t matter. Cost doesn’t matter, distance doesn’t matter, confusion of feeling uncomfortable doesn’t matter if there is the possibility I can be well. to be normal, to have a real life without feeling so bad, so I spoke with Dr. Raxlens wife and just asked her some questions to make me feel a little more at ease....I asked things like, why such a high fee for people so ill, and she answered gently, many people that visit us are so ill, they have many, many multiple illnesses, they need them to be studied by doctor Raxlen. Some people need much paperwork to be drawn up and faxed to multiple locations, repeatedly sometimes, but I really think Rodney, that we can make you well and get you there. I was sold and scheduled the appt

I decided the best and least stressful way for me to get there was by train. Though I have traveled the country by plane, this was another form of transportation I needed to educate myself. My brother in law, a manager of a real estate firm suggested taking Metro North from Union station. This really didn’t mean a whole lot to me. I started researching the address of the station, looking at pictures on the internet so I would recognize it and ran a practice run last week, where I drove there, learned where the parking lot was and walked through the station. I purchased some tickets for the trip but realized, hey I think I need to know what track number the train leaves from. This isn’t something posted on the Internet. So I consulted with my brother in law and he assured me, just get there and it will be posted on the wall.

So now I had my tickets for today and I had a schedule from the Internet.
I left early today and when I arrived at the parking lot it was blocked with a sign that said "full." My heart sank. The sign directed me to park on another street I didn’t know how to find. I drove ahead about a block and there was an entrance to the same parking lot I needed and it wasn’t blocked. I flew in and had to drive up six levels to the very last one where there was no covered parking. I was thrilled to get spot.
I got into Union station, looked at the board, the track number was listed and I was on the train in minutes, with a nice roomy spot.

An hour and 50 minutes later, we reached Grand Central Station. People piled off the train like hoards of ants all moving towards the same place and I just followed along.
It all led to a giant coliseum and I was now just wondering how to ensure I would find my way back to the right train that night. I had some extra time, picked up a schedule and sat and studied it. I knew there were plenty of trains leaving this eve so it didn’t matter what time I left me appt. Schedule tucked away in my stop and shop bag along with my lab test results I headed out towards 42nd street when I realized, I was probably going to need more then 20 dollars for cash.

I walked back into the station and found all of these machines. The displayed “Buy tickets” ATM/credit cards.
I thought, great I can buy tickets and get money out of the ATM machine. Things weren’t really working like and ATM machine for me though and a guy with spiked hair looking distressed walked up behind me and said “The bank in on the other side, you can’t get money here.” I thought, perfect, walked around the way and got the cash. Now I was on my way. Out to 42nd street I went.

As I walked out into the sunlight, there was a barrage of yellow taxis, and an explosion of people. Lots of very young people, lots of very pretty people, dressed so beautify. People seemed to look very happy. I looked across the street and saw group of Asians all wearing the same gray suit. There must have been 20 of them both men and woman, they looked like they were in uniforms.

I just stood there watching looking at the volume and variety of people. There were some men there standing near cement posts and I was wondering what they were doing…they had id badges on and I thought they were taxi drivers but they did not have cars.

I stood there trying to decide if I should go to the front of the taxi line or if I should just hop in one right in front of me when this young black man came riding up near me with a bicycle. But this bicycle had a big roomy seat in the back, it reminded me of something an Egyptian slave might transport a queen in and I couldn’t help but laugh inside as I thought it looked cruel to have someone peddle their customers around the city in that.

I was listening the the man on the bike and he was trying to sell his services to some other potential customers and they just laughed and walked away and I felt bad because he wanted to make money and work for it but wasn’t being taken seriously. That made me change my mind about the way I felt and I said to him, how far is 123rd 79th ST?"
He said in a French accent, “Oh, that is a longgggggggggg way.” I said, I don’t want to kill ya, but if you want the business, you’re hired. I said “how much?” He said 20 dollars or 25 if you want to tip me. I said “sure” and climbed into the back.

Now the view from in the back on this seat was spectacular, I had an open view of all the people to the left and right, the buildings, the sounds and could feel all the other vehicles touching us…and when I looked up the skyline was fantastic. This guy must have been about 20 and talked to me about coming over from France and how he was just planning to make a living for the rest of the summer and go home to attend school.
I told him I had come from CT to see a doctor and he said “Oh, you are sick?” And I felt odd. I said “Yes” reluctantly.

This guy whipped in and out of cars with no fear or reservation, we flew down the street and one woman at the end of a block stood in front of him with a camera, and I heard a beep and a click. He turned to me and said “She wanted that picture of us you know!” as he rang his funny silly bike bell. And I said, “Nooooo, she wanted that picture of you.” And he insisted, “No, it was US!”

We continued on as I snapped a couple of photos of this hard working young man's back against the skyline. I couldn’t help but feel both amazed and envious this ride really wasn’t so tough for him but I urged him to stop so I could buy him some water. He kept insisting he move on. We made a couple of turns and he said “We are crossing now” and I looked up to see a spectacular sight, it was a stone looking bridge overpass with trees and grass and was like an oasis. We had arrived at Central Park and I urged him again to please stop so I could buy him something to drink.

We found an area selling food and beverages, I handed him a 20 and said buy whatever you want and he said “Is this my money or your money?” I said “Yours!” He took and chatted with someone he knew and after five minutes returned with the same 20 and handed it to me. He spoke French to another Petti cab driver and asked him for a swig of his water. I realized he didn’t want to spend any of his money on water.

Back on the road we were again flying through traffic and we arrived at 79th street. He was exhausted. I said, wait here, and let me buy you a drink. We happened to be in front of a store with some Snapple coolers so I headed in that direction. It was well past lunch and they had some meals on display with some rice and steak which I politely asked for.
I paid for the meal and water while they cooked it and walked back to the guy on the bike. I said “Heres your water, and gave him thirty dollars. I said “I’m Rodney, What’s your name.” “He said “Mel” with a big smile. I said, “Mel, that was a LOT of fun, if you are in the area, come back between 5 and 5:30 PM. He said I would like to! I’ll stay in Central park and will come back.

Turned out, my meal was Indian and it was lamb instead of steak, but one of the best meals I have had in years. I was able to sit there and relax knowing I was early for my appt.

3:30, I walked into the building and realized I needed to be buzzed in. I just starting pressing all of the buttons hoping someone would let me in. I was starting to feel tired.
The door buzzed immediately and I walked into the door for Dr. Raxlen’s office.
One of the girls gave me a strange look, the kind of look you get when you know you’ve done something that doesn’t normally happen. As it turned out, I passed the waiting room and walked right into the office area. She could see I was a little disoriented I think and tried to hide her judgment. I was a little embarrassed and sat on the couch. I figured hey, they probably see all kinds of people with conditions worse then me so “Don’t worry” I thought.

I waited a while and out emerged a young pretty girl with her parents. The girl was talking to her dad about how wonderful the word “remission” was and I couldn’t help but feel like a freshman entering high school as the senior walked off with their graduation cap.

Her mother sat down in a seat next to me while they wrapped up and as he pulled the cash from her wallet she gave me a “look.” I smiled and said “it’s tough.” And that opened it up for conversation. She wanted to know my story, she listened with such empathy and her eyes welled up. She called to her husband “honey, this man has been sick for twenty years”

This man walked over to me and you could just tell, he wanted me to tell him everything. It was like this war he had been through and felt a kinship. You could see he didn’t care about paying the money for the visit, he was so thrilled his daughter was well again.
Well, this girls mom held my hand and very gently said I will pray for you and it was very nice meeting you. I was trying to hold back the tears. Our little chat in the waiting room was different. That woman wanted so badly to make my situation go away. She had already lived it, and knew the insanity of it all. She believed me and knew how sad it is to be in such a situation of helplessness. In a way, I felt like she wanted to take me in and that made me cry as she left. And I thought, oh no, I’m not going to be able to get through the appt without crying in front of Dr. Raxlen.

There he was, gray beard and all just like the pictures I had seen. His assistants said, Dr. Raxlen is ready to see you, and I felt as though I was Dorothy on the way in to see the Wizard. Would he believe me, would he listen to me, where do I even start, I asked myself. The girl said behind me, “Just walk towards the stained glass room at the end.”

I found myself in his office and reached out to shake his hand. I couldn’t help but recognize a good firm handshake and sympathetic eye contact. He looked to me and said why we don’t we go outside; it’s such a nice day.” And as we walked through the door in his office, there appeared this landscape of beautiful trees and green bushes with a table and two chairs.

We sat and Dr. Raxlen said, So Rodney, what’s going on” kindly…in a very supportive and concerned tone. And without any thought or reason, I just cried. I couldn’t talk, I just kept crying. And he would ask a question and pause, and I could only get out one or two words while uncontrollably weeping.

I could not help but wonder what this man must have thought while I floundered in such a desperate state.

-I'll finish up tomorrow.

cbsoapfan 07-17-2007 03:37 AM

Re: My appt today with Doctor Raxlen
So since I got this dreaded disease, I haven't been able to read much. That was a very compelling and interesting day. I can't hear to read the rest of it. Thank you for sharing.

FlaGal1 07-17-2007 05:17 AM

Re: My appt today with Doctor Raxlen
How very well put together, I could see in my mind's eye what you were seeing as you zipped thru the City on the bike. It read like a good book you could not put down, and I am anxious to hear the rest of your visit!

sleeperwoken 07-17-2007 05:33 AM

Re: My appt today with Doctor Raxlen
WOW! Just WOW is all I kept saying! What an amazing experience! You are so brave to do all that new stuff all alone with the way that you have been feeling. It's really hard to get the energy and keep your sense of direction. Just the stress of finding your way and being on time is enough to make anyone exhausted. After a car drive, train ride, bike ride and walk, I am so amazed that you were able to do anything at all! You probably completely depleted your mitochondrial energy, so give yourself a few days of rest to recover.

You are telling this story so well, I felt like I was right there with you. Honestly, I wish I could have been for support and all, but I have been praying that God would be with you and that He would guide your steps. You're going to get well, Rodney!

Please tell us the rest as soon as you are able, the anticipation is killing me...

J0J0 07-17-2007 08:14 AM

Re: My appt today with Doctor Raxlen
[COLOR="Purple"][B]I agree with Sleeper....WOW!!!....sitting here having my morning coffee and I got to take a trip with you through the train statioin, the city and needless to say taking a ride with this Good Looking guy from France...yehooooooo!!! ;)

But now I am also sitting here tears welling up in my eyes...I hope you were able to talk to the doctor...Bless your heart!! I think we all know the pain you are going through....

SO....can't wait to hear the rest of your story...I hope this doctor can help you Rodney!!

Waitng to take the trip back to the train statioin....:)

You are such an incredible man ....person...human being....don't you ever doubt that!!

Thank You for sharing...


:D [/B][/COLOR]

ticker 07-17-2007 01:25 PM

Re: My appt today with Doctor Raxlen
Hi Rodney. I am glad you got to see Dr. R. I hope he has a plan of action for you. Update more when you can!

itsmylife 07-17-2007 02:00 PM

Re: My appt today with Doctor Raxlen
I'll definitely update tonight after my kids are back home and I've taken "the bath."

itsmylife 07-17-2007 11:16 PM

Re: My appt today with Doctor Raxlen
I managed to start talking about how I was twelve, and I had this acute onset of low grade fevers, eye pain, stiff neck and headaches.
I explained the first doctor I saw told my mother he felt I might have been making it up for attention purposes. I explained the condition persisted for many weeks and my mother brought me in to a second doctor. This doc diagnosed me with Viral Meningitis. I stayed for a weekend in the hospital, and immediately after my lumbar puncture the head pressure disappeared, and so did the other acute symptoms. The only med I was treated with during the hospital stay was Tylenol and was sent home after three or four days.

I explained "That’s where it all started." "The bizarre symptoms." "When I returned to school I noticed when I tried to concentrate it felt like my focus exploded into little pieces. It felt like something in my brain would short circuit when I attempted to read. I went through my first experience with unexplained anxiety the following year and became aware of a bad taste in my mouth. Then the fogginess the year following along with the dizziness and fatigue. The dry sinus congestion I was plagued with for years and how I had two turbinate reductions which did nothing to resolve the symptoms. I talked about getting lost in the store- being unable to remember how to find my way out or how I would open the refrigerator and just stand there for several minutes trying to remember what I wanted, then remembering, then looking and loosing the thought of what I wanted, over and over and over again. I explained this could happen six or seven times. Sometimes, I'd just give up and walk away from the fridge and come back a few minutes later, or I might have to kneel down and just started taking one thing at a time out of the fridge in order to find what I was looking for.
Dr. Raxlen listened intently and allowed me to keep going. He didn't interrupt.
I talked about my job and how I was out last year for three months to deal with my divorce situation and this year, eight weeks for an ACL repair and now six weeks with my current situation. I explained I was so low that if someone said "Go to work or I'll shoot you in the head, I would say "Go right ahead."

I reached in my stop and shop bag and pulled out my supplements and explained how the Oleda Veggie caps have allowed me really to get as far as I have. Without a word he unscrewed the cover and popped one in his mouth. He turned the bottle on its side and read/said.. "Hmmm, broccoli, carrots, and spinach."

Now typically when people see me take these supplements, whether it be people I work with or a family member I generally get the feeling they are wondering "Whats the deal with this guy?" To see a doc come to that level beside me like that was very, very satifying.

He said, "Right now we need to find a way for you to hold onto your home." He had some good suggestions and I liked the fact that he was not caught up with the years of symptoms I just dumped on him. He was very personal and had a very refreshing, as they say "down to earth" feel. It felt like we were two guys, two friends trying to figure a way to build a business and make it work.

Finally we discussed the positive lab results for both IGG and IGM bands, the adrenal disfunction, low output of Testerone, etc.

Finally, Dr. R. said "Rodney, can you tell me what your expectations of today's visit are?"
I said without hesitation, "I need you to save my life."
His eye brows lifted and I had no idea what he was going to say.

"That's..... a lot."
"Let’s go" he said.
Up we stood and made our way towards the office again.

I couldn't help but notice loose pills and vials of all different colors and shapes sitting in open containers. He asked me to open my left hand and in it, he placed a vial that read "b burgdorferi” then he had me raise my right arm and asked me to resist as he pressed towards the floor. Then he placed vials of various medications in my hand and I held them in my fist. We tried again, with me resisting and I would not have believed it if someone told me this, but I was rock solid in resisting him with most of the vials. He would take the vial back and when I tried to resist, I had no strength again. He said "amazing, isn't it?" And I said "I wasn't sure if it was you, how could that possibly be?" I said "Nothing went into my blood stream." He said "Bioresonance" and I immediately remembered I read much about this in Doctor Jernigan's book. "OK" I said and he could see by my expression, there was no explanation needed.

He felt based on our discussion outside about the severe fatigue and my reaction to the vial of babesia, this is a coinfection that has been overlooked or not tested by a reliable lab.

I left his office and stepped into the next room. One of the assistants drew several vials of my blood and Dr. R asked her to draw a syringe and show me how to inject B-12.

Doctor R worked away in the other room. He began writing scripts for the following-

IV Rocephin with PICC line.
B-12 and syringes
Brain SPECT scan
Neurocognitive functionality test

I was also handed a list of nutraceutical's which are available for purchase online.
On my way out, Dr. R came to the open window area and reached through, shook my hand and said "Just hang in there Rodney." I knew then, he had absolutely every intention to help me out of this and I stepped out onto the busy NY pavement and headed home.

J0J0 07-18-2007 06:49 AM

Re: My appt today with Doctor Raxlen
[COLOR="Purple"][B]Now that is truly an AWESOME (man) doctor!!

I am sooooo thrilled for you that you took the Bull by the horns and got yourself to see this man. A very long day for you but a very successful one!

When do you get your picc line in? And for how long?

Rodney things are truly going to go up hill for you soon...It is going to take time but there is a light at the end of the tunnel now... Boy I am going to need to invest in tissues reading your posts..;)

I've got you in my thoughts and Prayer's!! Keep fighting, your going to win! I hope you and Doc R thought of some good ideas on keepin your home..I see alot of myself in you through this past year...You will make it!

Hugs to you!!!

:D [/B][/COLOR]

itsmylife 07-18-2007 12:18 PM

Re: My appt today with Doctor Raxlen
Thanks so much for your thoughtful input Jo.

This morning was quite stressful as my company left a message on my voice mail that they expected to receive paperwork from the doctor on Monday and needed something immediately. Dr. R's staff was kind today when I called them but explained they need two weeks to finish the letter to my employer. From my employer’s position, they have no idea what is wrong with me other then depression for the past six weeks and a knee surgery six months ago, followed by an episode of depression last year which lasted 12 weeks during my divorce. So from what I can tell, they are probably very frustrated for sure. I had to call the office back several times to beg them to get the letter out today, which they confirmed completing. All I can hope for is the letter was not rushed, and was put together in a way that the employer can recognize this is a very serious illness and this is not an employee who is sandbagging.

Jo, as far as the PICC line, it's six weeks. I'm waiting for a call from the hospital. I have the kids this weekend and don't dare start even the oral antibiotics until Monday. I've taken Zithro in the past for strep throat and within two days it felt like electricity was running through my brain, a lot of misfiring and like I had 10 cups of coffee. Even though I had strep, I had to stop the Zithro because of the I expect I'm going to be a mess for a while. We'll see. I saw my Psychiatrist an hour ao and he is willing to bump up my xanax which will help with that awful reaction I think. I'll keep everyone posted.

sleeperwoken 07-18-2007 07:07 PM

Re: My appt today with Doctor Raxlen
Fantastic! I am so happy for you!!! I hope this regimen works fast for you. Doctor Raxlen sounds like a really interesting person. I think this bioresonance sounds a lot like Autonomic Response Testing (ART). I have seen it done, very interesting stuff. I am assuming that Dr. Raxlen knows you are taking xanax along with all those things he prescribed, yes?

So did your bike ride wait for you?

ticker 07-18-2007 07:13 PM

Re: My appt today with Doctor Raxlen
Rodney, I am so glad you like the doctor and that you have a plan of action.

When taking Mepron, make sure you eat something fatty with it (peanut butter, cheese, etc.) or it will not be absorbed properly. Do not take COQ-10when you are on Mepon.

In case you did not know, there is a great sleeve you can get so you can shower without getting the site wet. It is called a Mid-Arm Protector and you can get it at Brown Medical.

When do you get your PICC line?

Good luck with your treatment!

itsmylife 07-18-2007 09:10 PM

Re: My appt today with Doctor Raxlen
[QUOTE=sleeperwoken;3106969]Fantastic! I am so happy for you!!! I hope this regimen works fast for you. Doctor Raxlen sounds like a really interesting person. I think this bioresonance sounds a lot like Autonomic Response Testing (ART). I have seen it done, very interesting stuff. I am assuming that Dr. Raxlen knows you are taking xanax along with all those things he prescribed, yes?

So did your bike ride wait for you?[/QUOTE]

Yes, I talked to him about the xanax, but his take was that if that is something that works, why switch.
When my body and muscles get very weak, I get a burning sensation in my chest and I feel nauseous with anxiety. I've never heard anyone describe it that way. I feel freakish.

Dr. R and I talked for so long, that I didn't get out until 5:50, so I missed out on the special ride back, but am still very thankful for the experience and won't forget it.

itsmylife 07-18-2007 09:12 PM

Re: My appt today with Doctor Raxlen
[QUOTE=ticker;3106982]Rodney, I am so glad you like the doctor and that you have a plan of action.

When taking Mepron, make sure you eat something fatty with it (peanut butter, cheese, etc.) or it will not be absorbed properly. Do not take COQ-10when you are on Mepon.

In case you did not know, there is a great sleeve you can get so you can shower without getting the site wet. It is called a Mid-Arm Protector and you can get it at Brown Medical.

When do you get your PICC line?

Good luck with your treatment![/QUOTE]

Thanks for the info Ticker, I'll remember that. I thought the Mepron was going to be infused through the PICC line because the script looked like it said 2 ml...I'll have to take another look.

That sleeve sounds great as the baths and the PICC line sounded like a challenge. Thanks Ticker.

I'm waiting for a call from the hospital about when the PICC line will be inserted. Hopefully this is not going to be too uncomfortable.

ticker 07-19-2007 06:49 AM

Re: My appt today with Doctor Raxlen
Hi Rodney. Mepron is a liquid. Let me warn you, it is very goopy and the color of yellow construction paint! You take it by the teaspoon--usually 2 or 3 daily. Most pharmacies do not have it and need to order it, so make sure you give them several days to get it before you run out. You can get it in a bottle or in individual serving packets.

The line insertion is usually not painful. You will feel the stick. It usually only takes a few minutes and the tech will likely x-ray it to make sure it is properly placed. The most important thing about IV is to keep the line clean and dry at all time. An infection can be deadly. If you ever have any question about the way the site looks, call your nurse or doctor immediately.

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