RAD Caregiver
RAD Love Giver
My Site
Just another WordPress site
Our Petition to WhiteHouse.gov & why you should sign it
Long time readers are familiar with the saga of my fiancee Tanya and her life being diagnosed with Rheumatoid Autoimmune Disease, aka Rheumatoid Arthritis (RA), which turned out to not be RA but rather a Biotinidase Deficiency. Since my server stats indicate that I have a lot of new readers I will summarize the ordeal for you.
In December of 2003 Tanya was diagnosed as having Rheumatoid Arthritis due to her joint pain and fatigue. As the years went by her symptoms got worse and she spent close to $500,000 in treatments that included low dose chemo. In 2013 one of her nieces had a baby. These days, thanks in part to the March of Dimes, gene testing is done on newborns to see if there are genetic defects that the new parents should be aware of. As it turned out, the baby was a carrier of the gene for Biotinidase Deficiency, but they did not know what side of the family the gene came from so Tanya had a vitamin and nutrition test done on herself. It took a couple tests and a couple months to get the results, but on July 19, 2013 she was informed that she was profoundly deficient in Vitamin B7. Her doctor did not know how to treat it and said they would get back to her with a treatment plan; as of July 25, 2014 they still have not called back.
Luckily, one of Tanya\’s skills is research and she immediately sought out ways to get enough B7 in her system since the gene mutation prevented her body from separating B7 from the protein it is attached to in foods, so her body just passed it out. Long story short, she discovered Biotin and started experimenting with it since there is essentially no information available on how to treat Biotinidase Deficiency. The results were immediate; literally overnight she started noticing improvements in her health. She immediately discontinued the use of the various prescriptions she had been taking for years and has not taken any of them in the past year. 13 months ago we were wondering how much time she had left on earth; this past Saturday we celebrated the one year anniversary of her rebirth. Continue reading
Adult Biotinidase Deficiency and you
![\"Tanya](\"http://www.gotbaddog.com/wp-content/uploads/2013/07/painfree_5865.jpg\" "\\"painfree_5865\\"")
To say that this has been an amazing week would be an understatement; I would go so far as to suggest that it has been a miraculous week. I would like you to take a look at the photo of Tanya, to the left. I took that photo this afternoon (Saturday, July 27); there is no way Tanya would have even attempted jumping up like that a week ago. The fact of the matter is that in recent weeks, Tanya has been extremely clumsy; tripping over her own feet and walking into walls became pretty standard occurrences. She had numbness in all of her extremities, it was painful for her to smile and she could not follow a conversation to save her life. On the 19th, my birthday, she got a telephone call from her primary care physician\’s office and they informed her that she had a low B7 reading and that the doctor would be calling her with a treatment plan. So, that was a week ago and her doctor had something to do and would look into it when she got back. Luckily, Tanya had figured out that waiting for this doctor could kill her, so she went and got loaded up on B7 the next day and has kept at it since.
Since the primary care physician was pretty useless Tanya hunted down a doctor that practices naturopathy; figuring he would be more capable with vitamin deficiencies. She then picked up a copy of the test results so she could bring them to the new guy and discovered her B7 level was .05! People with B7 levels between .30 and .10 need treatment; below that is a profound deficiency and must be treated with urgency. While Tanya waited for her appointment, she did more research and discovered that almost every issue she has had since birth can be related to this B7 deficiency. In the 9 years she had been treated for Rheumatoid Arthritis (RA), no one ever suggested doing a vitamin test even though all the tests they ran on her said she did not have RA. Doctors agreed, something else was going on, but no one ever thought to check vitamin or toxin levels.
Thursday we went to visit the naturopathic doctor; that was pretty eye-opening. The first thing we learned was that he had never dealt with anyone that had a B7 deficiency; he had just had someone with a B6 deficiency recently though. B7 deficiencies are not tracked much it seems; they do it on newborns, but stop after that. Not really sure why that it. He agreed to do a complete vitamin and mineral blood test, so we will see what happens from there. Continue reading
Practicing medicine
![\"Tanya](\"http://www.gotbaddog.com/wp-content/uploads/2013/07/B7-shot_5372.jpg\" "\\"B7-shot_5372\\"")
Sometimes clichés are just a little too accurate; for example, to say doctors are just practicing medicine is sad but true and that is what brought about my writing of this particular article. Since I expect that there are new readers here that do not know the back story to my adventure in medicine, I will give a quick review. If you would like more details, you can click the link to the RAD Caregiver category.
In a nutshell; my girlfriend Tanya was diagnosed with Rheumatoid Arthritis (RA) in 2004. In October of 2011 Tanya moved from Indiana to California and my life of living with RA began. One major change in my life was that I now had to start doing something I have most of my adult life avoiding; I started going on visits to various doctors. In case there is some confusion, I do not go to the doctor for myself. I tried it a few years ago but the experience was so frustrating that I said screw it. I admit, I was a little surprised when I first started going with Tanya on her visits to several doctors and specialists in Southern California. My initial impression with each doctor I was introduced to gave me the impression that each of these new doctors was a qualified, caring professional that was going to do their best to help Tanya. Unfortunately, as time went on, I came to the realization that there was one doctor that seemed to be basing his suggestions on kickbacks from a pharmaceutical company while the others seemed to be at a loss as to what Tanya\’s problem is, because every \”test\” they ran seemed to come back normal; it was almost as if they were suggesting that she did not really have RA. Rheumatologists would send her to neurologists and thyroid doctors. Everyone that tested her said there was nothing wrong that they could see, and her complaints essentially were not typical RA symptoms. Various drug combinations were tried and only through Tanya\’s insistence was a combination of drugs given to her that relieved her pain, quite significantly at that. The thing is, the new drug cocktail had side effects that required even more pills to be prescribed and some of the side effects got bad enough that she had to delay taking her primary pain relief cocktail. I started to notice Tanya experiencing the same frustrations that caused me to give up on doctors, but she does not have that luxury. Continue reading
Celebrating one month pain free
Back in August I mentioned that Tanya had started using a new drug to combat the pain from her Rheumatoid Autoimmune Disease (aka RAD or RA) she has been living with since 2003. She had been using Enbrel for quite some time, but it did not seem to be doing any good, so Cimzia was suggested. These kinds of drugs usually take a while to get into her system before they start working, and she was in a terrible amount of pain, so her new Rheumatologist started her on various sleeping pills and anti-anxiety pills; but nothing seemed to help. The last time we visited Dr. Ishimori, we talked about this and it was decided that Tanya should start taking an anti-inflammatory, Mobic; the change has been amazing.
Within a couple weeks of adding Mobic to her drug cocktail Tanya noticed something pretty amazing. She was no longer in pain. Considering she could not walk around the block without experiencing some pain, this was pretty remarkable. As time went on she realized that she could carry her camera, with an external flash; she could walk up and down hills and she could lift items over her head without paying for it later. In fact, when rain was in the forecast she did not feel it in her joints. It has been 10 years since that has happened.
Naturally, Tanya is taking advantage of this pain-free existence; this means being able to finally unpack after more than a year of living here, and we go out for walks with our cameras. These photos are from our visit yesterday to the South Coast Botanic Garden in Palos Verdes Estates. We walked the mile circumference of the garden with all its hills, and she felt no pain. That is quite the accomplishment. Continue reading
Living with RA: One year later
A few weeks ago several of my siblings came into town to attend a function that was honoring my dad and a few others that attend his church. One of my brothers asked me if I was going to continue writing about life with Rheumatoid Arthritis or not. Apparently he had enjoyed reading my perspective. I explained to him that while I was continuing to do as I had promised as far as bringing awareness of RA and of the Rheumatoid Patient Foundation, I was doing it primarily by donating watermarks on some of my photos to the Rheumatoid Patient Foundation. The reason for this was that living with a person that had RA was not always a pleasant experience and I was not always ready to deal with the strife that might result if I wrote my thoughts for the world to see. Little did I know that some might interpret my lack of writing a an indication that all was well, apparently there are people in my own family that seem to think that we use Tanya\’s disease as an excuse to get out of doing things. Tanya frequently discusses on her blog how strangers do not seem to understand RA, how they will offer home remedies that their grandmother used for her arthritis, or how if people cannot see the effects of the disease, it must not exist. I begrudgingly accepted this as reality, but I was saddened when I discovered that this extended to my own family. As a result, I have decided to talk a little about the last year.
In October of 2011 Tanya moved in with me and I learned what living with Rheumatoid Autoimmune Disease (RAD), also known as Rheumatoid Arthritis (RA) was really like. Tanya and I carried on a long distance relationship for more than four years, so I thought I had a pretty good grasp on things as far as RA was concerned; I was wrong. When we were 2,000 miles apart I did not see RAD on a daily basis; I could only go by the comments Tanya might make when we spoke on Skype or ICQ. Considering we lived so far apart we saw each other a lot but Tanya is pretty good about not complaining, so for the most part, I only heard about problems when they were severe. Because Tanya wanted to spend time with me, she would suffer in silence and I really did not know how bad it was. Continue reading
Cimzia: Is it working?
As an RAD Lovegiver, the most frustrating thing is watching the woman I love be in so much pain and not being able to do a damned thing about it. On top of that, the medical professionals seem to be guessing at what drug combinations to use to alleviate that pain. I guess that is why they call it practicing medicine. This past week or two has truly sucked. As an outsider, it appears to me that the drug combination Tanya is currently on is doing very little to benefit her. I have been looking through old photos of trips Tanya and I have taken over the years and I long to have her back in remission, but my hopes are definitely waning.
Back in July, Tanya\’s first LA rheumatologist (Dr. Forouzesh) put her on a new drug, Cimzia, because the Enbrel did not seem to be working. Dr. Forouzesh was pretty much gushing with praise on how well this drug worked. Just use it for a few months and feel better was the impression I was left with. As Tanya is prone to do, she investigated the drug and it appeared that many were having a lot of luck with it. We put our thoughts of stem cell therapy aside and placed our hopes on Cimzia. As it turned out, Dr. Forouzesh lost his free samples of Cimzia and with the loss of the free drugs, his enthusiasm seemed to dissipate. After a couple of weeks he decided it was not going to work; even though Tanya\’s research suggested it might take a few months. We decided to find a new rheumatologist.![\"Cimzia](\"http://www.gotbaddog.com/wp-content/uploads/2012/08/Cimzia_3630.jpg\" "\\"Cimzia_3630\\"")
Continue reading
Tests, tests and more tests
When I last posted about meeting Tanya\’s new rheumatologist, I mentioned that Tanya had been referred to an endocrinologist to investigate some breathing issues she has at times. Dr. Ishimori was concerned that perhaps there is more than just the Rheumatoid Autoimmune Disease (RAD/RA)at work here. Naturally, they have to schedule all tests to be out at Cedars-Sinai, which means fighting traffic for an hour, then trying to find a parking spot followed up by trying to find out where to go to have the testing done. ![\"Pulmonary](\"http://www.gotbaddog.com/wp-content/uploads/2012/08/Pulmonary11.jpg\" "\\"Pulmonary1\\"")
While we left the house with what should have been plenty of time, LA traffic was not going to cooperate and every parking lot at Cedar-Sinai was full. Unfortunately, I am not allowed to get upset at these situations so all I could do is drop Tanya off at the door, then drive around Beverly Hills looking for a parking spot. By the time I found one I was in no mood to carry my camera around plus I had no idea where I would find her or what would be photo worthy. As you can tell, I obviously found her again. The lab tech wanted me to stay in the waiting room, but eventually Tanya got it through to him that she wanted me there. When I came in the room I really wished I had my camera. I settled for using the one on her Android Xoom. The photos are not great, but you get the general idea. Continue reading
A visit to Dr. Mariko Ishimori
Thursday morning, Tanya and I headed out to Beverly Hills and Cedars-Sinai Medical Center to visit a new rheumatologist, Dr. Mariko Ishimori, MD. After Tanya\’s last experience with Dr. Forouzesh she decided that she could not handle the stress of having a doctor that changed attitudes and commentary with each visit. The fact that he had been giving her Cimzia as samples that were already allocated to other patients was the straw that broke the camel\’s back. I was not really sure what to expect as we entered the Steven Spielberg Building and our introduction to Dr. Ishimori.
As it was our first visit, I will not go into much depth other that to say that there were additional blood tests ran and an appointment with an endocrinologist was set to check out the issues she is having with glands in her neck. I will make a few observations though. For one thing, Dr. Ishimori\’s office ran with clock-like precision. When they say an appointment will start at 10:20 and will lat an hour, it actually starts at 10:20 and lasts an hour. Confidential patient files were not lying all over the counter at Dr. Ishimori\’s office. Everyone acted quite professional. I remember thinking that is was almost like Spielberg was directing everything so that there was this precision.
Dr. Ishimori not only took the time to take a very extensive history of Tanya\’s past, but she did something I never saw Dr. Forouzesh do; she actually took the time to feel and look at all of Tanya\’s joints. Hands, elbows, toes, knees, neck and whatever else that moved. Contrary to Dr. Forouzesh\’s assessment that the Cimzia was not going to work, Dr. Ishimori determined that the Cimzia seemed to be doing exactly what it should be doing. That is why a visit with an endocrinologist was set up; perhaps there is more going on than just the RAD (Rheumatoid Autoimmune Disease). Continue reading
Rheumatoid Autoimmune Disease, doctors and stress
It is no secret that, in general, I do not like doctors and do my best to avoid seeing them on a professional level. Since Tanya moved here I have been with her on several visits to see her rheumatologist; the experience has not done much to change my opinion of the profession. I will admit, after the first visit I thought that perhaps I had been too harsh; there are specialists out there that will really listen to their patients. I thought it was quite refreshing and I looked forward to the experience.
![\"RAD](\"http://www.gotbaddog.com/wp-content/uploads/2012/07/ThisPersonCG.jpg\" "\\"ThisPersonCG\\"")
When we went in for the second visit I was dismayed when the doctor thumbed through the research Tanya had provided two weeks earlier as though it was his first time. Still, he was conducting new tests and was suggesting new medications so I had to reserve judgment; besides, the first appointment was after lunch and the second one was in the morning. We decided that we would only schedule afternoon appointments as he seemed less busy and more able to spend time with Tanya. Continue reading