April 9, 2009 at 3:27 pm #302114
it is somewhere in my file so you have to look down on page three
Rheumatoid Arthritis and Dermatomyositis… the hard road to winning my life back
My story with Rheumatoid Arthritis and Dermatomyositis started actually a very long time ago when I was a child, but in 1999, when I was 58 years old and traveling in the Baltic area, the newest episode started with a bang. We had been touring with about 180 people (German choirs) and when we arrived in Stockholm, Sweden we had a few days free to walk and visit many interesting places.
The second night I woke up about 3 a.m. and my right leg felt like someone had hit it with a baseball bat. I went to the bathroom and soaked the leg in warm and cold water. It slowed down the pain and I returned to bed. I could hardly walk the next day, but sitting in the bus and traveling across Sweden was not a problem. I continued to have pain for more than a week and when we finally arrived back in Houston, TX, I made an appointment with an orthopedic doctor who told me I had a spontaneous fracture and put my foot in a cast. Now that was a real surprise, never even heard of something like that.
Two years later (2001) I had the same problem with my left foot, and that is when the doctor sent me to have an ANA x-ray done that showed I had arthritis. The x-ray came back so positive that he sent me right away to a rheumatologist, who put me on Celebrex and told me that I had to have a blood test done every three months so they could make sure I would not have a problem with my liver. Now isn?t that interesting: a medication that is supposed to help you stay without pain but can damage your liver. Down the road, other medications caused more health issues.
I took the medication for awhile then discontinued it because I didn?t have any pain from the arthritis.
In the fall of 2004 I started to have little nodules on both of my arms. I went to my allergist and she gave me a cream to put on them, but that didn?t help at all. At that time I also started to have a dry cough; it didn?t bother me much so I just took some cough syrup and went about my merry way.
In November of 2004 I had a very bad bladder infection and the doctor gave me antibiotics for ten days; four weeks later I had another bladder infection and I ended up with more antibiotics plus a medication that was to clean the lining of my bladder. I think that was the trigger to the beginning of my road with Rheumatoid Arthritis.
My fingers swelled up like little sausages and typing at work was very hard. We had a lot of work every day and some days my fingers looked like someone had taken a knife to them, lots of little sores.
My GP gave me Prednisone to take, but only for ten days. The swelling went down a little, but after a few weeks it was back again. I went to the Rheumatologist, who told me to get back on Celebrex. I could only take 100mg of that medication, everything else was too much. He started me on Methotrexate. I took this for about three weeks when my cough became extremely bad.
By March 2005 my cough was so bad that the girls in the office told me I had a hairball in my lungs and couldn?t get it out. Very funny, but it felt like it too.
My GP took x-rays and told me that I had pneumonia, after a week of medication I ended up in the hospital with getting Prednisone and antibiotics pumped into me. They took more x-rays, a CT-scan and an EKG. The one thing that they all were sure about was that I had this grey spot in the middle of my lung. When I told my GP about the Methotrexate she made me stop it right away. Come to find out Methotrexate and lung problems don?t mix too well.
I called my rheumatologist and he just blew it off. It really upset me that he could care less. That was the end of him and I was looking for another rheumatologist.
I was off work for four weeks and then when I went back to work I could really tell how ill I had been. The pulmonary doctor made me come in several weeks in a row to check me. Then by the middle of June when I went to see him he told me that I had to have this five year pneumonia shot. I argued with him but he insisted so I had it. Boy, what a mistake, within a week I became sick and by the third week theCTt-scan I had showed that I had pneumonia again. AGAIN? So I stayed home for several days and then went to work again but work became more painful and tiresome by the day. End of August I went back to my GP and she put me on a six week medical leave, more medical leave after that, I was never able to go back to work again. I medically retired January 2006.
Within another week (September 2005) I was so weak and I was losing a lot of weight. The pulmonary doctor had not called me back for three days and I was so miserable, so I asked my daughter if she knew another pulmonary doctor and she sent me to hers.
By mid-September I had a lung biopsy done and then three weeks later I had to have an open lung biopsy to find out that I have pulmonary fibrosis caused by the rheumatoid arthritis.
Eva HollowayApril 16, 2009 at 7:05 pm #328783
I just remember in 2003 I had a bad kidney infection (left side) and ended up in the emergency room for a day. I was in so much pain that I could not even stand upright. I had to stay home for several days. They gave me antibiotics.
I have an allergy to sulfa medications.
When I take MSM I get sick to my stomach, I had ordered a lotion from somewhere and the cream had MSM in it. You should have seen my hands, really made them hurt. :crying: Never again.
Eva HollowayApril 17, 2009 at 10:06 pm #328784
I went to see Dr. K. today and had a good talk about the bladder infection I had in 2004, (proteus mirabilis). She stated that to do the test I would have to get of all antibiotics for three months to get a good sample. Since I have no bladder problems at this time she feels that I need to stick with the antibiotic protocol to get well.
She check the thyroid problem and told me to come and see her beginning of June.
My CK is 275 down (March) from 545 in August 2008
my SED rate is 1
Aldolas is 11.9 just a little high
I think I have turned a corner, hope it will stay this way. Being on Brand name Minocin and the Thyroid helps.
Eva HollowayApril 24, 2009 at 11:18 pm #328785
In 1989 after spending some time on Long Island I had this funny looking bit on my leg. It itched really bad and it go larger by the week. Then I saw i show on PBS called: Once bitten; and the things fell into place. I went to my family doctor and showed him my bite area and asked him to test me for Lyme. His answer was, it's not here in Texas so you can't have it. I told him that I had been on Long Island, but he just shrugged it off. After persisting that I want the test he took blood and actually prescipt a three week tetrayclien therapy. He told me to come back in three weeks; which I did, he told me they lost my blood test (very convinend) and he had to do it again. Naturally they couldn't find a thing then. I may ask the doctor that does my mycoplasma testing if she could do a good blood test for Lyme. I need to know. I did have another Lyme test about a year ago and they couldn't find anything either, but who knows.:headbang:
I also found out that I had been tested for mycoplasma in 1996 and 2003 and tested positiv in the medium -high range. I will go for testing again on Monday. The doctor doing the testing is my allergist.I din't know she even had done this, but then it would have mend absolutly nothing to me back then.:?
Eva HollowayMay 7, 2009 at 1:35 am #328786
I had a pulmonary function test which has been the best so far. My ct-scan came back good and I don't have to see the pulmonary doctor till the first week in November. Will have to get another ct-scan just before that.
My liver and kidney cyst have not changed in the last three years, so I just hang in there. Everything else such as: Spleen, pancreas and adrenal glands are normal. So I keep on the Road Back to health.
Waiting for my mycoplasma test to come back. They told me it will take ten days. Has been about that long, so I have to make an appointment with the allergist.
Eva HollowayMay 20, 2009 at 4:08 am #328787
received my mycoplasma test back:
mycoplasma pneumonia is 01
Allergist stated it is good, will take t to Dr. K in two weeks.
Eva HollowaySeptember 11, 2009 at 11:51 pm #328788
another check-up. doing better. I have no body pain during the day only when I get up I am stiff and feel weak in my upper legs.
Dr. K. added LDN to my medication, she hopes it will help my body to get stronger. I look like the leaning tower of Piza.
Went on a two week bus tour with Chorgemeinschaft Texas, we sang in lots of places and also had fun doing sightseeing and boat tours. Did real well but after two weeks sleeping in strange beds I am glad to be back home:roll-laugh:
Eva HollowayNovember 2, 2009 at 7:38 pm #328789
I had an appointment today with my pulmonary doctor. Had me do a ct-scan 10 days ago and pulmonary function test last week. This morning the doctor walked in and the first thing he ask me what I have been doing to make my tests look so great:roll-laugh::roll-laugh:. I had told him aboutthe antibiotic protocol and I guess he just said okay, that's fine. This time he listened. He told me that my lungs are so much better they have been expanding more and some of the densities in the lower part of my lungs has cleared up. My PFT was to 97 % and the diffusion test is now 124. He told me he will not order another ct-scan unless I get sick.
The doctor was all smiles, I even told him that I use LDN and he looked it up and agreed to keep taking it. He wants Dr. K's info how she is helping me.
I am soooooo excited about this, I had to let everyone know what is going on with my health. I have been praying for this good info for almost five years. I am also more upright now and I can tell the LDN is working
Eva HollowayDecember 10, 2009 at 4:23 am #328790
It has been three months now and the LDN is really doing its job. Even my husband told me the other day that when I get up in the morning I am almost straight now. In the evening I get a little more to the bend over side but not as bad as I had been. I get more done around the house even are able to push the vaccum cleaner now. I have an appointment with Dr. K on Friday and will take the papers from the pulmonary doctor and the ct-scan to her. I know she will be pleased to see me almost upright again.
I have increased my intake of Vit D3. I read in an article that with the LDN it is important to take D3, Alpha Lipoic Acid and B-12. I still take all my other supplements too and feel like a pharmacy sometimes:roll-laugh:.
Eva HollowayFebruary 17, 2010 at 7:48 pm #328791
well it has been six months since I started LDN, what a change, I was bend now I am almost straight, still use my cane when walking longer stretches. I have so much more energy and no pain during the day only when I get up I am stiff. I walk almost every day in one of those big stores such as Wal-Mart, Target etc. I walk around the perimeter and then sometimes down some aisles. Walking is gettting better and I noticed too that I lift my feet to walk, not shuffle. Impruvements just coming along. I am so greatful to all the people on this board, the encouragement is what gets me through some tough spots. They been there and understand better what it means to live with the pain, brain fog, muscle weakness and what ever goes along with the auto immune problem.
My hand are red but not swollen anymore, I can wear my wedding band now and they don't feel like they on fire neither. Once in awhile I stll get a small sore, but with some oitnment and bandaid it's gone in a day.
The choir director asked me last night if I had lost some weigh and I told him: No. I also told him he just didn't see me stand upright for so long that he hadn't noticed I lost all thst weight 10 months and more ago.
Eva HollowayMarch 12, 2010 at 7:47 pm #328792
went to see Dr.K. yesterday and she told me that I look so much better. Most of the swelling in my face and hands is down and I actually feel better. Dr. K told me to stay on the medication and supplement protocol I am on right now.
I asked her about why I don't sweat and she told me that I may never really sweat much since I have never been sweating much, but she thought it was a good idea to get the sauna.
whoohooo, :roll-laugh: I am getting there. The LDN is working real well and every morning now I notice that I can stand more upright.
Eva HollowayApril 4, 2010 at 2:55 am #328793
Last Sunday I attendd a German festival and was in a lot of grassy area. On the way home my leg started to hurt really bad so when I got home I put an ointment on it to stop the pain. After that I went to bed, I couldn't get warm so my husband gave me the heating pad and it took two hours to get warm. Next morning I was okay but my leg started to have a rash and it looked like I had two bites right above the ankle. yesterday it was worse so today I called my regular GP and made appointment. I told her my episode, so she had some blood drawn to make sure my white blood count was okay. She aso gave me a shot of Rozephrin (?) and an antibiotic cream for the leg, and told me to come back if it doesn't get better.
A question: since she gave me this shot should I sit out the antibiotics for tomorrow?At the present time I take Minoxin 100 mg MWF and 500 mg of Biaxin TuThSa.
My leg looks real red red above the ankle, should I also see if I could get a Lyme test done down the road or do you think taking the antibiotics plus this shot may helped. I will also put in a call to Dr. K tomorrow. Their office is closed this afternoon.
Eva HollowayMay 5, 2010 at 7:02 am #328794
About 18 months ago I read in one of the support groups about LDN. They talked about how much the LDN helped with the muscle weakness. I checked into it and the one thing that held me back was the insomnia and the vivid dreams. I finally asked my doctor about it and there was no hesitation about getting it presript. I did have insomnia and a few vivid dreams but that went away after a period of time. When I got to the point were I could not even look people in the face because I was so bend over I realized I had to do something about it. I was already traveling in a wheelchair. I am now using a small three-wheel rollator to get around and the weelchair is sitting in the l livingroom. I now walk a lot more and are able to get off the floor. A year ago I could not do that, two days ago at physical therapy they made me get on the floor and then get up by myself. Everyone cheered when I did it for four times. It was hard but I did it.
Eva HollowayMay 21, 2010 at 1:19 am #328795
I read someone else note about their Lyme problem and come to think of after I had that bite in 1989 and I had that nasty bullseye on my leg, I also developed some severe tiredness to apoint that when I got to a red light I had to put the car in park and wait till someone honked the horn at me to move on, or my grandson would tell me the light is green. I had a lot of brain fog.I did have a variation of antibiotics for a few years, given to me by my allergy doctor.
Definitly must have this IGenex Lyme test done next week when I see Dr. K.
Eva HollowayMay 31, 2010 at 6:43 am #328796
I went to see Dr.K. last Thursday and she gave me part of my bloodwork. everything looks good. Even the aldolase is down to 6.8 which is in the normal range. Now I am waiting for the 2nd page which has the rest of my bloodwork and most of my arthritis tests. I may have to call Quest to get the last page.
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