michiganjan

I have POTS--hyperadgrenatic version. Has anyone here with POTS and chronic fatigue found help with Elavil? MY doctor just prescribed it for me for fatigue. He said it is now FDA approved for the treatment of chronic fatigue syndrome. Michigan Jan

Lauren, I am sure you must have given this information before but I missed it. How wereyou diagnosed with the Lyme Disease? Michigan Jan

I have POTS. I am 60 years old. I am also a patient of Dr. Grubb. He recently ordered a CT angiogram of heart heart for me. I had this done on a 128 slice CT machine. My calcium score is zero. The report written by the cardiologist who read the scans states that all the coronary arteries are normal. The scans were also read by a radiologist who looked at the chest views. He wrote my pictures are unremarkable and stated No significant atherosclerotic changes are seen within the visualized thoracic aorta. I suppose I could wonder why the radiologist used the word "significant?" Were there changes that were there but they weren't significant? Anyway the point of my sharing this on this thread is that I am 60 and I just had the best test one can have short of an actual catherization and my heart is normal. I think having a normal heart is certainly a help with POTS because I have been told by the cardiologist that a normal heart more easily withstands palpitations. By the by I have lots of those, too. I also had a 30 day event monitor. And caught several incidents but the cardiologists were not concerned about anything that showed up. I alos have been diagnosed with Ehlers Danlos hypermobility syndrome. So I also had an ultrasound of the entire aorta and it was normal, also. This has helped me to have this concrete knowledge. Michigan Jan, who is back on the forum after a long hiatus.

Dawn, Go to Sirtex.com to read about the Sir Spheres treatment Jeff had. Jeff did die of his cancer and it was his liver that killed him. However, he did not have just liver cancer alone. He had Sir Spheres twice, once to the right side and once to the left side of his liver. It did reduce the tumors and slow it down for a time, but the cancer elsewhere was out of control so kept spreading, and came back in the liver with a vengence. Anything you can do to get it out of the liver or slow it down is desirable. And waiting around too long is not a good idea, There are only certain places that do the Sir Spheres treatment and you can find them on the Sirtex site. There are also other treatment options for liver cancer besides the spheres and transplant. If he has limited amount of tumors, cryotherapy (freezing) or heat ablation are also options to kill tumors. Jeff had cryotherapy as had my daughter-in-law to kill tumors. Jeff''s cryotherapy was not to his liver, it was to a mass of cancerous lymph nodes. Both heat and freezing kill cells and are being used to kill tumors. You will need to feel confidence in his doctor to make the right choice of treatment(s). The choice of treatment can depend on the amount and location of the liver tumors. The spheres will go to to blood supply of the tumors and block the blood supply as well as radiate the area where they lodge. The spheres are not considered a cure, but they can slow down the progression. I wish you and your brother the best. Michigan Jan

I have been absent from this list a long time. My husband, Jeff's fight with cancer became my full time job. As was posted in another message, he died on November 13 after a 16 month battle with cancer at the junction of his stomach and esophagus. I am posting a link to a slide show we made of his life that was part of his funeral service The final two slides and music "I Won't Back Down" by Johnny Cash are very representative of his attitude toward his fight with cancer. here is the link: http://www.jonesncompany.com Well, it didn't post like a link, but if you just type in jonesncompany.com into the address bar of Internet Explorer, it should get you there. Missed you all Michigan Jan, who now walks alone, but pays someone to bring the groceries.

IK am curious. Who diagnosed you with the EDS type IV? I saw a geneticist at the University of Michigan and I was tested for type IV EDS with a skin biopsy, which was negative. The diagnosis of the other types of EDS is clinical, but there is an actual test for type IV. Michigan Jan

Jeff is doing very poorly right now. His condition has worsened considerably. I want to cry when I look at him--he is malnutritioned, has swollen belly, legs, feet, most likely from his liver failing. I do not think he will be with me much longer. I am going to drive him to his retiree luncheon group tomorrow so he can see his friends. I hope he is able to enjoy it. He is also supposed to start a new chemo regimen Friday. I can't really imagine it will do him any good but he still wants to try. Sometimes he can barely make it from the couch to the bed. He relies on pain meds every day and has periods of terrible retching that does not (thankfully) bring up anything, but it is so hard on him. I am just very sad. Michigan Jan

Sue, I am thinking of you and your daughter. I am sorry that she has to go through this--it is frightening indeed. I am keeping you and her close to my heart.

Thank you everyone who is thinking of us and praying for us. Jeff is still having chemo therapy. In fact he had chemo today and another blood transfusion. He now has the blood of 7 other people in him. He is not not actively bleeding now but I think the chemo also is causing the low hemoglobin. He is completely miserable at times and I am extremely sad and anxious watching the man I love feel so terrible and go through so much. There are days he can't eat and we were just in the emergency room again last Sunday because of a no eating, no drinking day to get him some fluids and check out a possible infection. He has had so much done to him and he is so weak and sick now. Still he wants treatment so he can fight on as he is not ready to die. And so we go on . . .

I am in Michigan, after all, my handle on this forum is MICHIGAN JAN! I live across the state from Kalamazoo--I am near Detroit and Ann Arbor. If you decide to visit the Ann Arbor or Detroit Area, do let me know!

My compression hose came with a slipper-like thin, shiny, slippy thingy that you put over the toe of one foot and then pull the hose over the slipper-like thingy. To work the hose up the leg, do not try to bunch them up like you would panty hose. Rather put on a pair of rubber gloves, the kind you would wear for house work and rather than grip the hose, use the plams of the hands on the outside of the hose to simply work it up the leg a little at a time. When the hose is completely on the leg, then pull the shiny slipper-like thingy out the toe hole. The slipper-like thingy has a grab tab for this purpose. Then put the shiny slipper-like thingy on the other leg and start over. There must be a name for the slipper-like thingy but I don't know what it is.

Hi Corina, If you do decide to move do you have the opportunity to build a new house, so you could then plan it anyway you like it. I love my house, which we built. It is a story and a half. Meaning the main floor on ground level has all the living space including a master bedroom with bath. The upstairs is only over 1/2 the house and all that is up there are two bedrooms and a bath. That way you would have room for your boys now, and later, when they are gone you would have guestroom quarters. Now that my husband is retired and we have no kids at home, I only go upstairs once or twice a month in order to run the water in the bathroom and flush the toilet to keep water in the traps. Once a month the upstairs might get dusted and vacuumed and otherwise it just sits there until someone comes to stay overnight and then I just sent them up there and let them pick a bed. Our small upstairs has its own furnace zone, so we don't even have to heat/cool it except minimally unless someone wants to sleep up there. You are also fortunate that you don't have to move at any given time and can do so when the real estate market is good for selling. I think the biggest clue you gave in your post is that you don't like the neighborhood where you live. You will not be able to solve that problem by remodeling your current home.

Today we got the results of Jeff's latest scans. They show that the cancer in his esophagus/stomach has grown and spread to several lymph nodes. The pressure from the cancer explains the back pain he has been having this last week. This is the first time since he was diagnosed over a year ago that he has had pain from the cancer. He just got a prescription for a narcotic pain killer to help him sleep. The radioactive spheres he had to his liver seem to have helped somewhat there, as some of the tumors are smaller and yet, one has grown. He has also been losing some weight from lack of appetite because the cancer is taking up space in his stomach, and he also has some stomach upset. The scans show that his chest is clear but a spot on one kidney has grown and is likely a metastasis. Next week he begins a clinical chemo trial. He will have his physical and bloodwork on Monday and begin chemo on Thursday. We will be very busy, as there are many long days ahead and lots and lots of testing required by the drug company to be in the trial. He will be taking a combination of 2 already FDA approved drugs and a new untested one that works by interfering with the growth of new blood vessels. Part of the growth of the cancer may be because he has not had any chemo for the last 4 weeks. The chemo was failing and the four weeks off chemo was a requirement to be in the clinical trial. So . . .. wish us love, luck, send prayers, healing energy, whatever you can. Jan Jones

I believe I think a bit like Nina on this topic. That there must be various causes. However, I am confused with the EDS connection. While I definitely am hypermobile and most likely have the collegen defect, and while my blood does pool in my legs, I tried hanging out with the EDS people for awhile, and among the hypermobile types there, POTS does not seem to be prevalent. There seem to be many hypermobiles out there without any POTS. And I can't find anything about POTS among the EDS organizations. So sometimes, I think it must be a multi-determined thing., not strictly an EDS thing. Perhaps some form of POTS can be caused by the collegen defect + the NET problem? Ramakentesh, has there ever been any mention of hypermobility due to a collegen defect by Dr. Esler?

I went through the prep very well and I have hypoglycemia and mine can be reactive so no sugar for me. I prepared for my prep by cooking a beef roast and reserving the juices and also cooked a chicken and kept the broth. I put the broths in the fridge and later skimmed off the fat to leave just a clear broth. I also used apple juice. I learned that even though I am reactive hypoglycemia that I could drink a small amount of the apple juice and just sort of swig it lightly all evening long to keep my sugar up. For a meal I had the broths and apple juice. At one point in the prep I did go low and the apple juice brought me right back up. The time that will be the hardest is when you have to drink the halflitely. I had golightly prep and I had to drink 8 ounces every 10 minutes and when you are drinking it down on a schedule like that a couple of hours will go by when you are not drinking anything else and this is the time you may go low. It is very hard to drink apple juice amidst drinking 8 ounces of prep fluid every 10 minutes. However I did manage to get through it . Another good thing is that I have a tester kit--the kind a diabetic uses to take their sugar level. I was able to monitor my sugar and that is how I know the apple juice worked for me. I even set my alarm during the night to swig some. In the morning when I arrived at the testing room, I asked for them to check my blood sugar and they tested it when I was still under the anthesthia. Good luck,