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,

Jeff had the right lobe of his liver treated yesterday with the radioactive spheres. The procedure went very well and he feels fine today. Thank you everyone for all your prayers, healing, energy, thoughts, hugs, and support. Now we have to make some difficult decisions about chemo. And so we go on, fighting, to the next round. He may enter a clinical trial sometime soon. Michigan Jan

We have come to a major fork in the road, rather I should say a 3-way split. One doctor wants to do cryo for Jeff's remaining liver tumors, one wants to do the right side of his liver with Sir Spheres, and we have just asked the experimental chemo program oncologist for her opinion as to what should be done. The disease may be on the move but so are we. It is just hard to make decisions when we have divergent but educated, smart opinions from doctors we have respect for. I will post when we know the plan. I know I am talking about my husband's cancer and not POTS, but I need my POTS friends right now. I feel like I know you and I lean on you for support. Thank goodness that we have the Chit Chat forum where I can do this. Michigan Jan

This past week we got the results of the CT scan taken as a follow up to the procedures Jeff had done to fight his cancer. He had the left lobe of his liver treated with radioactive spheres. There were 3 tumors there. On the CT scan only one was visible and it is smaller, so that is good news. Jeff also had a tumor in the caudate--back part of the liver--and it has remained the same. He also had a large mass of cancerous lymph nodes near the pancreas that was treated by cryoablation--freezing technique. That mass appears the same on the CT scan, but the doctor said that at least part of it should be dead and just sitting there. So the above is all good news. However the bad news is that in the right lobe of the liver, which was not treated with the spheres, there are two tumors that definitely grew in size. This is a big concern because it means that the chemo is no longer working and since Jeff's cancer is systemic, if the chemo failed on those two tumors, it will be failing on the microscopic cancer throughout his body and metastisis may pop up anywhere. The decision has been made to have the radioactive spheres administered to the right lobe of the liver. This may also reach the tumor in the caudate that was unchanged with the last treatment. The oncologist also changed one of the chemo drugs in the hopes that it might make chemo work again. The spheres treatment will be most likely in about 2 weeks or sooner. Tomorrow we are also going to consult an experimental chemo oncologist to see what options they may have for chemo as part of clinical trials. So this terrible fight moves on. There are risks to treating the right side of the liver with the radiation, liver failure being one that would result in death. The doctor says this is unlikely and Jeff does have good liver function going into this procedure. Still Jeff has decided to do this. I agree--what other choice does he have when the chemo is failing? There actually are other procedures to work on the liver tumors on the right but because there are likely tumors on the right that are too small to see, the other treatments are limited to what they can see during a procedure and the spheres can catch anything not seen, so wil go with that. I want so much for Jeff to get to NED (no visible signs of disease) status so he can go off chemo for awhile. He has more than 1 year of constant chemo and we certainly can't stop it now. This has worn him out. It is a good thing he was a very strong man when this all started. I think I got too much outdoors the day before yesterday. Did some pruning and got too warm. Came in and cool-showered but still tired today from it. Slept a lot yesterday and did not want to get up this morning even though I slept till 10 a.m. I am going to go back to bed for a while sometime today and just sit and read the rest of the time. I need to recover to be ready to go again to the experimental chemo app. tomorrow. I am still recouperating from the all-day Friday stint at the hospital for his chemo treatment. YIPES! And so we go on. The chemo is wearing him out and the fight is wearing me out, and My POTS doesn't help anything!

I have had short memory loss at times, but have not not had the symptoms you describe with the word. Have you told your doctor about the word mix-up? I think you should. I did have some problems with short-term memory loss and Dr. Grubb prescribed cerefolin and I am not bothered by the memory loss any more at all. It was so bad at one point that I was talking to my son on the phone and couldn't remember his name!

Gayla is right -- take care of yourself. That can be a very hard thing to do when you have been hurt badly. I struggle with this issue daily in the face of my husband's cancer. Some days it gets me down so low it is hard to get up. The only thing that helps me is to force myself to do something. This morning I rode my bike. At least that qualified as exercise. Try every day to engage in some activity (could be reading agood book or watching a TV show, or working on a knitting project or even putting together a jigsaw puzzle) that will take your mind away from the troubles for a little while. It is like taking a little vacation from the pain and stress.

I had my doctor write a letter explaining that I could not serve on jury duty and listing the reasons why and also there is a statement in there that explains that my condition is chronic and not likely to change. This worked for me. I suggest that you call the phone number (should be on on the summons) and aks what is required to be relieved of duty, then do that. There was an actual form for the doctor that they had to send me.

I am begining to sound like a broken record on the topic of allergies and POTS but, here goes: Anyone with POTS should have their allergies under control, thus limiting or even eliminating the need for "rescue" inhalers. There are many effective allergy-asthma treatments that are preventative in nature and do not cause tacycardia, or at least they are less offensive than Albuterol. An allergist can sort these out with you. Nina's regimen is one example and you can see my regimen in my signature below. A good "base" program taken every day, year round can go a long way to prevent symptoms from getting out of control. It can be done and it is worth it. You have my sympathy--asthma is not fun.

Melissa, I was wondering about you. I knew you were struggling. I am sorry you are having it so tough. I am going through greiving too. Jeff just passed his one year anniversary with cancer and I am grieving all over the place. We will never get back what we lost, so grieving is a necessary part of the process. I can only hope that knowing about the mitrochrondrial involvment will help in some way. You have my best wishes . . .

Morgan, I am sorry to hear this. Can you usually do better getting food down after a dialation? Is there no way to repair those strictures? Obviously I don't know what I am talking about here with the stirctures, but I do know what Jeff went through when his esophogeal tumor was too large for food to pass into his stomach and the doctor was telling him 2000 calories a day or go on a feeding tube. He managed to escape the feeding tube. I talked with a nutritionist about how to get enough calories in him. The answer was that a calorie is a calorie and in order to get enough he had to drink Ensure or Boost and to that I added ice cream and chocolate syrup. He drank 4 of these a day. I think it will be extremely hard to get the calories going low carb if you can't swallow solids. I don't eat sugar because I can get reactive hypoglycemia. I can't remember why you can't have sugar. If you could tolerate sugar it would be a whole lot easier. On the other hand, I have been around several people who have had to have feeding tubes due to cancer. They depend on the tubes to get enough nutrition and they do work. They are usually a temporary fix, so if you have to have one, it can come out later. Good luck and I am sorry I can't be more helpful

I have it, too . . . dry eyes, dry skin, dry mouth. For me it can worsen if I take too many meds that have dry mouth as a side effect. Or if I increase the dose of zantac or some other meds. So meds may be a cause. Also, I have noticed that mine can get worse in times of stress. I really like Eucerin Calming Cream, available in most drug stores non prescription but kind of expensive. I slater it on my face 2 x daily and it really works for keeping my skin nice. I also use it on arms, legs, anyplace I have dry skin after a shower. My dermatologist recommended the Eucerin Calming cream when I developed a face/neck rash that was dry skin caused. I haven't had the rash since. When my eyes get dry, I use drops 2 x a day. This seems necessary in the winter or really dry times of the year. I use drops specifically for dry eyes.