Jaime

Congratulations, I am really happy for you! Jaime

I got the shot last year and I didn't notice any reaction within a month after getting it, but after that I got really sick for the entire winter. I was so sick that my doctor thought I had whooping cough. So I asked my doc if the shot even did anything since I was so sick, but she told me to imagine how sick I probably would've been if I hadn't gotten the shot! My doc told me to get it. There are also two types there is a live strain or I am not sure what they call it, but I call it the dead strain. The dead strain is the one I always get because I am on a lot of steroids. Also, if you are on Florinef, my doc told me that the shot doesn't work as well as if you weren't on any corticosteroids, but that it still provides protection.

So I just talked to a pharmacist friend of mine and she says that Cerefolin is an over the counter product, but I was under the impression that it is a prescription med. Has anyone had to buy this as an OTC product? Also, has your insurance covered it? She is telling me it will be about $85 for a one month supply. Another pharmacist told me that the manufacturer is on long term backorder and that it will be months until they have any available. I was going to post this on my other post, but I wasn't sure if anyone would see it. Sorry for all the questions about this, but thanks for the help! Jaime

The reason they probably say that your disability didn't start until Feb 2004 is because they go by the date that you filed disability not when you got diagnosed. Is Feb 2004 when you applied for disability? That is what my case worker told me. Congratulations for getting approved!! Jaime

I just started taking Mestinon, but I am starting a very low dose to make sure that I don't have a reaction to it. So far I haven't noticed a difference, but I will let you know if it helps. I am hoping that once I am on the full dosage that it will help! Sorry I couldn't help more. Jaime

KarenLorrel, What pharmacy are you getting the Cerefolin from? Is it a national chain? I tried the national chains and the mom and pop pharmacies and they can't even order it. One of them tried ordering it and the order came back that it was unavailable. I wonder if it by states since it is so new? Do you live in Michigan? Thank you for the info, I feel more comfortable now since I read your post. Do you have chronic joint pain and if so, has anything helped with that? Dr. Grubb put me on Mestinone. I haven't noticed a change yet, but I just started it so it will probably take time. Jaime

So I saw Dr. Grubb last week and I finally got a complete dx.....I have POTS plus Ehlers Danlos (joint hypermobility syndrome). So he said that the best treatment is epogen/procrit shots. However, he said that the shots cost about $20,000 a year and usually insurance doesn't cover it. I was wondering if anyone is getting this shot for this problem and if it has helped? Also, I have heard that Adderall is very addictive, but my brain fog and fatigue is very bad. I asked him if we could try the Cerefolin first because I just felt better that it was a vitamin based drug, even though I know that vitamins in high doses can cause serious problems. Well, no pharmacy in my town can get the Cerefolin. The pharmacists have told me that it is unavailable so I was wondering if anyone is on this and if they have had problems getting it? Also, I was wondering if Cerefolin has helped anyone with brain fog/fatigue or if anyone can share any experiences with Adderall with me? I really appreciate everyone on this board because without you guys I probably wouldn't have ever found Dr. Grubb or had anyone to ask questions or just complain to so I just wanted to thank everyone on this board! Jaime

I am definetely interested, but Ann Arbor might be a little bit too far away because I live in Mt. Pleasant which is about 3 hours away. Also, I have classes on Monday and Wednesday until 3, Tuesday,Thursday, and Friday until 1. Most weekends I am available and a lot of times I go down to Rochester Hills where my boyfriend lives so that might work if I am going down there or if I can get someone to drive me! Let me know! Jaime

I have been on Trazadone and really liked it. It made me extremely tired though so what I did is I cut the 50 mg pill into quarters and only took one quarter so it was about 12.5 mg per day. I didn't notice any effect on the POTS, but I had so much going on and my POTS was so bad that it is hard to tell. Jaime

Have you tried any allergy meds? I get severe migraines, but sometimes I will just get a nagging headache and if I take Allegra that will sometimes take it away. I went through about a year with severe migraines everyday, but now they are trying some different types of meds to try and get them calmed down. If you are wondering if it is from BP fluctuations you might consider getting a baseline BP and then taking your BP when you get the headache. Also, you might want to start a headache diary. That might help you figure out what the specific trigger is. I know you said that you get them after you eat....is it only after you eat a specific food or food group? Some things like that might cause a headache. Also, you might want to consider seeing a neurologist to try and get the headaches calmed down. Jaime

I have had all of those tests plus a stress test. If you feel uncomfortable with your doc's recommendation then I would discuss it with him or get another opinion. With the shortness of breath, have you ever been checked for asthma? There are also a lot of other things that can cause shortness of breath like smoking, being overweight, allergies, asthma, etc? I would definetely check into getting a second opinion if you are uncomfortable and your doc is unwilling to change his stance on the additional testing. Good luck! Jaime

I am in PT right now, but they don't want me to exercise at this point because my blood pressure has been so low. I go for knee pain/swelling and all they are doing now is ultrasound and iontophoresis which is what I get the most benefit from anyways. They are very understanding so they said if I can get my BP up that we might try some exercises, but I am already getting a lot of improvement with the ultrasound and ionto. Jaime

I take Neurontin 300mg twice a day and zoloft 25 mg and when I get a migraine I use fioricet, but usually they are so bad that I end up in the ER. They have a protocol for migraines, but I am not sure what all they give me. You should see a neurologist that is who has really helped me. good luck! Jaime

I completely understand your hesitation with trying new meds. You already feel bad and you definetely don't want to feel worse. I haven't ever felt "drugged" with the florinef. I recently had this problem with starting prednisone and neurontin. It actually took me a month to try them. What I did is I went to talk to my family doc about it because I really trust her and she helped me get over my anxiety. Eventually I was so sick and in so much pain that I could not live like that. You may have some side effects at first, but hopefully your body will adjust. I had some side effects when I first started the florinef, but it made me so much better and able to function some what that I just had to forget about the side effects. If you have been in bed the last year then it (hopefully!!) can't get any worse. I would try talking to someone you really trust and then just force yourself to try the meds because otherwise you will always wonder if they could have made you feel better. I hope that you start to feel better! Let us know how you are doing! Jaime

I work at a hospital as a diet tech (basically a dietician, but I don't have my degree or registration yet, so I can't call myself that). The GI docs and allergists say that you cannot tell if a person has a gluten allergy by doing a blood test. You have to take a biopsy of the small intestine (I think that is it??) and that that is the only true way to tell if someone has an allergy to gluten. However, you can get allergy tests (again, not blood tests, but skin tests I think) to see if you are allergic/intolerant to any foods. You may consider seeing a GI doc or an allergist if they believe the rash to be an allergy. Good luck, I just had the chicken pox so I feel for you! Jaime

I had a similar problem trying to get my records for my disability application. It was going to cost me over $40. What I ended up doing is talking to my doc about my financial situation and she ended up just giving them to me free. I am sure she had a lot more availability to do this though because she owns her own practice. You may want to try that or Nina had a really good suggestion with getting it sent to another doc. That is ridiculous to charge that amount. Good luck Jaime

Merrill, I really appreciate your comments. Apparently pernicious anemia can cause atrophy of the stomach and so in a person who has it, the lining of the stomach (?) should appear abnormal.....I am not quite sure if I am understanding this right. The surgeon said that I do have to have it in a hospital. I see him next week so maybe I will find out more then. Apparently the lab test that showed this indicated that there was an antibody that is blocking the intrinsic factor that is needed for the body to absorb B12. Also, what is twilight sleep? I am not sure if they will use general anesthesia or use something like Versed to cause concious sedation. Thanks for your help!

A few months ago my doc did lab work and it showed that my B12 was deficient. She figured that it was just nutritional so she gave me a B12 shot and rechecked it in 3 months and it was well within normal limits. Well, I recently went to see a rheumatologist and she says that I have pernicious anemia. Well, this doc was not nice at all and I had a very hard time trusting her medical advice so I went to see my family doc. She doesn't think that I have pernicious anemia, but she said that I need an endoscopy to make sure that I don't. She also said that if I do have it that it is not causing the POTS.......she gave me an explanation of why she believes this but I am having some brain fog today so I can't remember. Anyways, the point of this is that I am terrified to have an endoscopy because the surgeon who is doing it is unfamiliar with POTS (I couldn't find one that was familiar with it) and I am just really scared to be put under anesthesia. Does anyone know what precautions need to be taken and if there are, how do I tell him without offending him?? I think he may have somewhat of a God complex, but I do trust him more than any of the other surgeons in my area so I don't want to offend him. Also, I am so scared because I am severely allergic to latex and going to a hospital is a nightmare for me. I am also just so frustrated because it seems like everyday I have a new health problem to deal with and I can't work so my bills are stacking up. Plus I have to start school in less than 2 weeks and I really hope that the EGD doesn't make me so sick that I can't start school on time. I am so sorry to ramble on like this. I would appreciate any help you could offer! Thanks, Jaime

I added some coments to the first survey, but I wanted to post them in case you didn't get this. First, I think that this is a great idea! The second thing is I noticed that on the material, one of the options was latex....I don't know if I am the only one, but I am severely allergic to latex so that would be out of the question for me. I just thought I would bring that up in case there are others who also have this allergy. Although, I understand that latex would be the cheapest option! Thanks for putting together this survey! Jaime

Due to the federal law, HIPPA, passing, the doc must, by law, give you access to your medical records in entirety. I work at a hospital and we have had TONS of training since this law passed. Maybe the next time you call the doc's office you could mention this law because it is a huge deal right now and if any doc's office, hospital or healthcare provider is in breach of this law then they can get in big trouble. I am not a lawyer, but from all the training we have had at the hospital I know that they MUST give you access to your records. You can probably find more info on this law on the internet, but maybe mentioning this law to them will get you some action without having to hire an attorney. I am sorry that you are having so many problems with this.......I am sure you have enough things to worry about with just moving!! Good luck! Jaime

I know in the past that there have been some boards on Neurontin, but I have a few questions that I am hoping someone will be able to answer. The first question is has anyone had a lot of weight gain with Neurontin? My mom gained 9 lbs. in one week after her dose got doubled. I looked on the web, but didn't find this listed as a side effect. The second question is that I was just started on this med to prevent migraines, but I am wondering if this will help my joint pain. Has anyone had experience with this? Also, has anyone noticed if the Neurontin causes more tachycardia because that was listed as a side effect. And the final question is that the med makes me exhausted, will my body adjust to this? I have only been on it for 3 days and right now I am taking 300 mg at night. If anyone has experience with this med I would appreciate any advice you could give me. Thanks, Jaime

I am so sorry that you are going through this right now. I got very depressed after my dx, but now I try to look at what is good in my life instead of what I am missing out on now. I think it is really hard at our age (I'm 24) because I felt like I was getting cheated out of life. It took me some time but I finally got to the stage of acceptance and am able to accept my restrictions. I still have days where I need to have a pity party and I still get really down, but I am lucky to have a good support system that helps me put a smile on my face. I know it is hard, but hopefully you can get through this time of trial and error with your meds. Florinef worked for me except that the dosage that provided the most relief caused me serious side effects that kind of outweighed the benefits that the med was providing. Now I am on florinef, proamitine, and zoloft, but I am still having a lot of trouble so I am going to see Dr. Grubb to see if he can help me out. I wish you good luck and don't give up!! If you need to talk you can email me! Jaime

I have Reynaud's phenomenon which when exposed to cold, even sometimes warm temps my fingers and toes become numb. I also have experienced numbness on my left hip which burns.......it's kind of hard to explain that. Let us know what your doc says about the numbness. Jaime

I still am in shock from this good luck. Lately my life has been nothing but hard times, which I am sure you guys can understand. I saw my doc a couple of months ago and he wanted to refer me to Dr. Grubb because I am having so many problems and he can't really sort it all out like what is from POTS, what is not related, trying to get me on meds that help my POTS symptoms that I can tolerate, etc. Well, I told my doc that I had to be seen before February which is when I lose my insurance and that it would be better if I could be seen before January because then I have to pay a deductible which I really don't have the money for. Well, they called me about a month ago and told me Dr. Grubb was booked until January and would that be okay with me. I told them yes and they said that they would call me back with an appt. Well, I have been meaning to call my doc to make sure they made an appt for me but I didn 't get around to it until today. I talked to my doc's nurse and she said that she was going to call right away. Well, the whole point of this story is that she called me back about 5 minutes later and immediately before she called they had a cancellation so I got an appt for the end of September!! I am so excited because I am having such a hard time right now and I can't work so I haven't been able to pay bills and I am at the point of giving up, but now I feel like maybe I can get some good luck now and then. Anyway sorry for going on and on, but everyone on this forum has been so inspirational and helpful to me that I wanted to let everyone know about this!! Have a good day, Jaime

What is Cera Lyte?? My mom has malabsorption and due to that she gets dehydrated very badly, but the problem is that if she drinks too much of one supplement or too frequently (like pedialyte) then she becomes allergic to it. Also, I am getting sick of gatorade so if you could send me some info on this (what it is, price, etc.) I would really appreciate it. Thanks, Jaime