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Lots of questions!!


Jaime
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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. B) 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! B)

Jaime

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Hi Jaime,

Dr. Grubb is my doctor and I have the same diagnosis...I take the Cerefolin and Adderall XR. Without the Adderall XR...I would not be out of bed or off the couch. I have a very productive life now that I am taking Adderall XR. Cerefolin is very new and the pharmacist had to order it but it is very easy to get. I am curious as to why your pharmacist is having trouble.

As far as Adderall being addictive...I have read it can be but it is for me like insulin is to a diabetic. My veins need it to constrict and help push the blood throught the veins...if I forget to take it...my body doesn't go through withdrawal...I just go back to lying on the couch or sitting in a chair all day. My blood pools into my extremities and my heart cannot work efficiently without the help of the vascular constrictor.

When I take Adderall I am not hyper or high strung...I can even sleep. It helps my veins which then pumps the blood through my body...leading to OXYGEN TO THE BRAIN...which has been great! I can finally think!!!!

So, I am trying to say... it has given me a quality of life that I didn't have.

The Cerefolin doesn't help with the EDS problem...the Adderall does. Cerefolin helps sustain my energy throughout the day.... Both have different functions.

You may want to go to the bottom of the DINET page where it says'search' and put Adderall in and then 'search' Cerefolin. You will get all the topics and replies from the DINET forum which talk about these two topics.

Dr. Grubb is the best...so glad you are getting help. My life is so much better since I saw him in March of the year. Good luck....Karen

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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

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Hi Jamie,

My daughter saw Dr. Grubb for the first time last June, he dx'ed her with POTS & joint hypermobility. He recommend the Procrit shots for her, he did say it would be hard to get insurance to cover these shots, it's approx. $600 a month. We went through a hematologist recommended by our PCP, it took three letters of appeal to finally get approval for the Procrit shots. So, there is hope! I cannot tell you if the Procrit injections are working. My daughter has only had three injections, I've been told it takes at least 6 weeks to start working.

We don't know anything about the Cerefolin, maybe it wasn't recommended because she's only 15? My daughter had already tried Adderall when she saw Dr. Grubb, Adderall didn't work for her. Dr. Grubb did talk about Provigil for brain fog, she has been taking Provigil since mid July and likes the effects of this medication.

Angie

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Joint Pain - Neurontin has been the first medication that completely takes away that pain, it took Dr. Grubb to figure that out. Before that I suffered for over 10 years with the extreme pain and multiple doctors that told me they couldn't figure it out.

I get the Epogen injections and IV Iron and it has turned my life around. It has been the first combination of medications that have improved my life. It is expensive and my insurance wouldn't cover me getting the medication from the pharmacy and giving myself the shots but they did approve my doctor giving me the injections every week!

I have never tried Cerefolin or Adderall. I take many other drugs though.

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Hi again Jaime!

I forgot to answer a few of your questions...sorry. You asked if I live in Michigan..I do...Adrian, Michigan and I don't have any trouble getting the Cerefolin from Walgreens. I noticed someone said they quit taking it because it gave them a headache...I also got a slight headache too...so I cut it in half and started taking a half a day. Now, I talk one a day and don't have a headache.

I don't think it has helped me with joint pains or aches..those were taken care of when I started B-12 injections...also, took care of brain fog. THe Cerefolin helps my associative thinking ability...I am able to process information better. Since it is a 'food supplement' I feel comfortable taking it.

But again, I did get a slight nagging headache...cut down..now I take one per day.

Good luck..maybe you can call Walgreen's in Adrian.

Karen

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