January 27, 2014 at 8:28 am #655
Has anyone been through Dr Ritchie shoemaker’s protocol, tested and found out hey have no adh hormone, no msh, low vegf, high c4a, high tgf beta 1 and started to address these issues? I am wanting to try ddavp to correct blood volume depletion, anyone have success with this?February 3, 2014 at 12:11 pm #4837
I have taken DDAVP at a low dose and did not really notice a diference either way but my blood volume was low normal. My BP does run low though. I am taking Midodrine now.February 3, 2014 at 12:25 pm #4838
Was your adh hormone low?February 3, 2014 at 2:00 pm #4839
I don’t know. When I have tests done by the endocrinologist they are off sometimes and normal sometimes. I need to get tested again for the ADH.February 3, 2014 at 2:05 pm #4840
I don’t test through endro, I am doing dr shoemakers protocol do you have other issues besides pots?February 3, 2014 at 7:24 pm #4841
I have EDS, gastroparesis, osteoporosis, mild anemia. I will have to read about Dr. Shoemakers protocol.February 3, 2014 at 7:29 pm #4842
How long have you had pots” where were you diagnosedFebruary 3, 2014 at 7:47 pm #4843
I have had POTS since I was 22, about 23 years. I was diagnosed at Mayo Clinic and Vanderbilt after 3 to 4 years of trying to get a diagnosis. Without meds, my HR increases over 100 BPM with standing immediately and stays there until I sit down or lie down. My adrenaline levels standing are over 2000 without meds. I also had severe gastroparesis. I still have it but it is not as bad. I also have chemical sensitivities and I was exposed to chemicals and that was the trigger for the dysautonomia. I did test positive for mycoplasma early on but was never treated for it because my doctors felt the test was wrong. I believe it is a common co-infection for Lyme disease. I also have a severe mold allergy. I do plan on having allergy testing done again soon and getting tested again for the mycoplasma just in case it is still positive.February 3, 2014 at 8:01 pm #4844
Interesting, I tested positive for lyme last year but never knew i. However I am genetically susceptible to mold and from the works of dr shoemaker and my doctor that is probably the straw that broke the camels back! Mold allergy is very different. You should read his work. The reason I’m starting ddavp is because mold exposure depletes your body of specific hormones including adh. Which leads to pots. It is correctable in most people hopefully I will be one of them. I have extreme adrenalin in the mornings especially:( what do you take for your pots right now?February 3, 2014 at 11:50 pm #4845
I am on low dose clonidine, atenolol, lorazepam and Midodrine. The clonidine helps with the adrenaline but it lowers BP so that is why I take the midodrine and sometimes DDAVP.February 4, 2014 at 6:57 am #4848
So you only take ddavp sometimes? Does it help at all? I’m starting the nasal spray at a very tiny dose and working up. I want off the beta blocker. My doctor explained to me once I have built up blood volume my heart should stop going crazy, I won’t be as thirsty, and should start to regulate things. My adrenaline is off the charts in the morning it’s crazy, add to that head rushes, balance issues, and dizziness! Ball of fun.February 4, 2014 at 10:18 am #4849
I had been taking the DDAVP every day for a few weeks to try to help with the dizziness but I do not think it was making a difference so I stopped it and am going to give the Diamox a try. My doctors think I may be having migraine associated vertigo or partial seizures causing this motion sickness type of dizziness. The DDAVP may have been helping the standing symptoms, not sure. The low dose clonidine was a big help for my adrenaline problems but it can cause low BP and my adrenaline is still high when I feel like I am going to pass out or do pass out while sitting or lying down with the dizziness. I hope the new med helps you. BTW, I am never thirsty so it may be more effective for you.
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