August 10, 2015 at 10:05 pm #883SusanhurtsParticipant
Hello all and Dr. Diana,
I was diagnosed with EDS 35 years ago by the head of dermatology at Emory. Johns Hopkins diagnosis of POTS in 2000. Mast Cell Activation Disorder with genetic propensity 6 months ago. Lyme six months ago by same doctor who diagnosed lyme.
My problem(s) are that I am hugely sensitive to medications and cannot take the antibiotics that I need to. The doctor that diagnosed the MCAD is kind yet he does not understand why I have “anxiety”….I have soooooo many symptoms of MCAD. It is as if someone has been reading my life story. Long story that I will make short. I had a hysterectomy because of all the PCOS and MCAD symptoms. I just found a pubmed study yesterday that talked about rabbits that had their ovaries taken out became even MORE SENSITIVE to histamines. Well, I went undiagnosed but the “seizures” that I get during a flare were helped immensely by a doctor that prescribed Klonopin. I did not know that I was bitten by a tick…we just thought the Klonopin had quit working. GEEZ. Now I know. I am on 6.25 mg. of Cortef. I was put on it before we knew I had lyme. It made me feel much better. No one really wants me off that dose, now. I have been on it seven months. I now know that klonopin was a lucky guess on my doctors part because it is a mast cell stabalizer. I have been stuggling with symptoms since my teen and really tough since my 30’s. Now in my 50s with a tick disease I really need someone who knows their stuff.
Dr. Diana, I wish you were doing phone consults. I do wonder about the chiari malformation, too. I had an MRI and they measured the blood flow (the iodine flared me horribly) and I was at 90%. They did not see anything abnormal. I have had way too many “normal” tests to believe. I do suffer head pressure with headaches in the back. What is the cure?
I started Pepcid yesterday and Claritin. I will try Zyrtec next. My integrated doctor is horrified about the Pepcid. I need all that stomach acid he says, and I will get scads of candida and bacteria and parasites if I keep up the 30 mg. a day. Yes, it did help. The anxiety, crowded throat, etc got better. What to do?
I am open to suggestions….Any good doctors in northern CA for MCAD? I need help! The doctor that diagnosed me is in VA and I am too weak after getting a frozen shoulder and weird nodules under my skin to be driven back.
Many thanks….August 11, 2015 at 9:28 am #5600
Hi Susan, I’m so, so sorry for your suffering. This condition is a BEAST, and as you know, I believe most of us are not being evaluated or treated correctly. If you have The Driscoll Theory book, you’ve likely read why I don’t believe MCAD is *the* answer (the FINAL BOTTOM LINE), either — although it’s close, and mast cells are certainly getting involved. I have not done consults in a long time because it was too frustrating to try to get someone’s medical team to think of this condition differently, and try to evaluate and treat us NON-invasively. Alternatively, you may want to check out POTSCare.com. We are announcing this this week. FINALLY, we have a team together who will approach our illness by evaluating ALL symptoms (and signs) at once, and considering all angles to find the underlying problems and to treat based on that (instead of purely symptomatic relief). I hate that many people may not be able to travel for this, but we will release information about successful treatment as we have it, so that everyone around the world can benefit. This appears to be the best way to speed up this treatment paradigm shift and to get the word out. Meanwhile, if you can’t make it to POTSCare, the information in The Driscoll Theory and the free brochure on POTSCare.com may be enough to get you started for now. Big hug…August 14, 2015 at 11:11 pm #5601SusanhurtsParticipant
Dear Dr. Diana,
I have the Driscoll theory. I cannot find the free brochure on POTs.com. I did find the website, though. Very exciting. I am taking the antihistamines and they are helping. I bet you are quite correct that it is not the BOTTOM LINE. I do know that they help. I had a concussion and it brought out all kinds of symptoms. Firstly clear fluid ran from my nose. Now, when I drink quite a bit of water my nose runs. Go figure that out…My lyme would be late stage but my blood work is inconclusive. I have, as you know, POTS, EDS, and MACD…genetic variety. Heck, I even had a surgery done to enlarge my urethra at the age of 2 because I was having so many cystitis infections. Now I know that my C1 C2 are out of place. The night of the concussion, when I lay down seven hours later, I got the most FEROCIOUS HEADACHE! This sounds like too much pressure to me. I cannot get alkaline! My BUN levels have always been slightly elevated or high. My lyme doctor has given me the Diamox. I took it…it tried to work. I would love to see any information from POTS.com. I went to the website and it just talked about who you will treat. People like me! I am not in great shape to travel…I am in CA with an integrative lyme specialist. We have not started treating the lyme. I am so sensitive.
I am a “Valley Girl” from South Texas. It would be great to be treated closer to home. Ranching family. My
grandfather was Lloyd Bentsen and my mother is Betty Bentsen Winn.
SusanAugust 19, 2015 at 11:36 am #5605
Susan, you may want to take another look at POTSCare.com and you should see the free brochure just below the “Request Appointment” button on the top part of the site. Do you see it? I hope it is helpful! 🙂August 20, 2015 at 7:56 pm #5614BarbaraParticipant
Just been on POTScare.com, found the download brochure bit, input my name and email address and ‘hey presto’ your brochure landed in my email inbox. Let me just say that, you make the brochure sound useful just for newbies but let me recommend it to ALL because, far from it been a simple overview, it has some VERY useful info on it about the kinds of testing POTS (or suspected POTS) sufferers need to be checking.
DIANA YOU ROCK!!!
Barbara.August 21, 2015 at 10:04 am #5620
I’m so glad that worked for you, Barbara (even over the pond!). The internet can be amazing… 🙂 Yea, my top 4 things look NOTHING like the “traditional” top 4 things (which likely include salt-loading, Gatorade, midodrine, and psych testing/anti-anxiety meds). I believe it is time for a dramatic shift! We need to address medical issues first, while treating them is easier and more productive. I hope this brochure gets people off to a good start. Susan, I hope you were able to find it?
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