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    Virginia, USA

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  1. Hi, I just wanted to add that my doctor has me adding 3-5 drops of tea tree oil to my nasal irrigation to help with infection. It stings a little but otherwise has been working out fine for me. good luck, Pam
  2. Hi, Lyme is present all through the US, including Ohio. As far as the numbers go, I think they are greatly underreported to the CDC, considering the testing is unreliable. Here is a map showing up to 2006 - http://www.lymediseaseassociation.org/Maps/index.html If you suspect Lyme you should get checked out by a lyme literate doctor. The web site lymenet.org has a section on their support forums for those seeking a doctor. For me, I only found out I had Lyme after testing positive for 3 other tick borne coinfections. Prior to that I had always had negative lyme tests and thought there was no reason to pursue further. Here is a link to a listing of symptoms - http://www.lymeinfo.net/lymefiles.html If you want more information, feel free to send me a message. Take care, Pam
  3. Hi all, in case you haven't seen this yet, there are multiple free talks being offered throughout the week that you can listen to online. http://www.restministries.org/invisibleill...illnesshome.htm Enjoy ;-) Pam
  4. Hi Sara, Like you I have never been able to tolerate BCP, and my gyno always seems to recommend them... About a year ago I did discover that I have low progesterone, and since them have used a compounded cream. The cream is great, it has regulated my period, and I don't have any side effects from it. To get this I had to see an alternative doctor however, I'm not sure my gyno would have ever gone this route... On the other hand, I can't say I've noticed a specific difference in my pots symptoms, other than the fact that it did seem to help me fall asleep at night. But hey, I'll take any improvement I can get :-) Oh, I also take chaste tree berry supplements, as that is supposed to encourage your body to produce progesterone. good luck, Pam
  5. Hi, welcome I think it's great that you are looking into a cause for POTS. I really believe that this is very important to do. For years doctors told me that my POTS was due to ehlers-danlos, and after hearing that I never really confirmed the diagnosis because I figured I couldn't change much. But a few years later I started having new problems, which led me to a new doctor and a lyme diagnosis. I've now been in treatment a few years and have seen improvement with my POTS symptoms. My regret of course is not having pursued finding a cause earlier. On the issue of parasites, I got one of those too from a tick - Babesiosis. I hope you find some answers! Pam
  6. Hi, I took clinda for awhile for tick borne illnesses, and it was one of the most helpful antibiotics I have taken. I felt really good while on it, and as a bonus it cleared up my skin really well It did not bother my pots symptoms at all....in fact, I would say it was the opposite, that it improved them. But granted for me, this is probably cause it was keeping the tick stuff in check. As for digestive issues, with some I think it helps, it's just c diff that is a problem because it can get worse on clinda. I believe I had a test for c diff before starting. good luck, hope you feel better. Pam
  7. Hi, I've been using All One's rice based multi-vitamin and mineral powder. I started using it after my doctor recommended not to take tablets because they don't absorb as well. I like the rice base because it is free of common allergens. The cheapest place I've found it is at Vitacost - http://www.vitacost.com/All-One-Nutritech-...tamins-Minerals
  8. Hi everyone, Thank you for the kind words It's been fun working on the newsletter. My schedule seems just too hectic these days, and combined with not always feeling well from lyme treatment, it's just time to try and lighten what I can. Miriam, Thanks for volunteering! I will send you a message with more info, probably not til next week. Gonna try and sneak in some vacation Thanks again, Pam
  9. I have similar issues with not being able to tolerate the pill and having horrible cramps. Sorry to hear you have to deal with that. Have you had your magnesium levels checked? I read somewhere (sorry don't remember where) that there is a link between magnesium and cramping. As far as personal experience, my levels were really, really low and I went for a few IVs that included magnesium. It improved my cramps a lot, so I've been trying really hard to keep up the oral supplementation, although nothing works as well as the IVs. good luck, Pam
  10. Hi everyone, For the last couple of years I've been helping DINET by designing the newsletter that gets released quarterly. After much thinking, I believe it's time for me to pass the torch onto someone else. I have enjoyed working on the newsletter, and I'm hoping someone on the list will volunteer to take this over from me. So....looking for someone who is willing to spend a couple hours 3-4 times a year to take the newsletter content and arrange it so it looks nice. You get to use your creativity!! I've been formatting the newsletter in HTML, but previously it was done as a PDF, so you probably could do this in any format that will go on the web. However, if anyone would like to learn HTML, I'm happy to teach Michelle, anything else you want to add?? Please either reply here, or send me a message if you're interested. Thanks!! Pam
  11. Hi, I used to get compounded vitamins from a pharmacy in Maryland. You can call in an order and have it shipped to you. For the ones I got I needed a prescription however, and I'm not sure if it's like that for all compounds. The employees that work here are fairly knowledgeable about what they sell, so maybe it's worth a call to ask. http://www.myvillagegreen.com/pharmComp.aspx good luck, Pam
  12. Hi, I have a condition with my veins - Livedo Reticularis - that acts up in the cold. Basically, the veins are constricting and sometimes they do get pretty achey. Just wanted to mention it because symptoms do improve with heat. When it is acting up I can see a spider-web like pattern on my legs. Hope it gets better for you. Pam
  13. To find a LLMD you can check out http://www.lymenet.org/. Under 'flash discussion' there is a topic called 'seeking a doctor' where you can post your request. I think LLMDs can be in other specialties as well. It's similar to finding a POTS doctor unfortunately, there just don't seem to be enough of them
  14. Hi, Yes, I do believe either lyme or the other co-infections I have are the cause of pots for me. With treatment for babesia, one of the co-infections, I have been able to stand longer. I think it's always smart to at least rule lyme out. I never saw a tick on me, although I did like hiking and camping. I do want to mention that lyme testing is very unreliable, so a negative lyme test does not necessarily mean you don't have lyme. To truly rule it out you'd need to see a LLMD (lyme literate MD).
  15. I also get periods of extreme thirst. I think they've become less as time progresses, probably because I've learned what works best for me. To keep myself hydrated I buy the powdered version of gatorade, and I'll sprinkle just a little in my water. This is usually enough to do the trick without all the added sugar. Sometimes I alternate with sea salt. And sometimes I'll use Emergen-C. There is a light version that is low on the sugar. I find those little packets are great to take with me when I am traveling.
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