pamyla

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

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

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

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

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

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

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

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

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

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

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

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

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

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).

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.

My ANA was previously slightly elevated. I got sent to a rheumatologist to evaluate for autoimmune, and they kept bringing up lupus. Exploring this is how I ended up with my lyme diagnosis. With treatment, my ANA seems to have returned to normal.

I also have horrible cramps. I've had them for as long as I can remember, pre-pots, and the gyno has always said there isn't a problem.

The only things that work for me are mass quantities of ibuprofen, and cramp bark. I added the cramp bark recently, and it has actually reduced the amount of advil I need to take. In the past, I've also tried increasing my SSRI the week of my period, and I'm currently on progesterone cream, but neither one seemed to do anything about the cramps.

Interestingly enough, I am also not able to tolerate birth control pills either. Have you had your hormone levels checked?

I hope you find something to help you.

Pam

Hi, I occasionally get flushing, usually when I am really stressed out. For me I feel this rush of heat to my face. I had this happen last week when I was about to get an IV, and the nurse could not get the needle in. After the 4th or 5th stick I started to feel the flushing. Later, we found my blood pressure had jumped up about 20 points. So, I suspect, at least for me, that this is a symptom I get when my blood pressure goes too high.

Hi Priscilla, That's pretty interesting information - thanks for sending! Sounds like you've done a lot of research on the topic. I suspect that Genovations only wants the doctors to have the information, hence the reason for not having a lot of information on their web site.

I took a look at my test results, and it looks like there were 8 genes looked at on cytochrome p-450. 2A6 was one of them. I was normal on that one, but had a mutation show up on 1B1. There is then a 2nd part to the test that looks at genes categorized under the sections: Methylation, Acetylation, Glutathione conjugation, and oxidative protection.

Glad to hear the lyme treatment helped you - somewhat at least. I technically haven't really started treating the lyme because I can't seem to get rid of the co-infection babesia I've seen improvements, but it's still a long road.....

Take care,

Pam

Hi Priscilla,

I recently took a test similar to what you are talking about. The one I took was through Genovations, and it looked at how my body was detoxing things in the environment, as well as, certain drugs. For instance, I learned I am not able to tolerate synthetic estrogen and should not take birth control pills. There was also a class of antibiotics which I believe I would have trouble metabolizing. I took this test as part of my treatment plan for lyme, not pots. I don't know that it got down to the level where drugs I'm taking for pots were mentioned. Also, I had my doctor to interpret my results - I'm not sure I would have ventured into doing this on my own. The test itself was just a simple blood test, but you're right, not exactly cheap....What kind of drugs do those tests you mentioned look into?

Good luck,

Pam

I'm on a similar drug to Plavix called Persantine. I was put on it because I have problems with blood coagulation. I seem to remember that the first week or two I was taking it I felt a little bit more dizzy than normal....and so I think I worked up by taking it every other day at first. After that I had no issues with tolerating it. Hopefully it will be the same for you.

I know there is an alternative called nattokinase that some people take. It's soy based however, which I'm allergic to, hence ending up on persantine. Might be an alternative to look into, although I'm only speaking from my perspective on coagulation....

Hope the migraines improve for you!

Pam

I've tried biofeedback before, but not specifically for pots. Years ago I was seeing a therapist and she put these sensors on my fingers that tracked your body temperature. Well, my fingers were probably about 70 degrees - there's the Raynaud's for you I guess When the temperature rose the thermometer would beep. She had me close my eyes and relax and my only instruction was to try to imagine my hands getting warm. At first, nothing happened, but at some point I figured out how to do it and I was able to raise the temperature of my hands to the normal 98.6 by just thinking about it. It was a neat experience, but I've been less successful doing this on my own unfortunately. I think it takes a lot of practice.

For Christmas this year my husband bought me that biofeedback game from Deepak Chopra - Journey to the Wild Divine. This I could see being helpful for pots symptoms because it really does force me to relax.

Pam

i guess im wondering do any of you who've experiences long term debilitating fatgiue.. and fatigue.. and oure exhaustion arent even close to what i feel.. but do you ever find a reason for it? i mean or do ya just gotta deal with it??

I'm so sorry to hear you have to deal with so much fatigue, pain, stress, etc. And fatigue just doesn't really cut it as a descriptive word for how tired you really feel, does it? More like being hit by a truck I have had the fatigue that you describe, I can remember days where it took me an hour to crawl 10 steps to the bathroom I've also had to deal with pain, both joint and muscular depending on the day. Sometimes, even with pain killers, nothing has helped and I just want to sit and cry. For me, I did find a reason, and it ended up being multiple tick borne illnesses. Specifically, babesiosis really caused me problems with the high heart rate - and I've seen some improvement with treatment. Just wanted to mention in case you haven't explored that route.....

I hope you find some answers and feel better soon.

Pam

I've been taking a gentle yoga class for the last year and it's been really helpful to me. Before this class, I was basically exercise intolerant - I could manage about 5 min on the recumbent bike if I went slowly Most of the people in my class have disabilities, so the class has a lot of relaxing floorwork, and usually ends with a few minutes of standing exercises - which is tolerable. I find that I've built up muscles in my legs, arms and core area from the classes. For those of you mentioning that yoga was too hard, you might want to check with your local rec centers to see if they offer any of the gentle classes for those with limitations.

Good topic! Here's what I can think of right now:

- I keep a spreadsheet of all my medications and vitamins, which I update and print out a copy everytime I visit a doctor. I also make sure to write down any questions I want to ask, and a timeline of future appointments, main symptoms, etc. It's the only way I can keep on top of everything

- Power/nutrition bars - great to keep in your purse just in case you get stuck somewhere and the blood sugar is dropping

- I use those neck wraps with rice in them, I don't know what they're called, but you can heat them in the microwave if you're cold, or put them in the freezer to cool yourself down

- laundry bags - while I can't lift a laundry basket to get it down the stairs, I can manage to kick the bags down

I'm also a big fan of headbands for the hair, or ponytail holders - and definitely air drying