Angela

Like I said, it is controversial and many don't "buy" it but many people say the treatment suggested saved their lives. I am not saying I am sold on it that everyone with pots has it because of a parasite and understanding is still somewhat in "infancy" like pots, but the treatments that have been suggested to me so far as pots meds protocol have not worked so......i think it's worth exploring other possible causes and treatment.

Echinacea and Autoimmune Disease There is considerable controversy over the safety and value of echinacea in autoimmune disease. Given the great variety of disorders that come under this classification, and the associated complexity of immune imbalances, it seems unreasonable to suggest there might be no circumstances when the herb is safe and useful. On the other hand, echinacea might not suit all patients with autoimmune disease. On this point, the few documented cases where it might have been associated with a patient's deterioration have been taken as a proof that it is contraindicated in autoimmune disease. However, this ignores the countless cases where echinacea has been safely prescribed in this context. There is growing evidence from individual cases and experimental models that autoimmune disease is often associated with a defective functioning of some aspect of the immune response, especially involving NK cells. NK cells are part of innate immunity and hence, this aspect of immunity can be deficient in autoimmune disease. In contrast, some aspects of T- and B-cell responses, which form the acquired immune response, usually are overactive in these disorders. The NK cell deficiencies probably vary across the range of different autoimmune diseases, but also might vary for individual patients expressing a particular disorder. (This latter point might explain why a handful of patients with autoimmune disease do not respond well to echinacea.) For example, patients with systemic lupus erythematosus often are deficient in NK cell function34 and the role of NK cells in inhibiting autoimmunity in general has been well-established from experimental models.35,36 Natural killer cell dysfunction also is a distinguishing feature of systemic onset juvenile rheumatoid arthritis37 and circulating NK cells are reduced in psoriasis and rheumatoid arthritis.38 A particular focus has been on NKT cells, which are a subset of T-cells that share properties of NK cells and conventional T-cells.39 NKT cells are potent producers of immunoregularity cytokines that can control an overactive immune response. A survey of patients with different autoimmune diseases found around half had reduced numbers of NKT cells.40 Given the above, the findings noted previously by Sandra Miller that E. purpurea root boosts NK cell numbers and function in experimental models are particularly relevant. Dr. Miller and colleague Danielle Delorme also have examined the effects of echinacea root consumption in non-obese diabetic (NOD) mice, a model of human type 1 diabetes. NKT cells are believed to be implicated in type 1 diabetes and their functional and/or numerical deficiency is thought to be largely responsible for the development of this disease in NOD mice.41 When NOD mice were fed echinacea for varying times. there was a substantial and significant increase in NK cell numbers. This was the only type of immune cell influenced by the echinacea in these mice.

http://www.avonhistory.org/bug/l12.htm Hey MomtoGiuliana, thanks for looking into it but that casewatch is very old and from what I find after talking to several well learned references and basic googling, Dr. Burrascano won, and has never lost a case. Below I am quoting from someone else that I thought well spoken: New disease labels are being invented every day for different manifestations of a few microbial causes...Borrelia Burgdoferi (lyme)....different strains of mycoplasma, babesia, brucella..etc. Many of these "autoimmune" diseases are really infectious diseases. Why is it that our medical doctors...especially infectious disease specialists, do not even test for these possibilities? Dr. Joseph Burrascano...a very well respected lyme literate doctor gave the following testimony below to the Senate Hearing Committee on Lyme Disease. Dr.Burrascano states in his testimony that he feared repercussions for speaking out at this Hearing. Well...his fears were founded. Several years down the road he was investigated by the Office Of Professional Medical Conduct in N.Y. Many activists and patients..whose lives he saved...raised money for his legal expenses. He was finally vindicated and did not lose his license....unlike several other doctors who have treated chronic lyme and were punished for it. So, I know this is a controversial topic but one worth exploring, especially since lyme can cause pots, and many other severe dishabiltating disorders.

http://www.publichealthalert.org/pdf/2013/2013_1.pdf

this question is based on my little sister. she texted me pictures of crazy bruises, some raised, some flat but huge all and all. I actually couldnt believe it. she counted over 27 bruises on her body one day and they just come, no explanations, i think mostly on her legs and arms, a few on torso. she got tested for cancer and that was negative. also, she is extremely fatigued. She got her "tubes tied" last year. I think it is something blood related? My older sister has ms. we all came down with issues around age 30. I suspect we had them prior but can't be for certain with my sis's. We all have the same mother, my oldest sis has a different father. we grew up in the midwest, with plenty of ticks and mosquitos. is it possibly related to parasites and our genetics? I am trying to figure out how to point lil sis in the right direction since she doesn't research so much for herself being a single mom with 3 kids. plus, she is on medicare and indiana dr.'s that know their stuff... rare.

I was mentioning to a coworker that licorice root helps a lot of pots patients from what I gather and she explained to me that she was recently dx'd with adrenal fatigue. She went home and looked at the 2 meds that her naturopathic doctor told her to use and found Adrenoplex (by Priority One) contains licorice root. also contains panthothenic Acid, Ascorbic Acid, Zinc, Beta Carotene, Siberian Ginseng, Adrenal cortex and Pituitary. It is designed to help immune system support, adrenal support, streess, fatigue prostate cancer (what?) and elevated PHC levels. Also supposed to enhance metabolism. The other pill she takes is Isocort by Bezwecken, designed to provide adrenal support for those with reduced cortisol levels which can result in many symptoms including: fatigue difficulty getting up in the morning food cravings allergies anxiety lack of energy The ingrediants are fermented plant derived cortisol, and echinaciea Purpurea, also contains magnesium stearate, starch arrowroot, and a few other ingredients. It does contain lactose however. Does anyone take either of these or variations of them or even think it would benefit pots at all? Seems like they might.

me too Rama. That's why I always question when people say they have improved, I am glad they are feeling better but I do notice many have relapses down the road as I have had although I am so not trying to put a negative spin here. I have had times of improvement and then bam it's back for no rythym or reason I can figure.

dr. goodman is who all my pots friends go to so i think you r in well hands no one has ever told me anything bad...and they must like your insurance lol

so kelly saved by grace happyu that u r doing better. are you hyper? do you flare and the go thru un-relapses of almost well being so to speak?

Dizzysillyak, please don't be offended but i so question long term with the paleo diet. i know you have ataxia but who, what dr. recommended that diet? I'm glad its helping you for now th0!

i hve met a girl, who says they dx'd the heart rate in the utero. she has a pacemaker now thus, and still pots and am 99% sure it wasnt familial dyso.

yeah, i want to see a naturpath dr but insurance doesn't cover. a friend of mine, who is hyper somehow the super naturpath specialist she went to did some sort of test that showed she was not compatible with florenisef (sp) which she has been taking for years as well as a bb, she is hyper for sure, only discovered in last yr or so but her ne levels are so high.. on the other hand, a lady i work with has adrenal disorder of she takes a naturapathic which has licorice root, she said it is to correct her thyroid mainly.

yeah i loose hair but cannot connect it to aging or drugs i have trialed. i dont get bald spots or anything but my hair has thinned. i think that could also be due to aging, my hair was thicker (yet still vey fine) in my 20's then in my 30's which i think is normal

i am not native to az and have a hard time with phx, it just lacks history for me and is blazing hot in the summer. my fav spots in AZ so far are jerome, and strawberry. in strawberry only the winter so i can sled and feel like a little girl again. jerome you get the feeling like being in another world and culture, despite the tourists but you get those in sedona too. i occassionally converse with someone from the uk who goes to sedona 2x per year, she swears it gives her energy/healing. i guess lotsa people believe that. she has cfs/me, pots and FL1953. not trying to hijack the thread tho. (sorry foggy01)

i havn't rationalized it yet. still exploring underlying cause as well although have found none so far....I believe for me it is autoimmune, just don't know what the trigger was for sure. waiting to find out more hopefully with 23&me in the next couple months.

Jamie, you know that I am so sorry you are dealing with this now too! what I find interesting - sometimes, i have normal blood sugar sometimes it shows high (not nearly as high as Jamie's when she went to the doc initially tho). But, I believe both of my parents developed type 2 later in life, (I think, not positive). Last time I saw my birth mom she mentioned it and is on a special diet and tiny compared to the last time I had seen her. couldn't say for sure what my blood sugar is doing since i don't have the means to track regularly and compare results to what I have eaten prior!

it does give me energy. I take it in late afternoon when I start crashing. I started taking naturemade brand, 100 mg but the past 2 months I have been taking Qunol brand ultra COq10 100 mg 1x per day (it was on a major sale!). it is ubiquinone USP grade and I didn't know till just know but has 150 IU vitamin E (500% daily value). it says 300% better absortion pharmaceutical grade. I did notice more jittery feeling when I first started switched brands, so I am sure it is more powerful but I am now used to it now and just notice an increase in energy.

yeah, i am happy that you went in! listen to your instincts, even if we think they are skewed! pots doesn't make us stupid, ya know and I am happy when our instincts can still show credibility.

Angelloz, "I get these tremors too when I am very symptmatic. Legs in particular...but once during a severe attack hands and arms too. In the ER they ask if I'm nervous....I basically don't say much I know what they're thinking. I haven't checked my pupils at this time. I get very cold and hot alternating. I usually never sweat... but once in awhile I'll wake up very sweaty...why???? Who knows. As far as body temperature regulation one odd positional thing is this; every night when I get into bed I am cold, within 2 minutes of laying down I become blazing hot and kick off all covers until it settles down. It seems like my body has problems adjusting to any change" i still have hand tremors on occasion but the full body tremors have decreased tons since my major flare last jan 2011. i don't usually sweat either abnormally according to my ans testing on one particular day but sometimes I wake up at night drenched, even tho I feel kinda cold and then an hour later the opposite. i think it's just part of ans disfunction, to say the obvious.

i meant to add that I don't really know if my eyes roll but closing one eye helped, especially driving, before I got dx'd when I was experiencing tunnel vision or something to that nature.

yeah i noticed i did that back in the day when I had one too many. I don't think I do that anymore tho unless I am at work and trying to read something while moving my head to see comparisons of paper to paper..btw I have perfect vision so not sure why.

aimes, yeah i hear you I have a 3 1/2 yr old son and that's hard keeping up with. He's always wanting to play ninja, power ranger, when he was 2 it was ring around the rosy and I couldn't figure out why that made me feel so sick! I love yoga, i did it prepots dx and it gave me more energy and keeps me toned. plus you can do floor exercises if you are dizzy with the up and down positions, but sun salutations feel freakin awesome when I can do them. guys think it is sissy stuff but there are some great dvd's you can get and the dudes are super muscular/toned from yoga!

i have constant blushing on my sternum or clavical area and sometimes up my kneck, it never entirely goes away but is more profound at times, idk why. sometimes i break out in a slight rash too by my neck. I am not dx'd with mcad but found that h1's and h2's helped out immensly with tinnitus and tingly feet and hands symptoms and if I don't take them my pots symtoms are worse. of course it is redder when out of hot bath or shower but for me touching sensation I don't experience any pain.

i was sitting, then standing when myBF noticed. but i think i have had dialation for awhile usually when standing cuz otherwise I am sleeping!

i have never experianced pain during my convulsions, only feeling very cold even under blankets in the middle of summer, teeth chattering too.. and adrenal stuff. however, at my first bad flare my right ( I think it was the right hand) I couldn't clench even tho opposite hand worked. they noted higher blood sugar and tachycardia too. urgent care sent me to er where i waited for several hours to be seen, by then, my attack was over. waste of $