GypsySoulNicole

I've been on grapefruit seed extract since starting lyme treatment in January. I also started the Alpha lipoic acid back in April. I noticed some pain relief from the grapefruit seed extract. The liquid is SO sour! I switched to a pill form, I think the brand is paracan myc. Btw, Issie, I haven't been on in a long time. I didn't get to go to my follow up appt. to see my blood. I've rescheduled for Aug. Feeling so symptom free I slowly fell off the Samento, Banderol and other supplements. Pots came right back! I even passed out again last week. After a trip to the Naturopath, I am back on meds and getting back to feeling good.

Thank you, Issie! BTW, my post was not intended to encourage any potsies into holes and crevices in search of recluses for treatment! This is gonna leave a scar!

Last week I posted in another topic on pots recovery that I had enjoyed 10 days of total pots recovery. I attribute my progressive improvement to diet, treating lyme, adderall, coconut oil and other supplements, removing toxic things and people from my life and Earthing (which I posted another topic on). One important thing that I left out, due to the fact that I didn't realize it was a factor was venom. The first day I woke feeling really good. So good, I decided to stroll through the woods seeking out rocks for landscaping. I was bitten by a later identified, brown recluse spider, which wasn't a big deal early on. It was the next day after the bite that I woke with what I referred to in the other post as super or wonder woman strength! Total improvement in pots symptoms, neuropathy (first time I slept without an electric blanket in 15 years!) I felt so good, I kept working every day, pushing myself in shock at how well I was. I shoveled mulch and was non stop going. The spider bite progressed over that time from what looked like a mosquito bite to a small crater with black center to a blister covered mess eventually leading me to an ER visit a couple nights ago! ( I know I should have went to the ER earlier but I was feeling SO good!) In the ER my vitals were normal! They started me on 2 antibiotics (which is freaking me out because of past C-Diff hospitalization) and Benadryl. I was to come right back if it worsened at all. I started the meds and today, became feverish, had bodyaches, pain and just felt lousy. I took my vitals and BP was all over the place, sky high then extremely low, my resting HR was over 100 again, like POTS was back to visit. My feet became cold again and I've cranked up the electric blanket once more. Then while flipping channels I started watching a NOVA special on PBS about venom research for medications. They talked about the brown recluse venom! That is when I put 2 and 2 together. Could the spider bite have given me those not quite Peter Parker, super strength no POTS symptoms? I started to research the brown recluse venom and found some interesting stuff... "Using an enzyme found in the venom of the brown recluse spider, researchers at the University of Pennsylvania School of Medicine have discovered a new way to open molecular pores, called ion channels, in the membrane of cells. The enzyme, sphingomyelinase D (SMase D), splits a lipid called sphingomyelin that surrounds the channel embedded in the cell membrane. As a result, the channel opens to allow the passage of small ions into and out of the cell, thereby generating electrical currents." The rest of the article at...http://www.sciencedaily.com/releases/2006/07/060717221858.htm I then found a pdf on the therapeutic potential of venom peptides, getting very interesting on page 5 with Pharmacology of venom peptides. The chart after that section showing the sequence, disulphide connectivity and pharmacology of selected venom peptides, gives the action of class of spider venom peptides as Mechanosensitive channel inhibitor. http://imb.uq.edu.au/download/large/Venom_therapeutics.pdf Researching the Mechanosensitive channels in regards to POTS took me to~ "Ion channels sensitive to mechanical stimuli could serve many functions. In higher organisms, specialized exteroceptors transduce sound, vibration, touch, and local gravity. Interoceptors provide feedback for the voluntary musculature and the filling of hollow organs, as in the regulation of blood pressure. Cellular mechanical transducersprovide local control of blood flow, regulation of cell volume, stress-dependent deposition of bone, etc. Thehormonally coupled mechanical systems, including renin and atrial naturietic peptide, regulate fluid volume. There arealso autocrine and paracrine transducers that generate chemical messengers such as endothelin." http://www.sachslab.buffalo.edu/pdf/mechanosensitizedions.pdf I am trying to digest all this and how it relates to my resolution of symptoms after the brown recluse bite, if it is connected at all. Maybe someone else could shine some light on this for me?! Could this be an area of reserach for POTS medications? I still feel better than I was, despite a nasty looking arm! And to the brown recluse out there that got me...Congratulations, You now have lyme disease! LOL!

Adderall was a lifesaver for me. Gave me the energy boost to function, helped my bp and calmed my brain. I've tried different coconut oils and when I got the gold label virgin coconut oil from tropical traditions I saw a huge difference. It cleared my brain fog. I eat it, use it for lotion and in my homemade beauty recipes. If you buy from their website they send you a free book with uses, health effects and recipes. It's amazing for yeast. I went high fat (grassfed meats, butter, milk and coconut oil) for the total picture. I knew I had more going on that lyme. Even though low fat may starve the protozoas it may also starve me of essential nutrients to help build my immune system to control all the other crazy stuff malfunctioning. Here's an interesting article on fats http://www.faim.org/nutrition/fourfoldpath.html I may have stumbled onto something crazy though - it's worth it's own topic and maybe could point to where some pots research should be. I didn't mention a possible key factor to my recovery, because I didn't relate it to me feeling better. A hospital trip 2 nights ago helped me figure it out! I will post a new topic on it.

It is so strange to feel my feet! I didn't think neuropathy could improve like that. It's so weird to have so many body systems improve at the same time, like gi issues, sweating, sleeping, and body temperature. I would have been happy with just the dizzy, tachy, feeling like I'm on my own personal carnival ride, feeling going away. My si joints and back even feel better, not perfect, but better. I picked rocks in the field yesterday, huge rocks for landscaping. Worked in the heat bending and throwing them, things that a normal healthy girl would have struggled with, it really feels like I have super powers now after being so ill for so long. I started detoxifying last fall. Through out our cleaning chemicals, beauty products, and changed my diet. I started noticing a difference then. I still take Adderall (only prescription med I'm on), Samento (a Tao free cat's claw) and Banderol, both for lyme. Tropical Traditions cold pressed coconut oil daily, this gives me an energy boost. I also alternate with supplements like garlic, tumeric, grapefruit seed extract, and a few others. I fell off my strict diet about 6 weeks ago. I'm just eating healthier, grassfed meats, fruits and veggies, stearing clear of processed, chemical laced foods or pesticides. Although, I did have a nutty bar binge recently! I even eleminated toxic people from my life. Anyone who stressed me out! The final thing I started was Earthing, a few weeks ago. I started making physical skin contact with the Earth (sitting in the grass with barefeet) atleast 30 min to 1 hr a day, based on research that it would improve autonomic tone http://www.earthinginstitute.net/index.php/research I thought the thermography images were interesting and thought it was worth a free try. Maybe that is why the neuropathy has improved so much. Like I said earlier, I posted a topic on Earthing previously.

I have had symptoms since age 7, had my "pots crash" a year and a half ago. Last summer I was sitting in a wheelchair, feeling like death. I assumed that with EDS dx that pots was something I would always deal with. Started treatment for lyme & co-infections in January and went through Rough times with herxing. Suddenly woke up 10 days ago feeling like I was having a good day. That good day has turned into 10 symptom free days! I am trying to understand it. I've not had symptom free days in probably 13 years. Not only have I had no tachy/Brady or BP symptoms, but I am suddenly not cold. My neuropathy which was pretty severe from the knees down seems to have almost disappeared. My circadian rhythm is becoming regular. I don't get it. I went from mostly bed bound to shoveling 8 yards (4 dump truck loads) of mulch this weekend! I was on my feet working in our gardens from 10am to 9pm. It's like I healed and got superwoman strength! I keep waiting for a crash, pushing myself just to see if it's for real. I guess the lyme meds may have done something. I did start my earthing experiment a week before I got better. I am still earthing every day for atleast 1 hour. I posted a topic on that subject. I'm counting my blessings to be feeling so good, but am still so nervous to say "I'm better" to people and then crash hard soon!

Maybe this link will work better for you http://www.ted.com/talks/richard_weller_could_the_sun_be_good_for_your_heart.html

Just finished watching a great 13m video from Ted Talks about new research of N.O. being released by sunlight/UV light http://m.youtube.com/?reload=9&rdm=02d3#/watch?v=Lh9lDWPMWrM

I had a low titer ana at 1:4 with speckled pattern and a positive thyroid antibody that was low as well. Doctor wasn't concerned and considered them false positives. This was a couple weeks before my ttt and pots dx. My results were considered false positives since they were low titers. I understand that happens but found it strange to dismiss results when I presented with extreme fatigue, joint pain, raynauds and all the other potsie stuff.

Davecom- I have been dragging my feet on buying the sheets! I think I'm going with the mat after several recommendations. The mat is $59. There are videos on youtube on how to make your own earthlings sheets, I tried to convince my husband to make some! I like the idea of the mat since it's portable I could use it on the couch, in bed etc. I watched a youtube video on a tour de France team using earthing technology for recovery. Pretty cool to see. My husband brought in a multimeter from the shop and we measured our body voltage. I was higher than everyone else! Lynnie22, some of the links above should explain how the products work. There is also a good summary here, http://wellnessmama.com/5600/how-to-get-healthy-while-you-sleep/ Electrical stuff is like a foreign language to me, so when I first read about it I kept asking my husband, (who studied electrical engineering) if it made since. He said it did and brought in the meter and some tools to test our outlets to see if they were grounded correctly. The mat seems to be the best route. But, to start out, contact with the Earth is free! It's been warmer here for the past couple of weeks, so I've made a point to go sit in the yard with my shoes off soaking up some Earth! I will keep you posted on results and when I get the mat and start sleeping grounded.So far, I am falling asleep easier. BTW, here's another great site, besides the earthing institute. http://www.groundology.com/

Hi Margiebee! What area of Ohio are you located? I'm in Northeast Indiana, not too far from Ohio line. My pots symptoms started similiar to yours. The first time I fainted was in the doctor office when I was 13! I didn't get a diagnosis until I completely crashed last year. You are in the right place! I don't know what I'd do without this forum.

I posted this link on my Earthing topic, but I thought the thermographic images are interesting as to how this may help with peripheral neuropathy. http://www.earthinginstitute.net/studies/thermographic_histories_2004.pdf

The research is actually on skin contact with the Earth, or the use of an Earthing mat or Bed Sheet indoors. I have seen reports on patients healing faster in hospital rooms with windows to view nature, but this is different. This is the actual transfer of electrons from the Earth to the body. The studies would affect Pots patients and since contacting the Earth barefoot is free, that is how I started. I am now breaking down and buying the Earthing Mat and am going to sleep on it. If only I lived near the ocean and I could Earth with a stroll on a sandy beach! "Recent research has shown that the feeling of well-being that comes from walking barefoot on the Earth is associated with important physiological benefits. The Earth is a natural source of electrons and subtle electrical fields, which are essential for proper functioning of our immune systems, circulation, synchronization of biorhythms and other physiological processes. Of major importance is the fact that modern biomedical research has documented correlations between chronic inflammation and all of the chronic diseases, including the diseases of aging and the aging process itself. Inflammation is a condition that can be reduced or prevented by grounding our bodies to the Earth. It has also been suggested that the modern epidemic of chronic and stress-related diseases began when the leather that was used to make the soles of shoes was replaced with rubber and plastics. When leather becomes moist, as a result of perspiration from the feet, a channel of conductivity for electron flow is created between the Earth and the feet. Rubber and plastics are electrical insulators and therefore block the beneficial flow of electrons from the Earth to our bodies. " (Under standing Earthing http://www.earthinginstitute.net/statements/understanding_earthing.pdf )Earthing (Grounding) the Human Body Reduces Blood Viscosity—a Major Factor in Cardiovascular Disease "Previous studies have also demonstrated that grounding promotes favorable regulation of circadian rhythms, improved sleep with better night-time cortisol dynamics, and favorable ANS function.Skin conductance is altered within 2 seconds of grounding. When one is in simple direct contact with the ground (walking barefoot, sitting or laying down on the soil’s surface), or if one is utilizing a grounding system forsleep, zeta potential increases, and RBC aggregation and blood viscosity decrease. Grounding may represent one of the simplest and yet most profound interventions to help reduce cardiovascular risk and cardiovascular events." http://online.liebertpub.com/doi/pdf/10.1089/acm.2011.0820 The thermographic photos before and after Earthing are pretty impressive on blood flow. http://www.earthinginstitute.net/studies/thermographic_histories_2004.pdf

"When one grounds to the electron-enriched earth, an improved balance of the sympathetic and parasympathetic nervous system occurs. Previous investigations reported a marked change in biological parameters after about 20 to 30 minutes, others in several days, and a few others show a drastic change immediately at grounding (<2 sec). Skin conductance and electroencephalographic and electromyographic recordings showed the most immediate and profound changes.6,8 This study showed a positive trend in HRV that kept improving all the way to the end of the 40-minute period of grounding, suggesting a greater benefit with time. In patients who experience anxiety, emotional stress, panic, fear, and/or symptoms of autonomic dystonia, including headaches, cardiac palpitations, and dizziness, grounding could be a very realistic therapy. These patients may see positive effects most likely within 20 to 30 minutes and in almost all cases in 40 minutes. " (from Emotional Stress, Heart Rate Variability, Grounding, and Improved Autonomic Tone: Clinical Applications pdf link found under the last link posted in original post)

I've been trying to just sit in the yard daily, which is hard in northern Indiana weather. There are Earthing mats and sheets you can buy off Amazon. I know a few people that have the sheets and swear by them. One friend had severe insomnia and the sheets finally let her sleep. I thought the idea and studies on cortisol, inflammation and ans were interesting and since it's free to go outside, I'd start there. I'm keeping a diary of time spent earthlings and anything different I feel or see. I wonder if this could be a key to MS & autoimmune diseases being more prevalent in northern latitude. You're less likely to come in direct contact with the Earth in colder climates. I am outdoors all the time in the summer and my Pots almost disappears for a few months.

"Keep in mind for the most part we are not concerned with myelin only somewhat in the group b fibers which are lightly myelinated. But the main focus first is the unmyelinated fibers. So if cinnamon helps myelin it wont help us. Unless it some how repairs what I theorizes are dysmyelination of the group B fibers but thats theory. The facts are that for sure most of use have Group C small fiber unmyelinated neuropathy." Rich, I've been thinking about the unmyelinated C Fibers for the past few weeks and thought maybe I found something to help. I posted a new topic under the title Earthing, I'm wondering if this could help with c fibers. Here is one hypotheses not mentioned in my Earthing post with linked studies http://www.ncbi.nlm.nih.gov/m/pubmed/21856083/?i=2&from=/22757749/related

After reading the research months ago, I finally decided to start my own trial. I am seeing improvement in several areas since starting last week, and wondered if anyone has looked into this. What is Earthing? In its most basic form, Earthing is as simple as doing what people have done for eons: walk, run, or sit outside barefoot. Anyone can do it. Conductive surfaces include sand, dirt, gravel, grass and concrete. Wet surfaces are more conductive than dry. Wood, vinyl, asphalt and painted concrete are not conductive. http://www.holisticprimarycare.net/topics/topics-o-z/psyche-some-a-spirit/1198-earthing-restoring-health-from-the-ground-u Some of the studies http://www.ncbi.nlm.nih.gov/m/pubmed/22757749/ http://www.hindawi.com/journals/jeph/2012/291541/ link to more studies and commentaries http://www.earthinginstitute.net/index.php/research

Rich, the doctor I am seeing now offers thermographic body scans. I think I'll look into it. It would be interesting to see where the areas of inflammation are highest. I wonder if it can be done laying then standing.

Just an fyi, all cinnamon isn't created equally. There are basically 2 types, Ceylon, which is true cinnamon and Cassia. I purchased organic Ceylon Cinnamon and plan on supplementing with 3 grams per day. Cassia cinnamon contains coumarin which can be hard on the liver, the recommended daily dosage is around 0.5-1.0 teaspoons (2.5-5.0 mL) per day. Ceylon cinnamon does not contain coumarin.

Awesome accomplishment attending your sons event with a dress and makeup! It's sad, my mom has told people she can tell I'm having a decent day if I have jeans on! I guess jeans are an upgrade from sweatpants, but a dress, that's an event! I have discovered that the Maidenform "Control It" camisole helps me more than anything else. It's not as tight as spanx, so it's comfortable to wear all the time. It's also lightweight, so I wear it all year round. I don't feel comfortable without it now!

In the meantime, Cinnamon may be worth a try. It's been used as medicine for centuries. It may also counter the neurotoxic factors released by activated glial cells in the brain. These toxins kill the myelin-producing oligodendrocyte cells. A neurological scientist at Rush University was granted $750,000 from the NIH to see if cinnamon can stop the destructive inflammatory process of MS. Prior research by the Rush team showed sodium benzoate, a component of cinnamon, inhibited inflammatory molecules and blocked MS disease progression in mice. I purchased organic bulk cinnamon from a local food coop and will start my own trial. Unfortunately, I am not eating sugar or grains or I would enjoy this self trial with cinnamon rolls! http://www.rush.edu/webapps/MEDREL/servlet/NewsRelease?id=1503 http://link.springer.com/article/10.1007%2Fs11481-013-9447-7

Issie, Thanks for the encouraging reminder! I knew when I started treatment, I was in for the long haul. I'm just physically and emotionally drained right now! Still pushing through, though. The die off has been harsh, so I'm going slow. It helps to come on here and have people relate.

I am currently under naturopath treatment for lyme. I got to see the spirochetes and co-infections with my own eyes during a live blood analysis with darkfield microscopy in December. While this method is not fda approved for diagnosis, there is no question in my mind now. I do not think I was bitten by a tick. I never had a bulls eye rash. I had no idea lyme was so controversial, I've learned a lot in the past 4 months. I started out with Samento (TAO free cat's claw), I got it from a naturopath store for around $30. I was also taking grapefruit seed extract with it. I eliminated a bunch of toxins (like soaps, detergents, beauty products, diet pop), changed my diet and added natural stuff to boost my immune system. I take tropical traditions coconut oil in my hot cocoa or coffee daily as well as using it for lotion and beauty stuff. I also take garlic and tumeric and am trying to eat my viatmins with juicing, grassfed meats and butter. At first, the herxing was crazy. I was twitching and wiped out. The first month, my brain fog started clearing, but I did get shingles, which was rough. Then the next month my energy started coming up. I had a follow up appointment and my blood looked better already. There was still borrelia spirochetes, but not as many, and my cells were looking rounder. We then added a second med called Banderol. It is supposed to target the coinfections as well, including Bartonella. The Banderol is not supposed to produce the herxing like the Samento can, but it was kicking my butt for awhile. I noticed emotional/mental issues once it was added. I'm almost always a happy go lucky person, even when I'm sick, I try to find the humor, but the Banderol turned me into a grouch for a few days. I thought I was gonna kill lymes in super stealth speed, I was feeling so good by the beginning of month 3 (March). But, for the past few weeks my POTS, neuropathy and pain has been bad again. I don't feel like lymes is my final answer for my dysautonomia. I think that there was an immune problem (methylation related) and lymes was just another attack on my already toxic body. But, I'm praying for a recovery with lymes treatment.

Rich, I think your spot on. Issie, so are you! The below link is a MUST READ, it's long, but SO worth the read. http://physrev.physiology.org/content/82/4/981.long

Issie- I'm not sure what to do about the Manganese findings, it really is a catch 22. I am still taking Samento (TOA free cats claw) for lymes, and we added Banderol to target coinfections. The banderol is supposed to be easier on herxing than Samento, but it's been kicking my butt. I think that I have had heavy bartonella and that could be the reason for herxing. It's a treat everyday to see what I wake up with. I've had crazy rashes, not like any I've had before, flu like symptoms, twitching and so on. But, I am seeing POTS relief. My brain fog is clearing, and it feels good to occasionally "find the answers" I know are in my brain somewhere! I'm still taking Adderall, without it my BP gets so low and I'm non functioning. I am currently struggling with the diet. It's so hard to plan healthy meals when you feel like death. I need to suck it up and get back to it, but seriously, I was gonna cut someone for a chocolate chip cookie! I've still not had soda in 4 months, which is a miracle! I drink tea and water constantly. Coconut Oil (cold pressed virgin) has been AMAZING for energy, both eaten and smothered on my skin. I'm detoxing all the bugs I'm killing with kidney and liver support teas, diatomaceous earth alternated with calcium bentonite clay, cilantro, garlic, turmeric, grapefruit seed extract, Epsom salt baths and the beloved occasional coffee enema (which could be a hilarious post in itself)! Getting rid of toxins has made a Huge improvement on migraines. I used to get them daily, the kind where I thought my brain was coming out of my ears and eyes. When I pitched deodorant, hair products, soaps and cleaning products and started making my own, the headaches went away within 2 days! I am high functioning in my home now. So much, that I think I'm better, and then I leave the house and get so ticked off that a trip to a grocery store wiped me out for 2 days! I have learned I have to keep people and their drama away from my happy bubble or I am easily worked up and feel anxious and stressed and get set back in my progress. Yoga has been helpful as well, although my joints have been killing me the past 2 weeks. I'm still not sleeping well, which makes me ramble at 2:30 am! Let me know what you think about the Manganese!