issie Posted June 5, 2013 Report Posted June 5, 2013 I remembered reading recently on Regional Pain Syndrome, here’s the link:http://www.rsds.org/pdfsall/Systemic-Complications-of-CRPS.pdfSeems others are connecting reperfusion issues as a possibility and the connections to the autonomic nervous system – showing likely.I have been recently using grapefruit seed extract and having some pretty amazing results with it. I found an article of a study done with this to help in pancreatic reperfusion issues. Here is the link. Thinking if it helps the organs that much – maybe, it will help the muscles and skin with those type of issues too. Since I do have POTS and FMS along with EDS – this is a big concern for me because I have PEM and lots of pain from EDS and autonomic nervous system disorders. The results seem very significant and may be of help to others. I’m using 5 drops in water in the a.m. Would like to hear if it helps others too.http://jpp.krakow.pl/journal/archive/12_04/pdf/811_12_04_article.pdfThere was another article saying that Alpha Lipoic Acid helps in liver reperfusion issues. This is also known to help with neuropathies. Makes you wonder if reperfusion is part of the issue with the neuropathies that we have with POTS too.http://www.ncbi.nlm.nih.gov/pubmed/17259747Issie Quote
bebe127 Posted June 5, 2013 Report Posted June 5, 2013 Hope it helps with you Issie!! I used to take it years ago when I was dealing with MRSA (well before being dx. with POTS)I wanted to add a side note for those on Metoprolol though. I wish I had an article to back it up, but to my knowledge (I believe I remember reading it on the pamphlet thingy the pharmacist gives with the meds) that people on Metoprolol should not eat grapefruits or drink the juice.Be well Bebe Quote
issie Posted June 5, 2013 Author Report Posted June 5, 2013 Bebe that is true of a lot of meds with grapefruit. But ,I've read conflicting information as to whether or not grapefruit seed extract interferes with meds or not. I think if you are concerned that it may - it's better to err on the side of caution. But, right now ---I'm not believing how good I feel. I'm doing some major changes and this one really seems to make a difference. I've read that it can be an antibacterial, anti parasitic, and natural antibiotic. It also works on the immune system and possibly can help in blood flow issues (according to some of these reports on blood re-perfusion). So, thinking for me ---it should be a good thing. I've been on it for 3 weeks now.Issie Quote
bebe127 Posted June 5, 2013 Report Posted June 5, 2013 I going to consider looking into it again. I have used it in the past as an antibacterial and antibiotic. I'll just have to check with the dr. or pharmacist about interactions.Thanks for bringing this up! It's been years since I've thought of it Be well,Bebe Quote
Psalm 23 Posted June 6, 2013 Report Posted June 6, 2013 Issie,At my sons suggestion and after noticing others on this forum who take Alpha Lipoic Acid I decided to give it a try. I have been blown away by the positive results. I have been taking 600mg daily for 6 weeks now but have been afraid to get overly excited about it as I didn't want to set myself up for disappointment. While to date it has not yet impacted the below the waist pain, it has reduced the above the waist pain by at least 60 %. I plan to wait a bit longer then up the dose to 600mg twice daily and hope for even greater pain reduction. Oh, about the same time I started the Alpha Lipoic Acid I started taking 1000mg of vitamin C and 400 IU of vitamin E.Thank you for the links and for sharing your success with grapefruit seed extract. I'm going to pick some up tomorrow when I am out. Do they carry it at Sprouts ? When I am able I will spend more time reading the interesting links you posted. Janet Quote
issie Posted June 6, 2013 Author Report Posted June 6, 2013 Janet, I'm glad the alpha lipoic is working for you. I have some, but haven't started it. I've read some really good reports about it. I'm not sure I'll be able to use it since it is high in sulphur and I have mutations in assimilating sulphates. I've asked a few people who are supposed to know about the CBS mutation in the methylation pathways and they seem to think that if there is an issue with this - that alpha lipoic may not be the best thing to try to take. So, holding off on that right now. I think Vit C and Vit E (full spectrum) are both good. I take those too, (just not daily - with my new diet. Not feeling I need as many supplements - these days).I think Sprouts has it. I got the GSE liquid brand. It's pretty bitter - but, not so horrible for me to not drink it. It's also supposed to be good for washing your veggies and fruits in tooIssie Quote
GypsySoulNicole Posted June 6, 2013 Report Posted June 6, 2013 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. Quote
issie Posted June 6, 2013 Author Report Posted June 6, 2013 WOW, Nicole. Guess you will have to stick to the Lyme protocol longer. I think it will take awhile for us to get this under control. Also, since it is addressing our immune system - it may be that it will be longer then we like to think. But, since I'm also feeling pretty good these days - I'm determined to keep it this way. I'm still not well - but, have so many other issues then just protozoa and co-infections. But, I really appreciate the improvements I'm finding. Thanks for chimming in. I want to hear what you find with your next lab.Issie Quote
kitt Posted June 7, 2013 Report Posted June 7, 2013 Issie,It's great you're having a good result from grapefruit seed extract! I looked at it and the only thing that concerns me appears to be related to a well known caution about eating grapefruit while taking other medications.Googled 'grapefruit seed side effects.' There are a number of sites. The consistant thing I found on these sites is this.Pasting:Grapefruit can inhibit a digestive enzyme in your intestine, increasing the absorption rate of other drugs you are taking, as well as their effects. Read more: Grapefruit Seed Extract Side Effects | eHow http://www.ehow.com/facts_5562334_grapefruit-seed-extract-side-effects.html#ixzz2VUvtwPOTOn the other hand grapefruit seed is being researched as a potent anti-fungal and more.I think it would be wise to talk with a pharmacist before starting it. My main concern would be having the medications I'm currently taking not work well for the reason quoted above.Have you found anything that states grapefruit seed extract is different than eating grapefruit? (Have often times been warned not to eat grapefruit when taking a certain medications.)(Not sure why type font is erratic, with the exception of Bold.)?Interesting about GSE research and anti-fungal properties. It may be that some with pots also have Candida? It seems reasonable that it could co-exist.Glad you're feeling better!Best,K Quote
Guest Alex Posted June 7, 2013 Report Posted June 7, 2013 (edited) I am not trying to argue with anyone, or contradict any of you ladies, but I did a bit of research a while back after I posted the info on mixing grapefruit juice with BP/HR meds (the post Bebe was mentioning), and ... I'll let you draw your own conclusions:http://www.eurekalert.org/pub_releases/2008-08/acs-nrt072308.phphttp://www.mayoclinic.com/health/food-and-nutrition/AN00413Also, as you probably know, grapefruit seed extract is not 100% natural. It is actually a synthetic combo of grapefruit pulp and chemicals. See more here. http://www.naturalmothermagazine.com/#!grapefruit-seed-extract/c1g7and herehttp://chemicaloftheday.squarespace.com/most-controversial/2010/1/27/the-truth-about-grapefruit-seed-extract.htmlIf you have the time read or skim through the below patent for making the grapefruit extract and you'll see what chemicals are added to the natural stuff in the process. Triclosan, ammonium chloride, and methyl paraben are some of them.http://www.google.com/patents?hl=en&lr=&vid=USPAT5128139&id=rL8iAAAAEBAJ&oi=fnd&dq=grapefruit+seed+extract&printsec=abstract#v=onepage&q=grapefruit%20seed%20extract&f=falseI'd check with my dr/pharmacist before trying any new regimen - be it prescription meds or supplements, but that's just me. Maybe because I had some weird reactions lately.Best,Alex Edited June 7, 2013 by alex74alex Quote
Psalm 23 Posted June 7, 2013 Report Posted June 7, 2013 Is there anything one should be concerned about in taking Alpha Lipoic Acid ? Quote
issie Posted June 7, 2013 Author Report Posted June 7, 2013 While I have read that grapefruit and it's juice should be avoided with certain medicines - there is conflicting opinion as to whether or not grapefruit seed ext. would work the same way and I commented to that above. __________________________________________________________________________________________________________________http://www.nutriteam.com/faq"I'm taking medication for high blood-pressure. Will GSE interfere?"We have no reports of any drug interactions or contraindications of any kind. There is a danger in drinking fresh grapefruit juice or eating grapefruits when taking certain medications(consult your doctor). Grapefruit extract contains 0.1% or less of the compounds that increase absorption of certain medications. Consult your physician.]]_________________________________________________________________________________________________________________________ There are many that will find fault with what another person does and look for something to disclaim or scare off someone else from even trying something. My point is to comment on what I'm doing and what is seeming to work for me. Whether or not you want to try this is up to you. But, I've been on this for 3 weeks now and usually if something is going to stop working for me it does in either 10 days to 2 weeks. So far, the results are still working and I'm feeling better.___________________________________________________________________________________________________________________http://www.nutriteam.com/faqWhat about rumours of Chemicals in GSE?Newsgroups and email groups have received postings to the effect that GSE contains Triclosan, Benzelthonium Chloride, or Methyl Paraben. The source of this type of report comes from both Germany(Here is the PubMed reference to the German Report) and Japan, where Citricidal is not approved for human consumption. A more recent attack on GSE can be found at this link. The reason is that Citricidal is very similar in molecular weight to both Benzelthonium Chloride and Triclosan, both of which are effective disinfectants, but are toxic to human and animal life. In Germany their test(which is not well documented at all) for BC, Triclosan, and M.Paraben came up positive(which is more correctly called a "false positive") and in Japan, the same is happening for Triclosan. USDA found benzelthonium chloride in its 2001 test. Was this a simple error or a deliberate attempt to scare people away from Citricidal and Nutribiotic products?Meanwhile, Citricidal has been tested for the presence of these toxins by independent labs, and has been proven clean. (Ex: Weston Gulf Coast Laboratories, Inc., University Park, IL, test completed in March of 1992. Tested for heavy metals, Cyanides, Pesticides and PCBs and Benzelkonium Chloride. Results: None Detected.) In fact, the accusations about triclosan(used in many dish and hand soaps in the US) became so frequent a few years ago, that Citricidal began specifically testing each batch of GSE for its absense, and providing a Certificate of Analysis to that effect.The truth is, Citricidal is not only effective, it has been in use for decades and recommended by many high profile doctors and healthcare professionals. If these allegations had any validity, there certainly would be a history of complaints and judgements against the product, and it would have been removed from the market many years ago. Triclosan has recently been compared to "Agent Orange" in toxicity. The EPA rates triclosan as "highly toxic". The US FDA made inspections of the Nutribiotic manufacturing facility back in the 1990's and found no chemical preservatives; and the formula is the same today.Such rumours are false, and are not a threat to those armed with accurate information. The test reports from Germany and Japan and the USDA are certainly bothersome, but they have produced "false positives", not accurate profiles. The vast body of evidence from many years of use by thousands of satisfied consumers, doctors, manufacturers, and veterinarians, speaks most loudly against such reports. (The German report, linked above, does suggest that some suppliers of "GSE" may, in fact, be fraudulent. But Citricidal and NutriBiotic GSE are both proven, safe, and effective products.)More on 'quaternary ammonium compounds' here.Read the "Citricidal Story."______________________________________________________________________________________________________________________ If we want to talk about synthetic substances and chemicals - let's talk about ---ummm --- most ALL the medicines that POTS people take. What are their possible side effects and what do they interfere with? What is going to happen to people's bodies long term and what is the quality of life that is being achieved with those meds? I think there are some good sources out there for most of the alternative sources and you have to do your research and locate the brand that you feel comfortable with. Then you can decide what your body will recognize and use as a food and possibly use as a benefit vs. doing God knows what to us. The closer to whole foods and natural that we can get the better our bodies will like it. But, this is seeming to help me to feel much better and you can just read this and ignore it or think about it and decide if it might help you too.Issie Quote
issie Posted June 7, 2013 Author Report Posted June 7, 2013 Is there anything one should be concerned about in taking Alpha Lipoic Acid ?It can cause vasodilation and if you are sensitive to sulphur, it is high in sulphur. Here is an article describing some of the things Alpha Lipoic does:http://www.geronova.com/content/alpha-lipoic-acid Quote
kitt Posted June 7, 2013 Report Posted June 7, 2013 Issie,Great point about Alpha Lipoic being high in sulphur! Such an important point for many of us, (I'm so allergic), and didn't pick up on that.Thanks for pointing it out.Best,K Quote
Psalm 23 Posted June 7, 2013 Report Posted June 7, 2013 Issie, Thanks so much for the ALA link and all the other information. I'm sorry you may not be a candidate for taking ALA. Does not sound like a good thing for you or anyone else with sulphur issues. I am going to continue with it and see where it takes me as I don't have any sulphur issues and it does seem to help significantly with pain. With vasodilation as a possible response though I will have to watch out for that one.I'm so glad you are seeing such positive results in taking the grapefruit seed extract. I didn't get to Sprouts yet to check out what they offer.I do believe in all of this one has to review all the information that's out there ( I do so appreciate the vast amount of information everyone provides ) and make an informed decision for them self. I find it so helpful though to hear of others failures or successes with particular approaches at symptom relief. Janet Quote
voner Posted June 10, 2013 Report Posted June 10, 2013 Issey, thanks for posting this!From perusing your Links I can understand the Possible mechanisms of Alpha lipoid acid on vasodilation etc., but I have a hard time correlating the rat studies on the pancreas and grapefruit seed extract..... Can anyone explain the mechanisms of grapefruit seed extract on vasodilation or ischemia,etc? I did a blog post over on Cort Johnson's website, "health rising" reviewing a paper on micro vascular ischemia as the cause of The painful condition, allodynia.http://www.cortjohnson.org/blog/2013/06/05/when-touch-hurts-and-blood-matters-getting-at-thepain-in-fibromyalgia-and-chronic-fatigue-syndrome/Thanks me curious if any other POTS patients have allodynia like I do?.... Quote
Dizzysillyak Posted June 10, 2013 Report Posted June 10, 2013 Hi Issie,Thanks for the info. I'm not sure if it actually applies to us tho. All we have to do is lay down for our bodies to experience reperfusion. BTW, Dr Peckerman explains hypoperfusion if anyone hasn't seen it yet. Just google Peckerman CFS or hypoperfusion. I'm not sure about others but I can feel it happening. The blood rushes back into my head immediately but it takes a solid hour of being supine for me to completely recover if I've been up too long.I knew it took an hour for my lungs to relax enough for me to easily take a deep breath again. But I also did my own PMTTT and found that my HR jumps back up within one minute to my POTS HR, 110, if I get up before the hour is up.My HR goes down to the 70's range after 15 minutes of being supine but gets down to the 60's range after 45 minutes. Then it takes my body another 15 minutes to normalize back to my "normal" / relaxed state before getting up. My lungs appear to be the last to relax but I have lung scarring.I can't imagine how anything could help this process. Either the blood is in our upper organs or it isn't. I've taken multiple parasite, bacteria, etc treatments over the last 8 years and none of these made any difference. But, I have a list of possible physical causes for my OI that I won't bore you with ... lol ... TC .. D ETA .. Issie, I hope I didn't sound like I was arguing with you. I was just brainstorming this with you. Please keep the ideas flowing. D Quote
TCP Posted June 10, 2013 Report Posted June 10, 2013 I've been taking Alpha Lipoic Acid for some time at lower doses and am about to step it up. It's been used for diabetic neuropathies in trials with great results and on the continent it's even prescribed medicinally. It's worth a go. It works well in combination with Acetyl-L-Carnitine, although this one makes me feel unwell, so I didn't benefit...but many do. These two are very beneficial as is Benfotiamine, a synthetic form of vitamin B1. All aid nerve growth and regeneration. Quote
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