posted
I told my LLMD I would find this link. Saw it here, I think, and have searched, but cannot find it other than mentioned at a conference.
I am interested in GSE because I passed out on Tini a few weeks ago, and flagyl causes these weird temporary depressions . . .
By the way:
Combo of GSE and Bee Stings -- herxing for first time in over a month. (also taking rocephin and biaxin, but just feel great on them)
The herx was neuropsych -- a strange moodiness and extreme anxiety all day. Had to meditate and do yoga to manage it.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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CaliforniaLyme
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Jeffster- here!!!
File Format: Microsoft Word - View as HTML In fact Dr. Brorson reported that the best anti-cyst agent he has found was crushed grapefruit seed. Was he really suggesting that Lyme patients eat their ... www.ilads.org/files/2006_ILADS_conference_summary.doc
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I am starting to feel a little ignored on here. Mostly because I am into alternative methods and an alternative paradigm and maybe there is not a lot of us who try these things.
But I have to say that a systemic, overall treatment plan has helped me tremendously. I'm not stupid. I have a Ph.D. and look into these methods seriously.
I have been one of the more seriously ill people on here, though not as seriously ill as some of the people I have seen in my doctor's office, nor seen on here.
My own daughter has been diagnosed for 8 years with an "unknown progressive neurogenerative disease". We have picked out her grave twice. But it turned out to be Lyme. And although she is struggling, and we don't know the outcome yet, her treatment and alternative treatments have been lifesaving.
There is so little real research in this area, we all need to reach out to try what might work. Science, which is the method in which I am trained, is really only one paradigm, which, as we know, is terribly, awfully influenced by politics and money.
Rocephin is helping me a lot. But so is ozone therapy and bee sting therapy. And also chlorella, or cholestramyne, which bind these awful biotoxins and get them out of our systems.
I am going to keep sharing my experiences, in spite of the lack of response.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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I think that many here would welcome any information/research you are able to share. Some of us with Lyme brains can't digest really difficult
articles and such but a few look forward to ANY new information or treatment options. It might help if you find something to share....just give a
synopsis and then the URL that people can read as they are able. As more and more of us lymies find it more difficult to find LLMD's to treat us,
we will be looking for alternative treatments. I know that many combine therapies successfully. So post away......I would appreciate it very much!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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CaliforniaLyme
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Dear Jeff!!!!
I am sorry you are feeling ignored!!! I do respect the role of "alternative" therapies as supplemental until something comes along that is curative- and I believe there is just as much chance for that to be herbal as antibiotics!!!! As far as bee sting therapy, THAT is one of the alternative therapies I consider worthwhile from what I have heard from people... It is good to hear your report of it- I have heard quite a few good reports of it now... Acupuncture also seems very helpful.
I didn't know about your daughter!!! My diagnosis AFTER my PCP and a local Evil Rheumie diagnosed me with Lyme and after 1 month of abx with Post-Lyme Syndrome, went on as I continued to get worse to be "a progressive multi-system neurological disease triggered by post-Lyme syndrome". Still makes me chuckle in a bitter way!!! I am glad your daughter got diagnosed.
My daughter is 100% in remission but honestly I expect her to relapse sometime later in life. I worry about that!! The Russians had this great abstract on Lyme called "Stages of Life Disease" or something. It is one of 2 abstracts that has vanished into pubmed that I can't find (no conspiracies there, just the whimsy of pubmed word entry!). But it basically said that Lyme is a lifetime disease that comes generally in stages and that children get stage 1, around 20-30 people get mono-fibro-CFDS type stuff and then older- stage 3 (in general)- the big neuro- MS, ALS, etc. I was precocious and it sounds like your daughter as well. I hope she gets 100%!!!
Best wishes, Sarah p.s. And I have been around htis place almost a decade and very often I am completely ignored, at times insulted and and occasionally treated like complete (@^@%!!!! SO don't feel alone!!! I look at this place like a very nice elevator filled with sick people in a medical building!!! "What doc are you going to see?" "Here, let me help you off!" and the grouchy mean patients are there too, in pain or just so confused they don't really they are being horrifically rude- blowing their noses on your sleeve- coughing in your face- running their wheelchair over your foot!!!!! People are sick and preoccupied with that here- and it is as it should be- lots of nice people too!!!!!!!!!!!!!!! The majority IMO.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Jeff, I am having neuro relapse for some reason after feeling like getting better. Seems to have started with the start of riffing.
I have used grapeseed extract but will give another try. Does it have to be used in combination with others?
I am interested in using cholester? My short term memory fails me here. Is this a prescription or supplement and what all does it do? What is it's action rather?
I feel very exhausted studying and purchasing supplements to try. Would like to find a few that help and not take so many that am not sure will do any thing at all.
Posts: 290 | From ohio | Registered: Dec 2005
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Jill E.
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posted
Hi Jeff,
Please don't withdraw from posting your results and experimentations!
I think many of us belief that a systemic, holistic approach is needed to battle a systemic, multi-disease, stealthy group of pathogens. There is so much trial and error, I think all this information is extremely valuable, whether a person wants to try it now or file it away for future reference.
Even though Lymenet is my major online resource, I have learned a lot by being involved in other groups, ranging from the Salt/C group (I do not do Salt/C, but who knows, I might, and they talk a lot about other supplements and detox), to the Experimental Chronic Fatigue Syndrome group (CFSMExperimental) where the discussions are very cutting-edge about genetic issues affecting detoxification.
I also have a close friend who sees Dr. K., and I read up on that protocol, too.
So keep posting those ideas! You just never know who you will be helping.
Personally, I found that my greatest improvements were on a combo of antibiotics and other protocols. Right now I'm mainly doing antibiotics because I can only handle so much due to post-Ketek issues.
But from 1984-1995, I had what was diagnosed as Chronic Fatigue Syndrome. I developed it at the same tme as the first outbreak in Incline Village, Nevada, even though I was in a different city.
But since my tick bite in 2003, I recognize that what I thought was CFS was probably a first exposure to tick-borne diseases from having lived in New York and the east coast just prior to it.
There was little knowledge about CFS then, so all I could do was use immune-boosting and anti-viral herbs, see Chinese medicine practitioners, and do all sorts of alternative approaches, change my diet to reduce allergens, did energy work, etc. In essence, I just used trial and error to boost my body's own healing abilities. I did not use antibiotics.
I did recover, to at least 95% and stayed that way until my 2003 tick bite.
However, some of the alternative methods did me far more harm than good. I have had the same experience with some of the more out-there approaches I've tried for Lyme. It's a lesson that just because something is natural does not mean it is benign.
So I do believe that supporting the body's own healing mechanism is vital. But each of us does need to find the right mix for our own individual situations.
The weird thing is that my constellation of symptoms since the 2003 bite is almost completely different from my CFS symptoms, yet all fit the definition of tick-borne diseases. So it just shows that particular strains or coinfections can make things so different in each one of us - or different each time we are bitten.
I am very interested in grapefruit seed extract, given that all the cyst-busters are hard on the liver and may not be an option for me. I had even discussed it with one of my LLMDs right after the news from the conference came out. So please keep posting about your findings.
Your success is inspiring and I expect to see you speaking at a Lyme conference one of these days!!
Jill
[ 11. February 2007, 12:37 PM: Message edited by: Jill E. ]
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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northstar
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posted
Jeff, Every single person's individual recovery path is important to all of us.
I read alot of the adjunctive tx postings no matter what the content. I follow each person's journey, and learn from all of them.
Plus, your path will be on the archives for others who are looking.
Your experiences are valuable to all of us
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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5dana8
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posted
sorry JeffM
I didn't see your post till now. I think the majority of people are doing traditional treatments & just don't know how to answer posts about alternative treatments- please don't feel ignorned
I am so sorry to hear you has some bad reactions to the tinnie...Passing out must have been very scary
Ok...onto GSE:-
Here's some short things I can share: My stomach gave out on me 8 months ago & is still out of commssion. I am doing rife now & limited herbs & supps.
I pulse GSE on the last week of every month-for one week... I am afraid that the ketes will get too used to the GSE-like they can do with some other meds. I did pulse my tinnie & flagel while in treatment along with my abx & it worked out well.
I personally think it would be a good idea pulse the GSE with some "killing" herbs as well (like I did with the abx) but can't stomach the stronger herbs as yet. ABX would be my first choice if I could stomach them.
Be carefull though what abx you are taking because some can't be taken with GSE-citrus & may conflict.
I do herx from GSE for sure! I know its hitting something-not 100% cetain its hitting the cyst's but its better than nothing. I found the news on GSE from the last LLMD conference encouraging.
Here is a recent link on GSE-In it are some decent associated links as well:
Good luck JeffM & hope you can feel better soon hugs & healing Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
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JeffM
I just re-read your post & noticed you mentioned bee sting therapy. Can you share some info on that. Like do you need an RX? How do you do them?
Hope the combo of the BST & GSE works for you,. The fact that you are herxing is a good sign.
Thanks Blessings Dana
ps. I read your psot about your daughter. I am so sorry... I hope she can continue to feel better. I'll send up some prayers for you both
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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TerryK
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JeffM, I don't mean to be contrary but I don't understand why you felt ignored. You asked a question and it was answered. I don't think a lot is known about the GSE and lyme because it is fairly new information which probably why you didn't get much response. I do think there are quite a few of us who are interested in alternatives.
I've been taking GSE off and on for years for candida. Doesn't seem like I've herxed from it but then I may have thought it was related to candida die off. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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MariaA
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posted
there's an article on aiptherapy (bee venom) at Stephen Buhner's website: http://www.gaianstudies.org/ click on 'Lyme Updates' and then click on the 'apis' article in the upper right of the updates page.
I'm considering it as well since i have a hive in my backyard (I"m a beekeeper- but I almost never get stung). Everyone who does it does it at a doctors' office with injections, I think- I know it should work 'au naturel' for me.
I'd love to keep a discussion of apitherapy going. for those who don't know, there's a lot of well-documented evidence that the active ingredients in bee venom directly kill Borrellia and other bacteria. It's been shown to help with MS in some cases (probably also because of killing some pathogen, or perhaps through an effect on the immune system). The main drawback is that it hurts.
By the way, Lymenet has become very friendly to people who are trying alternative/complementary therapy, partly because a number of us are having good success with it and partly because more of the science behind it is documented better than it used to be.
MariaA
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posted
Cholestyramine and Welchol are prescription drugs originally designed for removing 'bad' cholesterol. They seem to also bind to fat-soluble toxins produced by Lyme, allowing your body to excrete them rather than letting the toxins circulate 'round and 'round in your system.
I take Welchol occasionally and I thought it REALLY helped with getting rid of brainfog when I took it. Some patients report that it does nothing ofr them, and a few on Lymenet reported that they had serious problems with these types of drugs.
Do a search on the two drug names here and you'll find the experiences.
Welchol is cheapest at Costco (probably also wal-mart)- about $180 per month's worth. Not sure how much cholestyramine costs.
If you can't get a prescription for these, there are some natural supplements that might help- chlorella, sodium alginate (a seaweed derivative), bentonite clay, citrus pectin. I'm taking chlorella 2000 mg to 4000 mg at a time, several times a day right now, along with bentonite (I made capsules of bentonite powder and take them several times a day, not on any good medical advice though- it's usually sold as a nasty liquid for internal use and the brand is called Great Plains Bentonite), and a Solaray brand formula of pectin/sodium alginate/other seaweeds which is called Detox: http://www.totaldiscountvitamins.com/default.asp?CatalogID=4782&SubfolderID=76&AssocID=nextag
which you can see is very cheap (I have no idea about the particular website I just linked , though). I take the Detox stuff more often than the package says, I cleared that with the LLMD.
I"m also drinking a LOT of water, trying to sweat (I'd do so more often if I had the energy to get to the gym for sauna), and eating a lot of extra fiber so as to make sure everything moves out as needed. I suspect some of these natural binders would be constipating for some people though I don't know that for a fact. Welchol and cholestyramine can cause constipation (or diarrhea in some). The Solaray Detox formula contains psyllium husk which would help with this I imagine.
I'm taking a LOT of binders (4000 mg of chlorella is a lot of pills) right now because I"m dealing with mercury chelation and having a hard time with it (chlorella and seaweed help bind mercury, whereas according to my doctor, Welchol doesn't). You may see results with much less of the supplements than I"m describing.
thanks for your comments. I am reading them with interest.
I don't get bee sting injections, but the actual bees sting me .. my PCP has them in a cage and he does them on pain points and acupuncture points. It is like taking very strong medicine. I have a lot of hope for this. We will see.
My LLMD has me on 3 more months of rocephin. Rats. I wanted the IV line out so I could go swimming. Oh well. CaliforniaLyme was extremely helpful . . . I do think maybe for some of us, including me and my daughter, 9 months to 12 months of rocephin is needed.
I am certainly grateful for all of these interventions. They are all experimental. Even Burrascano's guidelines are based on his clinical experience.
And TerryK, I am sorry, you are being contrary in my opinion and I have not been responded to in many posts. If you look, you will see. I think you must be new to this website.
I agree with many on here, that this is all so experimental and new . . . and even the scientific research is so minimal. For example, I am taking grapefruit seed extract, but how much, and how much is absorbed, vs. how much really gets into the system and breaks the cysts . . . who knows. I don't think anyone knows.
I am doing well and I am so grateful for that.
A huge problem is that I do a number of interventions at the same time, so who knows what works?
I sit next to people with Lyme in my doctor's office, as we get treeatment, who are in wheelchairs, with alleged MS and ALS, who cannot speak, who tremor all over . . . This disease is a mystery and also is very destructive. God bless us all.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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MariaA
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posted
ooh, just the info I've been asking everyone about lately.
How many bee stings per treatment, and did you work up to the dosage?
My LLMD said to 'go for it' but I was wondering about how the dosage compares to the once-a-week injections his office gives when doing apitherapy. I was just going to try several stings per week, which is normal for beekeepers.
-------------------- Symptom Free!!! Thank you all!!!!
5dana8
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posted
Hi MariaA
not sure what a PCP is but wanted to thankyou for your additional info on GSE & bee sting therapy
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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MariaA
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posted
Of course I"m excited about doing it myself without a doctor's supervision because I already know a lot about bee sting allergic reactions, have been stung a lot in the past, and I'll probably never become sensitive to them.
Other people should proceed cautiously- you can develop sensitivity (or it can decrease) depending on your individual susceptibility to bee venom. Anaphylactic reactions can be fatal.
-------------------- Symptom Free!!! Thank you all!!!!
TerryK
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quote: And TerryK, I am sorry, you are being contrary in my opinion and I have not been responded to in many posts. If you look, you will see. I think you must be new to this website.
Thanks for explaining. No, I'm not new here and my impression is that you are a welcome and respected member of this board. I did look at your posts up to a few months ago and I see that you did initiate a post asking for info on how to contact the Brorsons. No one responded but I would assume that is because no one knew how to contact them. Looks to me like you make a lot of good contributions and I hope you continue to do so. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Areneli
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I will link this recent thread here as well
CaliforniaLyme
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posted
A PCP is a Primary Care Physician!!! Your regular general practice doc!!!!!!!!!!!!!!!!
My uncle is a beekeeper/woodsman in Wisconsin and when I was a kid he had me learn how to walk into a bee swarm and not get bitten- it was terrifying in the beginning and very Zen in the end. *I am one with the bees*!(_!!*!!!
I have actually considered bee venom therapy MORE than ANY alternative therapy!! It is VERY interesting to me. But hey, I am lucky in that I have done so well with abx with virtually no side effects-
Take care all!! Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Klinghardt used injections and that's what got me interested in it. I almost went up there to find out how to do it etc. I contacted Michael Simick in Canada who provides the venom to many people who do this and who has a list of physicians / alternative physicians who order if, show patients how to do it, etc.
But I was on flagyl at the time, and unable to follow through.
Serendipitously, my PCP (primary care physician) got interested and went to an Apitherapy Conference and has started doing the actual bee stings with his lyme patients.
He starts slowly, one sting first, to see how you react, and then builds. After a month or two, I am up to ten stings, two times a week. His goal is 20-30 stings, 3 times a week.
He has the bees sting me on acupuncture areas association with immune system functioning. He also stings areas that ache or are in pain -- often my hip joints.
The sting is left in for 15 minutes. It is weird. It continues to move around, pulsate, disseminating it's "medicine". The areas swell. You can't take bendaryl because you want the swelling.
Don't ask me to explain the science. I am doing this on faith and belief in my doctor. He says there is some evidence he has seen that something in the sting actually kills the spirochete. But which form and why, I do not know. 10 stings is about as much of this kind of medicine I can handle right now.
One woman with lyme in his office is wheelchair bound with MS like symptoms. Over the month she has been able to hold her head up.
That's all I know for now. The sessions are not that expensive. I am thinking of finding a local bee keeper and doing the treatments myself.
I think my doc is recommending a six month course of treatment.
I hope this is some of the info you wanted. I wonder if there is more on the Apitherapy website?
hugs to you all Jeff
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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MariaA
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posted
Sounds like he's trying to cause immune system changes in addition to using the antispirochetal properties of the venom (it's a substance called mellittin I think)- therefore no benadryl (I doubt doctors give you benadryl either- mine hadn't thought of it when we discussed this).
I want to try this with benadryl to reduce the swelling/itching/local allergic reaction and see if I can just zap spirochetes this way with less discomfort. I"m going to just sting myself on the arm (after icing, and taking benadryl first). This may not be effective, I'm just a wimp.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Is bee venom desensitization for allergy the same as getting stung?
Posts: 290 | From ohio | Registered: Dec 2005
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5dana8
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Thanks so much Jeff
for putting in the info in Bee Sting Therepys. I would love to try that some day but live out in the middle on know where.
If I mentioned bee sting therepy around here people & probably some doctors would ask if I would like fries with that
Was kinda hoping I could research it & maybe get just get a bee and have a try at it. My neighbor has a bee hive. I know I am not allergic been stung many times.
Thanks Arennli for the fab link on GSE
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
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hi Jeff
sorry to get off topic of GSE for a moment . I found some sites for Bee Sting Therapy:
sorry that you feel ignored. i often am too tired to get on and post.
many people on the board are taking abx and others the alternatives. i hope you find enough people that will respect your choices and help you.
jeff, - at the start of my neuro symptoms - i did not have a diagnosis but after research i sincerley believed i had lyme d (iam in the medical field).
So i went on a rampage to find a herb that crosses the BBB and grapefruit seed is one of them. I took this with salt, chlorella, and cilantro. you can only imagine my herx!
I finally was positive for CDC + for Lyme and Babesia last April. I took 3 doses of Abx and noticed that the herbs i take are more gentle and less toxic.
After one year i am getting better, able to work 24 hours a week ( lots of pain and complaining) - now when i eat the grapefruit with the seeds and herx with it (though light. so you have my commendations for doing all you can take care and get well
mags
Posts: 259 | From California | Registered: Mar 2006
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MariaA
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posted
Jeff,
Could you change the subject line of this thread to say something about bee venom therapy as well as GSE to that others might find the discussion more easily in the future?
Maria
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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posted
quote:Originally posted by spookydew: Is bee venom desensitization for allergy the same as getting stung?
Spookydew, The quantities of venom that they use for desensitizing allergic people are probably much smaller than the quantities Jeff's describing for therapy.
Dana, Beekeepers would probably be fine with getting you stung once in a while- if they talk to other beekeepers at all or read beekeeping magazines, they're probably familiar with apitherapy (or at least tend to know that it exists, since it's a folk remedy for arthritis and a lot of beekeepers know that. Including in the South- this isn't new New Age sorta information).
Commercial beekeepers occasionally desensitize employees by daily stinging (for a week or two) in a controlled fashion such as by icing the area and applying a bee for a couple of weeks. You get to the point where it still hurts, but doesn't swell or itch as much afterwards, plus the employee stops being as scared of the process (which makes them better at working bees).
Be aware, again, that some people will develop an increased reaction (rather than a decreased one) if you do this, so keep that under consideration.
One sign of becoming more systemically allergic to bee venom (as opposed to the limited local pain/swelling/itching reaction that everyone gets from it) is if you're getting progressively more swelling and progressively more of an adrenaline 'rush' after getting stung.
If you accidentally get stung in hands or feet, or face, it'll swell/itch horribly compared to other places like further up your arm, and this is normal, but it can be hard to tell if someone's very allergic if the sting was on their hands as the local reaction can be really intense.
Benadryl reduces the swelling/itching allergic reaction especially if you use it before you get stung, I have NO idea if it'd reduce the effectiveness of this as a treatment.
From my experience with bees (and with knowing a few beekeepers who developed a more serious allergy over time) I"d suggest starting really slow with this- like once a week, or one sting a day, or something much slower/milder than what Jeff's doctor is doing in the controlled environment of the clinic.
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