Comments for Jenna's Lyme Blog

Comment on The Intesity of Lyme Pain by admin

admin — Thu, 04 Dec 2008 18:38:38 +0000

Dearest Monkey Friend - First, that portion of the post you referred to was by Pain Treatment Center at Scripps Clinic and Research Foundation in La Jolla - I should have made a bigger distinction about that - the recommendations by Scripps and my own…and honestly, I wish I had the answers! I wrestle with anger too, and get frustrated when all the Lyme blogs ooze the positive and avoid the dark and ugly. I am a die-hard optimist, but the depression I have experienced with this disease has me slogging about in slimy darkness with horrible creepy crawlies everywhere…no, its worse than that…I’m not sure words exist that can describe what we go through…

I intend to write more about the darkness - and starting with meds made sense for me because it has been the meds which have given me freedom from most of the pain. I have tried several times to get off the strong meds and GABA but I become so suicidal without the medical assistance…four of mu doctors have said (quite emphatically) Jenna, this is not a moral issue, it is a medical issue!”

Now I feel so much better about allowing the meds to do their job as long as I need them - I believe strongly that I will be so euphoric to be healed enough to go off the pain meds that it won’t be a problem (plus I have gone off strong meds several times due to surgeries) We will know when to taper them off…when we are symptom-free!

And I wondered the whole first year why I kept getting Vicadin prescribed when it didn’t touch the pain…so when my doctor finally REALLY listened to my pain and put me on Fent. patches I was so relieved! I have always been a proponent of prescription drugs when appropriate (as a long-time sufferer of migrains) and I worry that most of our Lyme community gets caught up in the purity of the powerful human immunity system and become VERY anti-prescription meds…perhaps its just the abx. I am very sorry to have written so poorly yesterday…I will try to do better in the future, and I intend to write more about the subtle seduction of suicide…I completely understand the overwhelming despair and hopelessness that ends with that sad choice, and it is my husband, a group of close friends and my children who keep me from taking the plunge…that, and the small spark of hope that I could help people like us…and that is what I pray for…to help people.

You can write me anytime about anything thats bugging you - I will always try to help!

Blessings,

Jenna

Comment on The Intesity of Lyme Pain by Monkey Girl

Monkey Girl — Thu, 04 Dec 2008 04:53:04 +0000

Interesting that you should blog about this today, because I just looked up GABA on WebMD to see the comments on lyme patients taking it.
Although I’m glad to see someone talking about real physical pain related to lyme (because I suffer from it) some of the recommendations you’ve printed seem overly simplified in dealing w/physical pain especially #5 and #6. I work real hard to time my meds, just as my doctor ordered, so please explain to me why I should taper them off? And #6, yes, I believe in family/friend support and healthy choices, you make it sound like no one should support people who are on pain meds.
I don’t understand why I have pain w/lyme, and some people in our support group have pain and some don’t. I guess it depends on how the lyme personally affects each individual…and since doctors/scientists only now are starting to even understand lyme, if they don’t know why some have pain and some don’t, how can they fix it?
I do know this. I would not be able to function without the pain meds. My pain level is debilitating, keeps me from being able to think straight. I’m on the lowest level of pain management/meds and they don’t get rid of all my pain. Not even close. I often wonder why people and doctors are so afraid of prescribing meds that can help people actually live. I have never once felt a ‘high’ on any of my pain meds. I’ve tried everything from hypnosis to acupuncture to anti-depressants, you name it, I’ve tried it. Nothing.
Please help me understand. I had doctor after doctor falling over themselves to get me on an anti-depressant, however completely ignore my pain levels. Much rather screw w/my brain chemistry. Not all my pain is neuropathic.
You talk about suicide and about how it’s chosen by many sufferers. How sad that is. It took 8-15 years just to get my lyme diagnosis, the last 2 years in almost constant pain. Inflammation levels and sed rates thru the roof, but no one would listen. Open and honest w/my doctors? How about they try and be open and honest w/me. Get angry at my pain as suggested in #3. Yes, you could say I’m angry. It’s going to take me a long time before I trust any doctor besides my LLDoc. I can understand why people might consider suicide.

Comment on Celebrities with Lyme Disease by kathleen kaye

kathleen kaye — Mon, 24 Nov 2008 16:55:55 +0000

OPRAH’S DR. OZ TALKS ABOUT LYME DISEASE ON HIS RADIO SHOW NOVEMBER 26TH — SPREAD THE WORD!!!!! Information on how to listen to the show and how to email Dr. Oz is below.

FOR IMMEDIATE RELEASE:
Contact: Marc Silverstein
Marc@onthemarcmedia.com
(410) 963-2345

Lyme Documentary in the National Spotlight
Under Our Skin on Dr. Oz Show, Oprah & Friends SiriusXM Radio
Radio Interview about Acclaimed Documentary Runs on Busiest Travel Day of the Year

(New York, NY)—Under Our Skin, an award winning documentary about Lyme disease, is featured on the Dr. Oz Show on Oprah and Friends SiriusXM Radio, Wednesday, November 26th. Dr. Mehmet Oz puts the national spotlight on the documentary that investigates the human, medical and political dimensions of Lyme disease. Joining Dr. Oz is Under Our Skin filmmaker Andy Abrahams Wilson who explains how he followed Lyme patients and physicians for four years through their long and devastating journeys dealing with this crippling disease.
Dr. Oz calls the documentary “fascinating and compelling” and says his entire family “couldn’t stop watching.” Dr. Oz is a prominent heart surgeon at Columbia University and New York Presbyterian Hospital, who has been called “America’s doctor” because of his best-selling books and appearances on The Oprah Winfrey Show. He also has been honored as Time Magazine and Harvard Alumni’s 100 Most Influential People. “Dr. Oz gives great credibility and will heighten awareness about the seriousness of chronic Lyme disease,” Wilson says, “plus the show is being aired in a key time slot – on the busiest travel days of the year, so many people be will listening to the interview on the radio while traveling to their Thanksgiving Day destinations.”
In an hour long interview, Dr. Oz and Wilson discuss what could be the most controversial and misunderstood illness in America today. Tens of thousands of victims go either undiagnosed or misdiagnosed with such conditions as multiple sclerosis, Lou Gehrig’s disease, Parkinson’s disease, fibromyalgia, chronic fatigue, autism and even hypochondria. Is Lyme disease rare and easily treated with a short course of antibiotics? Or can it be a chronic and potentially deadly illness that is going under the radar? Tune in and hear the discussion.
The show airs Wednesday, November 26th at 1 a.m. 7 a.m. and 6 pm EST. Oprah and Friends producers say people who don’t subscribe to the satellite radio can also listen by going to http://www.oprah.com/radio and clicking on the “Free 30 Day XM Radio Trial.” Register and you can listen online. Dr. Oz also asks for Lyme patients to tell their stories by clicking on this link: https://www.oprah.com/plugform.jsp?plugId=495&referer= .
Under Our Skin is currently set for a theatrical release in spring 2009. For interviews with the filmmaker or any of the subjects featured in the film, please contact Marc Silverstein at Marc@onthemarcmedia.com or 410-963-2345.

Comment on One Success with the Buhner Protocol by Jenna Smith

Jenna Smith — Fri, 21 Nov 2008 18:35:11 +0000

Dear Jon-

Thanks for your comment, and I hope you will keep us posted on your wife’s treatment and recovery…I try to post as many recovery stories as I can find!

For you, I would be careful about which herbs you take, how much, dosing and combo abx. I have both (and a couple others) but the Bartonella is so hard to get rid of, and then you never get to really work on the Lyme.

We are all different, but the best treatment I have been on so far, is 1000mg Artemesinin AM, same dose at PM, 2 days on and one day off. I am taking 250 mg Azithromycin AM and same dose at PM and Flagyl (750mg AM, 750mg PM) for the third week and then the fourth week off everything. I’ve tried so many protocols and some work so well for a huge group but then another huge group doesn’t so you really have to be patient, determined and keep trying. You will get better – it is important you cling to that hope.

Blessings,
Jenna

Comment on Is Lyme Disease Transmitted Sexually? by Jon

Jon — Fri, 21 Nov 2008 18:26:08 +0000

I think that it is totaly sexually transmissable. I am grew up in the south where there are many ticks, I have removed ticks at least 4 times as a child. My wife and I were very healthy right up untill we tried to get pregnant then boom my wife is in extreme agony for 2 years straight. It is possible that she had it all along as she is also from a tick area of the country but is very fishy. I do wonder why I have had Lyme/Bartonella for many years (unknown to me) and I feel pretty much just fine and allways have, it is allmost “no big deal” except that my wife is in agony. I allmost think that men are carriers and are pretty unaffected thus spreading Lyme Bartonella etc. unknowingly. What gives

Comment on One Success with the Buhner Protocol by Jon

Jon — Fri, 21 Nov 2008 18:10:54 +0000

Glad to hear an encourageing story. My wife and I have Lyme as well as “Bartonella Like Organism”. My wife is trying the Zhang protocol, has anyone heard of Zhang and/or how it compares/contrasts with the Buhner protocol? My wife just started the Zhang procol and feels much better allready, allthough Bartonella right now is much more devastating than the Lyme. I am still trying traditional antibiotics etc. for Bartonella (just learned its not Bartonella it is an unknown Bartonella Like Organism - BLO). Does anyone know if these herbal protocols address BLO, Zhang says yes doctors say no. Thanks and good luck

Comment on Avoid Annoying Side-Effects With Transdermal Application of MMS by Jim

Jim — Tue, 18 Nov 2008 20:54:41 +0000

Hi Linda,

Yes, the side effects I am talking about are the bad taste and the nausea with the oral protocol of MMS. It also should work quicker as it doesn’t get hung up in the gut with the transdermal protocol. If MMS is taken properly, you shouldn’t feel the die-off effect, aka as a herx, as it actually will neutralize the effects of the die-off and you will not notice any effect. If you do, it is best to drop down a drop for a few days, then try ramping up again. However if the herx isn’t all that bad, then it would be okay to continue.. What you want to avoid is a bad herx, this only makes the body toxic and makes us ill. The beauty of MMS, most of the time we won’t experience a bad herx… And as long as you don’t take any Vit C within 2 hours of taking the MMS, then it is working as C is the antidote and will render it useless immediately.

My support groups were the first ones really using MMS for Lyme in a large amount of people. There really isn’t any historic info about MMS and Lyme, but early on, most reported decreased fatigue, brain fog and more energy. However the improvements since then are slower, which is to be expected as the bacteria continues to morph back and forth between spriochete and cyst form. It isn’t known if MMS will kill it in cyst form and this is how the bacteria survives as practically nothing kills it in cyst form except for a few antibiotics. This is why the bacteria can survive so long…

Take care,
Jim

Comment on One Success with the Buhner Protocol by nancywisser

nancywisser — Mon, 17 Nov 2008 12:00:48 +0000

I’m completely unqualified to suggest anything. All I can do is refer you to the book that helped me: Healing Lyme by Stephen Harrod Buhner. I studied it and followed his suggestions. There’s also a listserv on Yahoo called Lyme Aid Buhner where you could ask others’ opinions and you might look on the Lymenet Flash forum as well for other people’s ideas. However, the book and Mr. Buhner are the best authority.

Comment on One Success with the Buhner Protocol by kurt schwarz

kurt schwarz — Sun, 16 Nov 2008 22:34:19 +0000

We just finished the detox and we are on an antibiotic Docacylean and the cats claw we think the spirokete is in the kidneys would you suggest trying the bee venom on the next regiment of detox. we are a late stage lyme patient of Dr. Cameron in New york , she has alot of pain in the legs and muscles, is the teasel root a way to go . We jus had a bad episode of about 6 weeks and this is the 2nd day of feeling better. She is 48 yrs old 5ft 5 in 160lbs and athletic, she has a hard time concentraring, swollen ankles,memory loss speach loss, spotting, frequent urination,weight gain , thank you for you help, kurt schwarz best friend

Comment on Avoid Annoying Side-Effects With Transdermal Application of MMS by Linda

Linda — Sun, 16 Nov 2008 16:25:11 +0000

The MMS is not alot of fun to swallow so I understand the transdermal application. Jim Humble has some suggestions on his site regarding the taste. I emailed him last year, and asked if I could put it in empty gel caps (after 3 minutes), he said, ’sure’. Yesterday, I was on his site - curious to see his latest on Lyme (the poor man has been flooded with questions) and he stated that Lyme was frustrating, but they are working on a protocol. One thing he suggested was MMS enemas. Go to http://www.mmsanswers.com and click on Lyme (on the right).

Jim (Smith) I’m curious to know, though, you’ve stated that one will avoid many side effects by using it TD, so I’m thinking you mean only the stomach upset and unpleasantness. One should still, eventually get a die-off response to know that it’s working?

Considering that Jim Humble has not had complete success with Lyme, and states patients may need to take it up to a year or more - I think we’d all be willing to deliver it anyway other than swallowing it.

Thanks,
Linda