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Posted 7/11/2011 8:49 AM (GMT -8)
Hi Folks, sorry to have been absent from the forum for a bit. I have been busy feeling well and living a regular happy life. Just over three weeks ago I wanted nothing more then to be dead, to be away from the constant pain and hurt I was causing my family. I usually get relapses caused by traveling or extreme fatigue combined with stress. Last time I was in bed catatonic and unable to communicate with my most loved ones.Here is what I did:

1)Sam-E with B-12 for mood. Apparently this is very common treatment for depression in Europe and studies are showing promise for joint pain and arthritis.
Magnesium, B, C, D zinc fish oil, ubiquinol Acetyl-lcarnate, probiotics and more that I don't have in front of me.

2)Went to a chiropractor/kinesiologist and he should be exercises that really alleviate my head pain. Not all of these guys are for real. I went to Dr. Leaf in Plymouth, MA. A visit with him will also be educational about the environmental contributions towards your disease.

3) The next day I went to a Lyme workshop held by two women. One had gone from planning her funeral, when her daughter got sick and she realized she couldn't afford to die. She cured herself and got her PHD in holistic medicine. The next speaker had been an emergency room surgeon and was incapacitated for ten years. Once she cure herself she refocused her medicinal practice and works on Lyme, co-infection and environmental contributors.

4) Myco medicinals. I am serious people, when I went on the regiment suggested to me I have regained cognitive ability, memory, word recall that is probable better then before I was diagnosed.These myco-medicinals are an amazing tool in our recovery. I have no brain fog since I started this regimen. Go to the www.fungiperfecti.com to learn more about them and order the product. I was at their farm years ago but I was warned off myco-medicinels by health care people that did not understand and associated them candida and infections. That is the equivalent of confusing good digestive bacteria with spirochetes.Again www.fungiperfecti.com to learn and order if you want from them. I am presently taking a pretty aggressive course of turkey tail and Stamets7. There should be someone on the telephone or email that can steer you better. Let them know you were referred by me for Lyme disease they might work out a deal for forum members. I will give up my anonynimity. My name is, jonathan todd

5)Diet: AVOID gluten,sugar and alcohol. I have have had each on occasion without negative results. I will post some food tip late, but I have found a way of eating that is easy and good. To be healthy is the most liberating feeling in the world I feel more joy then I have in almost three years. Join me,life is amazing
Posted 7/11/2011 1:27 PM (GMT -8)
Hi Jonathan,

Great to hear some good news. Thanks for sharing what you have found to work.

Can you assure me that you have no interest -- as in no chance of financial or other gain -- in the fungiperfecti company?

It goes against the rules of the forum to advertise or promote one's own interests.

Thanks
Posted 7/11/2011 5:52 PM (GMT -8)
I know the founder. As I mentioned I had not used them until three weeks ago. The supplements can also be purchased from New Chapter. I have absolutely no personal gain from any revenues from FungiPerfecti, I wish I did. They are good people you should take a look at their website.

Peace,
JT
Posted 7/11/2011 8:12 PM (GMT -8)
JT65... sounds like you have taken a very similar path to recovery as me! Using herbs and upgrading my diet and exercising have done so much for me and I continue to feel better on a daily basis.

I bought a high quality mushroom supplement a few months ago and thought it was helpful. But the good ones are so expensive! Also I have found other supplements that I feel have helped me even more...

Astragalus for energy
L-Theanine for anxiety
DHEA has helped me to feel more "normal"

What kind of "head pain" were you having? I have sore temples but I'm not sure if it's Lyme related or not. Either way it sucks. I actually live pretty close to Plymouth. Do you think Dr. Leaf could fix my head also?? What kind of exercises does he do to you? Or does he just show you how to do them yourself? Thanks for the info...


-MysteryLyme
Posted 7/12/2011 5:43 AM (GMT -8)
Hy MysterLyme


My headaches were either brain (the organ) hurting 9 on a scale 1-10 or a combination of brain with needle like pain behind the eyes. 100% debilitating. Just to give you an idea of the pain scale, I cut my hand with a machete, ironically making a tick barrier. I cut off a knuckle, nicked a tendon and cut deep into the muscle. That wound I placed a 2-3 on the pain scale, with Lyme symptoms at a 9-10. I will post more about this regimen and I really think the mushrooms are a key to brain nerve generation. But as I mentioned in an earlier post, this past few weeks recovery has been nothing short of miraculous.
Posted 7/12/2011 10:37 AM (GMT -8)
Be strong and think positive, I was right where you are only three weeks ago. The other supplements are an important foundation to build on as well. The Sam-E with the 200 mlg b vitamin improved my psychological outlook tremendously as well. Once you are happier you have more strength to fight the Lyme. My chiropractor told me to watch comedies and sing. It is the culmination that seems to be working.
Look forward to hearing about you feeling better.

peace and prayers,

JT

Post Edited By Moderator (Traveler) : 7/12/2011 3:03:59 PM (GMT-6)

Posted 7/12/2011 10:44 AM (GMT -8)
The head sales person is out of the office until the 15th. I will hear back from someone regarding your regimen and I suggest you start ASAP.As I said we can negotiate in a week or so but even if it dips into grocery money start getting well now!
Posted 7/12/2011 11:00 AM (GMT -8)
JT - pardon me for being skeptical but in my opinion, it looks VERY SUSPICIOUS that you show up on this forum in June and have found a miracle cure that you are suddenly willing to share with the community. If you are sincere in your assertions then I apologize but I have been around way too long to not suspect these types of things as dubious at best. Additionally, if if you were CURED, there is no guarantee that others will be cured as well or even helped with the regimen for them - in fact, they might even be HURT by it. Just playing devil's advocate but if you are indeed cured then congrats to you but, if you have any other intentions, then that is not acceptable. I will have no further comment and let the forum moderators comment as apprpriate.
Posted 7/12/2011 1:10 PM (GMT -8)
Whoa, hold on JT! You are not allowed to tell people what to take or organize a buying co-op here!! Please review our rules before you continue. I had to edit your post, as this breaks two of our rules here.

People, in our forum rules there are do's and dont's. #4 under the do's states:
4. Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.

This is especially true with Lyme and other Tick-born infections, as has been proven time and time again. Please use great caution when someone comes on here claiming to be able to cure us all!
Posted 7/12/2011 7:53 PM (GMT -8)
I either miss-communicated or you misread my post, I did state that my symptoms are almost all gone after almost three years. I attributed it to several different factors with the myco meds only being one of them. I guess I did forget that we are not allowed to organize coops but this person was in in dire straights. I am only trying to share what helped me go from bed ridden to active and happy. I thought it was worthy of a post if it can help one person. If the point of the forum is to get advice during desperate times then and to share what helps me manage the disease. It was the culmination of the steps is what I shared with one brand name accompanied by the name of their competitor. It worked for me and I had a response that wanted to try it. I suggested if we could buy in bulk we could give access to the supplement for those who can't afford. I guess that is where i crossed the line.

In regard to to the skepticism in the other posts: please read more carefully I outline three events that changed my my health dramatically. I have been bed bound much of three years so of course I was excited to share it. The suspicion posted is a really negative element to this post. I also don't feel like you read my post carefully before you passed judgement. I have almost lost my business and family. I fell the hostile skepticism could have been expressed in a lot more positive a manner. If I discover a LLMD should I not post it under the format of the forum? The responses have been hostile and have make me wonder what the point is. This is a real downer to get that kind of response after what I have been through. I have been to hell and back, just because I didn't find this forum until June doesn't mean I wasn't sick and doing research. I am not a jonny come lately snake oil salesman and I really resent the insinuation. Please tell me what I had to gain for posting it.Yazzer I feel that I should keep my findings to myself with the attitude you convey. Read the first post carefully before you pass judgement. We can help each other get better or sit around *****ing about Lyme disease that wont go away. I did my research and there is no danger to the supplements or myco-meds or diet or the chiropractic exercises I discussed. Mycelia has no danger unless someone is specifically allergic. I will say that myco med is new to western medicine and kept me from taking them for three years because our practitioners don't understand them ergo fear them. This reaction is a real bummer. JT. I guess I did suggest to to Sick Too Long the regimen that worked for me.That was a mistake, I was excited to feel this much better
Posted 7/12/2011 7:57 PM (GMT -8)
Traveler, I did not post the comment you quoted from the 10th
Posted 7/12/2011 8:01 PM (GMT -8)
Looking back that was posted by jr99 not me JT65
Posted 7/12/2011 8:44 PM (GMT -8)
Most of us here have been sick for a long time and have been trying to get well for a long time. It just seems very hard to believe that in three weeks time you are cured because we know there are no miracle drugs and it is very slow-going, no matter what treatment we seek. If you have been reading past posts, I think you will see where the skepticism comes in. We have had a number of new members over time come on here and claim some miracle treatment cured them...we have learned to be skeptical because we have to advocate for ourselves and we know how it works.
Posted 7/12/2011 10:04 PM (GMT -8)
JT65... again thank you for sharing what has helped you recover. Please keep us updated with as much good news as possible. We need it here.

On another note... we are here to share ideas and to help each other. Attacking someone for trying to help benefits no one. If something seems like a scam to you... then good job for being smarter than that scam. Pat yourself on the back and move along. Let the moderators do their jobs. Maybe conserve your energy for something more positive.
Posted 7/13/2011 3:32 AM (GMT -8)
Hi JT,

Sick and wounded animals are liable to bite, no matter how good your intentions and the fact that you are trying to help! I am so sorry you were mis-judged.

The moderators have to deal with spammers every day and we get a bit defensive, understandably.

I very much appreciate you sharing what has worked for you with the forum. Not only is it invaluable information, it is just plain good news! I truly hope you will continue to keep us updated on your progress.
Posted 7/13/2011 3:57 AM (GMT -8)
Mystery Lyme - That is exactly what I did and I am moving on. Thanks for your concern.
Posted 7/13/2011 4:03 AM (GMT -8)
I invite anyone to read my post - it was not attacking but was indeed expressing healthy skepticism. That, to me, should be part of this community as well. The good, the bad and the ugly - that is unfortunately the disease called Lyme...that is unfortunately also, the purported cures and treatments - we need to constructively root out the latter in a community way. In my post I did exactly that but, I tell you, the extreme defensive nature of the responses causes me even more concern. nuff said and back to work.
Posted 7/13/2011 5:13 AM (GMT -8)
Yazzer, you sound very cynical and negative. You all know I have have not claimed to be "cured". I am symptom free for three weeks. What part of the post concerns you.......deep breathing? exercise? magnesium?or just the myco meds I mentioned by name. I wasn't defensive I was angry at you and making an effort to be impersonal and polite. I swear that a combination of changes I made to my diet and supplements has improved my quality of life. I have suffered as much as you I am quite sure as I had to travel over the world while having symptoms. I still think my regimen has merit. I was desperate too. Now I am able to work and live a full life with energy and joy. I wouldn't have thought it possible either but here it is. I am not asking you to believe it but it may work for one more person, so perhaps you could tone down your negativity directed at me and do some research
Posted 7/13/2011 5:57 AM (GMT -8)
I apologize for attributing the post on the tenth of this month to you. I do. My mistake.

Although now, I believe you are the one left owing apologies - I don't need any - I was doing my job, but the other members who also posted and were attacked deserve the considerations you want.

As stated by others, this is part of the job of Moderators - to watch over this forum to keep it clear of those trying to scam the members here. You should read the rules again, as I suggested. Rule #4 - You are not allowed to attack or 'flame' other members. Rule #14- Do not disrespect the moderators. We are volunteers - not only are we researching our disease on our own - like you - but we also spend many many hours on line moderating and researching many things for members here before posting. Not to mention the time we spend emailing others who have contacted us personally.

Here's a question - why do you think that once each of us has found what works for us, we don't go all hog wild and try to 'pitch' our treatment? Because we adhere to the rules.

If someone was to contact you personally - off this forum and ask for information, of course you are free to do what you will. Although that would mean you would have to activate an email address here on this forum.

On this forum we have rules and we expect each member to acquaint themselves with the rules and adhere to them.

I will not continue this on this forum. If you have a disagreement with me, then email me please.
Posted 7/13/2011 5:59 AM (GMT -8)
Alrighty, let's kiss and make up folks. We're all fighting the same enemy.
Posted 7/13/2011 6:32 AM (GMT -8)
Amen to that!
Posted 7/13/2011 6:35 AM (GMT -8)
While we are all here to help each other, what one considers helping can always be different than another's. It is the moderators' job to protect the others members from scam and promoting products or services and there is no other way to do that than by adhering to the rules. Have a good day everyone.
Posted 7/13/2011 8:01 AM (GMT -8)
Thank you springsjean and Traveler - you guys are doing an excellent job! Iam have said my piece on this thread and do not plan to re-address it in the future - my point was made and I am movin' on down the line.
Posted 7/13/2011 8:39 AM (GMT -8)
Thank you Yazzer
Posted 7/13/2011 12:45 PM (GMT -8)
JT,

I am very happy to hear that you are better but you should understand that we have had many problems with people coming in here claiming that they were cured in just a few weeks. I'm not saying that it is not possible, but the reality of this disease is that it takes time. If you were an established member here, then there would be more understanding from our members. You are more than welcome to share your success through email if anyone is interested. Thanks for understanding.
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