First and foremost, I’d like to say that if any one is offended by my posts or my opinions, it’s nothing personal.
I have done a lot of research when it comes to my diagnosis of Lyme disease and my only intent is to educate other people and help other people see the truth. Whether or not you believe it, that depends on you. I most certainly am not going to waste my time posting back and forth to negative comments about my opinions. I have found so mAny people on here to be so amazing and I am forever greatful for you. It has been a long journey of ups and downs.
I don’t agree with what happened to MAVlisa. Being banned from a forum because she voiced her opinion, as I do. Quite ridiculous. Lisa has helped so mAny people despite her being bedridden. I thank god for this forum because I met Lisa and she opened my eyes to the Lyme light. I was skeptical at first, but I’m glad I didn’t dismiss the information she told me.
I have now been treating neurological Lyme disease for four months. I have Lyme and the coinfection bartonella. My test came back postive with 6 bands! No doubt that I have it. Clear as day. I decided to terminate all migraine meds and have been successful thus far with withdrawal symptoms. This will be my final week of tapering down on the Topamax. My antibiotic treatment consists of three kinds 2x daily: doxycycline, Biaxin and Bactrim. I also receive monthly Iv treatments with Meyers cocktail. Each day I also take probiotics and florastor.
As with migraine treatment, it gets worse before it gets better. The first month of treatment was extremely rough. However, by the third month I finally felt the life come back to me. I am able to enjoy life again in ways I never thought I would again. My brain fog is almost non existent! My Ibs problems are gone. Words cannot explain how wonderful I feel. I do still have bad days as I still have a current active infection. However, mark my words I will fight this battle until I win!
For those of you who come across this and are wondering could I have Lyme disease? The answer is yes. Please watch under our skin, it is a wonderful and power Lyme disease documentary.
Below is a video on why the government does not want to treat Lyme disease effectively. m.youtube.com/watch?v=OrLJLgoNgA … rLJLgoNgA4
Lisa was banned for persistent rude and obnoxious behaviour over a period of months. It had nothing to do with her opinion. Period.
You are taking Topamax and a benzo. Topamax is a FIRST LINE agent with a large degree of evidence from randomised clinical trials for migraine efficacy.
When you began treating migraine last year you saw almost immediate benefits to the point of telling us you were having days where you had stopped thinking about VM. You were well. Topamax, you said, is a wonderful drug.
Your positive test results for Lyme come from Igenex. This is not a standardised test, has been controversial in the past and has produced false positives among our members.
The use of long-term antibiotics is not supported by the scientific literature and is, in my opinion, quackery. Worse it’s dangerous. I’ve posted the links to these a few times now.
Under Our Skin is an emotive bogus propaganda video and not something anyone should use to make a compelling argument about chronic Lyme disease, or worse, to self-diagnose.
It gets worse before it gets better. The first month of treatment was extremely rough
— End quote
This is standard alternative medicine nonsense. They probably told you the “toxins” were coming out right whatever that is. The reason people feel bad when migraine meds start is because a migraine brain does not like things to be thrown out of its current homeostasis. When you started piling the abx into your body you probably got just that. A migraine kick-back like most of us do when we start migraine meds. Let’s assume you had a bacterial infection only. Where on earth have you ever heard of someone taking abx for a bacterial infection and getting worse for a month before getting better? It’s not even logical. Think Lisa. Antibiotics work immediately by disrupting replication. You feel better almost immediately.
You may actually be doing something good here. You are a fine example of what NOT to do when diagnosed with a clear case of migrainous vertigo. I hope everyone reads this story of yours and learns from it.
I do hope you will stick around actually, not to promote more Lyme propaganda please (we’ve all had a gut full of that from various players) but to have a place you can get information and support from to be well again when you finally realise you were hood-winked by Lyme loons.
Here’s a good chapter to read about the nonsense of chronic Lyme disease, that ridiculous movie mentioned above and the all around bunk that this diagnosis entails. It also discusses the “industry” that so-called Lyme literate doctors have created for themselves. It’s a free chapter to read from a great book called:
[size=130]Killing Us Softly: The Sense and Nonsense of Alternative Medicine[/size]
Scott, with all due respect, and you know that I do respect you a lot, we know Lyme disease does exist and I’m worried responses like yours are too heavy handed.
Can we not just let the people who believe in their Lyme diagnosis take their antibiotics and let them report back 4 months, 6 months, 12 months down the line to see how they are doing? It’s interesting to see and BB wasn’t whipping everyone into a frenzy as some in the past have done.
Hitting back heavy hadnedly ripping Lyme posts to shred, I’m concerned that newbies shy away from this forum because some of us come across so anti-Lyme. Can we just have a standard Lyme reply that directs to scientific evidence or something? Or the other section of the forum for 'other illnesses? I know your views, but Lyme is a good discussion point and everyone is entitled to their opinion.
BB- I’m glad you’re feeling better, whatever it is down to and I really hope it continues for you
Part of my Lyme test was positive but from my research, I don’t believe the result and am seeing good results from a migraine prevenative so I’m not exploring Lyme any further personally.
I have never met anyone on this site (maybe a tie with Kelley) that knows so much about MAV, diagnosis, medical eficacy and general treatment protocols.
To have an argument / disagreement with him is futile. The guy knows his stuff and is a wealth of information.
As we all feel like shit on here, the bickering needs to stop and we need to learn from one another and help each and every one of us get to a better physical place in life.
Todd, I couldn’t have said it better myself. Scott has dedicated so much of his time in addition to the hell he also has suffered and has a wealth of information. I know he doesn’t say things without some hard scientific evidence to back it up. He is only expressing his concern for those that might go down the wrong path rather than working to get their condition under control. And he does it in the only manner he knows. STRAIGHT FORWARD. My neuro oto is a lot like this and I love it because I don’t want him to tell me only what I want to hear. I want the facts and I want them straight forward. We all want to get well. Let’s just be nice and like Todd so poignantly stated, let’s “Make MAV, not war”.
Peace.
— Begin quote from “Go Gonzaga”
I have never met anyone on this site (maybe a tie with Kelley) that knows so much about MAV, diagnosis, medical eficacy and general treatment protocols.
To have an argument / disagreement with him is futile. The guy knows his stuff and is a wealth of information.
As we all feel like shit on here, the bickering needs to stop and we need to learn from one another and help each and every one of us get to a better physical place in life.
Firstly, I class Scott as a friend so Im not anti Scott or whatever you guys think.
Secondly, just because Scott knows such a lot about MAV does not mean he is in a position to debunk Lyme 100% because thirdly, Scott, are you denying Lyme exists?? I am confused.
I don’t wish to get into this debate really, I’ve said all I had to say on Lyme in my own post on it about my testing and reaearch into it. ( I tested positive and chose to ignore it. I have MAV. Not Lyme. )
I just think a straightforward approach can sometime she confused with animosity.
Missmom, perhaps you’re right and I did come across heavy handed. The reason I did in this case is because while it’s true I cannot be absolutely 100% certain about Lisa’s true dx – none of us can be 100% bang on about anything let alone through the internet – Lisa nevertheless represents the first case where I feel this Lyme madness has gone to a whole new level of crazy. I get even more riled about it because she is still a young lady with a child who has been drawn in (Lisa that is). I really hate seeing this risky alternative medicine thing being used on someone like her. And if you haven’t guessed, alternative medicine and the industry behind it really irks the hell out of me. It’s an unnecessary distraction, an industry full of charlatans and quacks.
Lisa was diagnosed by a specialist with VM
Lisa responded brilliantly to Topamax and is aided by a benzo
But then she was influenced into having that Igenex test by a certain somebody and with that one piece of Igenex paper is now using long term abx and IVs. I don’t know about you guys but that’s just a risk I don’t think anyone should take under these circumstances and makes no sense to me.
Missmom, you’re a great friend and always appreciate your straight shooting point of view and critical thinking. Thanks Todd too for your input. Loving your poetry :lol: . Maybe enough said now.
ps. MM, Lyme does exist of course. But in this context?
