posted
I recently watched the Mystery Diagnosis which featured Jackie Spar.
I was truly taken back because during the program, I realized that it was like watching my own story from ten years ago.
For those of you who saw the program, it was probably like looking into the mirror as well.
The reason for my response to the program, however, was not to commiserate with yet another victim of Lyme Disease, but yet to share a story that concluded with a person who is now completely cured.
During my illness,I saw the same physician as Jackie Spar in Connecticut. This doctor stood in front of my mother and me and told us that I would not be cured.
He told us that I had deteriorated so badly that the only thing for me to do was to hook myself up to an IV and pray.
I respect this doctor for the awareness he has brought to Lyme Disease, but if I had stopped there, I truly believe I would not be here today.
I went on looking for a solution after all others had given up hope. My mind and body were fighting against me, but I was still determined. Life brought me to Southern California, where I started a year and a half of IV treatment.
The quality of my life at this point was so poor. I could not function and eventually went on state disability.
My insurance company was threatening to drop me, and I was told that I would need to learn to deal with the pain. I could not deal with the pain.
I was not willing to live with the pain. 5 years I had lived like this, and it was time for it to end. One day, I fell upon a naturopathic doctor.
I decided to try something different. I started a program of accupuncture and various other natural treatments.
Soon after I started treatment, my pain and so many other symtoms started to go away. After 3 months, I was no longer confined to a bed.
After one year, my symptoms were virtually gone. I am now 31, and have been completely symptom free for 7 years.
My point to all of this is simple. It makes me incensed when I hear people say that Lyme Disease is one that never truly goes away. It does go away.
It goes away when we get rid of it instead of to allow it to live inside us. The scary thing about Lyme Disease is that it takes on the symptoms of depression, alzheimers, multiple sclerosis, and schizophrenia.
It can seem like a digestive disorder and heart disease. It can cause stroke and seizures. It can do virtually anything the body can succomb to. It is truly the great immitator.
What I ask people who have many strange symptoms at once to do is to ask themselves. Is this normal? Is it normal for a twenty year old to lose her memory. Is it normal for a thirty year old to be unable to walk? Is any of this normal at all?
What we need to remember is that our bodies want one thing: to be healthy. It is the design of our bodies to bounce back when something infects us.
What happens when we overmedicate ourselves with antibiotics is that our natural defense, our immune system, is destroyed. The meds become a crutch and take the place of what we were born with.
Our bodies see no more point to an immune system until it is virtually shut down. This is by all means dangerous.
The scariest thing to me about allopathic medicine is that its inclination is to treat symptoms.
When we have a headache, we take aspirin. When we have a stomach ache, we take an antacid.
What do we do when the symptoms are caused by something greater?
When we have pain, it is there to tell us something. When we are given drugs to mask all of our symptoms until we no longer know what our symptoms are, how are we supposed to know what is really wrong?
Possibly fortunate for lyme sufferers, there is no magic pain pill. There are simply too many symptoms for us to try to mask. I say that this is fortunate because it results in action. I remember that when I was sick, I used to ask myself a question quite often: Do I just die? Do I just let this kill me? This was not a possibility. As cliche as it was, it was do or die. I decided to do.
I personally was told during my illness that "it" was: depression, mental illness, laziness, multiple sclerosis, bladder infection, fybromyalgia, IBS, and thyroid disease. These are all very different "diseases" with very different symptoms.
I would imagine that my story is like so many, if not most Lyme Disease patients:
After the symptoms get so weird, one day, we are told that we have Lyme Disease. Then what? We are given the drugs. We pay the doctors, we eat the pills, we stick ourselves with needles. We feel the pain only to wake up the next day to feel the pain again.
Eventually, we are told to deal with the symptoms because the medical industry simply doesn't know how to deal with this disease. For all of the symptoms that Lyme Disease displays, it would take so many pills just to achieve masking them. Without going to the root of the problem, how can we alleviate the symptoms? It just goes round and round until we literally are driven crazy.
So in the end, we can not stop with one doctor, or five; one treatment or twenty. We can not settle with one approach. We need to try approach after approach until something works.
We can't stop until we get the answers we want. Lyme Disease is not a life sentence. I am living proof.
If there is anyone out there who reads this, and is at that place where he or she feels all avenues have been exhausted, please feel free to contact me.
I am not a doctor, but a regular girl who has seen the dark side of a truly dark disease and has come back again.
I feel that there are so many people out there living unnecessarily with the pain and confusion Lyme brings on.
I feel lucky to have found the people who were willing to help me, and I would like to do the same for others.
Susan
Posts: 21 | From San Francisco, CA | Registered: Jan 2007
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posted
I wander why I'm not happy. I wander why when that constant deep seated burning ache in the center of my head went away after 11 and 1/2 years went away
and 98% OF my seizures, I'm still not happy. Now I want the three second goldfish memory to be longer. I want the ache in my left foot to leave forever.
I want my energy back. I want the feeling to return in my arms and legs and head. I want to feel the damn needle going into my friggin *** .
I want the floaters to go away. I want to remember being a child and things that happened to me. I want to remember the movie that I watched last night.
I want my sinuses unblocked. I want to sleep at night without waking up gasping. I want the diarrhea/constipation to disappear. I don't want to be thirsty anymore.
I want to get rid of the pressure in my head and eyes. I want the sensitivities to lights and chemicals to go away.
I want the strange abdominal swellings to go away. I want to be strong again.
I am tired of all the atb's and supplements. I'm tired of the doctors and specialists. I don't care what the tests show I never want to see them again.
I'm tired of them brushing me off when telling me my results then 4 months later calling to reschedule because of abnormal results.
I'm tired of all of the miracle cures out there. I'm tired of doctor's, pharmaceuticals, and alternatives getting rich from me.
I should have offed myself years ago when this first started. I should do it now but no one would understand. It's all about everyone else isn't it.
Why have I been chosen to live instead of dying? To be constantly tortured and tormented. Why was I chosen to suffer for so long with no end in sight?
Why do I continue to struggle each day to take my medicine and supplements and alternatives?
Because, maybe in an hour I'll feel better. If you have a cure it is your duty to share it. And if you don't and you just want my money your too late
someone already beat you to it.
Posts: 290 | From ohio | Registered: Dec 2005
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So, what did you take? I didn't see you mention what you took that helped you so much. It might be there as I just skimmed it.
What did you take, and what was the dosage/frequency?
Thanks
Posts: 310 | From TN | Registered: Jan 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
No need to apologize, spooky. I am not herxing, and I was wondering the same thing. If you have a cure, wouldn't you be shouting it from the rooftops?
But if you have something to sell, you'd have to be careful in how to present it on this board, as soliciting gets you banned. So you'd have to post about how wonderful this SOMETHING is, build expectations, then ask people to contact you privately.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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I have to agree with Shazdancer, If I had a cure that helped me and thought it might help you, I would be SHOUTING IT FROM THE ROOF TOP, not asking you to meet me in the basement.
Sorry Susan, this is just my opinion. If you think you have something that would help, please share it with all of us, not just the ones that would contact you privately.
-------------------- quote form Mother Theresa"God won't give me more then I can handle, sometimes I wish he didn't trust me so much." Posts: 20 | From Wisconsin | Registered: Jul 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Yes, if it's a cure for Lyme, we lymies could raise millions of money to buy the secret.
Remember there is at least 200,000 Lyme infections each year in the US. So Lyme patients would be around millions.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Perhaps Susan has seen the way some posters of alternative treatments have been treated here in the past, and wants no part of it.
Can't say as I would blame her for that.
Let's give her a chance, huh?
Susan, thanks very much for your terrific post!! Success stories and positive reinforcement are always welcome here in my book.
Can you tell us any more here about your treatment(s) on the open forum?
Thanks -
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
i agree tracy, this could be a useful discussion for some of us.
i've used a great deal of 'naturopathic' therapies, focus, whatever you might call it.
i too started with abx and i was with a great LLMD. i don't believe the alternatives would have been so effective in my case if i had not treated out-of-control infection first. through my LLMD care, i was able to identify what i was dealing with, and educate myself very well.
that said, i did have to treat my body for the effects of the infection-killing agents - the ab's as well as strong herbal bacteriocides require that. herbal infection treatment causes the same problem re: telling the immune system it doesn't have to work.
i will never know if i could have treated Lyme and Bartonella, Babesia and Mycoplasma (yes, i had all of them) alternatively, but i think not.
i think these infections were so serious with me that i had to work with an LLMD to lower that load, and free my immune system somewhat, because i believe - based on allot of info - that these infections had a strangle-hold on my immune functions. that said, i do agree that using ab's and herbs to 'kill infection' tells your immune system it doesn't have to work, so it can shut down from that too.
that happened in both my kids and me, and i had to learn about that and work on detoxing and building that back up again.
your immune systerm is definately the optimal tool, and i agree one must utilize it as the first choice in any illness. that is the ultimate goal, but in each person there are particular obstacles and approaches to use to get your body back in balance.
i also know even Doc K in Seattle uses abx in many cases, but uses them with all of the above in mind.
in some cases, effective detoxification of the organs allows a patient to respond very favorably to abx that weren't 'working' before. sometimes, clearing your liver rids one of symptoms they thought were Lyme. sometimes -- a course of IV will reverse heart block or psychosis. sometimes -- the ab's shut down the immune system or create a parasitic infestation that is very serious. sometimes, a chronic case post ab treatment can use alternative means to rebuild, and then achieve amazing gains with homeopathy, or acupuncture, or strict nutritional 'treatment'. i'm one of those latter cases, but it took allot of time and effort. IMO, you definately need a plan and a focus as to how to achieve strong health into the future. i did/do not want to stay on ab's the rest of my life.
for instance, my IGM immunoglobulin (first line defence of the immune system) dropped abnormally low during illness and ab treatment. now, it has built back well into normal ranges. that was critical for me to address.
it really is a case by case by case situation. chidren are a different ball of wax entirely, and respond very differently as well.
chronic adults are imminently complicated. i continue to adhere to the belief that it is a marriage between allopathic and naturopathic remedies that is required, and it is the patient who must become educated. my education came from my LLMD. ILADS, as well as 'alternative' healers. i do not believe either 'approach' will be effective on it's own in chronic TBD's.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I just wanted to post again to give Susan support this time.
I have read some of her other posts in the other forums and it sounds like she has some good advice.
I look forward to hearing more from her. I hope she understands how gunshy we all can be, but I think she knows it's not an easy battle.
-------------------- quote form Mother Theresa"God won't give me more then I can handle, sometimes I wish he didn't trust me so much." Posts: 20 | From Wisconsin | Registered: Jul 2006
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posted
Why the need to email her privately for this recipe? Why not just post it here? And why the posts in every forum, even activism and seeking doctors, where such posts are clearly not appropriate?
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
And why is this "reposted"? Did moderators delete the original?
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
I was going to give people the name of the ND's office I had seen, and didn't really want it all over the internet. I have given this to some people, as I believe what the ND and the practitioner I saw are unique in what they know. This is the reason that I offered people to email me.
Posts: 21 | From San Francisco, CA | Registered: Jan 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for posting your story Susan. I just started seeing an LLND in my area who is working with my LLMD. She had lyme and cured herself. She uses acupuncture at every appointment.
I'm very happy that you are better!! Please stick around and share your knowledge. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I'm not talking smoke and mirrors. I'm telling you guys what I did. The only thing I would like to do is give you more info on the Digital Testing. I will hopefully be able to speak with my technician tomorrow so that he can give me a clear description of the process. I experienced it, but it was someone doing all this stuff...homeopathy, polarity, frequency testing, etc, and I just went with it until I was better. It's not that I'm trying to not tell you, it's just that it's complicated, and I'd like to get more info, and be able to put you guys in the right direction. I wish I knew of more docs and technicians who are adept at this stuff.
Posts: 21 | From San Francisco, CA | Registered: Jan 2007
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posted
i don't see where susan said she had a majic bullet to go and get or do, therefore do not see that she is 'withholding information'..
i think the thread title might suggest a 'cure', but not the thread content. cure in chronic illness is not definitive or absolute in nature or means, but rather a process. 'key to the cure' is meant, to my mind, to be more a philosophy and focus than a particular product or medicine.
i can't say for sure what the thread post was about as far as particular treatment, since i did not write it -- but i agree that we all should be thinking in global terms as far as wellness. many of us cannot take or continue abx. IMO, these ideas are well worth learning about as IMO we all will ultimately need this type of focus.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Susan, you were smart not to post the name of your ND in the open forum, of course.
Most of us will not be able to see this particular ND, but it is still helpful to know what specific modalities you used for treatment, and of course, a little more info on the ``Digital Testing''.
If your ND has any suggestions for how we can find practitioners who can do what he does, that would be wonderful. That may be a tough question for him, though.
There are lots and lots of ``testing machines'' out there, so if you can get more information on this, it would be very helpful.
As to alternative testing & treatments, so far I think I have seen you mention on various threads (not in order):
TESTING: Digital Testing Polarity?? Frequency testing?? Muscle testing (self-testing for offending/compatible substances)
As you are able, can you elaborate on some of these items, or add to the list? (I'm particularly interested in the homeopathy aspect myself, but I know that it is a combination of efforts to get well.)
Susan, try not to get discouraged by the nay-sayers here. There are just some people who are compelled to pre-judge things they know nothing about. Or those who believe that if it didn't work for them, then it can't work for anyone. So I'll borrow a phrase I saw posted by Tincup awhile back.
I guess all we can say to these negative people who tend towards unwarranted bias is:
Your village called. They want their idiot back.
(I really liked that one, Tinny! Thanks for brining it up!)
Thanks, Susan.
Tracy
Edit note: I originally thought it was Cave who posted the ``village idiot'' joke, but looks like it was Tincup. So, I changed my post. Sorry about that, Tinny. Didn't mean to give credit to someone else.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Man, you guys are brutal. Lighten up! No one is selling you anything.
hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
It scares me too, guys.
I wonder how many people have fled without giving their precious information (it's never simple!!) because of the bad posts of some of you.
I know one of the worst symptom of lyme is anger and agressiveness. All of us got that. But then keep quiet during the times of bad mood and herxes!!
Some of us here are open to read new info, even if it sounds too alternative for the most conservative guys.
If you're not interested, skip the post and leave space for the ones who are. I would be surprised if Susan doesn't simply disappear without giving any more info.
Do you still believe there is a magic bullet meaning a single drug or a simple treatment that someone could be hiding from us? Come on.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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posted
Thanks Susan- I'd appreciate any additional information you may have. I'm currently using a combination of treatments that include bicillin injections, QXCI/SCIO, Detox regimen, Phoscol, massage, L-theanine.
I'm looking for other alternatives. The digital tesing interests me.
Posts: 298 | From Maine | Registered: Jan 2004
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