posted
Someone asked if people can die from Lyme- my 14 year old daughter asked me that same question a while ago and I didn't know what to say.
Well, I did- but I didn't and won't tell her what I know- she doesn't need to know that and it will only make her even more afraid of something happening to me and her ending up alone.
Many of us, as you know, will be losing our NP in March and although "non-treatment" is not an issue- we DON"T have anyone here in Tx. The few "leads" don't seem to be worth pusueing for one reason or another...and mnay can't afford to travel out of state either.
So what do we do? Yes we all need a LLMD- or even a primary care Dr. but we don't have one- are we left to self-medicate and "hope" we get it all right? Or are we left to slowly waste away and die?
What is OUR future and those of us througout the country in the same situation?
When you can't get the antibiotics and/or supplements for all the symptoms you have to do "something" so I got Cat's Claw along with NOni- which tastes miserable- and I ordered Buhner's Healing Lyme book.
I don't want to be another statistic on the Lyme mortality list- we all know it can happen....but all I can do is continue to look for someone, buy the vitamins and herbs I learn about and pray....for all of us.
If it is happening in Tx. then it can happen anywhere else and it could affect you or someone you love. Please read tickedntx post in regard to this issue and send her the info she needs in order to get the word out that we need legislative support- ALL of us so we can continue recieving treatment and our doctors can practic freely in order to help us.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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I also ordered Bruhners book but the slow way on amazon and won't be getting it for awhile!!
I do not know what all of your symptoms are or your quality of life or if it has gotten better since treatment or worse since treatment but I do remembe you saying your liver enzymes are not in range.
To me sounds like that is your top priority, your liver? How symptom free are you?
It has become amazing to me how much learning this diagnosis and treatment and now this controversy has brought to me about the importance of taking my health in to my own hands. I'll never forget the neurologist who tried to tell me nothing was wrong with me when what I was explained to him...was way wrong. Like severe vertigo and Alzheimer's moments, not to mention the rest. I think drs. are just not all that skilled in really wanting to heal the patient by discovering the truth of the mystery of the human body, the human psyche and all of everything in the realms of possibilities. I think drs. now just want to be right in what they determine because they have to determine something in the few minutes they see you and then send you on your way.
I wish the best for all of us at this cross roads in determing what to do with how we are going to treat ourselves and what kind of help we are going to receive from physicians who are worth their salt.
I also ordered Bruhners book but the slow way on amazon and won't be getting it for awhile!!
I do not know what all of your symptoms are or your quality of life or if it has gotten better since treatment or worse since treatment, but I do remember you saying your liver enzymes are not in range.
To me sounds like that is your top priority, your liver? How symptom free are you?
It has become amazing to me how much learning this diagnosis and treatment and now this controversy has brought to me about the importance of taking my health in to my own hands.
I'll never forget the neurologist who tried to tell me nothing was wrong with me when what I was explained to him...was way wrong. Like severe vertigo and Alzheimer's moments, not to mention the rest.
I think drs. are just not all that skilled in really wanting to heal the patient by discovering the truth of the mystery of the human body, the human psyche, and all of everything in the realms of possibilities.
I think drs. now just want to be right in what they determine because they have to determine something in the few minutes they see you and then send you on your way.
I wish the best for all of us at this cross roads in determing what to do with how we are going to treat ourselves and what kind of help we are going to receive from physicians who are worth their salt.
Jo, when the time comes that our lyme is actually taking our life, please tell your daughter/children at that time. My late sister toled both of her kids to help prepare them. Also, they had certain questions, and she was able to sanswer them.
Turtle, please hit enter more will you? LOL You had excellent feedback here for Jo.
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posted
I honestly didn't realize that so many people were dying from Lyme disease! I am a bit disturbed by this.
It makes it sound as if we are all goners soon. I don't know how to feel when I read this stuff.
I hope the Lyme conference in April will allow me to ask about the statistics on this because if I am about to get married, it sounds like I should be writing out my will NOW.
Posts: 331 | From virginia | Registered: Nov 2005
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Honestly, I think that many suicides are probably related to an underlying Bb infection, just a theory.
There are lots and lots of people with lyme who probably dont' have the psychiatric element, but I am not sure. Seems it remains very physical for some, even the neurological part of numbness/tingling.
I just think for some....a prolonged anxiety and depression as results of the psychiatric disturbance also the sensitvity to sound can be a cause for any of the paranoia.
I think that if prolonged and immune system shot from too much stress, plus if depersonalization and Alxheimers on top of it too....it really truly does drive a person into madness.
Honesly from my very uneducated view, I do not think lyme disease has actually killed so many people from teh physical...but it has been only recently I have learned of a 37 year old woman who died in her sleep and had lyme for 8 years.
I wouldn't doubt either that prolonged untreated lyme, what it does to the brain could just cause a stop in function.
There had been times when I felt like there was a clamp on my brain. Or that my hemispheres were dividing. Plus I was not remembering to breath.
It has been said to me that many lyme patients feel like they are going to die and this is a real true valid feeling. However, whether they actually do die or not....is probably more often than not....not. Again, just theorizing an opinion.
But back to Jo, and I am in the same situation of trying to determine a course of action after abx for 6 months....the question is.....what next, without the guidance of the physician or the access to treatment?
And we all know how good lymsies are a thinking and planning ahead!
posted
Basically, no one knows the true statistics on lyme fatalities, since the government is supporting the view that fatalities are rare and has made the reporting system reflect totally inaccurate impressions.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I don't think anyone wants to think about the "death" possibility- but we all know it's there. I understand you can die not necessarily from the tick bite itself but from all the complications that can occur- most especially if you're not being treated.
I think vitamins and herbs all have their value but if you're not being seen by some type of Dr.- I'll take a vet at this point- and are not being treated with anti-bitoics, then you may run a higher risk than others.It also depends on how long you've been sick, if it was "caught" in time, etc.
I never really "worried" before- but now that I will be doctor-less pretty soon and have been off meds for about 3 weeks- I am getting scared.
I can give advice pretty well but can't take it....you can't live in fear of "anything" since only God knows when we're going to go. We can't live in denial either and "pretend" that we're not sick or that it'll just go away- but all of this Lyme stuff, along with other issues with my kids, has really taught me to just live for today and truly enjoy each moment. You have a whole new life ahead of youj- don't ber thinking about a will- be thinking about your weddibng and honeymoon and the house- that'll keep your mind off the fact that you even have Lyme.
quote:Originally posted by vachick: I honestly didn't realize that so many people were dying from Lyme disease! I am a bit disturbed by this.
It makes it sound as if we are all goners soon. I don't know how to feel when I read this stuff.
I hope the Lyme conference in April will allow me to ask about the statistics on this because if I am about to get married, it sounds like I should be writing out my will NOW.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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quote:Originally posted by painted turtle: Hi VAchick,
Honestly, I think that many suicides are probably related to an underlying Bb infection, just a theory.
100% agree and enjoyed the post. As for someone who knew what was going on with my disease I knew my death was going to be agonizing and slow (Bb with strep) I was determined not to go down that route. What about those who have no idea whats going on? A living hell, so I definitely agree.
As to the numbers it's been proved that borrelia is a major player in disease (not "lyme borrelia"). An Alzheimer's pubmed article had 14/14 positive for borrelia who had the disease. Same type studies with ALS,Fibro,etc. "Lyme borrelia" is a subset of a much larger pandemic borrelia. I might add that suicide is also a pandemic. Traditional abx alone are impossible against this onslaught.
Jo3 I showed you oil of oregano, I'll print out a list on silver. Again I'm not saying it will cure you but would you rather be on it or on nothing? As far as safety the VA has purchased it for use in its hospitals so that should tell you something. Also, many hospitals are now silver literate. Keep in mind Dr Burgdorfer is the Dr who Lyme was named after. Borrelia burgdorferi. --------------------------------------------- With the information gained from Dr. Burgdorfer; DEDI redesigned the mineral product to Dr. Burgdorfer's specifications, which now brought forth a product which, at varying strengths, was deadly against bacteria, viral and fungal infections.
The laboratory test results, animal test results and human trial results, revealed the following regarding infectious diseases:
1. Very effective against AIDS/HIV 2. Very effective against Lyme Disease 3. Very effective against Hepatitis C 4. Very effective against Shingles 5. Very effective against Staphylococcus Aureus 6. Very effective against sinus infections 7. Very effective against ear infections 8. Very effective against acne, boils, rashes, lupus and burns. 9. Very effective against strep throat 10. Very effective against food poisoning 11. Very effective against fungal infections to include infections under finger and toe nails 12. Very effective in promotion of healingwithout excess scarring tissue remaining. 13. Possibly effective against leukemia, as tests were underway when DEDI was forced out of business and the President imprisoned which were revealing: That leukemia was not a cancer, but caused by some unknown virus or bacteria. A doctor conducting trials upon 2 terminal leukemia patients reported to DEDI that the white/red blood cells had normalized in the two leukemia patients he was treating. After 3 months of treatment they were off dialysis and were A-symptomatic. http://discovery-experimental.com/infectious_diseases/infectious_diseases.htm
Except for silver GiGi and I agree on most everything else. She's right in that we've done this to ourselves and we need to clean up our act. Anyhoo, lots of folks do very well without a llmd so try not to stress so much
I remember another poster telling you to take time out for yourself. An hour a day should do it. (doesn't have to be all at once). Go somewhere ALONE and forbid anyone from disturbing you. Not only is it essential imo for the body to recover I also think it's great for the soul. Advice that I sorely do not follow like I should. best of luck.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Think about going to angelflights website......even if you saw one of the doctors every two/three months who were miles away.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Jo3
Im in the same boat as you-- Im in Austin--
Mexico is a 3 hour car ride away -- you can get what you need there--I do -- Much less expencive too--
So you do have good options-- Call me if you want --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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quote:Originally posted by brentb: Again I'm not saying it will cure you but would you rather be on it or on nothing? As far as safety the VA has purchased it for use in its hospitals so that should tell you something. Also, many hospitals are now silver literate. [/QB]
Correct me if I'm wrong...but I don't think the VA is having their patients DRINK the silver! They use it on open wounds and the like, right?
jo....Mangosteen is far more effective than Noni and tastes 100% better.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Hi Jo, I am sorry to hear that you will be loosing your doctor. I myself live 10 hours and
two states away from my LLMD and it was a hard decision to make to spend the money and travel to
see him. Not to mention that I lost my job because of this disease...my husband was fired
from his job and ended up in jail....its a long story. But I found a way to make it. I decided
that my other bills would have to wait and in some miracle God found a way. I know it. God always
seems to make sure you will be okay. Your health is very important. You have to do what you have
to do. I don't know what LLMD would be closest to you now but mine only needs to see you every 6
months if you are on orals. That is not that bad. I am on IV's now and I have to travel to see him
every 6 weeks. Talk about a financial burdon. I spend $550 every month to see him...this is month
number 5. Somehow the money shows up. I don't know how or why it just does. Yes I am behind on
most of my bills but like I said, you have to do what you have to do.
Good luck to you...
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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posted
Lymetoo... regarding Noni vs. Mangosteen... do you think it's fair to be saying that Mangosteen is "far more effective" than Noni?
Has anyone had their LLMD recommend mangosteen? I go to Dr. K and he prescribed a certain kind of Noni. So, there's one LLMD that thinks Noni is useful.
Dont' get me wrong...I'm sure mangosteen is great... I've even thought of trying it. I'm just not sure though, if it's right to be telling people that it's "more effective" than something else. Just curious... on what basis have you determined that?
quote:Originally posted by Lymetoo: jo....Mangosteen is far more effective than Noni and tastes 100% better.
quote:Originally posted by tequeslady: Lymetoo... regarding Noni vs. Mangosteen... do you think it's fair to be saying that Mangosteen is "far more effective" than Noni?
[/QB][/QUOTE] Yes, I do. Go to PubMed and compare the research on Noni and the research on mangosteen. You'll be surprised!
Correct me if I'm wrong...but I don't think the VA is having their patients DRINK the silver! They use it on open wounds and the like, right? [/QB]
It's a supplement so I assume it's taken orally, maybe even IV.
ASAP states it has two different products with the ASAP-AGX-32 being for wounds.
Veterans Hospital Purchase Contract Signed Wound Care Using ASAP-AGX-32�
One of the outstanding features of the ASAP-AGX-32� product is that it has the proven ability to be a broad-spectrum antimicrobial, while remaining completely non-toxic to humans at the level at which it is being used. American Biotech Labs' management found that numerous doctors and humanitarian groups etc. were using the product as an inexpensive alternative for the disinfection of wounds, for general wound care, and wound washing. Because of the impressive use information being reported by these individuals, management decided to extend this extraordinary technology into new medical applications, by using the ASAP-AGX-32� as the base for creating a new burn and wound-care product. It took three full-time doctors over a year-and-a-half to perfect the engineering of the powerful ASAP- AGX-32� product into the new AGX SILGEL� product. The FDA testing and efficacy work has been completed on the AGX SILGEL� product.
and the supplement/abx
Government Purchase Contract Signed
American Biotech Labs has been issued a government purchase contract on the Silver Biotics� product. The GSA government purchase number is GSA # GS-07F-0826N.
Veterans Hospital Purchase Contract Signed
American Biotech Labs has just been issued a purchase contract on the Silver Biotics� supplement product (10/04) by the U.S. Veterans Administration (VA). The Silver Biotics� supplement product is one of very few supplements ever approved to be purchased and used in Veterans Hospital systems. The VA purchase contract is in effect until 09/30/2009. Contract number V797P-5762X. FSC Group 65, Part 1, Section B, Pharmaceuticals, Special Item Number (SIN):622 Item #10. Full VA approved purchase documentation is available upon request.
posted
The objective of the pro-Codex Alimentarius multi nationals is to "boil the frog slowly" so that we do not wake up to it in time to avoid Codex.
Once we have "HARMonize" to Codex Alimentarius, as long as we are in the WTO, we cannot amend or change what we've been "HARMonize" to.
Codex Alimentarius will go into global implementation by December 31, 2009, unless We, the People, avert it. We must act now because right now, with $758 Million spent on declared Congressional lobbying by Big Pharma last year, there are members of Congress who are trying to overturn DSHEA and allow Pharma-friendly free reign for Codex. If protective laws like DSHEA are destroyed, the sanctioning power of the autocratic WTO kicks in, and it will be impossible to get out from under Codex Alimentarius. We can protect our access to high potency nutrients and stave off an adulterated food supply only by putting pressure on Congress.
[ 23. February 2006, 10:44 PM: Message edited by: brentb ]
Posts: 731 | From Humble,TX | Registered: Feb 2005
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JimBoB
Unregistered
posted
Jo:
Yes, by all means treat yourself. NO ONE knows you better than you do anyway.
You are NOT alone, IF you read the Healing Lyme book AND act on Stephen's recommendations, AND IF you listen and take with a grain of salt the things on this group, put it all together and ACT on it all.
MOST docs are just ducks anyhow. In it for the money. From what I am gathering on this list, MANY llmd's are also. SOME sound good, many do not.
YOU have to live in your body, take care of it. No one else will.
posted
Thanks so much to all of you for your words of wisdom,encouaregmen, experience,intellingence- you are all so smart and i feel so stupid sometimes about this whole thing.
OH- I have realized JimBob that I need to take matters into my own hands....it was SO easy though, to have such a terrific Dr. and be able to place my life in hers...
So what I'm stuck on is this- how do I know what to take, when, how much, the contradictions and contraindications- what some people think is good vs. what others do, what Buhner says- I know my body but I don't know enough about all this stuff.
Do I just make a list of what you old Lymies (not offense intended) and then research and see if it works, if it's good.
When I didn't know what was wrong- I just went with it, slowly getting sicker- now that I know,but can't get it all straight in my head with all the options and protocols- I'm confused.
I know after a year and a half, I'm not much better even with anti-biotics. I know that even though I take all these things (ex. for memory) I still have many issues I know the stuff I take for depression helps but it's still there...
So one of my questions is...if late stage chronic Lyme can'tbe cured, do the antibiotics just stop the Lyme from getting worse- but what about times when you are worse? Does it keep it from reproducing? What about if you never get into that remission stage? I was told a year and a half was average treatment time- but now I hear that it isn't enough....I hate this thing. Jo:
Yes, by all means treat yourself. NO ONE knows you better than you do anyway.
You are NOT alone, IF you read the Healing Lyme book AND act on Stephen's recommendations, AND IF you listen and take with a grain of salt the things on this group, put it all together and ACT on it all.
MOST docs are just ducks anyhow. In it for the money. From what I am gathering on this list, MANY llmd's are also. SOME sound good, many do not.
YOU have to live in your body, take care of it. No one else will.
THINK, ACT, PROSPER!
Jim [/QUOTE]
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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JimBoB
Unregistered
posted
Jo:
I can't remember. DID you say you have the Healing Lyme Book? IF not, please get it right away.
WHEN you get done studying it, you WILL know what to do. Otherwise read my posts on Herbal Protocol from last month and early this month.
MANY do NOT ever get cured or even much help from abx. Not everyone will from herbs, but most do. I am sticking to the herbs. Plus some vitamins. I feel much better, almost normal with them, as opposed to feeling really bad at times on the abx.
Just do it. You will never know IF you do NOT.
You can always go back to abx, IF you want to if you don't think the results are good enough on herbs alone.
Tetracycline, Doxycycline and Amoxicillin have been around for a long time and are pretty safe for most people. Do them easy IF you do at all. BUT do them WITH herbs too. OR just do the herbs alone.
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