1. It makes me very angry that doctors can lose their licenses for doing what they were TAUGHT to do - treat bacterial infections with antibiotics.
2. It makes me very angry that if indeed antibiotics significantly reduce very HARMFUL LEVELS of inflammation; the doctors who have denied antibiotic therapy have not offered an alternative approach to control this damaging ongoing inflammation and oxidative stress.
3. It makes me very angry that this disease often causes family fights and break-ups.
4. It makes me very angry that the out of pocket costs to fight this disease devastates many persons and families.
5. It makes me very angry that society is losing productive, intelligent contributors due to this disease.
6. It makes me very angry that longstanding antibiotics are used to treat at least 12 other diseases, yet are denied for lyme patients.
7. It makes me very angry that persons with lyme disease reached the point where they felt they HAD to try very dangerous experimental therapies and have died as a result (ICHT using DNP).
8. It makes me very angry that significant dollars are not being spent to educate the public on how to PREVENT this disease.
9. It makes me very angry that dollars are not being spent to CONTROL THE TICK POPULATION in endemic areas especially.
10. It makes me very angry that research institutions refuse to even look at research from other notable institutions (no joint/team effort).
11. It makes me very angry that LLMDs charge a LOT of money for visits and do not accept insurance and THEN request financial help to cover attorney's fees if their treatment is challenged.
12. It makes me very angry that doctors are allowed to refuse to treat medicare/medicaid-covered patients.
13. It makes me very angry that most American doctors have no/very little knowledge about nutrition. Nutritional consultants should be available as a first line of treatment.
For my own mental health, I know I must let go of this anger.
We must change our perspective and see the lyme-antibiotic problem as a time to PAUSE.
Further angering/challenging those who are in positions of authority/influence might make a bad situation worse.
Instead of demanding ongoing antibiotic therapy, why not approach this situation from another perspective?
Why not say to those who have recommended AGAINST THE USE OF ANTIBIOTICS..."Okay. You have recommended to all doctors across American that they NOT treat longstanding/chronic lyme patients with continuing antibiotics. What DO YOU RECOMMEND to treat those with patients with chronic lyme or those for whom this disease has progressed to "autoimmune"?
We do NOT tell HIV patients, "Sorry, we do not have a cure. Live with it." HIV patients have a "thin" blood problem and are given drugs to counter this symptom. Yet lyme patients who have "thick" blood are not (routinely)offered the drugs to counter that symptom. Yes, I know some strains of Bb are resistant to heparin.
If "they" truly believe antibiotics do not work, perhaps "they" need to take a hard look at other drug classes and other treatments that may help.
Look at heparin therapy. Look at far infrared saunas. Look at ozone saunas (do not breathe ozone). Look at Rife therapy - using frequencies to target the pathogen. Look hard at a nutritional approach.
If Johns Hopkins can come up with a way to cure nonstop seizures (if a pathogen, not a genetic defect is the trigger) using a ketogenic DIET, then surely nutrition can play a huge part in healing.
(Thank you, Johns Hopkins, for your continuing nutritional research and interest. Thank you for the Meyer's cocktail.)
We can CURE lyme disease today IF we change the way we see and approach this UNIQUE infection.
[ 18. November 2006, 02:04 PM: Message edited by: Marnie ]
Posted by luvs2ride (Member # 8090) on :
Marnie,
Thank you so much for working so hard for all of us who are sick. I know you yourself do not have this disease and your efforts are entirely for the benefit of others.
I came here today to pull another of your posts which I intend to read and re-read and decipher until I completely get it.
You are so right about the nutritional role in healing lyme. No one here seems to want to believe me, but diet and supplementing the areas where my body is weak is helping me tremendously. So much so, it has given me back my NORMAL life.
I still have Lyme. I'm not "cured" yet. I am autoimmune and praying it is not permanent. I would love to have a miracle medicine I could just ingest and all would be well. But so far, there is no such drug and if I have to treat this thing longterm, I choose to do so in the healthiest manner possible that also produces the best results.
Please don't quit Marnie. I believe you are on the right path.
Yes, and would some LLMD please explain why it is necessary to charge 7x as much for an office visit as any other regular physician? I pay $50 for the office visit with my doctor and the LLMDs charged me $350. That did not include any tests beyond physical exam.
Luvs
Posted by heiwalove (Member # 6467) on :
i agree with absolutely every point you've made here.
thank you for this.
Posted by kumba (Member # 7733) on :
Thank you for your post Marnie. I am incrediably angry at the medical community, thus far, for failing me and so many others here.
On nutrition: One of the doc's I went to see was an MD who specializes in nutrition and treats many disease theu nutriotion alone. He has several books out and pts form all over. Dr. F in NJ. He does not believe in long term use of antibiotics for Lyme and thinks they are way to toxic and carcinogens and sets you up for major diseases in the long run. while his diet can surely boost one's immune system and help fight infections by doing so...I don't beleive it can kill off lyme and other infections, nor does he claim so. but defineitly a great diet if you can adhere to it. anyone interested in it can PM me.
Posted by kumba (Member # 7733) on :
Thank you for your post Marnie. I am incrediably angry at the medical community, thus far, for failing me and so many others here.
On nutrition: One of the doc's I went to see was an MD who specializes in nutrition and treats many disease theu nutriotion alone. He has several books out and pts form all over. Dr. F in NJ. He does not believe in long term use of antibiotics for Lyme and thinks they are way to toxic and carcinogens and sets you up for major diseases in the long run. while his diet can surely boost one's immune system and help fight infections by doing so...I don't beleive it can kill off lyme and other infections, nor does he claim so. but defineitly a great diet if you can adhere to it. anyone interested in it can PM me.
Posted by lymemomtooo (Member # 5396) on :
Marnie, you are one of my heroes and I am in awe of your knowledge, but don't get mad, I disagree with the following:
"Further angering/challenging those who are in positions of authority/influence might make a bad situation worse."
I think the rally/march idea was what finally got important people to help with the AIDS epidemic. We are not getting enough help to get adequate research studies funded, or enough strength to have the ID ducks to listen to our plight.
While my daughter was hysterical and borderling suicidal, just last night, I really knew I had to march. I can not sit back and let her die.
AND I CAN NOT SIT BACK AND JUST WRITE LETTERS. I HAVE TO TRY THE BIG PARADE.
Posted by lymemomtooo (Member # 5396) on :
Marnie, you are one of my heroes and I am in awe of your knowledge, but don't get mad, I disagree with the following:
"Further angering/challenging those who are in positions of authority/influence might make a bad situation worse."
I think the rally/march idea was what finally got important people to help with the AIDS epidemic. We are not getting enough help to get adequate research studies funded, or enough strength to have the ID ducks to listen to our plight.
While my daughter was hysterical and borderling suicidal, just last night, I really knew I had to march. I can not sit back and let her die.
AND I CAN NOT SIT BACK AND JUST WRITE LETTERS. I HAVE TO TRY THE BIG PARADE.
Posted by TerryK (Member # 8552) on :
Marnie, I also appreciate all the knowledge you so generously share with us in your research of lyme. Thank you!!
I'm angry too!!! I've lost decades of my life to an illness that could have been treated years ago. I'm angry that everyone in my family is sick with the same symptoms that I have and they will have to go to extraordinary measures to get diagnosed and treated and some of them won't or can't.
While I agree with most of what you've said, I have a different point of view on a few things.
quote: Instead of demanding ongoing antibiotic therapy, why not approach this situation from another perspective?
Why not say to those who have recommended AGAINST THE USE OF ANTIBIOTICS..."Okay. You have recommended to all doctors across American that they NOT treat longstanding/chronic lyme patients with continuing antibiotics. What DO YOU RECOMMEND to treat those with patients with chronic lyme or those for whom this disease has progressed to "autoimmune"?
The IDSA doesn't treat autoimmune disorders so they would not be expected to recommend anything. Autoimmune disorders are usually treated with prednisone and other immune suppressing drugs. Drugs that those with lyme should not take. As most of us know, treatment recommendations include prescription medications for sleeping pills, anti-depressants, anti-anxiety medications, pain medications etc... Nothing that actually cures the problem. Sooo...., I think that "they" believe it is covered....
quote: Look at heparin therapy. Look at far infrared saunas. Look at ozone saunas (do not breathe ozone). Look at Rife therapy - using frequencies to target the pathogen. Look hard at a nutritional approach.
Yes, I agree and I personally use most of those therapies and lot of other non-traditional therapies. Unfortunately, as you know, valid and some not so valid reasons exist that keep people from utilizing some of the althernatives. ie., money, time, energy and the brain power to research and use all of these therapies. Also, some buy into information from places like the AMA and quackwatch who are very biased against alternative therapies and have their own agenda.
Aside from those difficulties, many in the alternative field agree that antibiotics need to play a role in treating lyme, even those who do not like abx.
quote: Further angering/challenging those who are in positions of authority/influence might make a bad situation worse.
It might but ultimately we will win, just like others who have gone before us. The laws in the States that have been changed to allow lyme patients to get treatment did not happen without those in authority being challanged. Many of the children in the next 2 generations of my family are ill!! They and others will suffer the way that I and others here have suffered if nothing is done. We cannot allow it!! There is no choice. We have to put a stop to it. It's not like there is no evidence to support our position.
quote: It makes me very angry that doctors are allowed to refuse to treat medicare/medicaid-covered patients.
I'm on a fixed income and spending what little I was able to put away when I could work for my current lyme treatment. If I don't get well enough to replenish my retirement fund I will be living in very poor conditions indeed. So, I certainly understand the sentiment but if doctor's are forced to take medicare as it is now, believe me, our treatment options will be very much curtailed and rationed.
The people we should be angry with are the people who control medicare. They have cut payments to such an extent that many doctors cannot afford to treat medicare patients, particularly those doctors who offer a higher standard of care. Medicare needs to pay a reasonable rate rather than cutting payments to the bone and then tieing our hands by not allowing us, the patient, to pay the difference. Ideally, medicare should pay the same as other insurance companies rather than substantially less, sometimes only 1/2.
Medicare (same as other insurance companies)control treatment options. The doctors who go beyond the standard allopathic treatment are drummed out of medicare with investigations and restrictions. I'm told that the paperwork involved in handling medicare patients is very time consuming as compared to other patients as well.
These doctors could take medicare but they would have to spend very little time on patients so that they could push enough through to make up for the greatly reduced payment they get and the cost of all the paperwork AND they could only offer approved treatment, testing etc...
If a doctor wants to treat by spending more time with the patient and offering a broader range of treatments then they have no choice but to opt out of the medicare system.
As far as why LLMD's charge so much and then ask for help to pay for attorney's. I find that most LLMD's charge the going rate. Many of them take much more time with patients (like 2 or 3X's more) than other doctor's because lyme patients are complex and need the extra time if they are to get adequate help. I'm sure there are exceptions.
Much of what I said about medicare applies as far as LLMD's taking insurance. They cannot take insurance and treat lyme appropriately and that is only going to get worse now in light of IDSA guidelines. It may seem like it but doctor's don't have unlimited funds. They have to make a living too and deserve compensation for years and years of education. We've seen 2 recently that have gone bankrupt because they had the audacity to treat lyme patients appropriately.
Terry
Posted by Marnie (Member # 773) on :
What many here fail to understand is that abx. ARE altering the immune response from many angles.
Find the melatonin-tetracycline connections. "They" are trying to downregulate the Th1 pathway. Too much tyrosine IN the cells, too much tryptophan -> serotonin -> melatonin OUTSIDE the cells.
Downregulating TNF alpha (the Th1 pathway) is not necessarily a bad thing.
It's what we USE to do this that looks to make a HUGE difference whether we cure or simply alleviate the symptoms.
HIV is an infectious disease also, right? ID doctors are most certainly involved in that research too. Too bad ID doctors don't work WITH immunologists.
Does HIV CAUSE autoimmune (AIDS)? Does the VIRUS trigger autoimmune?
(There is a prominent doctor who has a long paper on that subject i.e., "HIV does NOT cause AIDs".)
He is right.
Mercury is the trigger. Silver, unfortunately, might be too.
When you protest, simply state (on your signs)...
NOW WHAT?
I believe they have a RESPONSIBILITY to offer symptomatic relief.
Let me make this perfectly clear. While I do NOT believe abx. are the "answer", I DO feel that what is fair for one, is fair for all and IF abx. are "allowed" to be used nonstop for OTHER infections (I have a list of 12), it is not FAIR to disallow them for lyme...esp. given the fact that we KNOW abx. reduce inflammation.
Would they rather Rx. $$$ Humira? That anti-inflammatory drug "side effect" includes cancer and TB.
Which of course brings me full circle...
How did we USED to treat TB?
LIGHT.
The way of the future will be the use of light and sound therapies. Mark my words.
Posted by mlkeen (Member # 1260) on :
Thank you Marnie for educating us and fighting for your sister. She is very lucky to have an advocate like you. Most of us have US have only you to help us.
Long term tetra( 2.5 years) played a key roll in making me well. I had 3 confirmed co-infections to also do battle with.
Also, discovering that wheat gluten was causing at least some of my inflamation and pain was huge. I had no gut symptoms and didn't produce anti-bodies for gluten when tested, but was well after 3 weeks of no carbs at all. I had purged yeast with diflucan after the abx and before giving carbs up completely. Now I can eat a few. I'm learning what bothers me and what does not. Wheat always triggers pain several days later.
Discovering what is the underlying cause that compromises our immune systems is very important. It is probably something you are in contact with every day, whether a food or toxin like mercury for example.
Much of what is sold to us as food is nothing but empty calories at best and loaded with chemicals as the norm.
It makes me want to cry for our children some days.
Mel
Posted by Marnie (Member # 773) on :
A 2005 study showed 1 out of every 133 Americans have or are developing celiac disease (gluten intolerance).
YIKES!
It OFTEN goes undiagnosed.
What is missing are 2 enzymes to breakdown gluten.
They are working on a supplement right now. This will be like taking "Lactaid" for those who have a lactose intolerance (lack the enyzme to breakdown lactose). That will make life for those with this problem easier since the diet is soooooo restrictive.
But it makes me wonder...what is triggering the depletion of these enzymes? Why would our body "want" us to be unable to breakdown gluten?
I always look at the symptoms as a body DEFENSIVE move.
If we restore those enzymes, then what?
Celiac (UNTREATED) can lead to dementia. But the restrictive diet...
"Celiac Disease Linked to Dementia
Gluten-Free Diet May *Reverse* Mental Decline in Patients Oct. 13, 2006"
This looks to be in part caused by a recessive gene that can emerge. There is a strong family (genetic) link. It is somehow also linked to a VIRUS (EBV re-emerge?)...triggering the Th2 pathway as it can lead to bone cancer i.e., multiple myeloma.
Terbutaline is a developmental neurotoxicant. PMID: 14610225.
Beta(2)-adrenoceptor agonists, especially terbutaline, are widely used to arrest preterm labor, but they also cross the placenta to stimulate fetal beta-adrenoceptors that control neural cell differentiation.
You bet!
Posted by ping (Member # 6974) on :
Marnie,
Thank you for an especially good perspective on a number of fronts.
#11 - AGREE! My thanks to someone finally coming out and saying it!
#7 - DISAGREE! No one was ever "forced" into this illegal tx. They had full knowledge (I remember the huge battle too) and it was their choice .
Thanks very much again for posting this.
"We are more than containers for Lyme." ping
Posted by Marnie (Member # 773) on :
I know...by #7 I meant some lyme patients felt they had no other course of action to cure this disease and felt they HAD to resort to a very, very, very dangerous treatment offered for an exorbitant price by a totally unethical person.
I tried hard to warn..from several perspectives.
I KNEW someone would die. DNP, for those of you who do not know, is a very powerful acid in a class with cyanide! With that strong of an acid, the electrolytes WILL drop to a dangerous level.
I edited #7 to make it clearer. Thanks for pointing it out.
[ 18. November 2006, 02:06 PM: Message edited by: Marnie ]
Posted by map1131 (Member # 2022) on :
Marnie, thanks. That was very well said. That's exactly where my heart and mind was over 3 years ago when I realized there has got to be a better way of treating this lyme monster. I was angry.
I had been on abx for over three years and I had thought I'd caught it in the early stages. I was angry because I thought a doctor(s) could cure me.
One day it hit me. I'm in charge of my own health and I'm not depending on any doctor. I'm only going to use a doctor to take meds for my most extreme symptoms. The rest is up to me.
So began my alternative journey. Turned to rife, supplements, colonics, detoxing, muscle testing alternative doc, etc, etc.
The last 3 years have been a battle. I'm on the other side of dying. I'm living again. Cured? Not using that word yet. Reality is that some of this might always be with me. But I'm in control and always searching for ways to fight it.
I'm not angry anymore.
Pam
Posted by robi (Member # 5547) on :
Marnie ,
Please come to the rally.
robi
Posted by mlkeen (Member # 1260) on :
I had been taking mg most of the time I had lyme with some improvement in mental sharpness. It was giving up wheat completely that brought complete sharpness back in weeks.
Gluten intolerance causes inflammation in the gut that prevents absorbtion of nutrients. After 5 months of no wheat except to test my reactions, I have no interest in it. Farm animals aren't fed wheat, why would it be any better for us, especially when eaten many times a day.
I don't take Lactaid either, I just avoid dairy. There is a reason why my body can't handle these foods and I don't want to try to "trick" it into accepting them.
It is only frustrating when eating dinner at friend's homes who don't quite get it. Eating out is ok, because I have learned which chains have menu items wheat and gluten free.