posted
Is it MS, Lupus, or some other weird inflammatory disease causing symptoms similar to lyme symptoms?
Is it a disease that has no name yet?
If your body is making antibodies to the infection, but there are so many cross reactivites with virus's etc... How can on be sure that Lyme is ACTUALLY the culprit?
Maybe this is why some do not respond to abx?... I don't respond to abx and I am on a pretty heavy duty combo.
When is it the right time to look into a different disease all together???
I don't know, just some thoughts I had...
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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adamm
Unregistered
posted
Well, seeing as you can't cure Lyme...
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quote:Originally posted by UnexpectedIlls: Is it MS, Lupus, or some other weird inflammatory disease causing symptoms similar to lyme symptoms?
Is it a disease that has no name yet?
If your body is making antibodies to the infection, but there are so many cross reactivites with virus's etc... How can on be sure that Lyme is ACTUALLY the culprit?
Maybe this is why some do not respond to abx?... I don't respond to abx and I am on a pretty heavy duty combo.
When is it the right time to look into a different disease all together???
I don't know, just some thoughts I had...
If I was you, I'd go back to basics. There is no magic pill bullit.
Detox if you need to. Eat extremely healthy AND according to your nutritional type (something called Metabolic Typing.) Fix your metabolic imbalances. Drink clearn, pH and electrolyte balanced water. Get sufficient quality sleep. Get sufficient sunshine and fresh air (take VitD supplement during winter time in the form of Fish oil, for example.)
This recipe is likely to give your body all the ammunition it needs to fight any infection you may have.
Personally, I would drop any abx and other px drugs. IMO, most people, even with Lyme disease, do not need them long term. It will do more damage than good.
You're asking if it's a disease with no name yet. Typically, a disease "name" is merely a buzzword for a general description of the symptoms that you may have. Doesn't mean you have a new bug or something. The point is that any person in the world can have a set of symptoms that is different from any known "disease". So should we come up with new disease "names" every time a patient presents with a new set of symptoms? No, I think that would be a very bad idea. Because it would only serve to focus on the disease and the symptoms, rather than trying to figure what is causing the symptoms.
So again, just go back to basics. Live a sane, healthy life free of stress as much as possible. And you'll probably be just fine.
But you must have an open mind to do this. You must seek the info you need. Because there's no money or fame to be made by anyone by promoting healthy living because it would mean a drug and doctor free world.
I'm not a Dr. The above is IMO and in my experience.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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posted
Addam.. COuld you elaborate just a little...
Mike-- Stop all abx.. I may do that!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Personally, one of my biggest fears is that the lyme has triggered some kind of autoimmune disease in my brain. A lot of autoimmune diseases are thought to be triggered by SOME kind of infection.
If you have read Cure Unknown you know some researchers have shown that the antibody to OspA can cross react with the myelin covering our nerves....in the central and peripheral nervous system.
I know a lot of people don't like this discussion, but I have to ask because I have numerous brain lesions, hyper reflexes, O-band in CSF.
I am sure that you have probably already been tested for every other possibility?? After watching Cure Unknown, I am convinced that it takes some people (maybe most?) years before they see real improvement.
I hate to see people having to doubt their diagnosis because of the lack of knowledge about this disease. What is your gut feeling about it all? Have you made ANY improvements?
In Under Our Skin, there were people that spent years getting better. I can't imagine someone being any worse off than that Mandy and now she looks normal. (I think she got worse before getting better.)
I was SO HAPPY to get my positive WB for lyme. I thought I could close the door on something like MS. My LLMD told me at my last appt. that I might have 2 different diseases going on at once...NOT what I wanted to hear.
I seriously think this is one nasty disease and that the possibilities are endless. All of the answers are not known yet and it leaves us all with a lot of questions.
What does your LLMD say to you? Honestly, I would have the same questions if I hadn't seen any improvement. It sickens me that any of us are in these situations at all.
quote:Originally posted by UnexpectedIlls: Addam.. COuld you elaborate just a little...
Mike-- Stop all abx.. I may do that!!
Unex,
I was on high dose abx myself for 1 1/2 year for chronic neuro Lyme disease. At one point I popped 16g of Amoxicillin per day for 1/2 year!!!
In the end it didn't do anything.
I eventually dropped all doctors, incl my three LLMDs...and started investigating disease basics and natural health.
One main reason I dropped them was that none of them were really taking my general health into consideration. All they did was to px abx. They didn't consider any other fundamental bodily functions, such as if I was eating nutritionally correct or if I was even toxic or emotionally distressed. I mean, HALLO!!!! Aren't they supposed to be DOCTORs??
I have now taken my health completely into my own hands. I have only found one doctor so far I can trust. And he doesn't get to do anything on me that I do not fully understand and consent to. And oh, he's a dentist btw. He he. Still looking for that MD or DC or naturopath I may need some day.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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posted
Soonermom-- I also have hyperreflexes... and other sutoimmune markers such as ANA, RF and high CRP.. ANA is negative now, but why were they there to begin with??
My Gut tells me that I am not ONLY dealing with lyme, or lyme at all. My symptoms are mostly neurological which keep me basically bedridden. I have almost all the symptoms of MS
I have been on ABX since May.. NO changes in my symptoms , except for 2 weeks when I was on Tetracycline I was able to get out of bed.. That quickly dissapted.. so I cannot be sure of why that actually happened.
I am going to discuss all of this with my LLMD at my next appt. I am seeing the actual doc and I feel like it would be best to speak with him.
denial sucks, I am in it everyday. I get sick of taking meds that make me feel nothing. No herx, no improvemnt.
I dont know the answers, and it seems not many doctors do.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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quote:Originally posted by soonermom: Personally, one of my biggest fears is that the lyme has triggered some kind of autoimmune disease in my brain. A lot of autoimmune diseases are thought to be triggered by SOME kind of infection.
If you have read Cure Unknown you know some researchers have shown that the antibody to OspA can cross react with the myelin covering our nerves....in the central and peripheral nervous system.
I know a lot of people don't like this discussion, but I have to ask because I have numerous brain lesions, hyper reflexes, O-band in CSF.
I am sure that you have probably already been tested for every other possibility?? After watching Cure Unknown, I am convinced that it takes some people (maybe most?) years before they see real improvement.
I hate to see people having to doubt their diagnosis because of the lack of knowledge about this disease. What is your gut feeling about it all? Have you made ANY improvements?
In Under Our Skin, there were people that spent years getting better. I can't imagine someone being any worse off than that Mandy and now she looks normal. (I think she got worse before getting better.)
I was SO HAPPY to get my positive WB for lyme. I thought I could close the door on something like MS. My LLMD told me at my last appt. that I might have 2 different diseases going on at once...NOT what I wanted to hear.
I seriously think this is one nasty disease and that the possibilities are endless. All of the answers are not known yet and it leaves us all with a lot of questions.
What does your LLMD say to you? Honestly, I would have the same questions if I hadn't seen any improvement. It sickens me that any of us are in these situations at all.
sooner,
Lyme disease is an opportunistic disease like any other disease.
Simply stated, depending on your overall general state of health, the Lyme bacteria will cause anywhere from extremely severe symptoms to no symptoms at all.
I personally think that Lyme bacteria, i.e. BB, once you get it, you'll probably never get rid of it. But you can certainly prevent it from making havoc to your body. And that is what we're all trying to do here, no?
Think of it this way too. Don't you think it's likely that the majority of the US population already have Bb roaming around in their bodies? I mean, it's so easy to get bitten by a tick AND it's so easy to overlook a tick. Right?
I've seen estimates that 20% of the popolation has Bb. I think it's even more because of what I just said above.
So since Bb is an opportunist, like any other pathogen, you can tame it simply by making your body a fortress. But that is NOT achieved with abx and cyst busters and so on. On the contrary.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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adamm
Unregistered
posted
I was implying that, if you were ever exposed to Lyme, its only reasonable to do everything you can to address the possibility that your the infection is the source of your symptoms. If there's anything more you could do in terms of Lyme txment, I say go for it...
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posted
Adamm I see what you're saying now... I am treating, have been since May but not seeing any difference. I know, it takes a LONG time. I just think by NOW I should have seen SOME sort of difference... Some kind of herx reaction... SOMETHING!
Ok.. off to more research to drive me completely mad!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
U-Ills,
I will ahve been on abx for a year on Nov. 13th. I have been on IV Roceph for 5 mos. (1st abx used) then IM Bicillin/Zith, Zith and cipro (short time), and now I am only on 300 mg doxy/day.
I have just begun to see slight improvement with this relatively low dose of doxy. I'm thinking that something other than lyme is tormenting me too.
This could be the case as doxy hits a lot of things.
I am with symptoms like yours though perhaps not as severe. I am pretty much homebound and was bed bound for most of IV Roceph. I can mow the lawn on a good day now.
It ain't great, but it's something.
Wanted to comment on Mike's reply. I never was into rx drugs. It killed me to have to take abx. But even in Buhners HEALING LYME, he states that in neuro lyme abx are necessary.
For how long? IDK. I can't imagine poisioning my body for 3-4 years....but on the other hand, if I am seeing progress?
What I want to say is that you are under six months in treatment, at six months I wanted to write my will.....keep on going for awhile longer.....and keep your ears and eyes open for new solutions.
In the interim, we should heed Mike's advice and live as healthily as possible.
Don't give up sister....
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Unexp'Ills >>>>>, Hi again,
Lyme Disease is as much clinical diagnoses as it is anything else.
I was CDC negative on my tests,according to Igenex, It still needed to be treeated. I should have had three positives,for CDC,I had two positives,and several indeterminites [ meaning they couldn't rule it out ].
We lost our inusrance,and couldn't afford much,so I did 84 Rocephin IM shots. Yes it was painful. What is more painful is that 3 months worth of shots wasn't enough, it was so difficult to obtain more that we stopped.
I got about 4 and 1/2 months w/ a little more energy,and then was started back downhill again.
Nowadays,I am staying on some herbal supplements,and looking for a different LLMD/ND.
Other one was out of state,I cannot drive,and after a Stroke in his Eye [vein occlusion resulting in rt. eye blindness],
...TXC' is really careful about driving any distance. We may have found someone LL that will help,but we have to wait on finances and weather.
It is still several hours drive so...we'll see...
Oh dear, Im' jabberin' and yappin' away here.
BB shortly ...Silverwolf
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
And Here I am ,again...,
Please keep treating, and looking for other answers as well.
Many diseases seem to have simular symptoms now-a-days. Some may in fact be Lyme Disease etc.
For instance,some folks belive that MS is really Lyme disease. There are other illnesses that may be as well.
Often we are told we have CFIDS [CFS]and/or Fibromyalgia,and it is prolly Lyme.
You may have to try a variety of meds ABX,and herbal supplements,. Dosages may have to be increased or decreased,several times.
Do what you can,for you and your family. I have been treating since my DX in MAy/June '06. Finacial issues have made it tough,for many LD and Co. folks.
I know it's been said..but don't give up!!!If you have a day where all you can do is make it to the restroom,and back to bed or sofa...
At least you wee able to move that much... if I didn't belive that there where better days ahead,I'd be tempted to give up.
We have to believe we have to try,for ourselves,for family too !!!
I'll check back later,remeber,depression is apart of chronic illness [I'm in the Mullygrubs right now myself].Don't let the Naysayers win honey!!!
Love from Silverwolf
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Ticks have many bugs. I found it interesting that Burrascano said in a lecture recently that coinfection with mycoplasma is the worst. Lyme should be renamed something else. Ticks could infect you with six, eight organisms.
I think you need to address the mold in your house.
Posts: 2276 | From united states | Registered: Jun 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I am not a dr but have you considered if it could be complicated by co-infections...
Or other neuro toxins...such as mold,(look for leaks or a musty odor) heavy metals,(there are a few others, including fish in some place in Florida, some species of Caribbean fish, red tide, blue-green algae, etc)
The mold ghru says any neuro toxin can be treated the same in the body. Thus meaning the symptoms and the way the body responds to a foreign thing in the body. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Unexpected,
quote:If It's NOT active Lyme disease, WHAT is it?
Please, read the Neurotoxin Elimination Protocol where you will find the list of most neurotoxins, in order of importance.
But in the meantime, since Dr. K. published this protocol a number of years ago, we now have the the Bionic880 and know to put photons to use to alleviate many problems, and still learn more every day.
When the toxic load gets too high, we get ill.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
" I have been on ABX since May.. NO changes in my symptoms , except for 2 weeks when I was on Tetracycline I was able to get out of bed.. That quickly dissapted.. so I cannot be sure of why that actually happened."
YES is the neurotoxins .in your case I am afraid is that BUG BLO /BART or muco whatever they call it.
Not every one has it and is not BART henseale or quintata. It produces toxins so fast and that is what makes lyme even more agreasive.
If you responded to tetra than you are a candidate for LEVAQUIN.I wonder if you muscle test it it will show that you need it or no.IF yes, than BLO is making you like that .This bug grows exstremly fast.
BUT BE Aware that you will really be in pain.Rifampin could not do the job for me on that bug.LEVAQUIN did.
It probably is a mucoplasma .My llmd says that muco goes same as lyme...so here you go ...you might have it and has same symtoms as lyme.
NEUROTOXINS of the killing , of the bugs itself and of the ones that are still producing are making you like that.TOXINS in spine .YOU NEED TO DETOX , BIG time.
Buy a biotensor and have all binders in the drawers.Start asking questions and you will see that your body will show that you are highly positive and you need large amount for clearing them.
I used to have them , now I have them when I take superdose of the killers....IT IS CRAZY the pain that they cause and shaking .BUT I do not care.I want them dead.I have felt as more deeper I go I have that WALL that was BUILD over time as PLAQUE has been lifted.It has been years that I had lost that feeling .
CMS is a BIGGY on this to get them out and you need to be in it for long time to clear it from the brain.Dr J S says in his book that in no way you put more toxins in your body without drawing the neurotoxins out first...otherwise you create a havoc.
YOU REALLY need a Holistic doctor to help you with detoxing if you can not master yourself .Also there are so many homepathic formulas that you need to help your liver and kidney and lymphatic system to do the job so they do not become overwelmed.
YOU ARE SO TOXIC and antibiotics right now are making you worst..I know how you feel 24/7 and that is horrible.Please detox yourself.
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gemofnj
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Member # 15551
posted
Someone posted a whole list of items to check if your abx has plateaued and/or doesnt appear to be working.
I remember it was like 10 things to consider if there wasnt any improvement/progress in abx.
Does anyone remember what poster or thread that was? The info could be helpful here.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Lots of good advice and comments above. I think that my story might be instructive, so I'd like to share it.
I am sorry to say, that it has taken me OVER two years to see the best results on antibiotics! But I am feeling pretty good much of the time these days, after being completely ill and disabled from untreated late-stage lyme a couple of years ago.
Treatment for late-stage lyme is a leap of faith.
I realize that not everyone would have the faith to continue antibiotic treatment when it can actually take over two years of daily, fairly high-dose treatment to get rid of some of the worst symptoms!
Still, I am very grateful that I listened to my doctor and kept treating. He did say that it could take over two years, and he was right.
I have been tremendously rewarded recently for my leap of faith in continuing treatment, even when I felt awful at the one year and two year mark.
Because my worst neuro symptoms have finally started to really go away and I remember how I used to be -- confident, smart and energetic -- before I got sick.
I am not cured, for sure. And still not 100% all the time. I often feel that I have just cowed the bacteria/protozoa/whatever into submission.
I am still grateful to feel like I am being reborn.
That is my experience with lyme/TBD treatment. I have not done any IV, but will keep that option open for the future if it is needed. I hesitate to write this, because maybe this is just a good couple of weeks?
But, like ILADS, I do believe people get cures or long-term remissions from long-term abx, even if they are seriously ill when they start.
It is not an easy path. You really have to watch your diet and take tons of probiotics. I had many difficult days, weeks and months, especially in the first 18 months of treatment.
It gets easier over time, probably as the bacterial load decreases. If you have only been treating since May and if you have late-stage lyme, you might not be feeling well because you are still in the early stages of treatment.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Thanks so much for the suggestions, replies and links!!!
Lymetoo-- I have though about asking to be put back on.. just to see!
GiGI-- That link did not work.. Is there another one?? I was actually going to try and get in with Dr K, but the wait is VERY long.
ALV-- What is the biotensor you have?? Yes I feel toxic 24/7 for over a year now...
Vermont-lymie-- I hope things keep on looking up for you and thank you for sharing your story!
Silver, feelfit and and if I missed anyone. Thank you for lending your support and advice! It gets really hard and it's nice to have people who understand!
Thank you!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My LLMD said if you don't improve on antibiotics that it is most likely because of Babesia. I too have not seen much improvement and started in May; so I just started treating for Babesia. This is day 5, so we will see.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Do a search on California Lyme.
She had to do 6 months of IV rocephin prior to being able to function minimally.
If my memory is correct (bear with me)
She had Lyme induced dementia.
She is fine now.
There are many others who do not see immediate improvement.
I did on doxy (very beginning), but have been fighting babesia and bartonella too.
Maybe be a time to revisit co-infections.
If you don't get them first, you won't get better.
I hope you have a productive meeting with your LLMD.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hate to break the news but it can take years of abx therapy to see a difference for those who are severely infected. lyme is not an illness that one is able to cure over night
there is no magic bullet
the way to win the war is multi faceted, addressing many things such as:
microbial assault w abx, herbs, anti fungals, etc detox, metals and other enviromental factors.
it takes 2-4 years even if everything is done 100% right which it never is.
those of you who speculate because you do not see a positive response in 3-6 months of abx use that they do not work or are not going to work is simply not true and erroneous.
again, there are many many things that come into play when involving an illness as complex as lyme, and i regret that i did not sufficiently list everything (its very in depth as you all know)
my opinion is to stay on aggressive therapy for a lengthy period, get under the guide of multiple well versed llmds and other specialists who will help you regain your path to wellness.
it will not be through one doctor and one abx regimen for most. it is not fun, and it is not easy, but it is the only way.
speculating as to whether or not just stop abx and hope one gets better is rather ridiculous IMO.
if you are truly sick, and i mean truly, you will have no choice but to take abx or some means of anti microbial drugs/supps/ herbs.
lyme is a disease of time, but i do not believe one can just wait it out.
giving it a rough go with abx or other means of assault is a great way to allow for time for the human immune system to come back online.
i believe after time, yes, abx are not needed and once ALL elements that need to be addressed have been sufficiently changed/rebalanced, THEN, and only then, should one stop the anti microbial assault on the disease/s
please dont misunderstand also, that abx are NO more important than every other face of the illness that has to be addressed.
detox, metals, on and on it goes, are JUST as important if not MORE important because if you stop and think HOW we all got so sick it is not just a simple tick bite, it is a culmination of many things, of years and years of a distressed immune system. the tick bite and /or transmission of lyme and CO is just the straw that broke the camels back.
just as it took time and MANY factors to break many of us down to such a severe state of unwellness it will take the same if not more amount of time and factors to see that we are all rebuilt properly
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Please, read the Neurotoxin Elimination Protocol where you will find the list of most neurotoxins, in order of importance.
But in the meantime, since Dr. K. published this protocol a number of years ago, we now have the the Bionic880 and know to put photons to use to alleviate many problems, and still learn more every day.
When the toxic load gets too high, we get ill.
Take care.
If it's not active Lyme disease, well, couldn't it be a combination of things. Of other infections. Of all sorts of bodily imbalances?
Why single out neurotoxins? How can you do so, so confidently?
And generally speaking, how do you all know what is causing your symptoms for sure?
I've been in the Lyme boat. I've had symptoms consistent with Lyme disease for 25+ years. Was diagnosed 4y ago. I'm good now. Wanted abx, abx and more abx, this Babs med and that Babs med, and so on. And I got it. In loads. It helped only minimally.
In retrospect, it was a reckless treatment.
You all talk about like Lyme disease is something that can be treated aggressively and long-term with abx.
You focus on all these symptoms and reactions to drugs as if your body was some kind of machine that responds linearly and predictably when you throw some drugs at it.
I ask you again, how do you really really know what the underlying cause of your symptoms are?
Just because you test positive to Lyme and/or coinfections, don't you think that the fact that you got sick in the first place from these infections is a sign that you're immune system is already compromised somehow? That you may already have other, possibly not tick-borne, infections simmering? Or maybe you have other bodily imbalances (thyroid comes up here quite often.)
Infection is extremely complicated. It affects us all in different ways. And it's quite possible to be infected with Bb without having a single symptom. Just like it's possible to be infected with Bb and living a life in hell.
The level of toxicity of various chemicals, including neurotoxins, is only a small picture of the whole deal.
On a higher system level, you really ought to be asking yourselves. What's the difference between those who have symptoms and those who don't? What's the explanation why not two of us have the same symptoms?
Tough to answer. But I would highlight two things: 1) The state of their immune systems is different, and 2) The total infectious load and infectious mix of pathogens is different (and unknown).
So what can you do about the above with the greatest confidence that will have the most impact?
Let's see.
Option 1. You could start taking high doses of abx and other drugs in hope your body can handle it and in hope that you're targeting the right bugs in the right order and sufficiently aggressive? I know how this works. And there's 1000's of stories on Lymenet about the efficiency of this approach.
Option 2. You could start addressing your immune system which would impact all infections across the board. And once you've corrected the major bodily shortcomings, and you're still ill, then perhaps it would make sense to go see an LLMD. Because now you're more likely to respond to treatment as your body will probably respond more predictably and linearly to drugs being that you have now brought yourself into a much better shape.
But in all likelyhood, most people will pick option 1. It's the easy choice. It's the choice we're brought up to believe in in the western modern world of healthcare. Cause afterall our bodies are so weak and incapable of healing themselves. It's the bugs fault we're sick. And it's the doctors responsibility to heal us. We have the right to go ahead and submit ourselves to fumes, alum cookware, eat whatever we feel like, exercise what?, weigh whatever the scale shows, ingest nutrition-less GM foods loaded with abx, hormones, pesticides, MSG, HFCS, etc, drink either pH-unbalanced water or tap water full of fluoride and chlorine, expose ourselves to all sorts of stress from work, family and TV, taking meds for the smallest reasons, etc.
And then we wonder why we get sick. Or actually we probably are not even wondering, are we? Because being sick is so commonplace these days. Is there any of you who are NOT expecting to get sick this year with something? If so, you're a minority and I can't wait to hear your story.
But a healthy individual is not supposed to be good friends with the pharmacy staff. Healthy people don't get sick. Anyone ever heard something this preposterous? Truly healthy people do not get sick. At least not seriously. They don't even get cancer, or heart disease, or diabetes. Yes, really!
It is so sad that people today have this drug centric view of healing. They have been brainwashed into thinking they are victims of disease. That they themselves have no power to combat disease. That it is their doctor and the healthcare system in general that is in charge of their health.
You all know the western world is getting sicker every day. Ask yourselves why that is. Then go do something about it. Because you can!!
Noone will ever present to you on a platter the way to optimal health. Can you guess why? It's because there would be no money in it for them. Because all you need to get healthy is to use your God give bean. To open up your mind and think objectively out of the box. You need to seek, SEEK my friends, the information you need to help yourself.
The world is a mine field. Full of stuff people want to sell you. Everyone claims they want to help you. Do you believe them? It's exceptionally rare that someone really really wants to help you. Noone has the motivation to do so. People who you think are "helping" you, such as doctors, have other things on their minds. Such as getting you out of their office in 5mins. Such as treating you on an assembly line. Such as conforming to old-fashioned out-dated and often politically swayed medical beliefs. Such as promoting drug companies products. And so on.
Seek my friends. You'll get some info here on Lymenet. But Lymenet is only a fraction of what you need to help cure yourself from Lyme disease and its friends. Seek all over the place.
Check out Dr. Klingharts website from Gigi above.
Check out mercola.com.
Check out "metabolic typing".
Check out the "blood type diet".
Check out "metabolic imbalances".
Check out "is milk bad for you".
Etc....
I'm not promoting any of the above. But they are good places to gather info and move on from.
Good luck to you all.
Michael [/qb][/QUOTE]
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
so besides the fact that milk is bad, what did YOU do michael to attain wellness?
i agree that abx are only a small part of the picture, as i stated above...
if you would fill us in on what you did it would be of help i should think...
you stated that you took tons of abx, drugs, ect ect and they did very little to aid you..
what did aid you then?
i agree neurotoxins, ect is not a correct assesment.
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'd like to hear your answer too Michael. You bring up great points.
I see no way in thw world one can definitively say they know the cause of someone's illness. Endless ideas get tossed around here. I too believe it's not as easy as just IDing an antibody and saying, yep that's it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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What else? Well, it could well still be an infection. And/or the stress on the liver.
--------------
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others.
- see top tabs all across the top for research, handbook, etc.
Not all symptoms are from infections. Some very serious problems can arise from the stress on the Cytochrome P-450 liver detox pathway in treating chronic infections:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
What else? Well, it could well still be an infection. Infections can be extremely underestimated. We tend to think like some of the IDSA doctors after a while. We think it should be over by now. But, it may not be - according to research below. Learning more about how infections work will help us find the keys.
And/or the stress on the liver.
--------------
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others.
- see top tabs all across the top for research, handbook, etc.
Not all symptoms are from infections. Some very serious problems can arise from the stress on the Cytochrome P-450 liver detox pathway in treating chronic infections:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
posted
MB-- Since May 2008--- no difference at all, no herx
my symptoms have been consistently the same since my illness started over a year ago when my daughter was born. I am truly losing hope and losing the will to fight something when I don't even know what it truly is or HOW to help it. I have been in bed since this started. I cannot function and my days are spent in bed or on the couch. My body is weak and tired and boggled down with a plethora of symptoms that keep my body unable to function.
I am getting extremely frustrated, scared and not sure exactly what I should do.
I feel like I just dump abx down my throat for no reason. I dont feel them working as I always feel exactly the same as I did the day, week, month and year before.
It is obvious that I am very ill... it is not obvious what started this sudden illness...
I only leave my house for doctors appt's, short car rides and once in a very RARE while to sit at the beach. I can't play with my children, take them out, enjoy their lives, or be a mom to them, I haven't cooked a dinner in 2 years, been able to successfully walk into a store, or drive since last October. I cannot stand in the shower, or get in and out of the tub by myself. All orof a sudden being on the computer makes me feel extremely ill. I have constant pressure in my head 24/7 since January 2007, I am off balance and cannot walk straight, I cannot walk without feeling like I am on a boat or elevator.. I am in pain, weak and fed up.
I know I am not the only ONE going through this, but something deep inside of me tells me there something else wrong, and I don't know what it is... I feel like I am running out of time. This is more than denial, this is a strong feeling in my heart that something is missing in this puzzle... hence all the posts and cries for help.
I am sick of not knowing the answer, or how to fix my own body that i no longer own or have control over.
November 07 till end of April 08-- Marshall Protocol May 08- Start Doxy June 08- drop doxy,Start Tetracycline and Zith July 08- Omnicef, Plaquenil, Zith, August 08-- Septra, Zith, PLaquenil, Mepron September--Septra, zith, PLaq, Mepron October-- Septra, Zith, PLaq, Mepron, Bicillin, Yesterday, Switch out Septra for Rifampin,
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Angelica
Unregistered
posted
Unexpected I met someone in the waiting room of a LLMD. She did not know if she had LD or MS but she said she could not get out of bed until she tried bee therapy. She did not say what kind of bee therapy but when I met her she was definitely doing much better than she had been.
I so hope you get your answers and your health back. Try not to give up hope.
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Alv
Unregistered
posted
Angelica bee therapy has been used for treating LYME.
I would definitly involved MUSCLE testing and biofeedback on your case unexspectedillnes NO QUESTION that is the only way out for you.
That is how I found out what was wrong with me and the list that QXCI showed WAS SO LONG.....your body need suport before thrughing more antibiotics in your body.
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posted
ALv, I remember back when I first got sick.. I had a phone consultation with a homeopath and she did in fact use the QXCI on me. It was over the phone and I had to put the phone on my stomach for a half hour... LYME did not come up. Toxins, hormonal imbalances and something else did come up. Her homeopathy did nothing to help. She never sent me a printout of that though.
I wish there was someone close to me who could muscle test me.
Alv, I will be reading your PM's and getting back to you.
Angelica-- I was reading about bee venom... something I may think about
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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I hesitate stating what exactly I did and I don't want to go into it in too much detail. Cause it is the end result of adopting a drastically different approach to health and healthcare.
So in this "two step" process to regaining my health, the "second" step, i.e. what I "did", to regain health is as follows.
I eat wholesome organic and free range foods, I drink quality water, I get sufficient sleep, I take some very specific supplements, I address my bodily imbalances (I have enough medical equipment to get enough objective information about myself), I routinely detox (e.g chlorella once every day), I get fresh air and sunshine, and finally I use various techniques for stress relief and to adopt a positive attitude.
I do not drink pasteurized milk, nor do I use fluoridated tootpaste, and there are 100's of other things that I either don't do and that I do do but which may all be considered against the "norm".
There are no doctors nor px drugs in this solution with the exception of a dentist to remove amalgam fillings.
The "first" step in my treatment plan however is much more drastic and difficult to do. Basically, I totally let go of my longtime ingrown beliefs in the modern healthcare system. It is the single most important thing you can do for your health. After you make this step, everything will sort of fall in place all by itself.
We must realize that the western healthcare system is first and foremost a business that exists to treat symptoms for the purpose of making money. That is its basic cornerstone. TO TREAT SYMPTOMS. Not to cure. Curing would be the end of their business. MDs are an integrated, though in most cases involuntary, part of this business.
LLMDs, even though well meaning, are also only treating symptoms. True, they will claim they are treating infections because they believe the infections are what's causing the symptoms. But in most cases it is so much more complicated than that, that in the end even LLMDs are really only treating symptoms too. Like regular MDs they never address the underlying problem.
Thus, both groups of MDs promulgate the drug centric medical approach...and which is why all of us are talking "Symptom A disappeared when I took drug B but then symptom C showed up which went away when I took drug D..."
It's the neverending story when targeting symptoms with drugs.
It's the rare occasion where abx, retalin, diabetes drugs, cholesterol lowering drugs, etc need to be applied. Very rare indeed.
I believe the only way you'll truly come to terms with and understand your health is if you personally make the decision to take control of your own health. Unless you do you can't control and understand what goes on with your body. Sure you can visit your doctor once a year. Just make sure that you are the one in charge.
So basically,
DON'T DO DRUGS..JUST LIVE A HEALTHY WHOLESOME LIFE whatever that means for you in particular. Again, to find out you must investigate. You must seek. I can't tell you. I hope you understand. Not trying to do a riddle here.
Just to give you an example of why I can't be specific. I need loads of nutrient rich protein in my foods for example. You may need loads of carbs or fat. Certain meats do me well. Other meats don't.
The solution is in the approach to healthcare. You need to figure out what works for you in terms of foods, supplements, water, and so on.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
UnexpectedIlls,
Most homeopathic physicians or naturopathic physicians (NDs) who are trained in homeopathic would not evaluate as per the method you described. Most would need to see you in person for the best evaluation.
Just as with any sort of specialty, some are better than others.
Sorry you had a bad experience.
While not about homeopathy, these two books may be of interest if you've not seen them yet:
One of the hardest things for so many of us is....is it really lyme?
For some of us, it's how long have I had this???
I won't go too far into my story in this post, but I struggled for a really long time about the diagnosis simply because of the mainstream and controversy. While testing is unreliable, the positive tests helped ease my mind. While many will tell me there is no such thing as CD57, that mine was low, consistent with lyme also added a piece to the puzzle. I really got to the complete end of my rope before finally getting diagnosed. As bad as it gets. Then I got diagnosed with neuroborrelia.
When I started antibiotics, I did herx. This was also a key for me.
You say you have not herxed and I'd be curious about this.
I think it's important that you settle for yourself what exactly you are dealing with. I can say it did take two years of as much antibiotics I could tolerate before I saw a difference. I went from bedridden and nearly comatose for well over a year to mainly housebound now. I improved a great deal on antibiotics, very excruciatingly slowly.
So that's to encourage you that if you do have lyme disease, keep going, but be true to your body too. Listen to your body. Antibiotics truly saved my life but they absolutely did not cure me and it was a real torture chamber for a long time. I still have many challenges, but these challenges, I do not believe are active infection (although I can't know for certain).
I don't have the energy to deal with the mycoplasma/bart thing and I know I still have some babesia but overall I think I am dealng with a post infectious problem like trigeminal neuralgia along with some other genetic problems like hypercoagulation as well as for whatever reason, chronic fatigue and weakness and well, the list does go on.
I am posting this to let you know that if it is the lyme, active lyme, which the rash pictures really do look like bartonella, the antibiotics will be helpful. But in some cases they don't cure. Eventually it becomes about making the difficult choice to stop antibiotics. At least for me. I reached a plateau and so I had to get real with it.
Like I said, I was as bad as it gets, a completely different person, it was absolutely scary. There's no question I have late stage lyme. There is a question as to whether I got some new kind of infection to cause such gross encephalopathy and resultant ills. You have a completely different story.
If you have a deep in your heart hunch about something, follow it. But be sure it really is a heart hunch, sometimes these things are deceptive because we do get desperate and reach out for answers and get a bunch of different answers, then we get confused.
My motto has become, we are all different and the best practice is to listen to ourselves and our treating physicians (if we trust them). Although, I know it is inevitable to doubt yourself just because of the kind of thing this is.
People think it is some game. It is not. It is as real as cancer. If you have lyme, you need antibacterials. The question becomes, how long? I'm sure, for example, that the treatment caused some additional problems I didn't have before, left some things I had before the crazy neuroborrelia, and absolutely took away the worst of it, which was due to encephalopathy, anoxia, etc from the hypercoagulation.
It is so complicated and I'm just tired of researching. I'd rather go color a mandala at this point. But I wasn't always at this point so, we're all in different stages. But when I was entirely bedridden, completely beside myself, I thought it would always be like that. I am so glad to learn, it's not.
I have moved on to doing accupuncture and Chinese herbs for this stage of my treatment and still take treximet for migrains or trigeminal flares as needed.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
A lot of people have already given you a lot of great information, and given your record, and knowing you see Dr. H, I'm inclined to just say "Stay the course." If there is one thing I've learned with these conditions, it's a matter of trial and error and patience. None of which are easily swallowed.
Plus, knowing what I know now, I would have invested money in a number of laboratories for testing for Lyme and co-infections. I wouldn't just use Igenex, I would use as many others as I could afford, to try to cross reference the findings. I would then cross reference any possible cross-reactions with specialty testing for viral infections that could mimic whatever bands on the Western Blot were in doubt.
I would investigate mold, multiple chemicals, biotoxins, biofilms, all co-infections (parasites, viral, bacterial, etc), the geno-type autoimmune markers (Lyme can trigger cascades of inflammatory responses). I would investigate everything I possibly could, and do each one, one at a time to avoid being overwhelmed.
Ask Lymenet to list all the things a patient with Lyme Disease should test for, including muscle, hormone, scans, immunity etc. Different patients will have good ideas about particular tests that haven't been done. Some of these can reveal more information.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
if you're unsure whether it's bugs or neurotoxins, you may want to consider getting the HLA-DR test done by labcorp. This is genetic test that Dr. Shoemaker uses to determine whether you're susceptible to lyme, MRSA, mold, or "multisusceptible" meaning everything. In the latter case, which I believe is most ppl that takesyears to get "better", neurotoxin buildup can make recovery slow and painful. Of course, that doesn't mean you should get off abx, just that they'll take longer to show results if and only if we add in all the supportive measures to clear out myco- and neurotoxins while we attack the bugs.
Mold avoidance, as others have mentioned is best. Taking CSM or natural binders is crucial whether you're able or unable to move out/remediate.
I have the multisusceptible genetic makeup, and I know I have a mycotoxin problem in addition to lyme. We tend to herx a lot more than other genotypes too when we take antibiotics knowing we have bacterial issues. Like Gigi has alluded to, I hope the bionic treatment will be able to help with myco- and neurotoxin detox in addition to killing lyme.
If you don't have either the "lyme" or "multisusceptible" genotype, the antibiotics should be working just fine, in which case I would go so far to say your main issue isn't bacterial if you still haven't improved AT ALL at the 6-month mark. I would put my money on you having one of the genotypes, so you may consider getting that test done (it's covered by insurance) to put your mind at ease.
-joey
Posts: 713 | From Los Angeles | Registered: Oct 2007
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quote:Originally posted by METALLlC BLUE: I would investigate mold, multiple chemicals, biotoxins, biofilms, all co-infections (parasites, viral, bacterial, etc), the geno-type autoimmune markers (Lyme can trigger cascades of inflammatory responses). I would investigate everything I possibly could, and do each one, one at a time to avoid being overwhelmed.
And systemic yeast since Shandy has said she can't get off sugar.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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I agree with Alv. I think muscle-testing is the best way for you to figure out the big picture. Not a phone consultation but an in-person visit. Hopefully you can find someone in the area
-joey
Posts: 713 | From Los Angeles | Registered: Oct 2007
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All my viral tests are negative except a low titre on EBV IgG
The only markers seem to be inflammatory/autoimmune that show up like RF/CRP/and had a positive ANA (negative now) and high WBC's & Neutrophils ( normal now) It seems I have had more blood taken out of me, I didnt think it was possible. Everytime I have my bloodwork done it's 10 vials or more..
we've checked my homrones and all are ok except low DHEA and VITD.
There are some abnormalities but what is causing them, and why am I so ill and no one can tell me why?? Why do I have over 50 symptoms?? Why can I not function at all for over a year now? Why did it happen in my pregnancy? Why are my symptoms consistent and never change just in intesity? What the hell would cause such horrible symptoms like this?? NO answer... I know
NO one knows... It is more than scary for me and my family and we dont possibly know what else to do. Most of my family has given up on me.. it seems they did the moment I was no longer "Shandy".
I feel like I am basically a mystery... a very sick one at that
I wish I did have someone nearby to muscle test me....
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Dawnee
Unregistered
posted
I know that I have LOTS of MS symptoms... in fact, it was the main thing my neuro suspected because I have L'hermitte's sign which is almost exclusive to MS. Brain and then entire spine MRI's were done... only one teeny tiny lesion found front temporal convexity in the brain. Nothing, basically. So it's not "MS"... since I don't have any lesions to speak of.
I had an ANA test done in January and it came back negative.
Then I got tested and came back CDC + from three different labs for Lyme Disease. Bart and Babs are negative so far, but I do have Mycoplasma as well.
After 5 months of abx suddenly I get a + ANA. But why would it be negative in January before finding my LLMD and then in 8 months later positive? I think it's just the Lyme!
I don't think I have Lupus, I don't think I have MS, ... I think it all stems from the complexities of Lyme Disease.
I have gotten better on abx, so I know that they do SOMETHING helpful in this disease... I don't feel like I HAVE to have a 3 hour nap every day anymore. I rarely nap at all and for me...thats HUGE!
But I also have worse joint pain since starting the abx. My neuro symptoms are improving, even my muscle twitches are fewer and farer between.
posted
the HLA-DR4 is different from the HLA-DR typing. The CPT code under labcorp is 012542.
There is no such thing as a "negative" HLA-DR typing. Instead, it will list a bunch of number that are to be decrypted into genotypes. The appendix of Mold Warriors tells you how to do this. Here is Shoemaker's chart on genotypes:
-joey
Posts: 713 | From Los Angeles | Registered: Oct 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: May 08- Start Doxy June 08- drop doxy,Start Tetracycline and Zith July 08- Omnicef, Plaquenil, Zith, August 08-- Septra, Zith, PLaquenil, Mepron September--Septra, zith, PLaq, Mepron October-- Septra, Zith, PLaq, Mepron, Bicillin, Yesterday, Switch out Septra for Rifampin,
I don't even count the Marshall Protocol. The failure rate has been exceedingly high and none of the physicians I've heard from have given me even a remote ounce of confidence in it. And Doxy by itself in a case of dormant infection that was obviously over a year old, is nothing. It's like tossing a grain of sand at a stone wall hoping to break through it.
Zithromax, I have no faith in, it's worthless orally in my opinion against Lyme Disease unless combined with Amantadine and Plaquenil, and I haven't even heard of much success with Amantadine. Plaquenil however has shown a lot of potential when combined with Zith.
Tetracycline is of some value, but it was by itself except for the Zith, and that would mean it would take a long long time to show any effect. Basically, also worthless unless taken for 6-8 months in a straight cycle, which it wasn't.
However, Doxycycline and Tetracycline taken for the time frame you used, would kill even Chronic Ehrlichia, if you had it. So that's one down.
So really, in my opinion you've only really been treating Lyme with a combination routine since July, and that would be an incomplete routine since it's evident by your symptoms that you have co-infections and Lyme Disease, and the co-infections weren't really treated until later. Co-infections should always be treated alongside Lyme, or before Lyme, not after -- else progress will take forever -- or at least it'll feel like it. Therefore you wouldn't see much in the way of results with an incomplete routine.
So it wasn't until August that the appropriate routine was actually put into place (In my opinion).
The Zithromax has value when Plaquenil is added. It's much more useful than by itself when treating Lyme. The Septra is a great Anti-bartonella/BLO treatment, Mepron and Zithromax combined with Plaquenil make for a strong anti-babesia protocol.
So, since August, you've been on a serious routine of value. In other words, it is still far too early to see strong results, especially if different combinations of a heavy treatment need to be rotated over months. The Rifampin was a good switch from Septra and the Bicillin is a strong addition.
A lot of patients don't see results for many many months. I didn't actually start getting well until 3 1/2 years into treatment. If you watched Under Our Skin, the Park Ranger noted the same thing. He didn't really see much until into his 3rd year. Some people, it takes a long time.
If you want to confirm the diagnosis, run more testing at different labs which specialize in Lyme and co-infections. Using Igenex alone may not be enough for you. I tested at 4 different labs and was able to cross reference the differences and I saw a big pattern emerge.
Fry Labs, MDL, Specialty Labs, Central Florida etc. There are a lot of them. You can also get a second opinion if you wish. I believe Dr. H near Boston does Muscle Testing and she's very competent in a wide range of conditions, including Lyme and associated diseases.
That's my opinion. You've just begun.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Maybe you're someone who needs IV antibiotics. I don't see that listed there. I know it's hard to imagine if orals don't work why would you go the route of IV with all of its headaches. But it might be what you need to really move things along.
Posts: 984 | From San Diego | Registered: Nov 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:
Icon 1 posted October 20, 2008 08:57 PM Profile for Parisa Send New Private Message Edit/Delete Post Reply With Quote Shandy,
Maybe you're someone who needs IV antibiotics. I don't see that listed there. I know it's hard to imagine if orals don't work why would you go the route of IV with all of its headaches. But it might be what you need to really move things along.
I was just going to say that. Another thing that hasn't been used yet, but I expect to see soon in your routine is Tindizole or Flagyl. The way your routine is evolving, it's intentional. I can see the transitioning. It was done intentionally to gauge tolerance. Things were added systematically.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I wish I did have someone nearby to muscle test me....
I'm sure you do. Call your local health food store and see who they recommend.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
michael-
your ideas are novel but unfortunately the data just isnt out there to support your claims.
it really is of no matter though, you are well now i believe so all is the same.
just living healthy and drinking good water, sleeping, and avoiding milk, ect, as you suggested, is not going to do much for a severely ill person with lyme...
for one, insomnia is a huge part of lyme, so there goes the sleep thing. the water, yeah, its a good idea, and the milk, makes no sense to me.
one who has these infections is not being treated symptomatically by a llmd w abx. the abx kill bacteria. bacterial existance is not a symptom. so abx that relieve symptoms doesnt make sense either.
again, it all sounds rather novel but most here who readily apply themselves to regaining their health already incorporate most things you mentioned as pre-requisites to abx therapy.
they are good life style choices, but wont cure an illness such as this.
i am glad you are well and found your path to health, but id wager you would not be in the place you are now without all those abxs. no way to tell since you took them
and shandy-
as metallic said, and i need not comment further, you havent been in treatment nearly long enough.
get the testing in more depth from multiple labs, and attack the illness, whatever it is, as best you can.
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
quote: Just a note to those in Texas....She (goldings) no longer treats lyme long term. Sold out to the IDSA.
I wish I knew that in September! I went to her to get a differential diagnosis bnetween LD ans M.S.
Not only does she not treat Lyme, she doesn't even test for it because "people don't believe it."
She refused to test me for Lyme even though I had all the symptoms and even she thought I had no symptoms for M.S.
Plus she thinks you have to live in an endemic area to get it and TX isn't one of those areas.
Furthermore, after I told her I saw a tick at my mom's house, she said that if you saw the tick, it wasn't the kind that give you Lyme. Only ticks too small to see carry Lyme.
She is no longer a member of ILADS. She should not be on on any referral list for Lyme treatment or diagnosis.
Her only contribution to the Lyme debacle is the papaer Keeble quoted.
Lastly, she has the bedside manner of an ice cube.
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Jamie, I agree she's a real douche bag. I've had patients call her office just to ask questions, and she was rude to all of them. He office staff was difficult and rude too.
I wonder what it feels like to sell your soul and have to wake up every morning and look at yourself in the mirror. How does she do it?
There are some true cowards in this world.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Originally posted by djf2005: your ideas are novel but unfortunately the data just isnt out there to support your claims.
My ideas are not novel. It's mostly going back to basic wholesome living, like many indigenous people do. Like animals do. They don't get sick.
Second, people who live like me do not get sick. I estimate, based on the 100s of people that I've talked to, that less than 5% of the population live a life like I do. Could be as low as 1%. It's unlikely you'll see any data on this group of people for obvious reasons....some of which I've already stated.
quote:Originally posted by djf2005: just living healthy and drinking good water, sleeping, and avoiding milk, ect, as you suggested, is not going to do much for a severely ill person with lyme... [/QB]
You're right. It will take time to iradicate Lyme disease once it has a stronghold on you. As I mentioned, I do believe abx is useful in taking the initial brunt off an infection. But after that most of the folks here just continue taking abx bouncing from doc to doc, from abx to abx, etc.
So you tell me, where's your evidence that abx works?
Trust me. I've been in your boat. I've read many papers by Dr. Fallon, Dr. Harris, Dr. Burroscano, Dr. Marshall, Dr. Schuemaker, Dr. Jernigan, etc. I know what kind of evidence exists.
There's no cures. Most of these studies report on findings along the lines of "2/3 of the patients reported significant cognitive improvement 3 months after stopping treatment. 6 months later 1/5 of the patients relapsed." Noone ever gets fully cured in any of these studies. It may seem they do because the study stops after 6months. With the exception of in vitro studies where we are able to kill Bb.
Yes, I believe that in some cases abx does manage to cure someone. But that is a rare exception and I have no doubt that that person that happens to is also metabolically balanced.
quote:Originally posted by djf2005: for one, insomnia is a huge part of lyme, so there goes the sleep thing. the water, yeah, its a good idea, and the milk, makes no sense to me. [/QB]
No there goes NOT the sleep thing. It's all part of letting go of your beliefs and what others are telling you and what you believe is correct.
I took me almost a year before I learned this important lessons about disease. DO NOT BECOME THE DISEASE. It's not you. It's you against Bb. Do not let it get to you. There's a huge mental aspect to disease. Again, you can call this novel. But it's not. It's just being rational and fostering positive thinking and a survival mentality.
There are tons of tricks to use to motivate sleep such as drinking "bedtime" tea a few hours beforehand, doing something mentally relaxing beforehand, sleep in an absolute quiet and dark room, use EFT technique, taking certain supplements depending on your deficiencies, etc...all natural. Again I've been there.
I couldn't sleep either. But even while I was taking abx I separately addressed this issue with the above means (after briefly trying Elavil and Ambien...what a joke that was.) And it worked for me. Not perfectly. But I no longer layed awake most of the night, and I was reasonably rested when I woke up.
You should look into the milk thing. I do not have the time to go through all the details. It's been on major news channels over time. Of course, noone will make sure the truth comes out the broad population because there's no money to be had in doing so.
quote:Originally posted by djf2005: again, it all sounds rather novel but most here who readily apply themselves to regaining their health already incorporate most things you mentioned as pre-requisites to abx therapy. [/QB]
I sincerely doubt that. I didn't. My LLMDs (three of them...very well known NY LLMDs) did not tell me what to eat, do, detox, etc. So I doubt any of your LLMDs is telling you more than "eat and drink healthy and get some exercise, ok? see you in one month". Is any of them even mentioning your probably low temperature? I doubt it. How about the pH level of you bodily fluids? I doubt it. Your pulse and heart rate? Probably. Your respiratory rate? I doubt it.
Well all these things should tell a knowledgable doctor a lot about your general health. But it is totally ignored. Instead focus is on subjective symptoms, that is SUBJECTIVE meaning not OBJECTIVE and not really measurable, as well as on the microscopic level, namely killing bacteria, and not just Bb but all bacteria, incl in your gut.
Please show me the evidence that the abx method is working to cure people?
If you're so confident that abx can kill Bb, it should be possible to totally get rid of Bb, and coinfections as well, right? So why isn't this happening to more than maybe a handful of you all?
You talk about Bb cyst form, Bb wrapping itself in the body's own proteins, Bb shying away from blood and hiding in tissue, Bb sensing Rocephin and going into hiding, etc.
This is not a normal bacteria. It's a life form. You must make the environment miserable for Bb and friends. Then you might win.
Abx can not accomplish that because Bb can detect it and hide and it weakens the host too thus encouraging other illnesses to develop, chemical unbalances and new symptoms that have nothing to do with Lyme.
Lyme striken people at large have unrealistic faith in drugs. Some seem to acknowledge what a formidable contender Bb and friends is. Yet, they go right ahead and get treated like it was a long lasting strep infection. What it tells me is that they don't really understanding what a life form like Bb is capable of doing to survive.
Good luck to you all.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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quote: Jamie, I agree she's a real douche bag. I've had patients call her office just to ask questions, and she was rude to all of them. Her office staff was difficult and rude too.
Tee hee. You said it, not me.
She did decide to test me for lupus (I have no symptoms of that) and parvovirus antibodies. But not Lyme, NO! No one ever gets Lyme! No! Not here! No such thing as Lyme!
It was over eight weeks ago and no one from her office has called me with the results of those tests.
I wish I'd never gone to see her.
She told a pregnant Lyme patient that she didn't need to take abx while pregnant. The baby ended up with Lyme and Lyme-induced autism. Can you say "totally incompetent?"
posted
I'm a completely different story, so I'll add it for comparism.
I probably have had lyme for decades--I'd guess 1970 at the latest. It slowly progressed in a relapse/remitting style. The worse it got (and not getting any help from the medical field), the more I turned to eating right, researching and incorperating herbs and supplements to promote health.
It finally got really bad, menopause being the trigger for the final worsening before I found a LLMD. I was given the things I couldn't do myself: hormonal support, ABX, and pain meds. Also testing, which mainly came back negative, except for the CD57 (got a 50).
I took the ABX, and my symptoms got worse and then stayed the same for a year. Except, I showed signs of Babs, and ended up on mepron for 5 months.
I also am chelating for mercury and lead, both found to be very high. The mercury is under control now, and I'm still chelating for lead.
I have to avoid gluten, all wheat products, and sugar, which includes starchy food that turns to sugar in the body.
After many months of no progress, it was found that I was undermedicated for pain, and therefore not getting enough healing sleep. After a couple of months of better pain management, I suddenly "walked thru a door and saw myself"--I actually looked in the mirror and recognised myself as being back. I estimated that I was at 80% back to my normal for a month.
So, after one year of ABX, and at least 50 billion probiotics 2 hours after each dose, I saw improvement.
I still need to do the cyst busting phase, so I know more illness/symptoms are ahead for me. I asked to hold off treatment until the early winter is over. I have Seasonally Affected Disorder really bad. I've been fighting a virus for 2 weeks now, and probably will not feel well until sometime in January.
I'm taking Samento and Cumanda thru this time, so hopefully will just hold my own until I get thru this SAD period. The viral illness is being managed by my LLMD with herbs.
So, one point I wanted to make was that for one year, minus a month, I didn't feel one bit better--was very much worse than ever before. I was practically bedridden. After a few months, new symptoms cropped up that indicated babesia.
I know each one is different, and treatment will be unique to the individual.
For me, what helped me get back to 80% for that month before SAD set in: Eating right. Sleeping deep, healing sleep. The right mix of ABX for killing lyme. Mepron, when it was called for. Management for viral infection, when needed. Lots of good water. Herbs, and supplements, some I'd been taking, and others recommended by the doctor. Hormonal support. Enduring a year of unending misery that didn't seem to be accomplishing anything.
I know this is just one story, but feel it emphasizes the point that we're all different, treatment will be individualzed, and we all need to be patient and proactive at the same time.
I hope you find progress in your search for better health.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Thank you all so much for your thoughts! I feel like I am getting certain people upset, so I will not come back to this thread. I truly appreciate all of your help. I will be looking into a lot of the things mentioned for me. I guess with my son having lyme, and a few others in my family I shouldn't be in denial... My son has responded to abx since day one... I never have. He is almost completely well after 6 months of abx... Its amazing the progress he has made!
Many of you have been patient with my questioning and I appreciate that. It has been very hard to come to grips with this and understand the complexities of everything.. I get confused very quickly as of late.
Metallic-- I will be sending you a PM... I got the one you sent me, and Thank you!! I guess the MP wouldn't count seeing as it was a horrible failure for me and actually made me much worse.
Thanks all!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Thank you all so much for your thoughts! I feel like I am getting certain people upset, so I will not come back to this thread. I truly appreciate all of your help.
Certain people are upset?
quote: I will be looking into a lot of the things mentioned for me. I guess with my son having lyme, and a few others in my family I shouldn't be in denial... My son has responded to abx since day one... I never have. He is almost completely well after 6 months of abx... Its amazing the progress he has made!
Kids usually do progress extremely fast with the right routine.
quote: Many of you have been patient with my questioning and I appreciate that. It has been very hard to come to grips with this and understand the complexities of everything.. I get confused very quickly as of late.
It's ok, it's a hard process. I'm the type of guy that has to see it to believe it, but as time passes I've come to understand that once I've bumped up against the edge of where science meets the unknown, I've been willing to make educated guesstimates.
quote: Metallic-- I will be sending you a PM... I got the one you sent me, and Thank you!! I guess the MP wouldn't count seeing as it was a horrible failure for me and actually made me much worse.
I think you're on the right track. The reason being is that you're systematically working through things. It wouldn't matter how many doctors you see, you'll go through a process when you're dealing with a complex chronic illness -- whatever it may be. You'll get where you're going though, just stay alive, don't throw in the towel.
Did you read my post to the young man who said he felt he was dying from Lyme Disease? Read my post in that thread, it might give you some ideas about why I stayed the course.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Don't be discouraged. You are in the right place to ask questions on your road to recovery.
Everyone does have a different set of bugs attacking their immune system. You have to research, and embrace the protocol you feel comfortable with, go all the way, and evaluate the results.
My friends who tell me they are 95% better, (they won't brag 100% as they know lyme never leaves on its own, and can relapse any time, but they feel 100% today), say they got there by being open to living a healthy lifestyle, and addressed nutritional changes, diet, eliminated alcohol, sugar, white flour. Also started with ABX to get rid of co-nfections, then addressed cell wall deficient, neuro lyme with hard core abx and probiotics to get rid of the candida...big time . Then did a mojor body detox, and started Rife machine. After a long time of major herx...they now have it under control. This took major committment. I'm not saying they didit the right way...they just chose a way to start, and continued through it all!
Not saying you need to do abx, or rife. But it appears that you need to follow a protocol to the limit, and be open to change when that is not working for you. The most successful people I speak with, seem to all move to natural type treatments, as the ABX only take you so far. My neighbors who are still on ABX, get too sick when they go off, and they are frightened to stop again. They actually have a life when they are on ABX. Some are not wiling to go any further. So to each their own.
The bionic 880 shows great promise. It almost seems too good to be true to us who have tried so many dificult protocols...but I'm ready to give it a try. I do believe in alternative treatments.
For me, my health improved dramatically when I began drinking my homemade juice from 7-9 colored veggie each morning for breakfast.(just blend it whole in a highspeed blender and drink)
My energy has increased and I have just begun working out again. I have also been addressing candida in my blood and intestinal health along with abx for lyme. I feel toxic and can't wait to get off the abx, but I feel I have gone so far, that I want to get to the point where I feel it nolonger is working. The abx got rid of my co-infections.
I still have high ANA, Lupus antibodies, and brain lesions. I am trying to work on eliminating those items. My llmd has had much success with patients with simular problems. then will go 100% natural for the rest of my life! I'm hoping to get this under control before my Bionic 880 treatment. I thought I'd just share this with you to give you hope.
There's so many ways to work it.
Do your research, live healthy, and pray for wisdom from above to guide you as you choose your protocol. Find a lyme friend you connect with to listen and guide you.
There are many educated people here who want to help you. We all have the same quest. Don't jump into anything you have not researched enough to be comfortable doing.
And lastly...keep a positive attitude, as you are one of the lucky ones, who recognizes your symptoms, and is smart enough to get help! I believe your journey will be a blessing to your family and others when you look back as a healthy person and are able to share your advice. You'll be back on stage before you know it!
Blessings and healing to you.. lymeparfait
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Angelica
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lymeparfait what veggies are you juicing each day?
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
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michael
everything you mentioned IS a pre requisite to abx therapy for people who are well informed whether YOU did or do any of the above mentioned things or not.
now to respond to your thread...
lets live like animals. great idea. animals dont get sick do they? or DO they? animals are dying off by the truckload. what is the major factor for the extinction of many speciaes of different animals? DISEASE. ok. so now that we wont live like animals, we can move on..
less than 5% of the population lives as you do? why? i cant imagine why?
as far as the evidence that abx work, i personally dont have them but if you refute the evidence from the nations leading physicians that treat the illness then nothing i can say really will change your opinion anyway...
true abx do not CURE anyone, they are not designed to so how would they do somethiing that was not intended? they are meant to kill or suppress certain bacterial infections allowing the human immune system to regain ground eventually... ultimately it is US who will win the war, not abx. they are a tool.
moving on..
thank you for telling me the disease does not have to become us, i get that. unfortunately no amount of eft is going to help me or many people sleep. insomnia is a medical condition caused by a variety of factors one of which can be disease process and until addressed adequately with such things as ABX or other anti microbial means one's sleep AND OTHER SYMPTOMS will not just magically fall back in line... if your insomnia was alleviated with some tea, than let me suggest it was not that severe to begin with. all of your suggestions are again, novel, but again, when a disease process is in swing, dark rooms and eft tapping doesnt make brain infections go away
i actually will look into the milk thing, although i am not sure where to look. i have always drank a lot of milk so this does concern me. again, i do not believe the use or refraining from the consumption of milk will make one severely sick with lyme become well or not.
if you know much about infectious disease process it is actually affected VERY little by diet, ect. diet plays a role with fungals and yeast but infectious disease in general...nope
you mention that your well known NY llmds did not tell you how to eat, detox, ect ect.
i dont know which "well" known drs you saw but the ones ive seen in NY stress detox immensely.. sounds like you are rather bitter because of the lack of instruction you were given but that is not my and many other's experience from the drs you are inferring.
as far as your comments regarding temp, ph, and the like...
the low temp was explained to me on my first visit. dr B (THE dr b) explains to everyone usually initially in his lectures what signifigance the temp thing has... the PH thing is because your body is under assault and one's heart and pulse rate are the same reason....
moving on..
again you ask for evidence that abx CURES people and again no one has said or will say that anything can cure lyme. abx, THUS FAR, are BY FAR, the most effective way of dealing with these infections. again you say its a very small part of your illness healing process, yet you would not be without them i guarantee it. perhaps the bionic will prove to be more effective than abx, and i sincerely am hoping it is..
again, you ask if abx can totally remove Bb from one's body as well as other infections. the answer is a NO to your rhetorical questions. we all know from the little research that IS available that Bb is able to hide and reproduce at a rate far greater than abx are able to eliminate. it doesnt mean that they arent an effective way to restore someone's ability to let their immune system regain control...
you refer to us on here as "you all" as if the lot of us that takes abx and are GETTING WELL i might add are on some different side of the fence.
like somehow you stumbled upon the cure yourself, and if only all us drug happy people would listen to your non milk drinking ways we could all get well too is just rather laughable.
again id like to mention that you think abx are no aid to many but you have taken them and you are well. remove the other things you do and i can guarantee they would not have worked without them. no, they are not a cure. but yes, they are the best weve got for now.
if you are so convinced that your methodology for rebuilding your body such as herbal sleeping teas and not drinking milk are what will enable one's body to rebuild, than why dont you compile a set of guidelines on this thread so we can share in your knowledge. i say this in all seriousness.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
quote:Originally posted by djf2005: if you are so convinced that your methodology for rebuilding your body such as herbal sleeping teas and not drinking milk are what will enable one's body to rebuild, than why dont you compile a set of guidelines on this thread so we can share in your knowledge. i say this in all seriousness.
I was tempted to address everything you said since most of it you interpreted incorrectly...probably because of your beliefs...or should I say because you ARE on the other side of the fence, the drug side of the fence.
I'll just address a couple of points and then that's it from me.
I am not feeling bitter. I think this is because I usually try to find the positive in the negative experiences I have. But I am feeling disappointed, and even fearful, at the narrowmindedness of most LLMDs and MDs in general. At the same time I'm greatful for having been through the Lyme mill because it has brought clarity to my mind.
I've been on both sides of the fence. You have only been on one side. Four years ago I was singing your song too.
I'm not going to give you a laundry list of what I did. I've said enough to get someone even mildly interested in "my" approach moving forward. And that is exactly what I'm hoping to achieve. I would even go so far as to say that giving a laundry list would defeat the purpose of the approach I'm proposing.
So diet doesn't affect infection? Diet strongly affects the immune system, does it not? Thus, won't you be able to fight off an infection better by eating a proper diet, drinking good water, getting enough sleep, etc?
It's the big picture that matters here. It's a comprehensive holistic solution. You're dissecting it like a typical western MD would.
I don't think I said abx is useless. I'm saying continuous abx usage is reckless.
I'm glad you got well on the drugs you took. Really.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Hubby and I have been on both sides of the fence so to speak.
My personal opinion is that nutrition absolutely impacts infection and healing. There is lots of scientific research that says that borrelia robs magnesium and also phosphatidylcholine and that babesia robs iron. These are just a few of the obvious implications of tickborne infections.
The indirect impacts are often severe as well -- nutritionally oriented docs know that the sicker a person is the higher their requirement for Vitamin C. Infection and inflammation increase a person's need for protein as well.
The standard american diet (SAD) is often lacking in magnesium to begin with plus it is often deficient in the good fats which are needed to stop inflammation and help heal the brain and nerves. Taking antibiotics do disrupt the normal G.I. flora and can lead to a deficiency in B12 and vitamins A & D.
I have mentioned before that the one supplement that hubby has remained on for 7 years now is CoQ10 -- I feel that this has helped him avoid some of the severe brain fog others have experienced. He has had bloodwork which proved it lowered his level of lipid peroxides which means that it is protecting his brain cells from free radical damage.
As for sleep hubby tried both prescription sleep meds and psychotropic drugs -- neither worked for him. What has worked is supplements of 5HTP and l-tryptophan -- but only if he also takes resveratrol to block the alternate pathway which produces quinolinic acid in the presence of brain inflammation. He also needs p5p (pyridoxal 5 phosphate -- activated B6) with this as well. Plus some melatonin and the occasional herbal tea -- valerian, catnip, hops etc.
His bloodwork shows that his serotonin metabolites and amino acid levels were in a more normal range by taking the supplements than when he tried the med route.
Michael -- not all LLMD's are the same. Hubby's LLMD has a nutrition degree as well. His herbalist also has a degree in nutrition.
I do not believe that nutrition alone will cure tickborne infections or put them into remission though. I am uncertain whether herbal treatments by themselves are strong enough to eradicate these infections once they get a foothold in the brain and nervous system.
Hubby has done both oral and IV meds and herbs alone and in combo with meds. Plus many other types of treatment.
Michael, I wonder if your approach put the borrelia into a cyst form. It is my understanding that is what Buhner in the Healing Lyme book was attempting to do.
In my opinion the hardest part of treating these diseases is knowing which infections a person actually has. What works for Lyme won't work for Babesia or Bartonella etc. And viruses and mycoplasma complicate the picture even further.
The important thing to remember is you are not what you eat, but what you absorb. Food, supplements, drugs or herbs won't do anyone any good if they can't be utilized by the body.
If you have parasites they will always get fed first. That is why "starving the bugs" won't work -- you will die or suffer irreparable nerve damage or go crazy if you are deficient in the wrong B vitamins for long enough.
And that is why food itself is not enough. Once you actually test deficient on a bloodtest for a vitamin or mineral it is next to impossible to get enough by diet alone to correct the imbalance.
As far as healthy people not getting sick -- this is not 100% accurate. For example, the American Indians were almost wiped out by smallpox.
If a person has no exposure to a particular virus or bacteria in some cases their initial exposure can cause their immune system to actually go into hyperdrive and kills them even faster bacause their immune system was so effective. I am pretty sure that Bird Flu is a similar type of reaction.
As for the milk issue -- I know a lot about this because my parents always had their own milk cow until a few years ago. They also raise a very large garden and can and freeze eveything and grow their own beef cattle -- no growth hormones etc. Plus they have venison and wild turkey and squirrel etc. They are probably in the 5 % Michael mentioned.
Even though my dad is generally healthy as a horse a few years ago he got pneumonia and ignored it and ended up with a heart arrythmia. He did go to a general M.D. and even a cardiologist (one appointment each) -- decided to not take any heart meds but to treat naturally with extra garlic, plus hawthorne, CoQ10, taurine etc. He is doing fine.
Funny you mentioned Dr J in Kansas -- he told hubby that he had sent samples of transfer factor to the old Bowen Lab in Fl and they found borrelia in those samples.
If borrelia can survive all the processing involved in manufacturing transfer factor from colostrum then obviously pasteurizing milk may not eradicate brucellosis which is one of the selling points for pasteurization. Of course shelf life is the real story.
My moral is -- eat as healthy as you can -- organic is best. Take supplements if you can afford them. And treat your tickborne infections with herbs or antibiotics. Keep reading and learning as much as you can about a healthy lifestyle. Any illness is stressful and tickborne infections can affect your hormones both directly and indirectly -- don't ignore your symptoms whatever they are.
As Michael said -- become your own health advocate. Hubby has had psych docs try to convince him his symptoms were not due to physical illness or that he was getting better and didn't know it. Not everyone follows the same path in illness or health, but there is hope and help as long as you continue seeking.
In my opnion, it is not a question of who is right and who is wrong -- it is more a question of having the right tools to get the job done.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote:Originally posted by seibertneurolyme: There is lots of scientific research that says that borrelia robs magnesium and also phosphatidylcholine and that babesia robs iron. These are just a few of the obvious implications of tickborne infections.
Qualitatively we know this to be true. But quantitatively we do not know how much is robbed and how much needs to be supplemented. Too much Mag and Iron supplementation will do you more harm than good. It's a balancing act. IMO, it's better to under supplement than over supplement...though with some exceptions.
quote:Originally posted by seibertneurolyme: Michael -- not all LLMD's are the same. Hubby's LLMD has a nutrition degree as well. His herbalist also has a degree in nutrition.
I agree. Not all are the same. I think your docs are the exception though. If they are in the NY, NJ, CT region please let me know. I'm still looking for a good holistic MD/ND.
quote:Originally posted by seibertneurolyme: I do not believe that nutrition alone will cure tickborne infections or put them into remission though.
I'm not so sure either. That is, once you're let them get a stronghold of your body. So under these conditions it does make some sense to use abx and drugs. I never said diet could cure in this case. Abx and drugs can bring over the hump and what I do suspect is that diet, healthy living and supplements can take you the rest of the way
quote:Originally posted by seibertneurolyme: Michael, I wonder if your approach put the borrelia into a cyst form. It is my understanding that is what Buhner in the Healing Lyme book was attempting to do.
Very interesting point. That has dawned on me as well. And I think it's quite likely that I still have Bb in my body, but as you say in dormant form. IMO, once you get Bb I think it's not unlikely that it's there to stay for a long time. But I do think you can eventually kill them all. We know they don't like a healthy body with a 98.6F body temp, with no heavy metals, with well oxygenated and slightly alkaline blood, and so on. It can only survive for so long.
Btw I don't believe I ever said that I no longer have Bb infection. But I do like to think I don't have Lyme disease anymore. IMO, Lyme disease is a manifestation of a certain class of symptoms. I do not have these symptoms anymore. Thus I don't have the disease either. Bb may still be in me.
quote:Originally posted by seibertneurolyme: In my opinion the hardest part of treating these diseases is knowing which infections a person actually has. What works for Lyme won't work for Babesia or Bartonella etc. And viruses and mycoplasma complicate the picture even further.
I agree. And it is exactly on this front that addressing your underlying foundational health will have the most impact. Because it affects the one thing that will help you fight ANY disease, and maybe even iradicate some of them by itself...namely, your immune system.
This may sound arrogant but I suspect people in general do not understand what health is. It is so misunderstood. Part of the reason is the way media and adverticing is distorting the terms "diet" and "health".
One key example of this is the "got milk?" propaganda add campaign that's been running for years and which the gullible public is lapping up like, well, like milk. People think drinking milk is considered healthy. It could not be further from the truth. Plainly, any pasteurized milk product, and pasteurized dairy in general, is bad for you. No studies ever showed it's good for you, as far as I know. Same with multivitamins. No study to back this up. It's just presumed to be true and these "myths" are now part of our culture.
Who do you think I paying for the "got milk?" add campaign? Some organization whose top priority is the health of the public? No, no. This campaign are sponsored by these guys http://www.milkpep.org/ and who's sponsored by the milk produces and who is not the least interested in our health. The driving force behind this campaign is of course money. And so is the driving force behind pasteurization as this affects shelf life, which is the only positive effect of pasteurization. I do not want to sound like John McCain, but "my friends" I recommend you to look into the milk thing on your own. It is a shocking, fascinating and entertaining topic.
The only milk that's good for you is raw milk which you can only buy in a handful of states. Though it's pretty easy to buy raw cheese products, and which I highly recommend.
quote:Originally posted by seibertneurolyme: And that is why food itself is not enough. Once you actually test deficient on a bloodtest for a vitamin or mineral it is next to impossible to get enough by diet alone to correct the imbalance.
Exactly. And thus the need to take a few targeted supplements and small proper doses. I'm all for that and do it myself. For example, I take kelp for iodine, chlorella or cod oil for VitD away from summer months and CoQ10.
quote:Originally posted by seibertneurolyme: As far as healthy people not getting sick -- this is not 100% accurate. For example, the American Indians were almost wiped out by smallpox.
I knew someone would bring this up. Someone earlier also mentioned, "animals are dying in truckloads".
Of course a perfectly healthy person/animal can get sick from a pathogen they have never been exposed to before. And obviously the diseases I'm referring to are the common cold, the flu, cancer, diabetes, heart disease, weight problems, etc. The diseases that are crippling society today.
Even in perfect health you can get the common cold and the flu. I'm not in perfect health. But I think I am close. And I do get the cold and flu and stomach bugs. But noone would know. The symptoms are mild. And it's gone in 1-2 days. I rarely get a fever, though once I got suddenly sick with some URI and temp rose rapidly to ~103F. Amazingly, 24 hours later symptoms and fever was gone. The immune system really kicked a$$, or so I'd like to think.
Not even my kids are getting sick anymore. They used to get colds that would last for weeks and one of the kids would have sinusitis for months. Not anymore.
My wife is still getting sick. But she also doesn't really believe what I'm telling her about diet, water, milk, etc. Though, she is mostly supportive of letting me implement it on the kids.
quote:Originally posted by seibertneurolyme: As for the milk issue -- I know a lot about this because my parents always had their own milk cow until a few years ago. They also raise a very large garden and can and freeze eveything and grow their own beef cattle -- no growth hormones etc. Plus they have venison and wild turkey and squirrel etc. They are probably in the 5 % Michael mentioned.
Even though my dad is generally healthy as a horse a few years ago he got pneumonia and ignored it and ended up with a heart arrythmia. He did go to a general M.D. and even a cardiologist (one appointment each) -- decided to not take any heart meds but to treat naturally with extra garlic, plus hawthorne, CoQ10, taurine etc. He is doing fine.
Wonderful story. But of course no proof that living healthy is the key to beating disease. But it sure is yet another data point...;-) And there's plenty of similar data points "out there".
And now I will really try to shut up. Even I am getting tired of hearing myself.
Good luck to us all.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Shandy, Just one comment, I clearly remember you having a herx a while back! I know you say you haven't herxed, but I thought for sure you had one or two herxes back in the beginning,....I remember you posting about them.
And you DID have some good breakthroughs; some days where the clouds lifted. This is all part of a very slow but steady process.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I too remember them, and videos she posted. It's easy forget the process is moving. It moves the way the continents drift.
You probably don't make the connection between you're so sick. Herxheimer reactions are hard to note the sicker the patient, because they're already so sick.
Good days are also hard to note too because you go from being extremely sick, to a little less ill than that, which is still bad. Then, that day passes and you go back to being as ill as you were before.
I'll bet that's what is happening.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I herxed since started treatment on MARCH 2007 non stop and I was herxing and beeing sick at the same time.YES 21 months in TOTAL.And SYMTOMATIC for 7 straight years.
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
michael-
i am not on either side of the fence, i come from both sides of the fence actually. my own protocol is a mix of RX drugs and many other means in which to get well.
im not going to dissect your whole response because i dont really care to be honest.
we can beat around the bush endlessly but at the end of the day it doesnt matter.
again you say all those abx didnt do much for you but how can you tell where you would be if you hasnt taken them? you cant.
btw i am not well on abx, i am at about 50-60% which for me is amazing.
i continue to progress on abx, BUT let me be clear, as i stated, MY protocol is NO WHERE near JUST abx, so maybe thats where the confusion lies.... it addresses MANY aspects of this illness as i suggested shandy do in the beginning of this thread. i need not go through the list again of what we all know we need to do to get well.
my personal protocol can be viewed on my blog listed below.
soon to be added....NO milk
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
IgG IgeneX Positive-CDC Negative
18+ 28+ 31++ 41++ 45++ 34 IND 39 IND
IgM-NEGATIVE all across the board 41 IND
CD57=42
all other blood work ALL over the place. you have lyme.
UnexpectedIlls Frequent Contributor Member # 15144
posted 25 June, 2008 12:29 PM -------------------------------------------------------------------------------- Yeah it does stink...
For me, it starts maybe 5 days before my period until a few days into my period. I get more dizzy and all my symptoms flare pretty badly. Pretty much just a big flare of all of my symptoms that I have... which are alot.
I hope with more treatmnent this will become less!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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24/7 and that is horrible.Please detox yourself.
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Thank you!
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