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.
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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
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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
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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: 96239 | 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:
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24/7 and that is horrible.Please detox yourself.
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Thank you!
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