Topic: If It's NOT active Lyme disease, WHAT is it?
METALLlC BLUE
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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
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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: 96239 | From Texas | Registered: Feb 2001
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djf2005
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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
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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: 563 | From New Mexico, USA | Registered: May 2007
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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
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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
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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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