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A thread to discuss lyme disease*  This thread currently has 170,516 views. Print Print Thread
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spinnakertech
Thursday, November 17, 2011, 5:35pm Report to Moderator Report to Moderator
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Quoted from JJR
I would imagine it's got something to do with the fact that the cases of Lyme Disease are skyrocketing.


I agree.  Now that people are more empowered through the internet to research their own medical issues when doctors have told them for years that there is no hope and no cure to their ailments, Lyme Disease is finally starting to get the attention it needs.  Of course, it will take a political change in tides to make a real difference; but maybe that will happen through an uprising of the population as more and morereally sick people are realizing that they have a well-known bacterial infection that can be treated with antibiotics.

The number of Lyme Disease cases has risen sharply over the past few years and I expect that trend to continue dramatically.  I'm afraid it will become harder to find qualified LLMD's to provide treatment for the current and upcoming surge of Lyme cases.
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TJ
Thursday, November 17, 2011, 6:55pm Report to Moderator Report to Moderator

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Quoted from TJ
My appointment is tomorrow.  I'm excited and nervous.  I hope he sees reason and has done his homework!
It could have been worse, but could have been better, too.  He didn't do his homework.   He is still somewhat of the mind that ADD, depression, bipolar, anxiety, and fibromyalgia are diseases (rather than syndromes as I described above).  He wasn't willing to make the diagnosis based on clinical symptoms because he thought these "conditions" explained my symptoms.  [On the other hand, he did give me some unexpected insight on the mental/emotional conditions: there have been studies examining the brain function of children (via MRI) that have shown physical changes in the brains of children subject to abuse or otherwise "unsafe" home environments , and my childhood home was not an emotionally safe place.]

On the plus side, he didn't disregard the possibility that it's Lyme disease.  He said he is going to try to find a Lyme specialist he can get me in with before my insurance runs out.  The University of Utah (with a medical school) is right up in SLC, so there should be someone there who can help me, even if they aren't a LLMD.  I hope that the Genoma Security and antibiotics have been enough to help me develop some antibodies against Lyme that will show up on whatever tests they do (if I can get in to see someone soon enough, that is).

Meanwhile, I got my unemployment papers showing that I will get about 15% of my former salary as a benefit.  This really frustrates me.  In deciding what my benefit should be, they considered Q3 and Q4 of 2010, and Q1 and Q2 of 2011 to determine my "income".  The problem is that I started work in June (end of Q2), and I earned more money in Q3 of 2011 than I did in the previous four quarters combined.
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Goldie
Thursday, November 17, 2011, 7:59pm Report to Moderator Report to Moderator

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I am somewhat frustrated that sufferers still have to follow the good 'name' of a doctor rather then be able to follow a group of tests that will then be followed by some given treatment.  There can not be that many protocols to hit or miss?  

Yes everyone can be treated individually for this or that, but I would bet that there are no more then 100 ways to deal with 100 issues, parasites and all.  I can not believe that specialists don't know enough about issues by now --- that they can not openly SHARE the info.   I mean even NEEDING to ask WHICH type of test is needed, or how something will determine some answers or treatment -- This just seems really counter productive.. Some test could be done any where.... or at least I think so..

There has to be a list to follow or a view even for clients to review.  Knowledge is important.... where is it being taught or info exchanged?  I am frustrated, and I am not even sick but I fear the out doors enough that I would build enclosures for kids to play in, and avoid the woods, next year when there is to be on epidemic year for new LYME infections.  

I mean even waiting for years to get really sick is a sick idea in the first place.  There must at least be certain tests that could be streamlined to save on furthering 'infection' time.  

Is there not a 'INTERNET' place where clients- sick people- can get such comparison info? .. even if they had to do their own reporting one item at a time? I feel for those who are sick even now and don't even know it.  The enormous cost of loss in employment alone should demand such a response..   I am sorry if I vent here, where you are suffering, but is there not a place to make such a difference?  and can not healthy people help? how would one go about it?


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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TJ
Thursday, November 17, 2011, 8:15pm Report to Moderator Report to Moderator

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Kyosha Nim
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Oh, I almost forgot: I restarted my supplements last night.  I still spent 10 hours in bed last night, but I'm feeling better today: particularly, I'm thinking more clearly, and I will need that to deal with the unemployment paperwork and writing an appeal.
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JJR
Thursday, November 17, 2011, 8:51pm Report to Moderator Report to Moderator

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Quoted from Goldie
I am somewhat frustrated that sufferers still have to follow the good 'name' of a doctor rather then be able to follow a group of tests that will then be followed by some given treatment.  There can not be that many protocols to hit or miss?  

Yes everyone can be treated individually for this or that, but I would bet that there are no more then 100 ways to deal with 100 issues, parasites and all.  I can not believe that specialists don't know enough about issues by now --- that they can not openly SHARE the info.   I mean even NEEDING to ask WHICH type of test is needed, or how something will determine some answers or treatment -- This just seems really counter productive.. Some test could be done any where.... or at least I think so..

There has to be a list to follow or a view even for clients to review.  Knowledge is important.... where is it being taught or info exchanged?  I am frustrated, and I am not even sick but I fear the out doors enough that I would build enclosures for kids to play in, and avoid the woods, next year when there is to be on epidemic year for new LYME infections.  

I mean even waiting for years to get really sick is a sick idea in the first place.  There must at least be certain tests that could be streamlined to save on furthering 'infection' time.  

Is there not a 'INTERNET' place where clients- sick people- can get such comparison info? .. even if they had to do their own reporting one item at a time? I feel for those who are sick even now and don't even know it.  The enormous cost of loss in employment alone should demand such a response..   I am sorry if I vent here, where you are suffering, but is there not a place to make such a difference?  and can not healthy people help? how would one go about it?


One of the frustrations of myself and others is that I suspected it early on, got tested, and came back negative a couple different times.   So it wasn't like I wasn't trying.  But the "normal" tests doctors run just don't do it right I guess.  Why is Igenex the only one doing it right?  And why do we have to pay out of pocket for a test that is done properly, and then insurance will cover ones that don't work.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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nowishow
Thursday, November 17, 2011, 9:58pm Report to Moderator Report to Moderator

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Quoted from 11080


What she can do is get herself on a waiting list for cancellations.  That works very well.


This is what I did with my doctor as well. It worked well for me.


"Anxiety is the gap between now and then"

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nowishow
Thursday, November 17, 2011, 10:09pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl
I'm just wondering how I could go about getting tested for lyme's or co-infections. Bear in mind that I haven't been healthy enough to work in years, and receive SSI for Fibromyalgia. The SSI is supposed to cover just my own living expenses, but with an unemployed ex husband, I'm not getting any child support, so that money needs to support them as well. Thank G-d for my mom's support- without *not having to pay rent* and being able to borrow money for true emergencies (food stamps ran out for the month and I need groceries, the car needs a repair I can't afford, etc) I don't know how I'd  be able to manage at all. Money is tight for her too right now, and I don't want to take advantage of her generosity.


I know what you mean. If I wasn't in a critical condition I wouldn't have paid for all the tests that I got and I'd still wonder what was wrong with me. I got a lot of help from friends and family thank goodness, but it's so expensive to pay for all this yourself. It's really a terrible situation when you can't afford medical care.

Are you taking anything that helps with detox? That would be a basic thing you could do to help yourself. It is the biggest piece of the healing in my opinion.

Chlorella
Apple Pectin
Vitamin C
Alpha Lipoic Acid
Omega Oils - I like hemp

If you have pain in the liver area, you might want to try milk thistle

If you have pain in the spleen area, you might want to try Red Root

At least you're eating right and that helps a lot.  


"Anxiety is the gap between now and then"

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Goldie
Thursday, November 17, 2011, 10:47pm Report to Moderator Report to Moderator

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Quoted Text
One of the frustrations of myself and others is that I suspected it early on, got tested, and came back negative a couple different times.   So it wasn't like I wasn't trying.  But the "normal" tests doctors run just don't do it right I guess.  Why is Igenex the only one doing it right?  And why do we have to pay out of pocket for a test that is done properly, and then insurance will cover ones that don't work.


So could I ask, here or in another thread..   would you share in specifics , maybe even time and laboratory.. sharing all the failures and then eventually the BINGO?  would you share so that others could know the cost or coverage -- or that new people could at least EXPEDITE certain test's that brought you closer to proper treatment?  

What test did you take that did nothing - for knowledge or diagnosis?

What tests's did you take to rule out  this or that.. ?

What Test did you take that showed you had this or that? excluding or including Lyme.. ?


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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JJR
Thursday, November 17, 2011, 11:12pm Report to Moderator Report to Moderator

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Quoted from Goldie


So could I ask, here or in another thread..   would you share in specifics , maybe even time and laboratory.. sharing all the failures and then eventually the BINGO?  would you share so that others could know the cost or coverage -- or that new people could at least EXPEDITE certain test's that brought you closer to proper treatment?  

What test did you take that did nothing - for knowledge or diagnosis?

What tests's did you take to rule out  this or that.. ?

What Test did you take that showed you had this or that? excluding or including Lyme.. ?


It would be super long.  I could, and if others want I will.  It would take me a while to do it though.  I'd have to pull out my notes and such and even then I'd probably miss something.  And putting a price on it would be very difficult.  But it's significant.  I'll give you an overview in a nutshell:

5 years old.  Bit by tick.  Someone removed it with Gasoline.  It was on my head.
1999 or so. Up north Camping.  I believe I was bit, not sure, had a weird rash on my knee.  Looked kind of like a circular bruise with it being clear in the middle and I had never seen anything like that before.  Was sick for a week or two after that.  Got tested at a Doctors office for lymes and it came back negative.
Not long after that I developed a heart arrhythmia that comes and goes.
2006 October.  Digestion crash.  Could not eat.  Lost 20 pounds in one month.  Have been losing ever since.  Went to regular docs, got all kinds of testing, including lymes.  Nothing.  High BP.  It's in my head.  Starting looking for new doctor.
Chiro did some tests.  H.Pylori positive.  Yeast too.
and it goes on and on and on from there.
ND told me I had lymes.  But I had so much other junk going on, it wasn't top of my list to look into.  Plus, he was an ND.  No blood test.  Biofeedback.
Got hooked up with Holistic doctor that deals a lot with autistic children and chronic problems. Lots of tests with him.  Digestion, acetylation, food allergies. Lots of problems found.  
Last fall went to mayo clinic in Jacksonville.  got a full work up for a week.  Most significant was I failed neurological testing and came back and got diagnosed with POTS by my cardiologist.  
This spring my Holistic doctor muscle tested me for lymes and told me according to them I have it.  And started treating me with homeopath.  That made it better and pulled me out of a bad spot.  

But I am in no way out of the woods.  I'm still trying to figure out what to do.  I've had a rough two weeks here.  But that's not uncommon.  For the last 4 years I've ended up at the ER and admitted one year at this time.  All within a week of November 7 every year.  

Right now I'm going to start counseling to see if that helps too.  Father was an alcoholic.  Maybe something buried I can't get rid of.  I struggle with fear and anxiety and insecurity and love according to some people.  So....

Then, I have to figure out what the best course is to deal with the lymes.  I'm not sure yet. I'm just not 100% sure there is a particular protocol that works.  My aunt is from up north and was talking to my Mom the other day.  My mom said she had a laundry list of people she knew that got lymes and some got better, some never did, and none are really ever the same.  She said, "You know he'll never be the same".  She's kind of a crass woman and my Mom was anything but encouraged.  I was encouraged because it shows why I feel as lousy as I do.  Or at least shows how it can make such a huge impact on someone.  As it is me.  But my point is, I'm just not sure which way to go with it.  Go to an LLMD.  Stay with my current doc.  Do both.  Shoot myself.  Which I'm not going to do.  I feel like a baby starting out life again having to take each step overcoming my fears, anxiety's, questions, worries.  Etc.  

But God is good.  And he's holding my family close.  

I can easily say we've spent over 30K on all this.  That much I know.  But it's more than likely more than that.  

And then there was my sons health problems.  That's another long drama.  But had an impact on my health too I believe.  




The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Goldie
Friday, November 18, 2011, 2:31am Report to Moderator Report to Moderator

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Sam Dan
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I thank you for that enumeration

.. I wish you and others would enumerate, because then at least other people could avoid going on the merry go round.  
Maybe those who come here early in misery could save some cash they will need later.  
I just wish there was at least ONE test that would be correct..

Bio- body-energy testing can work, but it is a different kind of science, and will most likely not get the best treatments soon enough.. It takes a brave Doctor to follow through on treating Lyme.  

for me a data base program would always be a better answer then not.... I do thank you for the time you took..THANKS


  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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spinnakertech
Friday, November 18, 2011, 3:38am Report to Moderator Report to Moderator
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Some people I've talked with have spent $50k on treatment.  These people mostly were on IV antibiotics for several months after having tried orals for a while.  What's funny is that not one of them complained about the money because they got better.  I also am not complaining because I'd rather spend the money on getting my life back than on anything else.

I have found some ways to cut costs with my IV abx and I expect to spend about $30k to $35k on treatment, even with 7 months of IV antibiotics.  This includes doctors appointments, home health nursing care, cost of drugs, cost of supplements and  cost of supplies to maintain my IV line and administer the drugs.  I put as much as possible on credit cards, including doctor's costs, home health nursing care, supplements, supplies, and much of my shopping expenses at the grocery store and drug store to reserve my cash.

Fortunately for me, I was employed full-time before I started treatment and went out on Short-Term Disability, which covered 6 months of treatment at 80% of my salary.  For the seventh month, I may have to return to work or my Long-Term Disability might kick in.  I think Long-Term Disability will probably kick in so that I can finish the IV part of my treatment.  There will still be a maintenance period of taking oral abx a few times per month.  I should be able to work during that time without much difficulty.

But I've definitely turned the corner on this disease.  I am in my fifth month and I can list out many symptoms that have completely disappeared.  There are more and more symptoms that disappear every two weeks or so.  I am very optimistic that I will be healthy again and able to work.  Then I can focus on paying off the credit cards.  The interest rate on my credit cards is between 0% (for another six months) and 7.99% so it's not so bad.

I know for a lot of people, they get financial help from their friends and families.  I am thinking that when I'm healthy again, I'd like to start a non-profit organization to raise money and help people pay for this treatment.

Until about 2007, health insurance companies regularly paid for many months of IV antibiotic treatment for Lyme Disease patients.  But politics got in the way and a bunch of doctors (some rheumatologists, not infectious disease specialists) published articles saying that long-term antibiotic use was not scientifically proven to get rid of Lyme Disease and they characterized the treatment as experimental.  The insurance compaines jumped all over these published reports to start denying claims for long-term IV antibiotic use for Lyme Disease calling it experimental treatment.  They now will only pay for the first 30 days, which they did in my case.

As doctors cure more and more patients with long-term antibiotics, I'm hoping insurance companies will be forced to start paying agin.  In the meantime, it is the insurance companies, not patients or other doctors, who are the ones filing lawsuits against LLMDs to try to run them out of business.  It is a huge political problem, which is just fed by the difficulty in diagnosing the disease.

So, I'll get off of my soap box and focus on getting better.  I don't have the luxury of getting angry right now.  I just have to heal.  Later I'll get angry enough to try to do something about it.  Right now, I'm just grateful for doctors like Dr. Jemsek who is truly helping me to get better.
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TJ
Friday, November 18, 2011, 5:01am Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from 11080
Some people I've talked with have spent $50k on treatment.  These people mostly were on IV antibiotics for several months after having tried orals for a while.  What's funny is that not one of them complained about the money because they got better.  I also am not complaining because I'd rather spend the money on getting my life back than on anything else.

I have found some ways to cut costs with my IV abx and I expect to spend about $30k to $35k on treatment, even with 7 months of IV antibiotics.
What do you do if you don't have money to spare?  That is my catch 22.  I don't have the money, I can't get it unless I work, I don't know how long I can work, and right now I'm out of work.  I'd been managing up until I got laid off, but could I have kept it up indefinitely?  I don't know.  I'd like to think I could have, but then I wonder how the treatment would affect me, plus I wasn't earning enough to pay for specialists and IV antibiotics out of pocket.  I could afford my regular general practitioner, and I could afford orals (generics at least), but if that wasn't effective enough, what then?
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Goldie
Friday, November 18, 2011, 3:10pm Report to Moderator Report to Moderator

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Sam Dan
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spinnakertech....  THANK YOU SO MUCH..

The great cost of this treatment is one area where one can have opinions .(I had been misdiagnosed for many years and even more years mis-treated with ineffective treatments).

Yet the one concern I seem to come back to is the high cost of WAITING to get the diagnosis.  I still have not seen anyone here having A NAME for the first or last TEST you all took to find out what is really going on.. A name of a test... or accumulation of test names.

I am understanding that there might be 10 or twenty different ones, and some may come from one symptom to the next SYMPTOM, and then eventually someone putting them all together.. but there has to be a connecting thread of TESTS you all are going trough.. reg meds or Nd's and the like.....

The frustration by some who are in pain and suffer greatly and then see one doctor or another, or a specialist of this or that.. does it not finally come down to one set of Tests and possibly one set of lets say antibiotics or some other form of treatment.

NOT wanting to change the discussion from medical tests to diet.. expecting BTD is always helpful, how far into your LYME DIAGNOSIS did you start BTD eating?  did you eat BTD before getting sick? or after you where sick with LYME already? Is this question even important?  How much has diet made a difference to the LYME and finally LYME long term doses of antibiotics??  

Quoted Text
What do you do if you don't have money to spare?  


That is why I am asking the questions here, hoping to shorten that infection time, by looking at 'cutting out' all the waisted time while waiting, waiting, and waiting to get worse instead of getting what you need.      ===   I mean we as humans don't make cancer patients WAIT until they get sicker!  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ruthiegirl
Friday, November 18, 2011, 3:27pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from nowishow

Are you taking anything that helps with detox? That would be a basic thing you could do to help yourself. It is the biggest piece of the healing in my opinion.

Chlorella
Apple Pectin
Vitamin C
Alpha Lipoic Acid
Omega Oils - I like hemp

If you have pain in the liver area, you might want to try milk thistle

If you have pain in the spleen area, you might want to try Red Root

At least you're eating right and that helps a lot.  


I'm not noticing any pain in the liver or spleen area; when I get fibro-flares, I tend to get the most pain in the neck and shoulders, along with headaches and all-over muscle aches.

I'm not taking chlorella, althought that's a supplement I've been considering. Apple is an avoid, so apple pectin would be a poor choice. Most commercial vitamin C supplements are corn-derived, but I do drink rosehip tea daily (and eat the softened rose hips.)

For supplemental oils, I take black currant seed oil, and I usually eat the reccomended portion of fish each week. I've compared DD1's dose of fish oil with the package of sardines, and a can of sardines has as much EPA as 2 days' worth of her supplements (or 4 days' worth of the amount reccomended on the bottle.) The fish oil I currently have in the house for DD1 includes anchovy oil, which I won't take because anchovies are an avoid for me (but neutral for her.)


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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spinnakertech
Friday, November 18, 2011, 4:14pm Report to Moderator Report to Moderator
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Quoted from Goldie

Yet the one concern I seem to come back to is the high cost of WAITING to get the diagnosis.  I still have not seen anyone here having A NAME for the first or last TEST you all took to find out what is really going on.. A name of a test... or accumulation of test names.

I am understanding that there might be 10 or twenty different ones, and some may come from one symptom to the next SYMPTOM, and then eventually someone putting them all together.. but there has to be a connecting thread of TESTS you all are going trough.. reg meds or Nd's and the like.....

The frustration by some who are in pain and suffer greatly and then see one doctor or another, or a specialist of this or that.. does it not finally come down to one set of Tests and possibly one set of lets say antibiotics or some other form of treatment.

NOT wanting to change the discussion from medical tests to diet.. expecting BTD is always helpful, how far into your LYME DIAGNOSIS did you start BTD eating?  did you eat BTD before getting sick? or after you where sick with LYME already? Is this question even important?  How much has diet made a difference to the LYME and finally LYME long term doses of antibiotics??  



That is why I am asking the questions here, hoping to shorten that infection time, by looking at 'cutting out' all the waisted time while waiting, waiting, and waiting to get worse instead of getting what you need.      ===   I mean we as humans don't make cancer patients WAIT until they get sicker!  


Goldie,

The point many of us have been making is that there is NO TEST for Lyme Disease that is accurate.  The blood test used by the CDC was originally intended to measure trends across a large community of people to see whether there was a measurable increase in Lyme Disease within communities.  This is the Western Blot test.  Unfortunately it has only a 60% chance of accurately spotting Lyme Disease (leaving 40% with false negatives and untreated) and it has what some doctors claim to be a 20% - 50% chance of creating false positives.

The problem with blood testing is that Lyme Disease and its co-infections stay in the blood stream for only a short period of time after the patient is infected--only 2-4 weeks.  Once the bugs are out of the blood stream, they won't show up on tests.  The other problem is that the Western Blot checks the immune system's response to the bugs through antibodies.  But a weakened immune system may not create the proper antibodies.  Also, if the patient received a short dose of antibiotics (e.g., Doxycycline) shortly after being infected, the immune system may never make antibodies to the bugs, so the Western Blot test would be negative.

Two other problems with the Western Blot test is that it only tests for ten possible immune responses (bands) and five of the ten must be present for the CDC to consider the test positive for Lyme Disease.  But four of the ten bands are not specific for Lyme Disease.  What's worse, two of the most specific bands for Lyme Disease were removed from the Western Blot test in the early 1980's when some private companies tried unsuccessfully to create a vaccine for Lyme Disease.  These two very specific bands were never added back into the Western Blot test because anyone who got the vaccine (which was only on the market for a very short time) would test positive on those two bands and it might be a false negative.

Now the most appalling part of the testing.  Doctors have relied on the Western Blot test as the only tool to test for Lyme Disease.  Even if someone had four of the ten bands as positive, the doctor would say that it came back negative because five of the ten were not positive.  BUT THE WESTERN BLOT WAS NEVER INTENDED TO BE USED AS A DIAGNOSTIC TOOL!!!  Even the CDC has said that Lyme Disease should be diagnosed based on symptoms and reaction to antibiotic treatment NOT based on the Western Blot test alone.  The CDC has clarified that the Western Blot was developed only to see trends among large populations of people; NOT to diagnose an individual with Lyme Disease or to rule out Lyme Disease for an individual.

There are other tests available through Igenix Labs in California which test for DNA of Lyme Disease, Babesia, and Bartonella in the blood stream.  But the DNA of these bugs will only be in the blood stream if the bugs are killed or during the time that they are reproducing, which is for a very short time every 4-6 weeks.  So you have to get the blood drawn at the right time.  But who knows when that time is?

Now back to your question--how does one get diagnosed with Lyme Disease?  The answer is that regular physicians are not qualified to provide the diagnosis.  Even specialists such as rheumatologists, neurologists, orthopaedists, gastroenterologists cannot diagnose Lyme Disease.   The ONLY WAY is to go to an LLMD who truly knows how to interpret the blood test (a positive test on band 41 of the Western Blot means the patient was exposed to Lyme Disease at some point) and based on symptoms.  They can rule out symptoms that are not Lyme related but also they can see the whole picture of symptoms in a Lyme patient.

Regular physicians will try to treat the symptoms one by one like my primary care physician did for 10 years.  But I just kept getting sicker and sicker over those 10 years.

To answer your other question, I started on BTD one year before I was diagnosed with Lyme Disease.  i thought I only had an autoimmune problem (because of positive ANA blood test) but the autoimmune problem was actually caused by the Lyme Disease sitting in my organs, muscles, and joints and my immune system was attacking it but my immune system was way overloaded and outnumbered.  This showed up as an autoimmune disease but my rheumatologists, through countless expensive blood tests, could never identify which one.  The BTD eased many of my symptoms and actually turned my positive ANA (autoimmune disease) to a negative ANA.  This happened because BTD helped to boost my immune system.

But I never got better on BTD and when an orthopaedist gave me a cortisone shot in March 2011, my immune system shut down (which happens with cortisone) and the Lyme Disease had a field day jumping back into my organs, muscles, and joints, and causing a relapse.  That's when I knew I had Lyme Disease and I finally went to an LLMD in June 2011 and finally got the diagnosis.

By the way, another test is a Brain MRI.  Lyme Disease loves the tissue of the brain and will cause scarring and lesions in the brain.  But be careful-a neurologist will diagnose the scarring and lesions as Multiple Schlerosis or Parkinsons and will say it is not treatable.  They don't know what causes Multiple Schlerosis or Parkinsons, though, so they don't have a cure.  Many of those diagnosed with MS and Parkinsons actually just have a bacterial infection (Lyme Disease), which is treatable with aggressive antibiotics.

So BTD helped me heal my gut and improve my immune response prior to starting the aggressive Lyme Disease treatment.  It has been invaluable in preparing me for this difficult treatment; plus I am handling the treatment much better than many because of BTD.  I can feel better on BTD, but it alone will not cure Lyme Disease.  It only helps some with the symptoms and it won't help if my body has a crisis, like getting a cortisone shot, or needing surgery, or getting another disease such as cancer.  If any of those things happen, your body will be dealing with the stress of those issues plus Lyme Disease will be able to multiply again and you will relapse.

So, to find out if you have Lyme Disease:
--DO NOT got to a phsycian or a traditional specialists
--DO GO to an LLMD who will do a battery of blood tests AND will make a record of symptoms

Do start on BTD as soon as possible so that your body is more prepared to handle the treatment.  And be prepared for long term antibiotic use.  However, even long-term IV abx will be over in 6-7 months if I respond to treatment well.  And after that, there will be a period of oral abx, but I'll take those only about 4 days per month and only for 9-12 months.  After all that, if there is still any Lyme Disease in my system, my immune system will keep it under control and I expect to feel as good as I did 10 years ago.

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Goldie
Friday, November 18, 2011, 4:50pm Report to Moderator Report to Moderator

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Quoted Text
So, to find out if you have Lyme Disease:
--DO NOT got to a physician or a traditional specialists
--DO GO to an LLMD who will do a battery of blood tests AND will make a record of symptoms

Do start on BTD as soon as possible so that your body is more prepared to handle the treatment.  And be prepared for long term antibiotic use.  However, even long-term IV abx will be over in 6-7 months if I respond to treatment well.  And after that, there will be a period of oral abx, but I'll take those only about 4 days per month and only for 9-12 months.  After all that, if there is still any Lyme Disease in my system, my immune system will keep it under control and I expect to feel as good as I did 10 years ago.


THANKS this seems to be where I am looking to make sense out of this frustration....

I think in future I would send many more 'clients' that feel miserable to a LLMD sooner rather then later, especially IF they exhibit many signs as listed in another post way earlier here (THANKS for that list also) ...  

I agree that BTD is 'the' important part of supporting one self.. the cure with it is not expected by me.. But reading that it might have helped you with your immune response is impressive and in my book expected, especially if one was eating all kind of junk just to feel better.. which I can understand as well.

Have any of you dealt with not only feeding the body, meds and foods, but also with dealing internally with ELIMINATION of whatever might be discarded.  Have any done colon cleanses, to at least facilitate easy elimination of what might be lurking in the colon? (water and or coffee enemas?) if not why not or has no one mentioned it as PART of the other available treatments?

I am aware that there are many micro-organisms normal in the body but many also are not and having them linger or shed their own skins or fecal matter might better be washed out, gently..
What is the general view on it????? or is one just to exhausted to do even one more thing?

Quoted Text
THANKS FOR A GREAT response!!  The lack of a test, or series of tests is incredible!!!  
  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ABJoe
Friday, November 18, 2011, 5:18pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl
... when I get fibro-flares, I tend to get the most pain in the neck and shoulders, along with headaches and all-over muscle aches.

This sounds like lymph backup (causing the neck and shoulder pain), then release and drain into the gut causing the toxic headache and muscle aches.


RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer
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TJ
Friday, November 18, 2011, 6:05pm Report to Moderator Report to Moderator

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I'm fully back on my supplements, and I feel pretty good again today -- at last!  I woke up early, made a stencil for my dehydrator trays, cut out parchment liners for them, and loaded them up with apple and banana slices and "rice cakes" (cooked rice squished together into a patty; I hope they stick together).  Those little pills and powders make a remarkable difference.

Even if my doc can get me in with a specialist, I don't know if it's a good idea.  Knowing my luck, I'd get a diagnosis now that would be considered a "pre-existing condition" when I get insurance again and treatment wouldn't be covered.  On the other hand, if he/she doesn't diagnose me, I will have wasted a lot of money on tests using up the deductible on an insurance policy I won't have after this month.  So I'll just sit tight, keep taking supps, and look for another job with health insurance benefits.

Quoted from Goldie
I mean we as humans don't make cancer patients WAIT until they get sicker!
Lyme patients aren't quite in such immediate peril as cancer patients, are they?
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Chloe
Friday, November 18, 2011, 6:07pm Report to Moderator Report to Moderator

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I have never tested positive for anything related to Lyme disease.  Dozens of co-infections were
found on biomeridian testing but not in conventional tests.  The spirochetes become stealth...hide
in the body...latch onto the immune system in a way that detection is often difficult or impossible.  Yet, I had a bullseye rash, 104 fever in the middle of the summer...pulled a tiny deer tick out of my shoulder that was discovered by my husband with a magnifying glass.  And still I didn't test positive.  Imagine how it feels to find a LLMD to determine what to do with me.... but insurance
would not cover treatment because the doctor couldn't prove he was treating a patient with Lyme or any of its co-infections.  It's why I spent a total fortune on everything alternative known that I could possibly do.  I did get a holistic MD in the early 90s to treat me with doxy for 4 months...
but it was just to see if symptoms would be eradicated.  Initially, yes...long term, no...I wound up
with fibromyalgia and neurological symptoms that were better helped when I found a master
herbalist.

Still if anyone lives within reach of Dr. Ginger Nash in Wilton, CT (she works with Dr. D) it might be worth getting another opinion, especially if conventional medicine isn't helping.

I dunno....medical technology to determine tick toxin pathology isn't coinciding with the vast symptoms of Lyme for way too many people.

And then again, all fibromyalgia isn't Lyme Disease.  I found my fibro to have a huge emotional
component...stress, negative thinking and lots of fear.  Sometimes addressing emotional issues
and spiritual issues are profoundly beneficial.  


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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spinnakertech
Friday, November 18, 2011, 8:44pm Report to Moderator Report to Moderator
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Quoted from Chloe
I have never tested positive for anything related to Lyme disease.  Dozens of co-infections were found on biomeridian testing but not in conventional tests.  The spirochetes become stealth...hide in the body...latch onto the immune system in a way that detection is often difficult or impossible.  Yet, I had a bullseye rash, 104 fever in the middle of the summer...pulled a tiny deer tick out of my shoulder that was discovered by my husband with a magnifying glass.  And still I didn't test positive.  Imagine how it feels to find a LLMD to determine what to do with me.... but insurance would not cover treatment because the doctor couldn't prove he was treating a patient with Lyme or any of its co-infections.  It's why I spent a total fortune on everything alternative known that I could possibly do.  I did get a holistic MD in the early 90s to treat me with doxy for 4 months... but it was just to see if symptoms would be eradicated.  Initially, yes...long term, no...I wound up with fibromyalgia and neurological symptoms that were better helped when I found a master herbalist.


In my opinion, tt's too bad you didn't just spend that "total fortune" on antibiotics--you probably would be cured by now, especially given your positive response to doxycyline, and your money would have been better spent.
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Goldie
Friday, November 18, 2011, 10:09pm Report to Moderator Report to Moderator

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As I see the problem -doctors might not treat aggressively (any more, for fear of persecution) since promises of :"you probably would be cured by now,"  might not be so, no matter the meds.. long term one just does not know.. but then I would take any 10 years feeling better if that is: 'all there is' ,,,, then indeed: then lets keep dancing..

I think the decision to 'consider' that one might have LYME is like 'coming out of the closet' .. one can hide from ones own SELF.. but the body still knows and has no hesitation to remind you that you have not met it's needs yet.. Sticking the head in the sand will not work.. (not for medical doctors either!) It takes knowledge and forbearing to ORDER the test and then - be ready to be disappointed - when one proves negative.  ESPECIALLY when those negative tests are so misleading.

I feel for those who 'know' that they are ill, but are told it's all in their head.. happened to me up to the day before I opted to change doctor and got the correction I needed... I got lucky, but over 30 years later I am still ANGRY.. I lost my youth to misdiagnosis, and offered up my health for test after test, poisoning me with radiation.
  
Later, I had new injuries and was not 'fixed' by a score of 'therapies'.. I needed to accept that many things don't get fixed by meds or pills.  Looking elsewhere at least NOW is easy via INTERNET.. I suffered 63 years, and only recently 4 years am painfree-outside of daily 6 hour headaches-I feel for the frustration of going from Peter to Paul to Tom, Dick and Harry.. the cost in hopes dashed is way to big to pay. -Never mind the money-. I lost 63 years of living and 40 years of income to feeling miserable, I am so sorry for all who go through the same.

I am going to pull out the posts that show the list of symptoms and the long lists of trials and tribulations... so if I ever need to show it to others who are suffering without the benefit of a label can at least get the info to consider.

Labels are mostly useless, but the movie Under Our Skin is at least showing others (family members and doctors) that the sufferer is not 'crazy'/  that is a big thing.

If I did not own equipment that is protecting me from great pain, I would be taking endless drugs.. and those same drugs would cause me to be sick.. (a friend just developed near blindness from harmful drugs.    

I am grateful for all your responses!!
    




  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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JJR
Friday, November 18, 2011, 10:23pm Report to Moderator Report to Moderator

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Quoted from Chloe
I have never tested positive for anything related to Lyme disease.  Dozens of co-infections were
found on biomeridian testing but not in conventional tests.  The spirochetes become stealth...hide
in the body...latch onto the immune system in a way that detection is often difficult or impossible.  Yet, I had a bullseye rash, 104 fever in the middle of the summer...pulled a tiny deer tick out of my shoulder that was discovered by my husband with a magnifying glass.  And still I didn't test positive.  Imagine how it feels to find a LLMD to determine what to do with me.... but insurance
would not cover treatment because the doctor couldn't prove he was treating a patient with Lyme or any of its co-infections.  It's why I spent a total fortune on everything alternative known that I could possibly do.  I did get a holistic MD in the early 90s to treat me with doxy for 4 months...
but it was just to see if symptoms would be eradicated.  Initially, yes...long term, no...I wound up
with fibromyalgia and neurological symptoms that were better helped when I found a master
herbalist.

Still if anyone lives within reach of Dr. Ginger Nash in Wilton, CT (she works with Dr. D) it might be worth getting another opinion, especially if conventional medicine isn't helping.

I dunno....medical technology to determine tick toxin pathology isn't coinciding with the vast symptoms of Lyme for way too many people.

And then again, all fibromyalgia isn't Lyme Disease.  I found my fibro to have a huge emotional
component...stress, negative thinking and lots of fear.  Sometimes addressing emotional issues
and spiritual issues are profoundly beneficial.  



That last part is the part I'm really digging into now.  I know that my anxieties and fears just make it worse.  Adds more stress on the body.  It's not strange to have it, as it seems common with all this, but I need to learn how to master it, if possible.  So it doesn't spin out of control and make the physical worse.  It's not an easy thing to overcome though.   I just got done with my pastor and it was a good session.  He gave me on physical tip though.  He said if you're not eating 2000-3000 calories a day, your body will start eating itself and you're going to have problems.  Mentally, physically, etc.  He said, I need to start pushing the boundaries on how much I eat.  He was nice and said he didn't want to make me feel worse, but I have to get the right caloric intake.  And I do forget that sometimes.  

Spinnakertech, from all the research I've done, Antibiotics are not enough alone to kill it all.  From what I understand you have to train your immunse system or boost it, you have to kill the lyme, and you have to deal with the coinfections.  ABX might not cover all the coinfections.  Possibly.  I am glad that you're doing better and I'm sure you're on the right track though.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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nowishow
Saturday, November 19, 2011, 12:28am Report to Moderator Report to Moderator

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Quoted from ABJoe

This sounds like lymph backup (causing the neck and shoulder pain), then release and drain into the gut causing the toxic headache and muscle aches.


Ruthiegirl - I agree with this. This product really helps me.
http://www.pharmacyspecialties.com/site/679199/product/BR136

I apply it on any areas of my neck, upper back, or upper chest that feel knotted up and it seems to get the lymph system draining in that area. I've been using it for at least a month and it has continued to help me. It might be worth a try.  


"Anxiety is the gap between now and then"

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Kim
Saturday, November 19, 2011, 1:52am Report to Moderator Report to Moderator

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Quoted from 11080


Goldie,

I think you misunderstand Kim's situation because she did not explain it completely.  Kim has had her first one or two diagnostic appointments but has not yet started on treatment with Dr. Jemsek.  Once she starts treatment, Dr. Jemsek is quite prompt with appointments and is always available for the follow-up appointments in the time that he says.  Dr. Jemsek is not liable for neglect under these circumstances.

Complaining in writing will not likely be effective.  What she can do is get herself on a waiting list for cancellations.  That works very well.


Spinnertech, you are mistaken.

I am on antibiotics and supposed to see Jemsek by the first week of January after my third cycle.  You are getting better treatment because you are giving that practice that huge IV monitoring fee each month.  So if you do orals, you are at the bottom of the list.   They are overbooking new appts and follow up appts with Jemsek and he only puts his calendar out 3 months at a time.  So I couldn't even make a couple of appts ahead of time.

The cancellation list hasn't worked for anyone I know.  I don't drive and need a days notice to get into DC.  

Not everyone is enamored with this doctor.  Their PA's aren't consistent either.  

I already sent in a deposit and paperwork to see another doctor who does have time for me to see them.  This one won't charge me $2K  a month to be on IV antibiotics.  

Goldie-read the book "Cure Unknown" by Pamela Weintraub.  Excellent book that explains the whole political and medical views of Lyme.
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Goldie
Saturday, November 19, 2011, 12:37pm Report to Moderator Report to Moderator

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Quoted Text
Goldie-read the book "Cure Unknown" by Pamela Weintraub.  Excellent book that explains the whole political and medical views of Lyme.


Thanks I will do so.  

I will also actively do something about this situation that makes every sick person spend their last available dollar for years, all because there is not a better plan available.  The money spent on such situations is ridiculous.  I had done it for my condition, and know the hardship of it.  I have every intention to make a small difference somewhere, somehow.  

Those lists of enumerations of your situations above help a lot.  Even just listing the name of antibiotics you are on, that seemingly work,  could have a cumulative effect.  Possibly there are different kinds and strength and maybe different tests, but in the end it comes down to some few things, few protocols, and few items that help.  

Few might be 10 25 or 50, but even that would not be a big thing to understand if there was such a list some place.  There are enough Lyme sick people by now, to band together in some pro active way -  to make a registry useful.  Maybe that is something to be considered.  YET,   the only effort it might take is a need for healthy individuals, healthy bystanders to take up the cause to help those who are just to tired and to sick.  

Kim does the book you mention have such a place for Lyme sick people to congregate? like this little THREAD here is at least give voice to a dozen or so people, who came here accidentally by design and have at least a voice here.  Better then nothing...

I know of some other websites that have LYME good info, I will look to see if there is a combined effort someplace that can be used to get a bigger 'home' place VOICE on the Internet...  I remember certain sites mentioned in early postings here, I will start there and if there are ideas to be added to my search, point them out or even let others (healthy/strong) people join me.  There has to be some way to accomplish 'something'.  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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