Questions about all our ailments

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+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/8/2010 1:32 PM (GMT -6)   
Not sure why I'm posting this, because I already know we don't have the answers -- even the Drs don't.  But I'm betting there are some of you out there who have researched and thought about this stuff even more than the average LLMD, and maybe some of you have some answers, or at least theories.  I think I've asked this before, but I want to ask again.
 
When I first came to this board I was overwhelmed looking at all the many treatments people were receiving-- esp the number of abx some people were on.  I just wanted to escape this place!
 
Now, what I'm really noting is that, while reading over folks' signatures, the number of symtoms, illnesses, infections, and incompetencies everyone is suffering with.
 
So......  Do we believe that Lyme has caused all this?  Or did all this cause us to come down w/ Lyme, whereas most other folks' systems took care of it for them?
 
And I'll put it this way:
 
If a person is very healthy, has a well functioning immune system,  properly takes care of themselves, handles stress very well, and does not have any other immune type disorders or illnesses, what do you believe happens when they are bitten by a tick carrying Lyme and don't know it?  Or, maybe they do know it and receive the inadequate 3 week abx treatment?  Is it not possible that many people do kick it this way and that's the reason Drs are stuck on this approach?
 
In other words, do we still have Lyme (chronic and/or late stage)  because we are 'different'?  
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/8/2010 2:19 PM (GMT -6)   
+Lyme,
You have hit on a personal interest with your question! Since just before joining HW, I started doing as much reading as I could on what treatment might actually hold the most promise for my recovery. I quickly learned that there were soooo many approaches to dealing with tick born infections, and I would have great difficulty in deciding which treatment approach would work best for me. Of course I had other things going on in my body that I wasn't yet aware of - or maybe it was the tick infections that pulled so much out of my body, that things just started to fail. There really is no way (at least none that I have been convinced of) for me to tell which came first. So it's the ole question of which came first - the chicken or the egg???

At this point in my learning about these tick infections, I do believe that a perfectly healthy person, with all systems up & running properly could, indeed fight off these infections without the aid of abx, herbs, homeopathic meds, or any other treatment. I now doubt the possibility of finding such a person in our country (the U.S.), mainly due to all of the pollutants in our air & foods, not to mention all of the processed foods that we as Americans eat on a regular basis. Throw in the exhaustion that overtakes many with TBI's??? We then have to rely even more on those "quick-to-fix" options for our meals.

Oh, BOY!! I could go on for quite a while on this topic, but to make this a much shorter post, I'll just say - yes, IMO once bit, our infections went chronic (from the blood into the tissues) because of a 'weakness' within our bodies. This is what Traditional Chinese Medicine (TCM) is based on. They believe that with the perfect balance that our bodies are supposed to be able to maintain, there would be no illnesses. That only happens when things get 'out of whack'. The whole idea of acupuncture & TCM is to bring the body back into balance.

Oops, got off one soap box & went right up onto the next one!!! Sorry!!

I'll sure be interested to read what others who have done some research type reading have to say on this!!!
Thanks for posting this +Lyme!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/8/2010 2:32 PM (GMT -6)   
Trav, I understand and agree with everything you've said. And we do need the soap boxes. But part of my question has to do w/ all the viruses and immune problems that almost everyone seems to have.

OK, example: If someone has chronic EBV, did their body succomb to the Lyme infection because it was already dealing w/ the EBV? Or is EBV one of the common chronic viruses that are enabled to become active because of the Lyme? Do we all have Lyme because we have/had all these other issues, or did Lyme cause them all?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/8/2010 2:37 PM (GMT -6)   
This is just my opinion but I think the viruses may start the Lyme Infection up or bring it out. Maybe...Lyme has been lingering all along but our immune system has kept it at bay until the viruses hit. This seems like what happened in my case at least. It is the only thing that makes sense.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 8/8/2010 3:39 PM (GMT -6)   
Based on my own experience, I think that is true. I had symptoms, off and on, for many years. It's difficult to even figure out when this all started for me. But I did not get really sick until my husband became ill and died. I believe the stress from that weakened my immune system and left me vulnerable.

Rose
I have Lyme; it doesn't have me.

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 3:44 PM (GMT -6)   
Hey +Lyme I saw your post to me regarding this thread in the misdiagnosed writer thread  ( http://www.healingwell.com/community/default.aspx?f=30&m=1870309&p=1)
 
If a person is very healthy, has a well functioning immune system,  properly takes care of themselves, handles stress very well, and does not have any other immune type disorders or illnesses, what do you believe happens when they are bitten by a tick carrying Lyme and don't know it?  Or, maybe they do know it and receive the inadequate 3 week abx treatment?  Is it not possible that many people do kick it this way and that's the reason Drs are stuck on this approach?
 
In other words, do we still have Lyme (chronic and/or late stage)  because we are 'different'
 
Yes, there are people who do kick it with a 30 day abx treatment. (And not all of them relapse)
 
Maybe we are "different", maybe due to genetics or other reasons beyond our control.
 
To make a long story short, like many others, I came about my lyme diagnosis and treatment backwards. I tested positive for CEBV and Fifths Disease years before my lyme diagnosis. (I became and am still an advocate for ebv sufferers - support, treatment, research and funding - I don't think all ebv is lyme related although lyme maybe ebv related if that makes sense. I don't believe if you have ebv, you have lyme; but I think it is more likely if you have lyme you have or may have ebv or other viral and bacterial infections) I treated with antivirals for nine months (give or take) to limited avail. when I sought out a second opinion for treatment is when I was diagnosed with lyme (clinical, Igenex and CDC confirmation). I had other issues develop along the way (endocrine, nutritional, etc) which also needed to be addressed (and occasionally readdressed). Ironically I had mono eleven months prior to "getting sick", but I also traveled out of my home state of Florida (to Kentucky, VA, Carolinas, Georgia, etc) w/in a reasonable amount of time that could be and has been considered in the timing of my illness and I had a huge amount of stress during that time. In honesty, any one of those factors or one of several others could be "the culprit" but logically it is the combination of all that I think really do us the most harm.
 
I know there has been debate/discussion here before regarding the correctness of Igenex Labs; I certainly DO NOT want to go into that discussion, but I will say that Igenex test results state quite clearly on their results a "false lyme positive may be due to an infection of epstein barr".
 
What came first, the chicken or the egg? Who knows for sure. I think one opens the door for the others to enter and if the door isn't shut or blocked in some way (LDN? ABX? Antivirals, or half a dozen other ways) one will continue to suffer and "things' will continue to develop. I believe all issues need to be addressed to fully and completely heal and usually they are not.
 
 

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 8/8/2010 7:17 PM (GMT -6)   
I definitely think I have lyme and its co-infections because of my chemical makeup and type A personality. I do think, like cancer, some of our bodies are able to deal with certain infections and some can't. I have had my gallbladder out, appendix out, acquired graves disease while pregnant, got extremely sick during both of my pregnancies - did I have lyme then, I don't think so. I think possibly some of us who are extremely sensitive type A personalities have a harder time beating things off because our stress levels are so high and thus our immune system is weaker. The question then becomes how do we beat it once it takes over our bodies. We all know some get rid of it easier than others. Do some have it and dont' know it or suffer from it, I believe yes.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 8/8/2010 7:28 PM (GMT -6)   
I think for some of us it is just bad luck. I too don't know when or where I was bitten, but I was young, 20, when my symptoms started. A week before my very first anxiety attack (some of my first symptoms) I went to Europe to visit a friend for 10 days and 3 countries so I was in great health a very happy person. Over the next 3 years I had a lot of symptoms off and on but it was after a full year of strep throat that I had my tonsils removed (age 23) and I never recovered from the surgery. I went down hill very quickly over the next 3 months and finally got my lyme diagnosis.
 
I think some people are lucky and get the bullseye rash. I also feel that 15 years ago when I was going from Dr. to Dr. on a weekly basis, they just didn't know enough about the illness to diagnose me. They brush you off as being "crazy", but in my case I knew my body well enough to know what I was feeling wasn't the flu or some other illness they tried to tell me I had.
 
For some reason all the men I have known to have this have gotten well fairly quickly. I know I see a lot of men on this site that are still sick, but for whatever reason I have seen them recover faster than the women. I think it has to do with our hormones, but that's just my opinion.
 
I don't think there is any rhyme or reason for this illness to effect some of us harder than others. I think it comes down to how long we carried it before we got treatment or how good are Dr's are at helping us and of course, how well we take of our own selves.

jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 8/8/2010 7:41 PM (GMT -6)   
hi everything that everyone is saying is very interesting.....and i been racking my brain for a while wondering if i have chronic lyme or if its something else now..or if i always had lyme and it finaly started to affect me 2 years ago. and how do you really know if its lyme symptoms or not. i tend to forget how i felt b4 i was sick. and my nurological lyme (spelled wrong) is up and down all the time ..and i feel like a guinnie pig w my dr. with keep changing my meds every few months.... WHY CANT DRS. JUST GET IT RIGHT THE FIRST TIME. im tired of being on meds but when i am off them my joints hurt and it attacks my weaker parts. knees and spine and kneck.

i been off my meds for a week now cause my dr wants me to flush my system out. but i am on meds for a uti so not really flushing it out lol...but what am i supose to do suffer with my bladder. oh and i am on difugan i think thats how u spell it. the yeast infection pill...i had to take 3 one every other day to helpd with my stomach isues ..which has helped but my uti wont clear up...ok sry to go on and on...jennie
"I will not let Lyme controll my life i will controll my own life"
lyme since June 08
meds-zithromax 500mg one a day/ 1  month // Plaquenil 200mg twice a day/ 1 month
starting 10/3 doxy100mg // omnicef 300mg
 
ADHD/anxiety/depression// celexa 20mg

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/8/2010 8:16 PM (GMT -6)   
I'm really happy that I posted this question! I believe it is an important one, even tho no one can definitively answer these questions.

My LLMD won't even venture a guess about my 1972 bite, below in my signature. It was obvious and never questioned that my 'illness' or infection' was caused by my tick bite. But it was figured to be just that the bite site got infected. Made perfect sense back then, esp since I had no RMSF type rashes. And I tell you that this tick was one big mutha. He was huge (lost under my very long and thick hair.

So what about the things that followed? It absolutely NEVER occurred to me that these could have been caused by a TBI. And maybe they weren't. There is no way to ever know.

At those times, 1972 thru 1987, I accepted each infirmity without question. Just stuff that happened. I considered myself to be extremely healthy, in spite of the recurring acute infections.

And maybe that original infection DID go away -- I'd had some abx and some high, burning fevers. Who knows?

I believe that by sharing our stories and histories, etc, we can learn and possibly progress in the right directions.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/8/2010 8:23 PM (GMT -6)   
J48, you asked , 'WHY CANT DRS. JUST GET IT RIGHT THE FIRST TIME'. We don't know the answer to that question, but we DO know that many Drs are trained to rule out LYme, each time, and to never consider that Lyme may be the problem. This needs to change!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 8/8/2010 8:26 PM (GMT -6)   
Dr. Jernigan's perspective is interesting. He believes it's the genetic makeup we inherit plus all the traumas we experience over our lifetime, both physical and emotional, that weaken our immune system and allow the bacteria to take over. Add to that the polluted water, air and food we consume that just put further stress on our body.

This resonates with me because I've had a lot of stuff happen. These last few years, I have not been happy, and that has probably allowed this illness to deepen its roots.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/9/2010 8:37 PM (GMT -6)   
Caldonia Sun, I'm really sorry about the things that have caused you to be unhappy -- and I agree 'that has probably allowed this illness to deepen its roots'.

This is a large part of my problem -- that I am so unhappy, stressed, and depressed, because this freaking infection has made me this way. I will not excuse myself and my own responsibility to myself, however, I am feeling the mental/ emotional grip that this infection has on us.

Makes it VERY difficult to fight, doesn't it?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
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