I think we all need to keep in mind that Lyme Disease may not be the cause of our illnesses. I find it very difficult to except that everybody on these Lyme sites, has Lyme Disease. There are many reasons as to why people may be ill, and many times they have Lyme like symptoms, and yes, anti-biotics do help as well in the cases where someone has an ongoing infection.
Candida overgrowth for example can be a cause for illness, with many symptoms match those of Lyme Disease. There are so many pollutants in our bodies as well, break downs of our bodies, stress, mental/emotional issues, and combo's of a little of all things!
Am I stating you dont have Lyme? No! I am just saying, lets be sure we cover all the bases before we resort to long term abx, which can do far more harm than good, (if you are not infected at all with an infection). Just because certain bands come back + or -, may not be telling us all we need to know. Something to think about.
Some people test +, no symptoms, CDC +, they are given meds, nothing happens at all, no herxes, for months, nothing. Some test CDC -, all the symptoms, given meds, still nothing happens. Some do herx. Its a tough call to make here.
Yes, we need to try something, I agree, but not sure if Lyme Disease is the route of all our illnesses. My story was........I worked at a humane society for 7 weeks, a few times per week I was there, walking dogs through the woods, ticks, beetles, ants, bees, wasps, biting flies, knats, snakes, spiders, mosquitoes, all over me every time I was there.
For seven weeks I felt fine, no probs...The one sat afternoon at the shelter, I was introduces to incapasitating fatigue. The next day I was bed ridden, barely able to move. Fatigue came and went at various levels, but was always present. Then came in the sore joints, burning shins, and elbows to my finger tips were on fire.
I remember walgreens calling me and saying, come get your meds, I said what meds, they said, Doxy...I rushed up, drove across town, and bought the pills and water! At that point I was getting worse, but within 3 weeks, I was much better. I refilled the script, 3 weeks later, even more healthier, it was grand!
A month after that, all the symptoms came back with a vengance! I never noticed a rash, but could have had one over the 7 weeks, maybe on my head, would not have seen it there. But they did have some dogs alone dur to Lyme, and I pointed out the bugs that were on me, in my car, my home, bed, etc. TICKS!
I also missed a CDC + by two bands, all +'s, the others were IND's....This was explained to me like this..."You had enough bands to have Lyme, we think you do, if they were +'s, you would be CDC +, the other bands for sure are, we just cant tell for sure what is in the other bands, there is something, we just cant be sure" Igenex.
Does this mean I have Lyme Disease? Maybe! I did have exposer to ticks, that is for sure, I did respond well to Doxy, it made me feel well again, that is for sure, symptoms cam back, that is for sure, fatigue was brutal, that is for sure, close test results, that is for sure. Later after being on Tetra for 6 months, I have a number of good days, after dying for months with major herxing, that is for sure.
Another thing for sure is my own foolishness, NOT TAKING PROBIOTICS, until it was far too late for me...Not to recover, but now have to deal with candida overgrowth...Not eating well has been my down fall. Oh well! I march forward never the less!
So, please be aware of your body, listen to it, help it, even if it means eating boring, barely tasteless foods, take your pro's, abx, anti fungals, etc, and learn all you can. Take control of your life, if you do not, no one will!
I miss my healthy body, my strength, energy levels, I really miss them all!
-------------------------------------------------------------------------------- Robert
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posted
"Some people test +, no symptoms, CDC +, they are given meds, nothing happens at all, no herxes, for months, nothing. Some test CDC -, all the symptoms, given meds, still nothing happens. Some do herx. Its a tough call to make here."
If someone had no symptoms as stated above, why would they bother having the test and taking medication ?
People usually only seek medical help when they are suffering symptoms and are very sick.......
I'm sorry if I am missing something obvious above, I'm just not quite sure the point you are making.
I am aware of course that things other then lyme disease can cause similar symptoms but I suspect that most people on these boards have been tested for everything and anything OTHER then lyme disease usually.
Posts: 21 | From Ireland | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I think you have a good point that lyme may not be the only issue causing problems.
It's very easy for things like yeast and dormant viruses for run amuck(sp) when the body becomes run down.
I believe it becomes taxed very quickly when trying to deal with Lyme & co-infections and ABX alone will not give the body the support it needs to maintain it's defenses.
It does sound to me, from your description of Sx & Tx like you may very well have co-infections. Babesia is notorious for aiding & abetting Lyme. It helps it hide in your body.
Have you been tested for co-infections?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Yes Boston,
You are definitely onto something here and everyone with lyme needs to be concerned about candida yeast, heavy metals, etc.
Your symptoms do sound like lyme. Your initial reaction is common. Your inability to stay well though may have more to do with a combination of things overworking your immune system hence Lyme continues to thrive in you.
It is nearly impossible to say which came first the lyme or the yeast or the metals, or the.....(fill in the blanks).
I personally do not believe you ever eliminate the lyme bug completely. Just like the chicken pox virus though, I believe our bodies live in perfect harmony with lyme until our immune systems are damaged. BTW, prolonged stress is one of the most damaging effects to our immune system. I know many of us have/had high stress jobs.
Once we are chronic, we are a mess to clean up and if you try to get well with only abx, you usually fail. I think much more has to go along with the abx for complete healing.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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quote:I think we all need to keep in mind that Lyme Disease may not be the cause of our illnesses. I find it very difficult to except that everybody on these Lyme sites, has Lyme Disease
With all due respect, people come here looking for answers, and I don't think anyone much cares if you believe their problems are caused by lyme or not.
We are here because we have lyme disease (and coinfections) and want to get better, and this is hands down the very BEST place to talk to other people who have shared experience.
I do not believe posts such as yours help the discussion, but might only confuse newcomers looking for help and insight.
Lyme disease is no doubt a very complex disease and even the experts admit they know very little about it, yet to assert statements about other people on this forum is just downright rude. Why do you feel the need to do that?
Your story sounds very convincing--you have been bitten by almost every known insect and came down with classic lyme symptoms weeks later--Ok, you have lyme. I'll tell you a different story.
My husband had exposure to many ticks and insects in an endemic area, yet he never had any absolute lyme symtoms, just some small transient ones that were easily dismissed until BAM! at age 40 he was hit with some very significant neurological ones. He too has a negative WB with some very sig. bands on the Igenex test. He is on abx and is improving ( and herxing). In your opinion, does he have lyme?
Be careful with blanket statements because you clearly are not in a postion to know what is ailing the people on this site and worse yet you run the risk of confusing people who need help.
The people who frequent this board are smart enough to know that not everyone has lyme and that lyme isn't the cause of every ailment, but this is a lyme board and we NEED to talk about lyme and its treatment here.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
People can have Lyme AND disease X, Y or Z. They can have responses to their meds that give them symptoms.
If people have certain bands on the Western Blot that are indicative of spirochetes, and they have symptoms, they've got lyme.
Also I am beginning to see how some people with chronic lyme have permanent problems -- the inflammatory process has cut blood supply, and certain parts of the brain are damaged.
I don't understand why this post was written. People need to be very proactive with lyme, and the information on this board is extremely thorough and specific.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
from what I read about you here, all you have done is DOxy and Tetra.
Doesnt say you have addressed coinfections or you may need IV or other antibiotics.
I dont know why you write this, when all you have written you have done is 2 antibiotics in the SAME class.
I could see you wrote this if you have addressed ALL with lyme, but you havent, from what I have read.
If you think you have lyme, then you need to do more then you have done I would say.
ESPECIALLY if you felt better on Doxy.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I can think of no better place to ask the question "are you sure it is lyme?"
No sense in asking that question on any other medical chatline.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
There are people DEATHLY ill from lyme, and others not that bad from lyme.
ONE must get the message across that lyme can be deadly for some, it is for me, and I think
THE reason is has been deadly for me is because
I went OFF antibiotics twice to treat other things and lyme because others said lyme could be gotten well without anitbiotics.
WRONG!!!!!!!! for myself, seriously here, I am going to die from this bloody disease if i dont get a handle on it, things are really bad for me
SO I have to get the message across that yes, check for other things, but KNOW that lyme and coinfections can be very serious for some.
I WILL die from this bloody disease if things dont turn for me, I mean this, I hope others see this.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
Imho, very foolish post.
Posts: 213 | From ohio | Registered: Jul 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Another thing I wanted to write, is that I had NO idea, how sick I was from this disease. It is a living nightmare, I feel sentenced to hell somedays. Really, be careful, you may end up like me, read below to not end up like me.
There is no test to tell you how badly you are affected with this. I went off antibiotics because I thought I had kicked the lyme pretty good with 7 months of antibiotics.
I wrote in my diary after I had been off antibiotics for 3 weeks that I was going to be working in the fall, of that year. I wrote that
I was kicking this disease, I was jogging slowly again on the jogger, I was knowing that I was going to work in the fall.
I was so wrong, how quickly I relapsed, one month, the growth cycle of lyme I was off antibiotics and started to get sick from heat, from the sun, then the dryness started,
i thought I could kick it with the herbals but then the 2nd month off antibiotics, I was up at emergency, the dryness had spread to the lungs, the air hunger started, I was so ill,
and here, one month before this, I swore to myself that I was getting so much better, and would be working in the fall.
That was 2 years ago, I went off them again, to rife this time, I had a cheap rife, but it was working, herxing like heck, but then it stopped working, and I did not know if I should buy
a more expensive machine, because I was rapidly getting sicker, I did not, I then had to wait for appt with LLMD, and by then,
had become allergic to ALL foods, and could barely stand.
Have been on antibiotics since, can eat again, but get sick from light while in lyme treatment,
It is a horrid disease for me, maybe? I would not have gotten so sick had I stayed on antibiotics?
yes, I think I would be better,
I am so much more then what i write here, but this disease is taking me to the grave, I am waiting to see an ID Dr here, am in Babesia treatment, but it is not working like before,
but then again, it could only be that I need IV for lyme. I had this for about 15 years before treating.
So, I just wanted to write this, maybe help someone.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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i think there is an important point to your post, which is that Lyme is never just 'Lyme'.
the disease really ought have a new name IMO.
Lyme (i mean chronic with multiple symptoms beyond days/weeks of abx treatment) is never just Lyme (Lyme borreliosis) - it is Lyme with mycoplasma, bortonella, babiseosis, erlichiosis, and other tick-borne illness - plus, when chronic - it it sensitivity/symptoms from toxic overload, environmental, ie:metal, mold, allergen..
it becomes a reactive condition, it is candida, immune supression/overactivity -- it is (resultant of lyme and overload with effective treatment and die -off) organ dysfunction (brain, liver, colon, kidney, lungs, ect) it is a condition which depleates micro-nutrients and minerals, causing further complications.
it can also manifest (resultant of chronic infection) as adrenal, hormonal, thyroid, ocular, neuro-cognitive, circulatory, lymphatic, or digestive dysfunction.
however, your post, IMO, fails to address the cascading effect of chronic infection on the body. it suggests there is a point where Lyme ends and 'other conditions' begin.
i do not believe it is that simple. i do not know what the 'other conditions' might be. i consider it all reactive to chronic disease and treatment.
i also know that Bb is well documented to be active, and dormant, in many forms - which reappear as one goes on to heal the rest, the infection is documented to involve spores with many defences and hiding spots which 'blossom' as we treat the body and the infection. Bb is well-documented to have immune-evading intelligence which causes further complications.
i do agree, however, that none of those chronically ill are dealing with Bb alone.
i do agree that we MUST address candida, parasites, toxins, organ function, nutrient replenishment, and a whole host of other concerns (on and individualized basis) in order to get well.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Health,
Going off abx isn't the point of the post at all. No one is telling you to go off abx.
As Mo said, there is so much more going on in your body than just lyme. Does that mean lyme is unimportant. Of course not!
I'm sorry you are so sick and your body is not responding very well to any treatments. I believe that just emphasizes the point here all the more.
You are probably dealing with so much more than just Lyme. Your body is so weakened from fighting so many things, that it just can't rally around and get well. Not even with abx.
It sounds like you certainly have looked at other treatment options, but on our own, we are poorly equipped to determine what we need and whether or not it is working for us.
A really good doctor who understands lyme and understands yeast, metals, nutrition, adrenals, thyroid, etc is what you need. The doctor is highly trained in medicine and the doctor (hopefully) is not sick himself and therefore, can observe your progress or lack thereof better than the sick person can.
I believe Boston is trying to figure out his illness just like all the rest of us. He has a right to ask questions. That is not harmful to anyone. Stop censoring him. In your fear that the other camp is going to take abx away from you, you have stopped being objective.
Abx are good and necessary. More for some and less for others. If you are relying on abx alone, you will almost certainly never heal. Your body is weak and sick and it needs rebuilding. Abx are destroyers, not rebuilders. Add rebuilding to your antibiotic protocol. Not in place of, in addition to.
I really do hope and pray you begin feeling better real soon. It does sound like you have been through a lot.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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BostonLyme2005
Unregistered
posted
Is there a point? Why write this post? MMMMMMMMMMMMMMMMMM?
We (You and I), that is, are very ill! We must always ask questions, even if they seem like they came from OZ/Never Never Land!
Why?, because history has taught us that from the silliest of idea's, have come some wonderful discoveries, even near miracles as well!
So be bold, be eager, fight with your tongue, project the defense you know best, (words), in the form of questions!
Seek, and ye shall find! We all need to find! Always read for what is written, then between the lines, ask questions, over and over...It may lead to something promising, like recovery!
My intentions are never to insult or to disturb in any way, but rather to awaken the greater knowledge that resides in all of you, so maybe one day this forum will cease to exist!
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Luvs,
Please dont speak to me like you are God. I am telling others MY story, so that if they decide to go off antibiotics, they can watch to
see how they do. THAT is why i told my story so they dont END up like me, OK? can you understand this? This disease will kill some of us, THAT is why I wrote this, I am not looking
for sympathy, I am telling how quickly I relapsed, serious relapse.
I also have seen MANY others MD's and ND's to do with adrenals and so forth, and this is not the issue for me.
I DO believe that antibiotics alone can heal some of us, and how you could say that I am probably dealing with MORE then lyme, and if I rely on antibiotics alone I will most certainly not heal,
is a REALLY big mistake to post to me. If you are God then tell me this, but you are not, so watch what you say.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Chill out Trish
Your lyme rage is out of control girl.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I will never chill out when your talking about
someones life,
Your ridin much too high, watch it, your gonna drop when you ride that high,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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