My Western Blot from IGeneX came back positive for Lyme, Babesiosis, and Ehrlichiosis, yet for the most part I feel fine, compared to the severe symptoms of many of the people here. Is it possible I don't have Lyme? Or perhaps have it but don't need to be treated?
(I do admit if I do anything aerobic which gets my heart rate up, even for only a minute, I'm exhausted, feel like throwing up, and practically collapse. I just figured I was out of shape, though.)
My doctor said that if I don't treat it, the severe symptoms will begin to appear. I guess it's easy to stay in denial when for the most part I feel OK.
Any thoughts?
Thanks!
Posted by sixgoofykids (Member # 11141) on :
We treated our daughter before she was really sick. If you have any symptoms at all (it sounds like you do), then I would be treated. My daughter's treatment was much, much easier than mine.
If you truly had no symptoms, then I wouldn't treat, but it sounds like you have some here and there.
Of course, I would get your LLMD's opinion on this!
Posted by ByronSBell 2007 (Member # 11496) on :
Start treatment as soon as possible
Posted by roro (Member # 13383) on :
definitely be treated. Go to an LLMD, other doctors dont know how to treat properly.
you will need a combination of antibiotics to treat all three diseases for several months to a year.
I had mild symptoms for years. Originally got diagnosed with lyme in 95 due to pos test and EM rash, but only took 30 days of doxy.
a year later I started getting mild knee pain, but never thought it might be the lyme. got worse and worse over the years, doctors didn't know what it was, got treated for other things.
got more severe symptoms throughout every system and every organ of my body.
now I have severe neurological symptoms and permanent damage.
dont let this happen to you!
Posted by onthemend (Member # 13454) on :
I was just 'kinda sick' for about 1 year, got progressively worse for about 1 1/2 years, before dxd and treated. Get treated. You cannot imagine how bad this can get, and in your case, FOR NO REASON. You are lucky to have the proper diagnoses - please protect yourself from the terrible course these diseases can take.
otm
Posted by disturbedme (Member # 12346) on :
You should probably get treated. If you don't, your doctor is right, you can start getting other symptoms (worse symptoms) such as heart involvement, joint, eye, and neurological system involvement. This will happen sooner or later, so it's best to make sure it doesn't happen.
Posted by feelfit (Member # 12770) on :
I would treat just based on the fact that you tested positive for three infections. By the time that they rear their very ugly heads, you'll be in big trouble.
I would treat asap....just my opinion.
Feelfit
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by feelfit: I would treat just based on the fact that you tested positive for three infections. By the time that they rear their very ugly heads, you'll be in big trouble.
Did you have any tick bites??
The variability of Lyme is well known. You could be VERY ill, or mildly ill. Depends upon the health of your body and the strain of Lyme [or co's ] you have.
Since you've been one who exercises, etc your lyme has probably been kept in check. In my opinion, this won't last forever.
Need an eye opener on that?? Read my story below.
Posted by TerryK (Member # 8552) on :
The fact that you tested positive for 3 tick borne infections makes it unlikely that you don't have an infection. I haven't seen your western blot but these infections often go hand in hand so I would assume that given your test results, you have lyme.
Personally, knowing what I know about lyme and co-infections, I wouldn't dream of not treating.
It seems that many people, myself included, have gone for years off and on without too many symptoms until the immune system becomes depressed. Many people are fine until they go through a stressful period and then the infections overwhelm them. As we age, our immune system does not work as well.
In my non-doctor opinion, at some point, you will have to deal with it. If you wait, your recovery will likely be long, expensive and physically painful. The suffering that these illnesses can cause is indescribable.
Best of luck, Terry
Posted by lymie tony z (Member # 5130) on :
I have to throw my hat into the ring for treatment asap as well....
Some of us have gone asymptomatic for years allowing these bugs to REALLY disseminate thru out bodies.
If you want to test how much pain and misery you're capable of handling then don't treat now when it could be easier to erradicate....
wait till your stressed or when your misdiagnosed with something else and they give you a steroidal or nonsteroidal medication which
will lower your immune system....then my friend you will realize what pain and agony and frustration plus mental illness can really be like...here...
You know what it's like whenever a dentist hits an open nerve in a tooth... correct?
Now try imagining that deep sharp excruciating pain at various parts of your body....ya know maybe the longer nerves in your sciatica or leg or arm....it'll throb and course somewhat comming and going and burn and twitch....you'll wish you could pull the damn nerve out by it's gangling little neck and beat it with a hammer to kill the pain...but it won't go away....the docs will give you pain medication (MAYBE) or they'll send you to a shrink because you're asking for the pain meds because you're REALLY in pain but....they'll just think now you're "DRUG SEAKING" so they'll give you an NSAID and tell you it's for pain or an anti seizure med and tell you it's for pain....well the anti seizure won't stop you from crawling up a wall and tearing the plaster off of it...and the Nsaid will make matters worse....
Yeah....then you won't be able to talk because the Bells Pawlsey won't let you form words...and the frontal lobe of your brain will be so infected you won't be able to think to form words and get them down and out of your mouth anyway....
Then try to read on what to do when you can't comprehend the sentences you're reading....having to read them over and over and over and over again because by the time you get to the end of a short sentence you have forgotten what you were reading at the begining of the sentence....
That is if you can see to read....you may just go blind right away....or crazy right away....or crippled right away....or dead....
NAW I would'nt treat it just cuz I had a few positive tests....what the heck!
Chances are a realist like you will wait till you FEEL really sick....then it will be toooooo late.....
zman
PS...If you find it a little difficult to focus on reading the block of sentences above....you're already infected in your brain....ya know what your eyes see with....you'll be getting encephylitis soon....stiff sore painful neck....
Posted by realist (Member # 15105) on :
Thanks, everyone, your information is very helpful. For some reason I kept thinking that if I didn't have severe symptoms I wouldn't have to get treated, and of course this is incorrect. Or that maybe it would just go away. (Huge denial, of course.)
I have an appt with a doctor tomorrow to discuss treatment. (Of course, my wife had to set it up because I'm too stubborn to do so.) Thanks for giving me a kick in the rear.
I was surprised at the number of people who responded that they started off with none/minor symptoms. See below for quotes:
>We treated our daughter before she was really sick
>I had mild symptoms for years
>I was just 'kinda sick' for about 1 year
>You could be VERY ill, or mildly ill. Depends upon the health of your body and the strain of Lyme [or co's ] you have.
>It seems that many people, myself included, have gone for years off and on without too many symptoms
>Some of us have gone asymptomatic for years
Posted by sixgoofykids (Member # 11141) on :
Good news stubborn one! You have to be stubborn .... that's what these bugs are!
Good luck with treatment, and stick around!
Posted by thomasx (Member # 13431) on :
realist, You said, "My Western Blot from IGeneX came back positive for Lyme, Babesiosis, and Ehrlichiosis...." I don't fully understand. Did you have several WBs performed or can a single WB show all of this?
Posted by duke77 (Member # 5051) on :
LLMD's treat until symptom free. If you have no symptoms why treat, its contradictory.
Posted by realist (Member # 15105) on :
>You said, "My Western Blot from IGeneX came back positive for Lyme, Babesiosis, and Ehrlichiosis..." Did you have several WBs performed or can a single WB show all of this?
I had one blood sample drawn, one $600+ bill, and a multiple page result (perhaps 8 pages?). I don't know if they ran multiple Western Blot tests at the lab, or if my doctor ordered multiple tests. As far as I could tell, it was a single test.
There is a separate results page(s) for each infection, of course.
Posted by TerryK (Member # 8552) on :
duke77, realist said: (I do admit if I do anything aerobic which gets my heart rate up, even for only a minute, I'm exhausted, feel like throwing up, and practically collapse. I just figured I was out of shape, though.)
Seems like symptoms to me. Also, after careful examination, he may realize that he has others that he thought were just ageing or something along those lines.
Terry
Posted by ralph (Member # 9189) on :
Yes, treat. Many in western cultures feel that we are healthy if we do not have symptoms, which is just not true. And if you have something else drag you down, then the bug may come out, reproduce a lot and play.
And thanks for the mention of OK until some heart stress - I have a friend that is a DC that sometimes gets problems with aerobic workouts and sometimes not. I now realize I should test him for the computer signal for lyme and take it from there. Does not show a physical presence but can be a good indicator.
Posted by realist (Member # 15105) on :
>You said, "My Western Blot from IGeneX came back positive for Lyme, Babesiosis, and Ehrlichiosis..." Did you have several WBs performed or can a single WB show all of this?
I asked my doctor today, and there were multiple tests. The Western Blot is only for Lyme. All the tests were done by IGeneX, and that is why I thought it was a single test.
>LLMD's treat until symptom free. If you have no symptoms why treat, its contradictory.
I asked my doc about this. She said she would keep treating until the blood tests came back clear, starting with Babesia. She would keep doing the cheaper Quest lab tests until they were clear, then follow up with the more expensive IGeneX test to confirm.
Posted by just don (Member # 1129) on :
I had vague sxs also for MANY years,,,hard to tell exactly how many,,,then about 7 years ago it whammoed me with heart probs,,,darn near died,,,doc didnt give me 6 months to live,said go home and put your affairs in order
At one time I was sucking down $2,500 worth of sx meds,,,and they werent helping. I just gave up on all the sx,kicked all the meds except for pain management and I FEEL better now,,,I think!!
NOW I take 8 bucks a month rx and a few OTC meds and call it a day!!
MY suggestion is to carefully EXAMINE the sx list for each of those,plus bart(MOST popular co) and see IF there is possible a BIGGER problem than you see today,,,It took ME ten years to "SEE" I have bart,,, primarily!!
Best test in the world,,,take some 'heavy duty' abx and SEE if you herx or respond,,,doesnt get ANY easier than THAT!!
Treat it for awhile,,,see what happens!!!(Give it a honest test,say at LEAST 9 - 12 months!!of several med combos)see if your doc will treat the co's first,,,always heard that was the PROPER way to go!!guesses of--just don--
Posted by duke77 (Member # 5051) on :
Realist,
Are you sure you are seeing an LLMD? You said that she was going to treat until your blood tests are clear. Once you make the antibodies to lyme they don't go away. There are currently no tests that indicate Lyme is gone.
Posted by laura j (Member # 14257) on :
I didn't have the brain power to read everyone's replies so I don't know if someone already asked this but if you say you don't have symptoms, why did you get tested through Igenex?
Posted by hcconn22 (Member # 5263) on :
Dear Realist-
PLEASE UNDERSTAND that many people with Lyme may present NO symptoms (asymptomatic) for years.
THEN WHAM!
AND since you waited soooo long it's too late. "It" (Lyme disease) owns you.
Trust me took me 10 years to get soooo sick that I cant even work. I used to be an executive and elite athlete. Been slowly developing problems - mental & physical.
It can and will slowly ruin you heart, central nervous system, immune system, brain and other vital organs-- with NO symptoms.
4 months ago I found out I had still had Lyme, babesia and bartonolla--- from a bite 10 years ago, that supposedly was adequately treated with 2 weeks of abx.
You are one of the lucky few that know you have a major problem-- before it's too late, unlike most of us.
By the way WHY did you get tested at an Igenix lab for Lyme and other infections if you were not sick???? _____________________________________ Treat or not?
Let me put it another way-
If you knew you had swallowed a full glass of poison, but did not feel sick -- would you rush to get your stomach pumped, or wait till you were so sick that you might not make it to the Dr or hospital?
Lyme, Babesia, Bartonolla are SERIOUS infectious diseases and WILL cause you problems-- just when, I can not tell you.
Please read what a top LLMD says;
Most people with Lyme are asymptomatic and that Lyme can have a long latency period - neurologic symptoms can present themselves many years later after the initial infection or bite.
On the other side there are a few lucky ones that have diseases and never get sick, or at least until they die from something else.
Posted by adamm (Member # 11910) on :
treat
Posted by Peacesoul (Member # 13709) on :
Good question, why did you send your blood to Igenex if you had no symptoms?!
And be very careful of all the advice, I don't think being winded from doing exercise is a sign of lyme. Good golly!
Not having symptoms could also mean your immune system is fighting the illness. Not everyone's bodies are faulted and will cave in to illness. Heck, our bodies are laden with cancer cells yet we all don't get cancer. That's like saying lets do chemo to just in case! Our immune system's fight most infections.
This is just my humble opinion, if I were tested + with no symptoms, I would go the all natural route and just build up my immune system and make sure my body stays strong.
Abx in many cases do more harm than good.
Please speak with an LLMD before making any decision.
Posted by realist (Member # 15105) on :
>why did you send your blood to Igenex if you had no symptoms?!
I guess I had been mentioning to my wife for quite a while (a few years?) that I've been feeling fatigued, under the weather, not quite right, etc. It's always been sort of an annoying thing that developed gradually, and for the most part I ignored it and chalked it up to getting older, being out of shape, etc. Since my symptoms were not severe, and since I (like everyone) had a very busy life, it was easy to put health on the back burner. A few times I collapsed from some yard work, had dry heaves, etc., couldn't move for an hours, but figured I just got dehydrated. Occasionally I would have sharp shooting pains in my hip bones, but all my friends said they also had unexplained aches and pains as they got older. Same with the occasional brain fog or word loss, I would laugh it off to age. I did notice a gradual loss of coordination (tripping, dropping things, etc.), and for that I became concerned since I had no plausible explanation.
When I wasn't able to ride a horse (cantering) for more than 30 seconds without feeling faint and nauseous, my wife pointed out this was definitely not normal, to the point of being downright alarming. So I finally got concerned enough and went to a primary care physician for a physical. The ELISA test for Lyme came back negative. I also saw a cardiologist, thinking I had a heart problem. They were planning on giving me the treadmill test.
My wife, who herself is currently battling chronic lyme and was misdiagnosed for many years, made the appointment to get the IGeneX test and dragged me into the doctor's office. If I had known beforehand I was about to drop $600+ on a blood test, I probably would not have agreed to it.
When I said "for the most part I feel fine" I meant that I didn't have symptoms that were as alarming and severe as many that I read on this board. Since I'm around 40, have terrible nutrition, don't exercise, and have a high-stress job, I figured my physical state was, well, "normal".
Several of my friends who have been treated for lyme said they felt absolutely terrible after the tick bite and immediately went to see the doctor. That never happened to me, as far as I know. (Unless I mistook it for the flu, which I got a couple times.)
All the credit goes to my wife, who unfortunately had to leave her job on disability and has been battling chronic lyme for years. If it weren't for her, I would continue being in denial until the symptoms became really severe.
Thanks for all the responses. I start IV treatments with MTE9 for Babesia in one week. And I realize I have to take this seriously, regardless of the symptoms, or lack thereof.
Thanks again.
Posted by Peacesoul (Member # 13709) on :
Realist, so basically this proves, every man needs a good woman....haha!
Well the positive thing is, having lyme will put you on the right path to better health. It forces you to take a look at your nutrition and overall health.
Please make sure you eat right, try to exercise and get strong.
Good luck with the treatment and please keep us posted :-)
Posted by realist (Member # 15105) on :
>so basically this proves, every man needs a good woman....haha!
In my case, absolutely!
Seriously, though, what is so ironic about health is that sometimes the most serious illnesses have no apparent symptoms. Cancer and Lyme come to mind. And by the time there are symptoms, the illness is very advanced. Isn't the body supposed to use pain as a warning signal?
I once switched toothpastes and got over a dozen baby canker sores the next day. I practically ran to the doctor in panic, given that a single full blown canker sore can be terribly painful.
Yet my early Lyme symptoms were so easily dismissed that if not for my wife I could have continued to dismiss them for years. If it weren't for resources like this board I would not take Lyme seriously, because if you ask all my friends, Lyme is no big deal.
This experience really makes me wonder how many people may have Lyme and not realize it. It's quite scary.
>Please make sure you eat right
Yup, just started the no-carb plan and cut out all sweets, flour, and grains. Boy, is that difficult! The cravings for the first 10 days were intense! All I could do was think about food all day. I just made it to 15 days, and I'm (finally) over the cravings. But now I have insomnia, probably because I don't have as much seratonin/melatonin. I sure hope the insomnia goes away soon.
Posted by Parisa (Member # 10526) on :
Why are you no carbing? Is that temporary? Will you be switching to a low carb version soon?
Depending on what is going on no carb can be very hard on the body. (I'm not giving you permission to go eat a loaf of bread right now though). Low carbing is a much healthier option.
The Schwarzbein Principle has a very healthy low carb plan.
Posted by hokie (Member # 14720) on :
I had very mild symptoms for a year. Other symptoms have gradually emerged, but compared to many people are very mild.
Milder than yours, yet I'm certain I have Lyme.
I live right outside of Leesburg; I was wondering why your LLMD was going to try IV first? Will your insurance cover this, particularly without trying orals first?
PM me if you would like to know who my LLMD is. Top 50 in Washingtonian Mag. Good luck. I know it's hard to make the decision to treat when symptoms are fairly mild. I still feel weird about it sometimes.
Posted by hokie (Member # 14720) on :
Also, you said your LLMD will treat until the blood tests are clear?
That may never happen. You may retain measurable antibodies for life.
Posted by laura j (Member # 14257) on :
Realist,
I'm glad you are getting treatment before your symptoms get more serious. From what you explained of the symptoms you have had, that's how I started out.
It took me 7 years before I completely crashed. I noticed strange little things here and there for about 4 years after the tick bite and then for the next 3, extreme fatigue and more weird things and then CRASH, full blown Neuro Lyme.
Posted by Mathias (Member # 5298) on :
quote:Originally posted by duke77: Realist,
Are you sure you are seeing an LLMD? You said that she was going to treat until your blood tests are clear. Once you make the antibodies to lyme they don't go away. There are currently no tests that indicate Lyme is gone.
This is a very good point. But here is something that I have never quite understood. Why does the Western Blot change over time with different bands appearing and other bands disappearing?
You would think that you would develop antibodies and present with certain bands and they should stick around.
An IgeneX positive WB also doesn't carry as much weight was a CDC positive WB except with an LLMD which is very unfortunate.
Posted by heiwalove (Member # 6467) on :
you've already gotten great advice, but i'll just add my two cents as well: TREAT! you're so lucky you know what's wrong with you NOW, before the symptoms are debilitating. if you don't treat, sooner or later, lyme will knock you on your butt.
i believe i've had lyme since early childhood (i'm now 27). i functioned quite well with only vague, minor symptoms until age 24, at which point i crashed hard, was bedbound for months, and nearly died.
so please, do yourself and your loved ones a favor and treat this now, before it spirals out of control. your treatment will likely be easier and much less painful than those of us who were/are severely, debilitatingly ill.
best of luck.
Posted by realist (Member # 15105) on :
>Why are you no carbing?
The great thing about this board is you all make me think! I was told that carbs are bad by several sources: Dr. Mercola article, Dr. Burrascano paper, and my own LLMD. I hadn't discerned the difference between no carb, low carb, etc. All I can say is that my allergies are now gone and I feel better.
>Also, you said your LLMD will treat until the blood tests are clear?
I had been thinking about this since another poster asked the same question on this thread. I may have misunderstood my doctor, but I'm pretty sure that she said she would keep treating and testing until the test results were negative.
>I know it's hard to make the decision to treat when symptoms are fairly mild. I still feel weird about it sometimes.
I can relate, of course, and continually have to remind myself how bad Lyme can truly get, and reading the stories on this board is a powerful reminder.
>and then CRASH, full blown Neuro Lyme
It is helpful to me that so many people related stories of seemingly falling off the cliff of health with Lyme. Sometimes I start negotiating with myself that I could wait until I feel a little bit worse, and then I reread all the stories and get motivated again.
Posted by atheana (Member # 14273) on :
Hi! I am having alot of brain fog tonight,so I hope I am making sense.
I believe you said your wife has chronic Lyme..do you think it could be sexually transmitted?
Just a thought. Atheana
Posted by groovy2 (Member # 6304) on :
Not treating lyme is like diving in to a swimming pool with no water-
Not bad till the end - Jay -
Posted by laura j (Member # 14257) on :
I had strange little symptoms for a couple of years after my tick bite. Then it got increasingly worse for 3 yrs. after that until I completely crashed with full blown neuro lyme.
I don't feel I'd still be here if we didn't figure out what it was when we did.
You have the advantage of knowing what it is early on. You should probably get treated.
Posted by Clarissa (Member # 4715) on :
Here's the thread from my post about to treat or not to treat my Babesia:
No carbing is for the candida yeast problems most of us experience from being on long term abx.
We all know that yeast overgrows when you take lots of abx and sugar and carbs feeds yeast.
So the diet is VERY important along with taking lots of heavy duty probiotics and something to kill yeast.
If not, you can have lots of side effects from yeast overgrowth.
Its nasty! Posted by rachellemarie (Member # 16419) on :
In my research Lyme can be sexually transmitted. I don't know that there is any scientific proof of this yet, but from reading many Lyme articles/publications it is highly likely.
Perhaps that is why they say alot of people with Lyme don't get the bullseye...perhaps some people unknowingly contracted it sexually??!?!?!?
Posted by sixgoofykids (Member # 11141) on :
I never got the bullseye and contracted Lyme prior to becoming sexually active.
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