Not sick enough for Lyme?

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Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 6/29/2009 8:01 AM (GMT -7)   
Hi everyone,
 
I am wondering if it is possible to have a "mild" case of Lyme? Nearly all the stories I've read are about people with symptoms so extreme they are nearly bed-ridden.
I have had a bunch of different things going on over the past two years, and about a month ago, I started to wonder if it was Lyme.   I went to a lyme-literate naturopath, and she clinically diagnosed me with Lyme, but I'm still waiting for the test results. But in the meantime, I've started to doubt whether I have Lyme, because I don't think I'm sick enough. My most significant symptoms are:
fatigue- I can force myself to get out of bed in the morning, but I can easily sleep 18 hours a day, if I get the chance. I also have difficulty staying awake during the day, no matter how much sleep I've had (I almost lost a job because of this)
Joint/muscle/tendon pain- I have been struggling with achilles tendonitis for two years, shin splints (which came out of nowhere) for a year and a half, tennis elbow, carpal tunnel, and more recently, sore pretty much everything. BUT I can still be fairly active- it's just that my energy level, and pain are more in-line with my 50 year-old parents than my 20 year-old twin sister.  The problem is that this really comes and goes- there are times when I feel absolutely fine.
Muscle twitches/tingling- this just started in the last 3 months. Two weeks ago, it was so bad I had trouble sleepin (but the muscle twitches aren't visible unless they're on my hand or face). Now, they are back down to what they where like at the beginning of June, for no apparent reason. I did get B12 shots 3x a week for two months last summer, for something un-related, but I'm now wondering if it could have slowed the progression of this symptom...?
Brain fog et al- this has just started up the last 3 months (I think) as well. At it's worst, I had two (only 2) periods of disorientation, where I didn't recognize my house, and where I got lost 100m from my home, but mostly it's just forgetting words mid-sentance, or getting easily confused. I still have my job though (it's not a very thought-intensive internship). It is possible I had episode of brain fog prior to this, as I went through a period at school where I felt as if I had become dyslexic, and I really struggled.
-Depression/mood swings
Vision problems- floaters, and difficulty reading and other weird stuff
I have more symptoms ( I had 50% on the ones on my doctor's list), but the ones above are the worst. Up until this year, I just thought that I had un-related problems...My school problems were because I was depressed, and my achilles tendonitis and shin splints were just bad luck (despite two years of stretching, icing etc.). My family doctor still feels this way (he thinks the twitching is stress, and the tingling is all in my head), and he doesn't think I'm sick enough to really worry about other stuff...
So now I'm torn. My lyme doc thinks I have Lyme, and will still think so if the test comes back negative. She had me start treatment already, and I had two days where the brain fog/mood swing/joint pain was quite a bit worse...but I wonder if that was just sort-of an anit-placebo effect. She told me about "herxing"- so maybe I imagined that I herxed. And the treatment is really, really expensive. Also- because my symptoms are so mild, I worry I will not even know when I am better and can stop treatment. Part of me thinks that if this is Lyme, I should treat it now, while it's still mild. The other part of me agrees with my family doctor, and thinks I should just wait and see. If my symptoms get worse, I can get him to test for MS or I can go back to my naturopath, and if they don't get worse then I know nothing is wrong. I wouldn't be so torn, except that my doctor laughed in my face when I mentioned Lyme...and I don't have symptoms nearly as bad as anyone I can find. What I really wanted was to go to my doctor to get a second opinion, but he doesn't believe in Lyme, and so he can't really give me a second opinion, because he won't consider Lyme at all.
  Sorry for the long post! I'll get to my questions now.
1) Is it possible to have lyme with mild symptoms
2) Does it sound like I have Lyme? (You guys might not be doctors, but you know about Lyme)
3) What should I do? Should I be trying to get treated right away? Or should I let it sit awhile, and see what happens?
 
Sorry again for the length!
 
Nicky

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/29/2009 9:19 AM (GMT -7)   
Hi Nicky,

First I want to say that your symptoms ARE significant...it's very easy to minimize them when you first come here and see some of the really bad cases right up front.

You have a lot of classic lyme symptoms. I'm sure ticker (a member here) will be along shortly with the symptom list. The thing about lyme is that there are so many other diseases that have the same symptoms. For almost all of us, it is trial and error with treatment. Some of us have definitive test results; some don't. Some remember a bite, a rash - some don't. Personally, I am trying lyme treatment (without a positive test result) because I have nothing left to lose.

In answer to your first question, lyme comes in all shapes, sizes, and colors. A 'mild' case could just be how lyme specifically chose to attack YOUR body. It sounds quite debilitating to me, to be honest! It will be interesting to see your test results. I always recommend that if you think it could be lyme, try treatment regardless of a positive or negative test. Tests and doctor appointments are expensive, but some oral antibiotics are not too bad. Doxycycline is typical for treatment, and it won't break the bank. I'm on Biaxin now, and I take the generic which is about $60/month. Depending on what your doctor suggests, you can always say that cost is an issue and start out on a less expensive drug.

Let us know what your results show. It sounds like you'll be getting them back soon.

Ask anything here - you'll find a plethora of information and some very educated people!

Good luck to you! :)
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/29/2009 9:33 AM (GMT -7)   
LK-

Some people can't take out loans. There isn't always a way to get costly treatment. I was suggesting to her that if cost is an issue, there are ways to get around it until you figure something out, if you can.


Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/29/2009 10:00 AM (GMT -7)   
Nicky,
Your symptoms sound a lot like mine. Infact my immune system fought the Lyme off for 5-6 months with only a few symptoms. At about 8 months they got bad. But sound a lot like yours. I was always tired. When I wasn't at work I was sleeping on the couch. The pain was bad. But never sent me to the emergency room. Brain fog and depression were bad. I just felt like my head wasn't screwed on right. (I'd stop for a coffee and leave with an empty cup, forgot what I was saying mid sentence, forgot things unless I had a note pasted to my head.

When I first saw my LLMD we talked about how it effects everyone differently. Just because you are not bedridden doesn't make your illness any less real. I actually felt a bit guilty that I didn't have it as bad as others. But what I experience sucks,too. I have been in treatment for 7 months and still feel bad sometimes. I have improved but understand it will take awhile.

I think NOT treating because your symptoms are mild is a mistake. I would hate to see it get worse for you and have a harder time treating it. I agree about the meds , there are some that aren't too costly that could really help you. Good luck with your test results.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 6/29/2009 10:19 AM (GMT -7)   
Thank you for your replies!

Jendays- my problem is that I live in Canada in an area where the doctors don't believe in Lyme disease. The research I have done so far makes it seem like I will probably have to go to the US for treatment- which means the abx wouldn't be covered. But- someone had also told me that the abx cost $4000 a month! The naturopath I am seeing prefers abx for treating Lyme, but cannot prescribe them. Currently, she has me on a herbal/natural route, which works slower, and is very expensive. But Biaxin is the abx she would recommend for me, and if it is only $60 a month, than I can afford that.
I just felt a little crazy, spending all this money on testing and treatment when my family doctor didn't even think I was sick. My parents are willing to help me, if I cannot get enough money to cover it all (which would be true, if I have to go to the states), but I didn't want to that to them if it wasn't necessary. Also- all of this has happened very quickly. I just feel slightly overwhelmed by all the information. And because of the brain fog/mood swings, I'm constantly second-guessing myself. I'm doubting my ability to make rational decisions.
My test results come in this week. The naturopath is very hopeful (ha ha) that they will come back positive. Her theory is just that my immune system is better at fighting Lyme than most people, which would make it more likely that the test comes back positive.

Lymekiller- I know the money thing shouldn't matter, but unfortunately, it does. I've already spent about $10000 trying to fix my various symptoms individually (it might not sound like much, but remember, in Canada, health care is supposed to be free!). I am a university student, with no hard assets, so finding a loan is difficult. However- if abx aren't $40000 a month, then I might be ok (there was no way I was getting a loan that big!).

Nicky

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/29/2009 10:45 AM (GMT -7)   
Nicky,
My immune system was fighting the Lyme , too and my tests came back negative. The one I had done through Igenex was also negative but more bands popped up positive and IND. Don't rely solely on your test result. It is a clinical diagnosis for most because the test stinks. Let us know how you are doing. Atleast you are in good hands for now with your naturopath. A lot of doctors here in the states to not believe in chronic Lyme either. I think that is why most end up "chronic" because we were sent down the road with a doctor who just didn't "get it."

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/29/2009 12:12 PM (GMT -7)   
Nicky D, i belive i was infected 2000 to 2002 i was doing well for many yrs. then i started with 1 thing after another. till i blow out my knee, had suregery on it and then everything started going down hill from there.

i had a MRI done that showed 10 to 15 lesions on my brain. 1 of the possable causes for this was lyme. so i was tested for it and sure enough it came back positive for IgM. my PCP does not belive in lyme or knows anything about it.

he sent my to a ID. who why holding my positive test said we have no lyme in this part of Tx. and that i didnt have it. yes this is veru frustrating. so you can go to 30 different Dr.s and if they dont belive in lyme they more then likely will se you dont have it.

he is the link to the Canadian Lyme disease Foundation, http://www.canlyme.com/bottom.html
you will have to copy and past sorry. i belive this site may help you.

i am also a firm beliver that the longer you wait the longer lyme has to do more damage to your body.

in my prayers
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/30/2009 12:18 PM (GMT -7)   
bumping this up so Nicky D can see it.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/30/2009 2:42 PM (GMT -7)   
Nicky there are 300 strains of lyme. You symptoms sound very bad to me for someone who is so young.
You are not 95.
I will speak only for myself. But I started out like you in 2003. I was just sort of "out of it..." Lost my game if you will.
But the next summer...04 I got bitten again...and it hit me very hard, along with two of my young daughters.
I began to still slide downward. We were all sure that I had alzthemiers. And all the other stuff....photo sensitivity, vertigo, fevers, migrains....and on and on. But it was not until last summer....when my daughter got ticks on her again..that I went down fast.
I think that getting it over and over again, along with a already weakened immune system just knocks you on your ass.
There are three ways that I know to get better.
One is to do herbal treatment for about 6,000 in kansas for two weeks.
Two is to go to a so called LLMD and get a slint in your arm and get big doses of abx for about a year and a half. You will spend about 3-5 grand a week. get much sicker..and it is not cosidered legal by the USDA or the FDA or the CDC.
Three....do alternative medicine, cost around 20,000 to 24,000 for 6 weeks. Not including lodging.
Taking large doses of supp. and immune support and hitting your whole foods vit. section is imparitive for your fight against lyme.
You body can kill these pest itself. But your body has to be armed to do so.....get your immune system in high gear.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/30/2009 4:59 PM (GMT -7)   
LK- treatment is very expensive. That is why most LLMD's don't take insurance. Patients that need IV can cost up to $12,000 a month. That is why the IDSA claims there is no such thing as chronic Lyme. The panel members have ties to insurance companies. If the IDSA denies the disease the insurance companies can deny treatment.

6 weeks of mepron/zithro runs about $2000. Alternative meds are outrageous. It is quite an expensive disease to be stuck with.

My daughter was born 7 weeks premature and spent 4 weeks in the hospital. She was a healthy premie and didn't require too much help. That bill came to $54,000. And that was 9 years ago. Thank goodness all covered by insurance.

Marthas vineyard above was correct.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/30/2009 5:27 PM (GMT -7)   
Hello Nicky,

I am so sorry you are having to deal w/ such a 'mess'! Please believe me, I sympathize w/ you! I know how overwhelming it all feels -- all the info to sort thru, all the stuff you've gotta do.

I have never felt as sick as most of the folks here, yet I knew that something had been wrong for the past couple years. I looked up Lyme many times but because I was never sick enough, I always shrugged it off. Until an article came out in a local paper that hit the bull's eye! (npi) Then, somehow I knew.

I still do not know the answer to some of the questions you are asking, and which I ask, myself. If I do not get treatment, will my body eventually fight it off, since I KNOW my body is 'fighting' (hot flashes, fevers, etc)? Or is that too great a risk?

Anyway, I will post more on this later when I have time, but I had my first visit w/ an LLMD today. He had been w/ a large Family Practice here for years until 2 of his children almost died from tick born infections (1 lyme, 1 Rock Mt). And then he left to devote more of his time to Lyme (and the rest of it to ER). He states that he receives consultations from Dr. Burr, he sounded up on everything except for the info on LDN that I took to him.

He said that he may decide to treat simply w/ weekly shots of penicillin. Powerful, cheap, no stomach issues, effective, etc.

For those w/ no allergies and who respond well, maybe this will turn out to be a viable option. You'd just have to find a Dr who will give you those injections. Again, I'll post later, but we have not yet discussed a treatment choice and won't, until my labs are back, ESP since I am not that sick.

I agree w/ Martha on building the immune system. I think mine's been strong considering what's been thrown at it. But right now, it may need a 'boost' (abx), which I would probably accept and definitely supplement w/ vites, diet, probiotics, and for example, I have a Chi machine.

Nicky, like you, I have no loan options at this point. My eval w/ LLMD was out of pocket, but was reasonable ($160). I had to borrow that. And I intend to get as much as I can out of my insurance. If I gotta start w/ shots of penicillin, that's what I'll do.

You recieved a clinical diagnosis for Lyme. I don't pretend to know you or your Dr, but your symptoms do seem to support it. At least you have some test results coming and those may be significant. I am not a Dr or a specialist of any kind, but I do not believe that not being sick enough means you do not have Lyme. Your immune system may be trying to do it's job, it may be trying to go into remission ('hiding') -- all kinds of stuff. YOU knew that you didn't feel 'right' or well, right?

No matter my health, I will not have any $6000 to spend on this. (Ins is part of the reason I work!) I think that we will figure out how to do the best we can w/ what we've got, right?

You're in the right place. There's a ton of folks here who care and who are willing to try to help you.
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 6/30/2009 5:55 PM (GMT -7)   
Hi again,

I think I may have been in denial a bit... I was so used to just ignoring everything that I didn't really realize how much was going on. It's kind of ironic- I was desperate to figure out what was wrong (so I could fix it), but when I do find out, it turns out to be something really hard to fix.

Still no test results- but my naturopath might be away. I really, really want them to be positive. Because the alternative is either Lyme with a negative test (which means I'll have trouble getting anything treated here), or scary things like MS.

Lovelabs- I missed your first post. I have the same problems- but they only really popped up recently. I hate the darn brain-fog! I'm used to my brain working well! Today it was so bad I was scared to drive home from work.

+Lyme- thanks for support. I hope you can get a lot out of your insurance! I'm not in quite as dire straights as you- I'm ok for now, it's just the long-term picture that's iffy.

I'm already doing immune system boosters and supplements- I also agree with Martha (and everyone else) that a strong immune system is key.

I've done more research, and got my thoughts more together, and I feel that antibiotics (not necessarily IV though!) is the best route to go. I'll be eligible for student loans (provided I stay in school), and my family can help me out (if I have a student loan, it won't be such a burden for them).

So I might be able to piece together whatever treatment I can get here with treatment in the states (or the natural route I'm on now) long enough to kick this thing. Or maybe I can find a doctor here who will treat me...

I'm definitely going to do whatever treatment I can find. I've got appointments made with a few different doctors (including a second appointment with my family doctor). If my test comes back positive, I might be able to convince one of them to treat me. I'm certainly going to try!

So I guess I'll just have to keep waiting for that darn blood test for now!

I had something else to say (I think), but I don't remember. I'll come back when I do.

Thank you all so much for the advice and support. Maybe someday insurance companies will get their buts in gear, and we won't have to worry about how to pay for this!

Nicky

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/30/2009 7:30 PM (GMT -7)   
Nikki, I am so sorry you have no Dr to help you right now, keep looking. I live in Oregon where Every Specialist I have seen says no to Lyme. I have tested positive 8 times. I have had to fly to Conneticut to get my Antibiotics. Most of the money given to me by family, It has been Financly ruining to us. This supplement that supplement the list goes on it seems like it never stops.
 
The whole MS thing, I have been diagnosed with that by about 8 Oregon Drs. They think something is wrong with me for still pursuing Lyme. MS is a clinacle diagnosis just like Lyme. Yes I fit all there criterea for MS but so do I for Lyme. I got better a few years ago after IV antibiotics all MS lesions in brain were gone.
 
I was better, we decided to have a baby and stay on low dose antibiotics. Everything went very well, We have an almost 1 year old healthy Baby Girl. A few months ago I stopped my antibiotics. I did not think I needed them anymore I had been better for 2 and a half years. And poof it's back but worse this time.
 
Now off to Conneticut I go again, it is ridiculous the amount of Money we have to spend to get better. Please keep studying what's gong on Drs don't always no what there talking about. You need to take care of yourself. Good Luck. 
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007

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