My doctor doesn't think I should have this kind of pain with, Lyme?

My pain is getting worse, also because I have to work part-time to keep my medical insurance , I must work. My doctor today said , the pain I am having can't be from the Lyme, she is sending me to another neurologist, the last one just told I had stress and sent me home. Has anyone experience the worst pain in their life with lyme?

I have had two kids, and I can swear to you this pain I have is double that. I know you all have experience , and I need some answers.

Thank you.

Can you describe your pain and tell us where it is?
This is how I would have to describe my pain - I had horrific bone pain, but also muscle pain and cramping/spasming, tons of headaches with migraines being frequent. I had a lot of skin pain as well for a time - I couldn't wear hardly anything!

My pain levels are a lot lower now, with most of the pain only being off and on now - except the headaches, dang it! They have come back again. :shake head:

Different pain can be from different infections, is why I ask. Have you been properly evaluated for co-infections? Lyme rarely travels by itself.

I forgot about the spasm , I get them mostly in my legs, they get really bad also, it kind of feel likes I have fire under my skin.

That was my thoughts also, either I have it or I don't.
I am taking up to five baths a day not detox baths, but the warm water helps me, and I am detoxing also. Today I just feel drained, and my nerves feel like electricity is going through my body. I did speak to a Lyme doctor office , I didn't realize that the doctors don't take the insurance because most insurance company's don't believe long term Lyme treatment is necessary. I don't know anyone can afford to pay for a doctor without insurance, and it's seems to me a great injustice has been done to Lyme patients. If we were addicted to drugs, we would get social security and free medical cards, but with Lyme is a different story. I almost get the feeling that for some reason , insurance companies do not want us treated, and I am trying to figure out why? This whole thing does not make sense to me, I am pretty strong willed and I will figure out someway to get better. Thank you all for your help.

I was thinking the same thing, why hasn't the government stepped it, what are they hiding?

It just does not make sense, from what I have been reading to the reaction from the doctors, why wouldn't they treat us all the way through.

As for remembering things, I have had to keep a notebook and pen with me for months, so I don't forget. I am 36 years old, and can't remember where I put my car keys, or how to get to different places , that I have been to for years. I thought at first a couple years ago I was going crazy, I really did. My symptoms did not make sense to me, I would research every symptom , try to figure it out, and every thing I read about Lyme, It didn't fit. I never been bitten by a tick, do not have the circle rash , and I never did.

The thing that keeps getting me is this, I moved into my house five years ago, the guy before me had (Ms). Not long after I moved in I started having read symptoms, the burning and tingling, horrible headaches, you name it I had it. I have even done some research on (Ms) thinking maybe something in the house was making me sick. I am still not 100 percent that is not the case, only I would think my kids would be sick as well and they are not.

I am not sure what area you live in, but you have a been a big help to me , and so has this website. I felt so depressed before, I couldn't get myself out of bed, and with the pain it just made it worse. I am going to continue to look for answers. I won't give up, I want my life back.

Another thing that doesn't make sense to me is , where the Lyme was originated , all the people in that area couldn't of got bitten by a tick, Is has to be coming from somewhere else as well. I was thinking maybe the ground? The water? I am not a super smart person, but even to me it does not add up, it just doesn't.


Someone should have to pay for all the suffering, if they lived on day in our bodies they would understand, maybe they would step back and allow us to be treated .

Justme,
These diseases are now so common and wide spread that ticks are not the only ones carrying them - now we have to worry about fleas, mosquitoes, biting flies (deer & horse flies among others), and other insects that bite, draw blood and live to bite other people and animals. Although, I do have to say, a tick can quite literally be as small as the period at the end of this sentence, so if it was on someone's head or back, they might never see it. Really!! I've plucked some seriously small ticks off of me!

I've had ticks attach all of my life, and I've never been on the Eastern side of the US, so these infections have spread far and wide. I was most likely infected in California &/or Idaho by the time I was 7 years old, and then we moved to Arizona, then Arkansas- which is where I am now. As an adult, I've stayed in several of the Mid-west states,so there's no telling when I was infected with what or where.

I've never had the bulls eye rash myself, and didn't test positive until I had a full 12 months on abx back in '07, but I've had most every symptom on the Master symptom list for Lyme except the worst heart issues, and uhmm, testicular pain, which would have been a good one to have, since I'm female!!! Giggle! I used "Google maps" and would print out a map of everywhere I needed to go - dr's offices, grocery stores, pharmacies - you name it! I had to find ways to function and with help, I did. That's all I'm trying to do here, although I thank you tremendously for your kind words!!

I did the notebook thing for a long while as well, I kept loosing the sticky notes!! I had to wear dark glasses, a hat and even use a MP3 player to go into stores, as all of the people, lights and sounds would just over-stimulate me sooo badly!

Shabbychic has a point as well, your pain could be from either Bartonella or Babesia as well as Lyme. I like to use Dr. Jones' website (www.drjoneskids.com/) to get a quick list of the more common symptoms of each disease, plus he's got a lot of good information there as well. It's all written so that it's easy to understand too!

Lyme rarely 'travels' alone, usually there's one or more other infections that get passed as well, so you will want to consider that as you try to figure out what all is going on for you.

I hope this helps some! I know how darned frustrating all of this can be.

Did you start something new? Or did you increase you dose of something? These are the things that most commonly bring on a herx.

Herxes are different each time they happen for some, different type of symptoms, different length of time, and they frequently will differ in the strength of the symptoms.

Are you currently detoxing? If so, it's time to step it up some. If you haven't started detoxing yet, you need to start. There is a really good explanation of what to do in the "New to Lyme?" thread, but basically you need to start dry brushing your skin, and do soaks in Epsom Salts and Peroxide.

If your symptoms are strong, and you haven't been detoxing, I would suggest that you start off with the foot soak. Get a tub, or a pot even, add 1 gallon of skin temperature water, 2 cups Epsom Salt, and 16 ounces of hydrogen peroxide. Do not use hotter water, or use more Epsom Salts or peroxide than what is suggested, as it can set off yet another herx. Stay in the water for only 7 to 10 minutes the first time. That way you can see how your body is going to handle detoxing.

Be sure to come here for more help if you have troubles, but be sure to start a new thread so that other members will know that you need help right away. Be sure to let us know how things are going once you get things back under control.

hi just me..
i still have not had a positive diagnosis although some bands were + on recent igenx test.


i have pain attacks..is this herxing.?? I still do not know what herxing means...
it comes on fast and my whole body feels like electricity running though it..everything gets tight and hurts. joints muscles and i cry. no headache when this happens but my neck/spine hurts too

other symptoms currently.
ringing in the ears, spelling words with a pen, like today i wrote visti instead of visit.
this happens a lot. blurry vision (am on cymbalta nd maybe that is a reason. going to wean off)
i have had smell issues. thinking i smell something burning and no one else does.
i get migraines but have in fall and spring for 20 years.

i am 50 and live in VT.
i have been bitten by lots of ticks since i was a kid.

saw llmd and it is cash. ***

my ID doc does not believe it is lyme and is finally going to get me a refreal to a neurologist after seeing him for 10 months.
My pain started with my legs and knees years ago...off and on lots of leg and foot cramps.

then left ankle mid Aug 2011
then the other ankle.. stabbing pain like someone putting a ka bob skewer in my bone. couldn't walk too far.
then my wrists started then my shoulders, hips, elbows, back spine neck.. all last fall and winter i had the attacks almost everyday. no docs knew what to do. denied pain meds too!

i swear it is lyme but no one i seems to think so.

my ID doc says he is a lyme specialist and i do not have lyme.

i did get a doc llmd to see me and paid 425.00 , doesn't take my insurance. and he gave me ABX for a month.. after the first 72 hrs i started feeling a little better , by the next week i was soooo happy!!!! and i had 10 days where i felt myself with no pain. i had a clearer mind..i could jump up and down!
i was so excited,
then slowely the symptoms came back although not as bad.
no my attacks are like once a week or 1x every 2 weeks

today my knees hurt and thigh muscles.
can't remember anything... i have to say to myself when i go to get something..
"don't forget to get a glass of water...over and over ..

i have such fatigue.. sometimes i sleep for 10 hrs and then have to go back to bed and get up at 2PM

sometimes i can't sleep at all.
IDK
we need better care that is for sure.

id doc is going to get me a referal for a neuro and MRI soon.
he gives me pain meds but doesn't want to. he can't leave me in pain like last year when i was seeing a B#@^& lady Dco i fired.

Your ID doc is a specialist, just not of evidence-based Lyme treatment. ID docs are notorious for not recognizing these diseases and for not treating well or long enough to actually put them into remission. No one really knows why they are doing this, other than it's the "party line" - that's what the IDSA (Infectious Disease Society of America) tells them to say and do. It's best if you find another doctor, Guitargal, so that you can get the proper treatment and not end up with a bunch of permanent damage from these infections not being treated properly.

Unfortunately, chances are pretty good the the Neuro that your ID doc is sending you to won't recognize your Lyme disease either. It wouldn't make sense for a doctor to refer someone to another doc that didn't think the same.

For more information on the 'battle' that is raging about Tick-borne infections and their treatment here are a couple of links:
This is a link to Lyme Disease Association's blog from a gal that understands the ins and out's, Lyme Policy Wonk is the name of the section:
lymedisease.org/news/lymepolicywonk/index.1.html

May I ask why you didn't return to the LLMD? One month is far from being enough treatment for these infections. If you want to use abx for these infections, then I would suggest -as Justme has - that you get back on them. Make another appt with that LLMD that you saw, so you can get back into treatment and get your health back!

"Herx" is short for Jarrisch-Herxheimer reaction (know you know why we just say herx!! LOL!!) It's a healing crisis, normally a short period where the body is overwhelmed by toxins that are put off by the bacteria. It can happen with more infections than just Lyme, but Lyme patients seem to experience them a lot more frequently. It's an increase of symptoms, or the appearance of new symptoms due to the die off of bacteria. (www.anapsid.org/lyme/herx.html)

A herx is not something that you want to allow to get really strong, or last more than a couple of days, as when the body is in crisis, healing will either slow down or stop, depending on the severity of the herx. A herx is different for each person, and what to do to help ease the symptoms differs for each person as well. The one thing that almost all do have in common is the ability to ward off at least some of the herx by detoxing. How to detox is covered in our "New to Lyme?" thread - third post down I believe.
www.encognitive.com/node/5768

Hang in there Guitargal!! Your learning, and as you learn more, you will be better able to control some of what your symptoms!