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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme came back?!

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Author Topic: Lyme came back?!
elley0531
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Hi I'm new, and have a few questions.

I had Lyme when I was a kid. It got caught fairly late I guess, In the beginning I had a high fever/flu, that went away, then other weird issues: migraines, eyes would cross for periods at a time, ringing in ears, fatigue. Eventually my joints ached. It got to the point that my neck stiffened up and was immobile for 3 days. That went away, and about a month later I went to bed 'normal' and woke up in the middle of the night with my knees frozen and immobile (scary for a child). After being misdiagnosed for everyhting under the sun my new doctor tested for Lyme. It was positive and I was on antibiotics for about a month and a half. Its seemed to go away and until now I thought I was cured.

However, within the past year odd things have been happening again. Strange neck muscle problems, TMJ stiffness and pain, then about a week ago I developed an achey back which would travel from low back, to mid to shoulders, my neck got stiff for a while, sometimes my spine feels like its burning, the area where my ribs attache to cartilidge is inflamed and I can hear it crackle from it when it press on it. I'm getting odd muscle spasms, and my back pain is all over. Bones are cracking, especially in my neck, and now my finger joints on both hands are becoming sore...I am also quite fatigued. The aches waxe and wane, which makes me think of Lyme.

I was just wondering what the likely hood is that my Lyme is coming back. I was tested in May and it was negative, but it was only a simple blood test. The only reason I didn't think of Lyme right away was because this all started when I was on amoxicillin for a couple weeks for wisdom tooth removal...so I thought that would'nt allow the Lyme to emerge since its a broad spec antibiotic.

Sorry this is so long, I just want to find out whats wrong with me...I'm 26 and overall a healthy person.

Thanks in advance [Smile]

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tickedntx
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I am not a doctor, but...

I think that most Lyme patients would look at this as a herxheimer reaction to the amoxicillin - meaning you are still dealing with Lyme.

If you are not familiar with the Jarisch-Herxheimer reaction, this refers to an increase - or occasionally onset - of symptoms in response to antibiotic treatment. The medication is killing off bacteria. As they die, they release toxins which cause/exacerbate symptoms.

Remember that borrelia (the pathogen which causes Lyme) can lie dormant for a long time, or your immune system could be keeping it at bay preventing symptoms until you experience some sort of stres/trauma (physical or emotional) which weakens the immune response to the point that you become symptomatic/sick.

Again, I am not a doctor, but I would highly recommend consulting a Lyme specialist as soon as possible.

--------------------
Suzanne Shaps
STAND UP FOR LYME Texas (www.standupforlyme.org)
(Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected])

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elley0531
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wow I had never heard of that. I'm trying to find a doctor in NYC, perhaps I'll check the other forum on this site for one. I stopped taking the amoxocillin as soon as I started to feel ill, but its been over 2 weeks since then, and my body is still not normal.
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tickedntx
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I understand that there are some good docs in NJ, as well, so don't limit yourself to NYC.

--------------------
Suzanne Shaps
STAND UP FOR LYME Texas (www.standupforlyme.org)
(Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected])

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elley0531
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OK, I'll keep NJ open. I work in NYC though, so treatment there would be easier for and less time off work.

Right now I can deal with my symptoms and stil work, although at the end of the day I'm so tired. So days are better than others, but it feels like more and more body parts are being affected...to think I felt at least slightly normal 3 weeks ago.

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treepatrol
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Lyme can and does come back more ofton than not.
Read Newbie Links

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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cmichaelo
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Elley,

Also consider Westchester, Connecticut and there's a very good LLMD in Hyde Park, NY.

Some LLMDs will just give you abx and not look at all your other, but related, problems, such as your diet, excercise, hormone imbalance, metal levels, running below 98.6F temperature, just to mention the more important issues that generally either have to be addressed first, or sometimes before starting abx.

Michael

--------------------
I'm not an MD. The above is IMO and in my experience as well as from health related books.

I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before.

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trails
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I sencond Tickedntx. It does sound like it could be a what we call a herx. Also combined with wisdom tooth removal could make your lyme reemerge. I recently read a story about someone who had wisdom tooth extraction that caused a major lyme flare and he couldnt get back up again. Anyone know where I saw that? I think in the publication Lyme Times.

Anyhow---my own story might be of interest to you.

1991---I was 18 years old and had bullseye rash with the tick in the center. The disease was caught within a few months--the doc actually recognised the bullseye rash all the way back then! BUT--he only treated with two weeks of tetracycline.

Still, I had 10 great years, went to college, traveled the world, never ever thought about lyme. Until 2000.

I hit a wall of bizarre symptoms that made no sense to anyone. I did not have any rash or any tick bite that I know of. Took me a while, but finally got retested for lyme and it was positive (although I truly believe the testing means squat) and started treatment. 2 months of IV and 6 months of orals.

I did relatively well again for 3 years. THen just as suddenly---as I was training for my first triathlon, I started having painful bizarre symptoms. I was in denial that the lyme could come back for months and subjected myself to all sorts of tests and physical therapy that was very painful.

I do believe it is lyme again. I have been on oral abx for 9 months now.

THe sickest do not test positive for lyme...their bodies dont make any antibodies to the disease. I test positive, but am still very sick.

I hope my story adds to your understanding that this disease can be very tricky and very long term. It is great that you are so open minded and willing to explore your options!

Please keep us posted as to how you are doing.

Best,
Trails

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elley0531
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thank you. I am in the process of redoing my diet, taking a probiotic supplement and lots of raw goats milk yogurt (I also have some GI problems, gastritis, IBS...no ide if they are connected to Lyme) and my GI tract is actually feeling better from it.

Funny hormone levels were mentioned, shortly after the aches started, I also had ovarian pain and some odd between monthly bleeding (not to tell you more than you care to know).

So many things happened at once, I feel that they all must be connected.

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elley0531
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wow Trails, thanks!

I'm starting to finally feel like I may know whats wrong with me. I'm so nervous of getting a misdiagnosis (fibro or arthritis) and a pill cocktail and and overall "shut up" from doctors.

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just don
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Forget the tests, you have lyme and coinfections!!

Now it is up to you to find the "BEST" llmd you can find. No second rate cheapo care will do it for you!!!

And keep reading, you can NEVER have too much info!!!

--------------------
just don

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trails
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Elley---also look at endometriosis. My endo story is on THIS link---too long to write here, (go about halfway down to read my some of my story) but endo caused me to have almost PURELY bowel related issues and took years to correctly diagnose.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=044875

Endo can cause almost every single symptom that lyme can and they run in the same circles with MS and lupus with many folks having more than one of these diseases. Some docs are now calling it MSD or something like that---Multisystemic disease.

check out www.drcook.com I had surgery with him.

chances are you are dealing with more than one issue. BUT---lyme can cause many gastro issues alone.

Good luck!

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mlkeen
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Hi Elley-

Welcome and sorry that you are here to join us! But you are at the right spot.

So much of what was known about lyme when it was first identified in the 70's has changed and older articles and many doctors aren't current.

Lyme and co-infections can and do affect every system of your body, GI and female issues are HUGE. You should be tested for Rocky Mountain Spotted fever and mycoplasma along with the 4-5 usual co-infections. My llmd in SE Pa has found 69 cases of RMSF in the past 9 months. Unidentified infections will prevent you from getting well.

Please don't be shy about asking questions, I think eveything has been discussed at one time or another.

Rest and be well,
Mel

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elley0531
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Thanks!

I didn't know endo could cause joint pain...especially in the spine? And muscle spasms? I'll be sure to read your story.

Yes I am in the process of finding a good specialist. I asked in the Find a Doctor forum. I have on response, waiting for more.

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psano
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elley, one and half months of abx will not cure Lyme disease, if that's what it is, and that's what it sounds like it could be.

If so, you need to find a good llmd who will give you adequate treatment...and this may be for as long as up to 2 years.

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cmichaelo
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Elley,

Noone knows for how long one needs to be treated with abx. Nor does anyone know which types of abx will work for you.

The LLMD doesn't know this either. This may sound discouraging, and it is, but it is a fact!

LLMDs give abs on a trial and error basis.

They can't tell you up front, that e.g. Rocephin will work for you. They are gonna have to try it and then see what happens.

What is important, however, in terms of the type of LLMD that you end up with is that

- he's willing to diagnose you clinically,
- he's willing to treat you with abx over a prolonged time (e.g., >1y)
- he's willing to give you two, or more, different types of abx simultaneously.


Michael

--------------------
I'm not an MD. The above is IMO and in my experience as well as from health related books.

I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before.

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elley0531
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how will it get clinically diagnosed? I came up negative on the blood test. Are there other tests I can ask to have done?
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trails
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The blood tests are best run through Igenex. Local labs have a high risk of false negatives.

www.igenex.com

You can get clinically diagnosed by any good lyme literate doctor. Any doctor that understands the many faces of this disease.

Also it is a differential diagnosis meaning that you should rule out all other diagnosis that might cause you to have symptoms like lyme---lupus, MS, ALS, etc. Luckily most of those have good diagnostic tests and you CAN rule them out. Then you are left with lyme and you treat treat treat.

hope that helps,
trails

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cmichaelo
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Elley,

Have you read all the info for newbies?

You can get it here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=029917

You should read it very carefully. There's a lot in there. If you need help selecting the most useful links, I'll be glad to help.

But your most first important step is this:

Let go of your current Dr. He's not gonna be able to help you.

Secondly, you need to find a good LLMD. I already gave you my advice further up. I doubt you'll find one in NYC. They are rare!

I know you're probably confused about all that is going on with you, and why Amox didn't kill the Lyme and why Lyme is coming back and why the test is negative and so on.

I was too!

It is an extraordinarily complicated disease that generally speaking needs to be diagnosed clinically, that is, based on your history of symptoms and by excluding other diseases.

There is not good and reliable test for Lyme!

Lastly, there's a lot of politics in Lyme disease.

If you wanna get well again, you're gonna have to spend a significant amount of time on researching Lyme yourself. Do NOT rely entirely on your LLMD.

Also, start keeping a very detailed diary of all your symptoms, incl severity of symptoms (use a 1-10 scale where 10 is worst) and take your temp several times during the day (morn, noon, dinner, night).


Michael

--------------------
I'm not an MD. The above is IMO and in my experience as well as from health related books.

I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before.

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bp
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Hi elley,

I am going through the exact same types of pains your are right now. The traveling soreness in the spine, achy hands/wrists/fingers, stiff/painful neck, fatigue, and the burning sensations. All of thse symptoms seem to come and go randomly throughout the day.

I just re-tested positive for Lyme after two unsuccessful rounds of antibiotic therapy (and 1 previously negative test).

So in short, yes, Lyme can certainly cause these symptoms.

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DolphinLady
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Ditto justdon.

And, don't know if this is a relapse or a herx or something else for you, but I've known folks to relapse after something as seemingly benign as taking antibiotics or having tooth extraction(s) (to name just a couple).

Keep reading here. There are many knowledgeable and kind folks willing to help. It can get better with the right doc and treatment.

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bettyg
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Elley,
Welcome to this 24/7 LYME support group board!

Before I forget about it, all PM, private messages go to YOUR HOME email address.. If you want to keep info, file it in your HOME FILE FOLDERS. Lymenet PM allows 60 notes only & they add up fast; so delete them promptly from lymenet folder.

Make sure on ``MY PROFILE'' you edit it to show you ALLOW PMs so folks can send you a private email vs. On public board. Also change the viewing notes to VIEW ALL NOTES vs. 30-60 days only. Very helpful when you do searches on specific topics.

Here's TREEPATROL's and Tincup's combination newbie links.

http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.

print & read Dr. Burrascono's 2005 info first; you will come back to this often.

Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!


Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.

http://www.lymeinfo.net/lymediseasetreatment.html

If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.


EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes

200% MORE sensitive than they we were earlier.
I learned a lot about eye sensitivity/lighting on
www.marshallprotocol.com board.

Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.

I ordered the NOIR sunglasses.
http://www.noir-medical.com/noir_amber.htm
You will need 2% amber and 10% amber ... Style no. 901 and 910.
1-800-521-9746 TOLL- FREE

mention you have lyme and marshall protocol, they will give you 20% off!
I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!

Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?

I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.

from LOU to Betty on LONG web links and Thank You Lou!:
"If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for
those incredablylongwebsiteaddresses.

All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
http://tinyurl.com/

3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.

UNDERSTANDING HERXING REACTIONS
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041517


Site of photos of ticks from Iowa State University Entomology Dept.
http://www.ent.iastate.edu/imagegal/ticks/defaulttn.html


RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month

Tincup''s explaination of Camp A and B, Steere vs. Burrascano, on short term antibiotics vs. long-term CHRONIC abx.
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=021395

Lymetoo/TUTU's links: yeast & candida:
Candida diet and elimination:http://flash.lymenet.org/ubb/Forum1/HTML/021412.html
http://www.wholeapproach.com/diet/
Lyme symptoms list compared with yeast symptoms
http://flash.lymenet.org/ubb/Forum1/HTML/021412.html

Tincup posted March 8, 2005, 2218

Lyme Disease Survey Responses

February 27, 2005 - March 9, 2005

1. How many doctors did you have to see before being properly diagnosed? 112 responses
Average number of doctors consulted before being diagnosed - 14
Answers ranged from 1- 120 different doctors

2. Have you had problems getting insurance to pay for doctors or treatment?
87 responses? Yes- 63 No- 24

3. Have you lost income because of Lyme disease? 106 responses
Yes- 99 No- 7

4. How much does it cost you (average) per month for Lyme related expenses? 61 responded
Average cost per month per patient- $4,472.49
Low- $500.00 High- $21,492.00

5. How many different medications do you take per day? 77 responded
Average - 14 different medications per day
Low- 3 High- 25

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Trina
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Hello,
Go to your local library and read up on lyme disease.

Unless you caught it within a few days of the tic bite chances are the lyme disease has still been there all the time.

Get the bet LLMD you can and provide yourself with the best knowledge of how to help cure yourself with herbs,diet and a great doctor.A good book on Candida might be helpful if you are going to be on antibiotics.Lot of rest when you feel tired...

--------------------
Trina

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Lymetoo
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quote:
Originally posted by Trina:
Hello,
Go to your local library and read up on lyme disease.


The most current information is right here on Lymenet....and it's free!

--------------------
--Lymetutu--
Opinions, not medical advice!

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