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5/26/13 3:40 P

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I never had a positive either.

Holly
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5/25/13 9:45 P

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Blood tests for Lyme are very unreliable. Most LLMD's give a clinical diagnosis. I was given a clinical diagnosis before the tests came back. I have Lyme and ricketsiosis. I've had two tests since originally being diagnosed, both came back negative, however I am still symptomatic five years later.


@GUINEAHEN6 emoticon emoticon emoticon emoticon
I feel your pain sister!

Edited by: CD13949204 at: 5/25/2013 (21:55)
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7/27/11 8:39 A

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Thank you for sharing and glad you are doing better!

Holly
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7/27/11 3:20 A

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hi everyone,

I not only found the tick, had the rash, and got tested and it came back negative twice! The tick tested positive but The doc said it wasn't Lyme but Fibro!? What? Idiots! That was two years ago. I couldn't afford the medicines or the Dr. visits for the Lyme literate Dr., So off to the Library I went, I was so surprised by all the people in my town who have Lyme disease! I shouldn't now. We are the #1 state for Lyme. New Hampshire!
Through the community of sufferers I was able to find some of the best ideas and followed them! # 1: Detox diet to find allergies
# 2: Call The best Lyme Dr. explain my situation and get recommendations for home treatments
# 3: Follow to a T his recommendations
# 4 become as knowledgeable as possible
All of these I have done! And had great results! Almost 1 year symptom free! 2 months after starting my regiment. Herxing yup! Really awful to begin with! The regiment had a treatment for that as well. Take ten drops of Parsley under your tongue. Drink plenty of water.,If still present, take ten more. This will cause the body to dump germs and fluid buildup rather quickly. Do not do this IF you have low blood pressure. This will drop your pressure rather rapidly! DO this ONLY WHEN HAVING HERXHEIMER REACTION!!!!
Drink 3 Quarts of water per day to totally flush the blood stream daily of all dead germs!!!!!!

His recommendation was to go on the Condensed COWDEN Support Protocol, offered by Nutramedix. com. It is a 6 month program. Very tedious! But worth it for me! Not everyone has the same symptoms, not everyone responds to medicines the same, and esp if you have Lyme . It definitely changes and alters our chemistry to where it is a best guess scenario on what will or wont work.
I now am allergic to 90% of most antibiotics, I am super sensitive to so many common medicines now. I can no longer have a CAT scan with out having to go through PREDNASONE. The radio active dye they use never bothered me before, after Lyme, it stopped my breathing and heart!!!! This is NOT a simple tick bite, This is life altering!!!!!!
Not only do you suffer with horrendous pain, and exhaustion. but there is the set up for damages that the spirochetes target!
I have disfiguring Lyme arthritis in both my hands now, my knees, and spine. Horrendous migraines and my hair falls out by the handful's periodically! With the Cowden Support I am nearly symptom free!
Until this Spring! I was bit by a nymph of a Lyme tick on my neck! My symptoms flared overnight!! The herxing was awful! for more than a week! Then one month later I found another one on my leg! Again I went through all the symptoms!
It is a day by day battle that we have to fight and win!!!! IT'S WAR!!!!!!!
I"m in a flare up mode at the time of this writing.Probably because I quit smoking last week!
I been off of meds for the week and unable to hardly eat anymore. I've got 5 days till I switch back to the main antimicrobials and that will take care of this. One good thing is the meds make me hungry after taking them ( you take them 20 min. before you eat, 4 x's a day) so I can get my food intake back up to normal.
The last 2 months of meds I am taking now is for co-infections. I must of had some because the herx's have been bad. I have three weeks before my daughter's wedding and I need to feel better! I really don't care whether I lose any more before the wedding, I just want to be able to enjoy all of the festivities and not be in such massive pain!!
I'm so glad I saw this posting and good luck to you all!
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4/17/11 12:37 A

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Hi Sparky! I can so relate! I have had Lyme since at least 1987, but maybe even since fall of 1979. I would always say, there is no way that I could be so unlucky as to have ALL the different illnesses I'd been diagnosed as having... my symptoms MUST be related somehow -- and we were both right, weren't we?!

Good luck with your treatments. I travel out of state to see my dr. too, and it is worth it.

~Connie~


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4/16/11 1:33 P

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Hi Sparky and WELCOME!!! wow 20 years i dont know how you have done it..thank goodness you are on the right track and getting treatment! We are here for you...please let us know what we can do to help!!
Holly

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IBSPARKY Posts: 7
4/16/11 1:03 P

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I have recently been diagnosed with Lyme disease. In hindsight, I believe it has been in my body more than 20 years. In early March (2011), I went into the doctor (NP) with a two-page list of what was wrong with me... symptoms which seemed to have no relation to one another at all. I told her that I can no longer live in the pain I am in and she needs to figure out what the heck is going on. The pain in my legs made me feel 100 years old. The extreme fatigue made it difficult to do anything but get through my work day.

I told her the worst thing that could happen is for her to do a bunch of tests and find nothing wrong, because I KNOW something is wrong. I also told her that I will not take one single pill to cover anything that I am feeling until I have a diagnosis. I want to know the cause and not place a band-aid on the symptoms.

Well... she went to work. One of the tests she did was for Lyme. Here's what I understand about the tests for Lyme. First they do a screen. If that is positive, they continue with the Western Blot test (which they keep and observe for up to 5 weeks). My screen came back positive and at that point they observed the Western Blot test . After two weeks the Western Blot test came back as "equivocal" - showing that I indeed have Lyme disease.

From my research since diagnosis, it is stressed over and over from a variety of sources that Lyme should be a clinical diagnosis (diagnosis by symptoms) and NOT diagnosed via a test. The most often used tests for Lyme are not reliable. There are many false negatives.

When I look back at my strange list of symptoms, all of them are symptoms of Lyme. I will be forever grateful to my nurse practitioner who figured this out. Now I know what I am dealing with. I understand I have a long road ahead, but I now have a LLMD (Lyme Literate MD) on my side. The drive to his office is 2 hours, but I believe worth every mile, minute, and gallon of gas.

I see the LLMD this coming week for my game plan. I believe my role in this process is to do whatever it takes to allow my body to operate optimally in order for the Lyme to get it's walking papers. My concerns are boosting my immune system and supporting detoxification as it occurs (and it will occur). I am on an anti-inflammatory eating program, including no sugar and no foods that are known as allergens for me.

I had allergy testing to find I am allergic to chicken, beef, soy, eggs, dairy, almonds, cashews, sunflower (including oil), most shellfish, salmon, tuna, pinto beans, wheat and mustard seed. Now that's a crazy long list... but every time I eat one of these, my immune system is wasting energy on this food "invader" rather than on the Lyme, so that keeps me focused on not including these foods in my diet.

I am in this for the long haul, however consistency has never been my strong suit. This time my motivation is different. This time the health battle involves the way I actually "feel"... not wanting to hurt anymore is strong motivation in my book.

Let the battle begin!

Sparky

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4/13/11 11:00 A

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mine were negative too. the entire time...and the doc said that was actually normal. go figure. but my sons titer was through the roof.
I cant tell you how lucky i was to have the doc i had. he was wonderful. and he saved my life...

Holly
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4/13/11 9:38 A

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LOL! Yes, I've read that with Lyme you tend to either lose or gain (both unintentionally). I was on the gain side. I was counting calories and doing everything spark said... you name it, I tried it. I kept gaining. Then I began eating a lowfat vegan diet (ALL the experts said you would lose effortlessly when eating this way) and stopped gaining, but didn't lose either. Nothing worked for a couple years - till my diagnosis and start of treatment. My doc was the opposite, said "Great! You're losing! Now if we can improve your thyroid function, you'll lose even faster."

I know it was at least 24 years, because I had a bulls eye rash then, but I had a flu like illness in 1979 with recurring symptoms after that, which make me wonder. Doc says no way to really know.

Even though I could function, I got worse every year and it totally directed the choices I made in my life!! My 'flares' increased in severity and frequency to the point that I was barely living. I definitely wish I could re-do my early 'mom' years as a healthy person! It was such a struggle to get through each day - and I sometimes (after dozens of drs. and diagnoses) thought it was all in my head - my blood tests always came back normal! (until I went to the fatigue dr who tested for different things than everyone else!!!)

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
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4/13/11 8:45 A

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Funny how it affects different people differently. If you have had Lyme all that time you are, indeed, lucky. I WAS able to lose weight..64 pounds very quickly, when i was sick. i remember limping into my docs office,,,i had gained 5 pounds and was really unhappy about it. He grinned like a cheshire cat and said..i see you GAINED!! thats a GOOD sign. Yeah. one of 2 times in my life someone told me gaining was good. I also remember after gaining 30 back when he said OK...it was good at first..not anymore..STOP!! but i didnt. Wish i'd listened!!

Holly
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4/13/11 8:38 A

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Yikes! You really suffered! I went undiagnosed for 25-30 years (depends on when I actually contracted it.... guess I'll never really know), but I wasn't completely disabled like you. I was approaching it in 2008 when I desperately went for treatment out of state with a doc who specializes in fatigue, but improved some (treating symptoms caused by lyme, like adrenal function, thyroid, etc.) over the next two and a half years before my Lyme diagnosis.

I DO have hope, but in the middle of a bad herx, I seem to misplace it!! Thanks for the encouragement!! Some day, I hope to be where you are now.

(BTW -- I was UNABLE to lose any weight until I started my Lyme treatment. Main reason for losing was the health benefits - figured I would do everything possible to improve my chances for full and active life.)

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
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4/10/11 5:03 P

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oh good!! I remember one very dark morning when i tried to sit up and was scared i was going to die, literally. and then i was scared i wasnt going to and would have to suffer like that forever. If they could bring me back believe me they could bring anyone back..i was sick for 3 years before i got diagnosed....and it took another 4 to get me to functioning. I was literally at deaths door...i had funeral arrangements set. i kid you not...per my docs who couldnt figure it out.
So no matter what there is hope..i couldnt drive and now i can. i couldnt work and now i work 3 jobs. I couldnt remember my kids names and now i know them all. I couldnt be alone--i had home health aides 24/7 and havent had one in years. so really, there IS hope!!

Holly
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4/10/11 4:02 P

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Thanks Holly! So far, I am feeling better today. It's giving me hope that I won't have to live that way forever (feels like NOT living). I am able to sit upright and do a few things today. emoticon

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
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4/8/11 1:24 P

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what i would say is, and i know this is hard and you are welcome to throw things at me, but try to embrace it..it means its working. The way the state epidemiologist explained it to me is..every 10 days they divide or whatever. the meds kill them, and your body has NO clue how to process them. thats why the reaction. so keep remembering its WORKING...you WILL get better. really.
I'm here if you want to talk!!
Holly

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4/8/11 12:01 P

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I am on a rotation of different antibiotics, so I can herx twice in a month. Every time I switch antibiotics, there is a chance I'll herx. I knew about herxing, but didn't know it would keep happening. One time sent me to ER with shortness of breath, extreme fatigue, nausea and chest pain.... was cleared of all heart and blood clot issues and when I asked my doc, he said that it was a classic lyme reaction.

This time I hurt all over, (A LOT!), am drained of energy and dealing with migraines among other things. It isn't quite as bad as some others' experiences I've heard about -- I can't do my normal schedule, but I can take care of my needs. I think I'm finally turning the corner - but of course I change meds again on Sunday. emoticon

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
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4/7/11 9:09 A

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I had negative tests also. I did have the rash, all the symptoms, and the definitive test, and the docs didnt warn me, was the herxheimer reaction after 9 days. Daily they would call me..how are you doing..i had no change no change. Then on day 9 the state epidemiologist called. How are you. I'm going to die i said. What? whats wrong he says?? i said i cant move..its worse than its ever been. i'm shaking i have a fever this stuff is NOT working. I heard a whoop on the other end of the line. He says thats WONDERFUL!!!! I wanted to smack him. i said wonderful? i'm in agony..he said..thats what CDC was looking for..we couldnt tell you because we didnt want it to be like a placebo effect. It wont last more than a week..hang in keep the iv running.
I've not her it termed hering, but i do know in all the research i've done it should only last a couple days to a week. so hang in...i did have a down time about every 10 days when the spirochetes are doing whatever they do..every new batch i'd have a bad day or 2. i was on iv rocephin for 22 weeks, and after the initial bad time the every 10 or so day one wasnt so bad. a little fever, a little achy. moreso than usual. i embraced it as it was because the treatment was working. the years of agony were about to be done.
Hang in..it shouldnt last too long. post if you need to talk..sparkmail me if i can help!!
Holly

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4/7/11 7:04 A

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I have been diagnosed with many different things and have had at least two negative lyme tests before my last one which was positive for 10 strains. I had a bulls eye rash about 25 years ago, but my symptoms started in 1979. I now don't believe that I have Fibromyalgia, (along with many of my other diagnoses) but that it was lyme all along.

I have only been in lyme treatment since late Dec. (2010) and my doc says I have a long way to go. My good days are getting better, and my bad days are getting worse. I do feel as though I am going in the right direction overall, though.

I am herxing now and am totally miserable. One thing I am just realizing is that I gain weight when I herx, even if I am eating within my range. I haven't heard anyone mention that when telling about herxing.

If anyone has any suggestions on ways to handle herxing and it's many symptoms, please share.

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
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4/7/11 7:04 A

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oops

Edited by: INFO-JUNKIE at: 4/8/2011 (11:51)
~Connie~


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Oops

Edited by: INFO-JUNKIE at: 4/8/2011 (11:50)
~Connie~


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4/7/11 7:04 A

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oops

Edited by: INFO-JUNKIE at: 4/8/2011 (11:51)
~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
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3/4/10 3:56 P

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no one thing...it was a combo. i had long term IV antibiotics, then a year of oral after the iv. then 2 differnt oral ones to make sure...

Holly
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IRONGRACE's Photo IRONGRACE Posts: 140
3/4/10 2:33 P

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Thankyou Holly :)

What treatment helped you most?

Katie

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3/1/10 7:58 P

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Hi Grace and Kelly...
i can say this with full conviction. NEVER GIVE UP. and dont worry about "rants". thats what we are here for!!
I'm better. am i 100%? no. but i will take this. and be joyful about it. i was dying and I found a wonderful doc who worked with me, worked with CDC for a clinical diagnoses as compared to a positive test, and used a controversial at the time treatment to help me get better.
KEEP GOING!! never ever give up!!!
We are here to listen and help where we can....
Holly

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3/1/10 4:31 P

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omg reading all of this makes me sad and frustrated. i have been fighting with a litany of med issues for 5 years. I have every symptom of Lyme, including heart and brain issues. Ive had 1 test and it was negative. but i know its not reliable, but it frustrates me because there is a possibility that this could be the cause for all my pain. i live a large amount of my time in bed and ive gained so much wait. IDK if i have more of a point, lol but thank you for sharing yoru stories... ohh also, if you want more info or what not youtube under our skin, its a documentary about lyme and the political side, it sucks... but i guess we can all come together to help each other.

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2/28/10 2:23 P

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I don't remember if I had a rash or not but I know I've had tick bites and I was hospitalized a week after camping diagnosed as "Viral Syndrome". I have had two Igenex possitive tests and one negative done by another lab ordered by a different doctor. That doctor would not supply me with a detailed result showing any band reaction, only a line item of negative. No mention of Igg or Igm. That doctor was an Infectious disease specialist and member of the IDSA. I could rant long and hard about how frustrating it is to (a.) get a diagnosis and (b.) get any other doctor to acknowledge your positive diagnosis. I live in Texas which makes this even more frustrating because doctors have been taught that you can't get Lyme Disease here. My own primary care Doc. is one who refuses to believe I have it regardless of the symptoms and other evidence.

I've had lots of different antibiotics over the last 5+ years though no IV other than when I was hospitalized and that was about 48 hours worth. I have also tried some herbals from Nutrogenx. I am much better than I was before I was diagnosed and treated but I am still disabled.

I am so confused over it all that even I don't know weather to believe if I have it or not. I know I fit in perfectly with a lot of the descriptions of chronic/long term Lyme sufferers. Deep down in my gut I feel that many people have been diagnosed with many things including Fibro that actually have Lyme but were never tested or are victims of the lack of definitive testing being available.

There is the seemingly strong science I have read supporting the existence of long term chronic Lyme and there are the doctors in the majority who say that science is no good. I am not a Dr. or a Scientist so ????????? I don't know if I get to learn to live with my condition or if I will get worse and possibly die as a result. It scares the crap out of me.

I'm sorry, when I saw this post I was already on the verge of tears from reading about the fight that goes on between Doctors who have done extensive research and want to help, and the people who make treatment guidelines and policy. It is a very stupid and ugly thing.

http://www.lymediseaseassociation.org Is another good information source. Fair warning, reading some of this will likely make you angry. It is information everyone should have though.

Thank-you for creating this topic. I have been wanting to start one and conduct my own little bit of amateur research to find out how many folks here have actually been tested for Lyme.

Sorry for the rant
emoticon

Katie

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HOSTBODY's Photo HOSTBODY Posts: 113
2/25/10 9:31 P

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Also check out: www.Lymenet.org

Discussion boards there with lots of information.

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2/25/10 9:20 P

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Hi! All my local Western Blots are negative. However, my Igenex Western Blot was very positive. I also have Babesia and Erchliosis. You should get checked out for co-infections. If you have them it makes the Lyme harder to treat. I have chronic lyme and have learned to live with it after 2.5 years of oral antibiotics and 7 months of IV Rocephin. The IV really kicked it! However, I am not symptom free. I still herx. Just not as severe. Never had a rash. Doctor thinks I've had Lyme since I was a kid. Okay, I'm in my late 40's - so quite a long time for the Lyme to really dig in. I've also tried bioresanance, cleanses, foot cleanses, herbs and supplements. I think they all have helped...to a point. Most Lymies need Vitamin D and a B complex vitamin. I know the D really helped me! Good luck!

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7/2/09 12:40 P

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i had western blot and ELISA and both were negative, but I had been on antibiotics. that will negate the tests...
i had the bullseye rash but not everyone gets that. i still get the rash during heat waves or using hot water. and i was bit in 87....
its misinformation that when the rash goes the disease goes.
I was on rocephin 2 gm iv daily for 22 weeks, but i was also late 3rd stage before i was treated. it followed with a year of oral ceftin. and yes antibiotics still work for me....

Holly
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TKJBSGETTINGFIT's Photo TKJBSGETTINGFIT Posts: 321
6/17/09 9:55 P

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I tested neg on the western blot but it was long after my bullseye and done by a different doc who suspected my neurological probs might be lyme. He told me the definitive test for lyme is the bullseye that I had. There is nothing else that causes the bullseye, except Lyme.

The more I find out about lyme the more I understand there is not currently a reliable test to diagnose it, especially in the later stages. There are false positives and many many false negatives to the most commonly used tests like western blot.

It's the only disease I'm aware of that insurance co.s actually were able to dictate how diagnosis and treatments are done, even legislating it so docs who don't follow their rules are subject to losing their licenses!

My doctor said my bullseye was going away so I was fighting it off myself and didn't need treatment since her belief was that when the bullseye was gone so was the lyme disease. She wasn't aware the bullseye can return anywhere on the body at any time, as do the rashes and other symptoms. There are several lyme websites out there for the U.S. and Canada. Watch out for the ones who have to follow the official AMA dictate that there isn't such a thing as chronic lyme disease! Good luck as you start your research into this disease!

My rashes are usually on my ankles, feet, hands, and wrists and they get worse during hot weather but cycle every 4-6 weeks otherwise. When I get the rashes my family has noticed my other physical symptoms all get worse, turns out that is just part of the disease, it's cyclical.

Fill your minds with those things that are good, deserving of praise, that are true, noble, right, pure, lovely, and honorable.Put into practice what you have learned and received from Me, both from My words and actions. Phil 4:8-9
NMBUTLER Posts: 1,201
6/17/09 6:57 P

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Hi All:

I noticed on my last thread that 2 of you have Lyme disease. Thru what blood test did they detect it?? What treatments have you tried and have they helped??

I was diagnosed with Fibro about 2 years ago after having bad fatigue, irritable bowel, tingling, headaches and bad episodes of pain all over, back and neck pain, blurry vision, etc.... The new doc that I am now going to thinks that I have Lyme. He did 2 Western Blots- both were negative but one had one band with 2 positive markers and 2 other bands that were indecisive. He is re-testing me and testing me for Ehrlicious. I don't have the results back yet. Can you have lyme if you have a negative test??
I never noticed a tick bite but I've had some weird rashes off and on- usually heat induced.

This doc is both a regular doc who specializes in treating patients with Lyme and he is also a homeopathic doc. He has taken me off some meds and put me on a bunch of different supplements. He also had me do a 28 day detox and I have lost some weight and am eating healthier than before.

Would love to share and keep in touch with anyone who has Lyme and related health issues.
Gentle hugs,

Nancy

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