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» LymeNet Flash » Questions and Discussion » General Support » beginning to think I don't have lyme anymore... looking at other options

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Author Topic: beginning to think I don't have lyme anymore... looking at other options
lazerorca
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yeah I have been on treatment since october. my cognitive abilities seem to be getting worse and my tremors are not clearing up. i don't show very many classic signs of lyme. I live in NC which is not an endemic area. I am thinking about seeking another opinion. I may just be making all of this up in my head i really don't know anymore. I know I am gonna get flamed for this thread, but whatever... i don't want another condition to be neglected if indeed i am getting worse.

these meds make me feel like sh*t and i believe they may be the reason for all of my hair loss and i don't feel like doing them anymore. it is a struggle for me to sit down for over an hour 2 times a day and wait for my infusions to finish. if mary wasn't around to remind me I would either forget or just choose to skip infusions. I am ready to have this picc line taken out. I am going to finish my course of treatment just because of the possibility i might have lyme, but I am gonna seek other options. a mountain of a bill has been incurred from this treatment, and it is making me believe my treatment is nothing more than a money racket.

I am ready to live my freaking life again. and I am gonna try and take next summer session off and regain my physical strength. I honestly think my lack of energy may just be from being completely out of shape.


Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003  |  IP: Logged | Report this post to a Moderator
lazerorca
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I wanna be tested again... but they are saying there is no need which also makes me skeptical. I WANT a positive PCR, not an equivical western blot. I could have been exposed to other spirochetes, who knows...
Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003  |  IP: Logged | Report this post to a Moderator
lymewarrior03
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http://www.jemsekclinic.com/lyme5.php#sect13

Above is a link to the Jemsek clinic in NC.
NC IS a big lyme area, unfortunately.

You sound like me talking!! My first and constant symptom was and is brainfog/pressure/sensitive eyes/headache. Had that for 5yrs before getting worse.
I didn't/don't have joint pain. I do have severe fatigue and a deep ache in my upper leg joints/groin area.

During the year before the crushing fatigue and joint ache began, I thought I could "run it off" Every day I ran/walked at least a couple of miles. By the end of the year, I was disabled by worsening symptoms.

Following a year of treatment, nothing has improved, and I now have muscle twitches.
I have windows of slightly improved energy, but they close too quickly.

It sounds as tho you are experiencing a constant herx reaction, which is how I react on abx, and is actually not uncommon.

Lish's Mom has described the year her daughter was on abx, constant increased discomfort, nightmarish unending headache....gradually began getting better after many months.

On the other hand, it's very possible that you are not on the best abx for your strain, or that you need to address coinfections (another testing nightmare)

I have insecurities about the lyme diagnosis often, but all signs point to lyme...and other things have been ruled out.

I sympathize with you tremendously. It is a horrible thing to deal with. It sure sounds like tick borne infection(s) to me.

[This message has been edited by lymewarrior03 (edited 01 June 2004).]


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cbb
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lazerorca,
The doubts & feelings you're having are normal. You are not making this up in your head, because you have the symptoms & an equivocal Western Blot.

It's even possible that you have co-infections that have not been dealt with yet in your treatment plan.
Ex: It's possible you could have Bartonella.

I didn't have enough symptoms to make a diagnosis, but was lucky enough to have Medical Diagnostic Lab find I was positive by PCR for Bartonella.

You say NC is not an endemic area for LD -
Please don't risk your life on statistics from any government agency.

The CDC says "A county in which Lyme disease is endemic is one in which at least TWO definite cases have been previously acquired OR in which a known tick vector has been shown to be infected with B.burgdorferi."

It doesn't take long to reach that criterea.

I don't remember the most recent numbers, but through 1999, NC had 711 cases of Lyme reported in the CDC statistics, which must mean that 711 met the strict criterea of the CDC surveillance case definition.

It has been said that only about 10% of qualifying cases are ever reported to the CDC, so you can see that only a fraction of cases are counted.

While on IV, are you doing lots of extra things to help you improve?

It's extremely important that you take enough acidophilus to replenish the good bacteria in your system. You need to have 2 hours between the abx & acidoph - before & after - or it won't be able to work.

Without it, you WILL develop a systemic yeast infection that will have symptoms that are the same as Lyme. It takes a specific abx to kill the yeast.....LD treatment won't do it.

Are you drinking lots of water to wash the toxens out of the body?

Taking nutritional supplements as recommended by Dr Burrascano in his Guidelines? www.ilads.org/burrascano_1102.htm

Eating nutritious foods?

NO sugar?

Dealing with Tick-Borne Diseases is almost a full time job & you'll find it could be the most difficult thing you will face in a lifetime.
Please give it enough time to work.


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lla2
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If you haven't gotten any better on treatment, it's almost always because you have a coinfection that you're not treating.....and it sounds that way to me...

don't give up.tests are not accurate. find an llmd who will treat you based on your sytptoms , not tests! THen you will start to see improvemnt! obviously if you had positive bands you have lyme,and need to have other coinfections treated I think....

the lyme won't go away until you treat the coinfections....
Lisa


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cindy_leigh
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of COURSE you have those thoughts, and a good LLMD thinks the same way. When first seeing my LLMD, he was very careful to rule out any other conditions that share sx w/ lyme, even sending me to a cardiologist and neurologist.

You are normal for thinking that way. I do it myself. I am back on Mepron and Zith and feelig lots of sx coming back-- twitches, vibrating numbness in my hands and feet, headaches, etc. I'm between week 4 and 5, a mild herx I guess. But even so, even with my pos Igenex WB and LLMD dx, I still get those moments of panic that I really DO have one of the other dreaded illnesses.

I stopped taking my abx too soon on my first year's treatments. I felt better, and my rx ended,and I let it be. I should have pushed on a little more. My sx came back after about 5 months. So here I am again.

You have gotten good advise so far, about co infections, diet, yeast, etc. When I eat carbs I feel much worse. Unfortunately, when i am feeling bad from herxing, it's carbs I want! Real Coke and saltines. Very bad!!

I hope things go better for you, and there is no shame in revisiting all the "rule-outs" with your LLMD again. Go back and ask to have the dx process re explained, to reassure you. Ask if you should have a consult with a LL neuro, or other LL specialist. Ask about a different abx combo. Ask about testing for coinfections. Ask about yeast testing and treatment. Did you have the Bowen test? Some people value them, others don't. But if you had one, ask about a repeat to see if your bacterial load is decreasing.

Best wishes, Cindy


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Lymetoo
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Hi Lazer! Boy you sound just like me the first year of treatment! I herxed for an entire year and thought I was never going to get any better. Thank God I didn't stop taking my meds.

I've had Lyme for more than 45 yrs, and was only dxd 4 yrs ago. It's a long time to take abx, but it was worth it. I'm still on abx, but I feel pretty darn good!

Personally [and I'm NOT a dr!] I think you should consider trying oral abx, particularly if you're concerned about the $$$. Which abx are you on?

You were given wonderful advice on yeast and co-infections. Make sure your diet is "clean" or you will never make any progress.

If you're eating sugar and lots of carbs, you'll never feel any better while on abx because you're feeding the yeast. The symptoms of systemic yeast are nearly the same as Lyme symptoms!

I would also ask your dr to TREAT you for babesia, just in case. The tests for babesia aren't much better than the ones for Lyme, so you could easily have babesia [or bartonella, for that matter].

Remember that even ONE band that is specific for Lyme means you have Lyme!
Hope our posts have helped you some!
Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

Breakthroughs in Lyme Disease http://flash.lymenet.org/ubb/Forum1/HTML/024093.html

------------------
oops!
Lymetutu


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Jooooo2
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Laz,

I know all to well how your feeling! We get so discouraged, doubting everything symptoms & the treatments.

I'm also a NC resident and never thought I could become infected here. I was aware of what lyme could do in the early stages of the disease. But not the long term effects it has on us. We constantly have dealt with ticks, always checking ourselves and my six baby dogs.

Please check this new warning that our state health department just posted:
http://www.epi.state.nc.us/epi/gcdc/tick.html
(hope my url works)

While I think there numbers are off they are being wise to warn us southern folks finally!

Please feel free to email me if I can help you in any way.

Jo


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treepatrol
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quote:
Originally posted by lazerorca:
yeah I have been on treatment since october. my cognitive abilities seem to be getting worse and my tremors are not clearing up. i don't show very many classic signs of lyme. I live in NC which is not an endemic area. I am thinking about seeking another opinion. I may just be making all of this up in my head i really don't know anymore. I know I am gonna get flamed for this thread, but whatever... i don't want another condition to be neglected if indeed i am getting worse.

these meds make me feel like sh*t and i believe they may be the reason for all of my hair loss and i don't feel like doing them anymore. it is a struggle for me to sit down for over an hour 2 times a day and wait for my infusions to finish. if mary wasn't around to remind me I would either forget or just choose to skip infusions. I am ready to have this picc line taken out. I am going to finish my course of treatment just because of the possibility i might have lyme, but I am gonna seek other options. a mountain of a bill has been incurred from this treatment, and it is making me believe my treatment is nothing more than a money racket.

I am ready to live my freaking life again. and I am gonna try and take next summer session off and regain my physical strength. I honestly think my lack of energy may just be from being completely out of shape.


This my third year treatment and Iam feeling great right now I was ready to ween off but I herxed friday so Iam staying on.

I will tell you I went from july to jan the first treatment round and just started to feel better joint pain hung around a couple of months more before subsiding.

HANG IN THERE.

------------------
Do unto others as you would have them do unto you.


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3greatkids
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Hey Laze, This is some battle we are up against.This treatment is rough, having Lyme is rough, not doing the things we all once could is rough, ETc... So I guess dealing with this stuff takes a toll on all of us but if you can hang in there and realise herxing is part of this healing,be kind to yourself and know you will get thru this. Dont give up!
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Lazer'sMom
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I'd like to add. . .

cbb wrote:
"You say NC is not an endemic area for LD - Please don't risk your life on statistics from any government agency.

The CDC says "A county in which Lyme disease is endemic is one in which at least TWO definite cases have been previously acquired OR in which a known tick vector has been shown to be infected with B.burgdorferi."

It doesn't take long to reach that criterea."

In the last month I have been approached by THREE local individuals that (1) pulled 17 seed ticks off and within 1 week, 6 inch EM rash had appeared, (2) our next door neighbor received a bite on his foot, rash appeared and he is currently on Doxy and (3) the daughter of #2 has been ill for months with fatigue, weakness in arms, severe migraines. She COULD NOT get her local PCP to test for Bb (he wanted to wait until her annual physical to perform the test). This young lady is a vet so I would assume her chances of exposure have been on the high side.

I personally think that we are in a "hot spot". All 3 of these individuals, Lazer and also connieMC who posts here have been potentially infected within a few miles of each other.

We also have a 4 year old golden retriever that has been lame for months and not reponded at all to the arthritic meds she has been prescribed. I suspect she is infected too.

Some may say I have lyme paranoia since Lazer's diagnosis but in my opinion if it looks like, walks like, and quacks like......well you know the rest.

I'll post more later regarding Lazer's frustrations. Gotta go for now. Thanks for listening and supporting my "baby".

Lazer'sMom


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lazerorca
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yes I have read much about lyme. u really don't have to point me to any links although ur concern is much appreciated. I know this could easily be turned into an argument with me making this next statement, but yes I did have specific bands for lyme and even a CDC positive for IgG antibodies, but any lyme doctor will tell u there is a bit of uncertainty still looming with a positive WB for IgG antibodies. this does not always suggest an active infection. I could have been over lyme a long time ago. I mean I was treated several times with antibiotics in the past all though even i and many on this site will admit would be insufficient for treatment of lyme.

I have read studies about how many post-lyme patients have developed auto-immune diseases. many will say this is most likely late lyme which I am not contesting, but there has also be CONFIRMED MS and lupus and things of that nature. I mean I do agree that a lot of MS and ALS diagnosis are prolly just a "we have eliminated everything and this is what u have" diagnosis, but there are real cases of MS and such. I am not calling out any lymenet people on this, but I get the impression that many write off ALL AUTOIMMUNE diseases as undiagnosed lyme. personally I think an inflated immune response from lyme may bring upon these auto-immune disease (if it isn't late lyme) but I am no doctor. but I really dont' wanna start and argument.

there just seems to be SOO MUCH uncertainty and I don't like it. I don't remember the classic rash, I have not gotten positive tests on any of the direct testing methods like PCR (even though I know this is low yield, but this would PROVE I had active infection), I had an equivical result for IgG from Igenex and a positive from a very unreliable lab, symptoms are not getting better after LONG, EXTENSIVE IV TREATMENT. I have been on IV since january. right now I am on freaking zithromax and clindamycin and soon will be on zith and levoquin TOGETHER. from what I have read these are VERY STONG second and third generation antibiotics that are supposed to work miracles. my treatment regimen is up in 6 weeks and I am still having neurosymptoms. things don't seem to be adding up. I am sure I will be flamed for posting anti-lyme crap or falling into the trap of the lyme conspiracy or whatever, but i am just posting what I feel, and really nothing can be trusted that is rewarded with money being the insurance racket that many believe is holding back lyme or my lyme doctor who benefits from my treatment. I mean there are people that see my lyme doctor that are selling their homes to pay for treatment... that really doesn't seem like he has the best in mine for his patients


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ConnieMc
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Amen to what you said, Lazer's Mom.

Lazer, I am sorry you are having so many doubts. I have been there at least 100 times. Imagine how hard it was for me to be very ill, with a clear history of tick exposure and rashes, and have docs laugh at me when I brought up the possibility of Lyme. And isn't it a shame that I went 3 years like that, undiagnosed and untreated? But as soon as I finally found Dr. J, he confirmed Lyme and started helping me get better. It has been a long, difficult road. And I may never be "cured" in the sense of the word. Just in remission, maybe.

In spite of lots of treatment, I am still a blazing positive on the Western Blot. CDC positive on both IgG and IgM. But at least that is telling me that my immune system is waking up and trying to fight this on it's own.

But, I know it isn't easy to go through all this. Been there, done that. And I wish I had that crystal ball to look into for all of us.

But rest assured that if you let this monster go untreated, you will have a very real battle on your hands.

Like your Mom said, I had the tick exposure in the same area as you did. And I do believe that area is a hot spot. Lazer's Mom, I am sorry to hear that others are getting sick. But glad you are there to help them.

Lazer, write me any time. And we can talk by phone as well if it will help. Are you at home for the summer? If so, I will be in Warrenton next week for several days visiting my in-laws. Let's get together for lunch or something.

Hang in there bud!

Connie


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3greatkids
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Lazer, I understand your frustrations! I had no rash, had neg. after neg. blood test,and then after taking literature about this stinking bacteria to my GP Dr.....he scans it and says,"If I would have believed every I read in med. school, I could have convinced myself I had a brain tumor." Well,three years later,on IV for over a year, herxing from h###,raising teenagers and numerous friends, I am hanging on and count my blessings everyday for how far or little? I have come. It is a tough battle man,I cry everyday, wish I could come down your way and do some boatten on the Tar and maybe hit a few snakes, water heaters or whatever else floats by.SO good luck in the direction you decide to go in and give your Mama a big hug,wish I had one to help me get thru this rotten stuff.
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treepatrol
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Ive been on alot of different abx's and still fighting the battle.
What you better realize is this disease has lots of uncertainity with it including all the other infections that come along for the ride. Go ahead and get checked for other stuff if you want BUT if you were bitten by a tick I would get treatment continued. It takes lots of time to get over this and relief. Also get checked for protozoa.

I had no rash ever and Ive been bitten at 70 times and 12 or so imbedded deep into me NO rash ever. But I had three strains of bb and secondary infections too.
When they did your test the first time did they use a 3 day urine lyme dot blot test?Did they hit you with abx's during the 3day urine test?too free up you antigens?

[This message has been edited by treepatrol (edited 03 June 2004).]


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3greatkids
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Bitten 70 times, Oh my Tree! Nasty things and to think summer is just starting. Hang in ther Lazer!
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Lazer'sMom
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Wow..where do I start.

I have been sitting here for the last three hours, for what seems like the 100th time, fine tooth combing through all of Lazer's past medical records.

What am I searching for? Maybe, just maybe, something that I've missed, he's missed or one of the many doctors have overlooked on a blood test, CT scan, MRI, EEG, etc.

I'm searching for a clear, cut-and-dry answer to something that is not blatantly there!

I think that's where the frustration with this disease comes into play for me (and Lazer too). No straight answers, no black and white, no in your face, red flag, here's the problem.....let's fix it!!!!

I can't imagine the complex range of emotions felt by you all, the ones whom are suffering with, and having to deal with this dreadful illness day in and day out. My heart goes out to you all.....

I have experienced many losses in my life due to cancer, heart disease, accidents, etc. but nothing has been more painful, nor prepared me for losing my son to this illness.....I want him back!!!

It has been almost a year to the date since his neuro symptoms began. Then all of the blood tests, scans, pokes and prods, this doctor, that doctor, the next doctor. This test negative, that test negative, blah, blah, blah....then boom, a positive IgG WB and here we are today.......

Many miles traveled, numerous drugs, more tests, more new symptoms, very minor improvements, $1000's spent, and still no clear answers.

We're going to go the distance with this treatment and at the same time continue to seek out alternatives.

Tomorrow is another day......we will tackle it head on.....good, bad or indifferent we'll get through it. Then maybe, just maybe, the day after that....my "old Lazer" will return.


Praying for answers and wellness for all of you!

LMom


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Nancy-OH
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Hi There,

I can't read everybody's responses, but wanted to add that I always felt that's one of the worst things about Lyme....WE DESPERATELY NEED A RELIABLE LYME TEST.

It's #1 in my book.

I was one of the fortunate(?) ones to at least have had a bullseye rash as proof, though I never saw the tick.

For those of you who didn't get the rash, there may always be a tinge of doubt until something happens with treatment to allow you to feel better and hence know this has been Lyme.

Whatever you decide to do, I wish you wellness! HOWEVER, from personal experience, I can tell you I had Lyme about a year before beginning treatment and been on abx now for almost two years and I'm starting to feel better.

Treatment is comparative to peeling away at an onion....one layer at a time. It really takes a long time.

PLUS, if you have co-infections, it is harder to treat. Again, we could sure use some good test(s) so these docs would know what they are working against!

Be well!
Nancy


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lymewarrior03
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Wow, lazer's mom, sounds like my story, only i've been treating a lot longer. You really put it well...exactly. It's so darn frustrating, and then when you DO get hooked into the LLMDs, they all have different styles, beliefs...and who do you believe! So I keep pushing forward, trying different things, for what else can you do.
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ConnieMc
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Yep, all of this does become a nightmare, particularly for those of us who are so "literal" by nature. All we want are those blacks and whites to spell it all out for us.

I had a negative test, but then accepted the doc's "clinical diagnosis" as by that time, I had been ill for 3 years and had done quite a bit of research. Even proceeded to go through nearly 10 months of IV. Of course, I was tested again after that, and had a big fat positive. CDC positive. I didn't know whether to be scared to death or to celebrate.

But my "literal" self was very happy indeed to see that positive in print.

But, Lazer, you were lucky enough to have a few positive Lyme-specific bands the first time around.

Give this more time. However dismal it seems, this disease is very difficult to treat. It requires long term treatment. I have rounded the corner, but took me a long time to get there.

Please do contact me if I can help!

Connie


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rosesisland2000
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Maybe it is time to get off the IV and go on orals which is recommended by my LLMD.

I still say that with all the information about Rocephin sending the bacteria into the cyst form, that you never be able to get "rid" of it unless you have a "cyst buster".

If I knew then what I know now, I'd never done the IV Rocephin...I believe it makes a huge difference in the patients who did do Rocephin and the ones who did orals only.

As I have said in the past, Dr. C of MO rarely, rarely prescirbes IV Rocephin as his countless experiences have shown him that doing the Rocephin, first, is a bad thing. Maybe you do need a new LLMD and one that treats for co-infections if you are not being treated for that already.

I hate to say I told you so, but, I did way back when you first started Rocephin and you shot that idea down. Maybe it time to
start rethinking your treatment as Rocephin has be proven and plenty of abstracts to support it, causes the Lyme bacteria to go into hiding leaving you even more sick.

Rosemary


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Lazer'sMom
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Rosemary,

I do seem to remember a post or two early on where you stated the IV Rocephin was a "bad deal".

I'm curious to know, does Dr. C do any IV meds or just orals?

Lazer did do oral Doxy and Cipro for the first three months of treatment and actually, he had an additional 3 weeks of Doxy prior to that which was the ONLY treatment the ID specialist he saw in the beginning was going to prescribe. So close to 4 months total on orals.

He had no positive tests for co-infections but was on Mepron early also.

I have suspected that babesia was a possibility due to some of his symptoms and one of the nurses at our clinic has stated the same.

Also, he was dx'd with "cat scratch disease" around 1997, was on zithromax at that time short term (aprox. 10 days), so Bartonella? I don't know.....

Due to the manner in which Lazer has responded to treatment, I have to wonder if his "bugs" have not been primarily cystic since the onset.

He had NUMEROUS and regular doctor visits from 1999 until receiving his Lyme dx last year. Most of these visits included handing him a script for biaxin, zith, augmentin, amox., "magic mouth wash" (remember that one Lazer?) etc.

It seems to me that possibly these abx courses sent the Bb into hiding......??

Lymewarrior mentioned a continuous herx above. This sounds very much like what Lazer has experienced. He has had only three, what I would call "clear and good weeks", since January. This followed a complete bottoming out in the entire month of March following the start of clinda and a flagyl week.

Flagyl is so not his friend. Every course of this drug, other than the first round, has beat him down HARD!!!!!

I know what the flagyl is in there for (cysts) so ditto on the primarily cystic.

IV zithromax/clindamyacin are his current course and this has been pretty much a walk in the park for him ........ so far.

Levoquin will be added soon. And of course, it will be time for flagyl again next week. I am very anxious to see how it will go this round.

Well, I've digressed from my original thought regarding orals. If you don't mind, could you expand on Dr. C's oral protocol further. Not for argument sake but for knowledge sake.

Email me privately if you wish.

L'sMom


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Lymetoo
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I only have a moment to respond here......
hopefully, Rosemary will be back soon....Dr C does use IV when the patient doesnt' respond to orals, or when it's necessary due to other circumstances.

I don't think he uses Rocephin very much; at least that's my understanding. Orals work very well, but you can't expect to knock out this disease in 5 months.

The clindamycin is for babesiosis, so the fact that this one has knocked lazer flat is indicative of a problem there. Most drs combine clinda with plaquenil or quinine.

Flagyl is one of those necessary evils! UGH! It makes me super depressed, so that one was really tough for me.

I hope you can hang in there, lazer....Lyme is a terrible disease, but it's even more terrible when it goes untreated....or inadequately treated.......don't stop too soon!

------------------
oops!
Lymetutu


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ConnieMc
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Rosemary -

I don't really think the treatment itself is the issue here. Lazer is obviously struggling with the fact that he is unsure if his diagnosis is correct, and frustrated with the fact that he is not getting better.

Saying "I told you so" simply isn't a nice thing to say to a person who is down to begin with. Lazer needs support here, not criticism. You managed to drive him off the board previously with the very same tactics. I am sure you remember that.

What Lazer needs right now is support. Not comments like "I hate to say I told you so, but, I did way back when you first started Rocephin and you shot that idea down". You are doing nothing more than adding more confusion and frustration to his situation.

Frankly, you don't know that what you are saying about treatment methods is absolutely correct, do you? None of us do.

I can say that I am doing fairly well at this point following the very same treatment plan Lazer has. Plain and simple, it takes time. Lots of it.

Lazer's treatment isn't necessarily failing, as you are telling him it is. Lyme is not easily treated, and even when it is forced into remission, the body still has healing to do.

Hopefully, Lazer can get back into his positive frame of mind, to put his full force into fighting this monster.

Let's try to support that process!

Connie


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lazerorca
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yeah I have slacked off terribly on my IV infusions especially this week. it is hard for me to stay focused on finishing on this treatment now. i have prolly skipped more infusions this week than i have actually done. i have felt better being off of these meds for the most part this week. I am beginning to believe these "herx" reactions i am having are maybe just reactions to the meds themselves even if I do in fact have lyme disease.

there just seems to be too many variables around. I don't like that my diagnosis was derived from inaccurate testing and clinical observation.

and yeah i have said many times that I have been bitten by ticks, but I can almost guarantee that the GOOD MAJORITY of them were lone star ticks and not deer ticks. I would go out on a limb and say just about ALL of them were lone star ticks with the exception of the few times I have been bitten by what locals call "seed ticks". I mean I know the nature of deer ticks from what I have read and yeah I could have been bitten and not known. my exposure to the outdoors and in areas where ticks frequent is higher than the average person becuz i was an avid fisherman... and a pretty much shorebound fisherman at that where i would sit around for hours and hours on the shoreline at the edge of the woods where deer probably came for their water source, the more secluded the spot the better. but I know soo many others that fish and hunt in the same areas as I do and do not have lyme disease.

personally IMO i don't think lyme is quite as widespread as many believe, and I don't trust ANY of the stats of info I read anywhere from this site, ECU library, or any gov't source. I believe all of these stats or info have some kind of bias or motive. and money drives either side of this lyme argument. this makes me even more antsy and untrusting. maybe I am looking too hard into things. maybe anxiety is yet another lyme symptom in the many. maybe my suspicions are right, who really knows. RIGHT NOW no one CONCLUSIVELY can tell me if I have or don't have lyme disease. I just pray that God is leading me in the right direction.

i really do appreciate all of the support i get from this site however. everyone seems to be positive and not critical of others. i can't really say that for other non-lyme forums that i go to just for leisure. many of u have been going through this sh*t longer than I have and it is somewhat comforting that I do hear relative stories about the same kinda crap i am going through. so i really do thank you and I hope I don't step on anyone's toes with my comments. i am just angry and frustrated. in a few days I might post something on a completely different note.


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lazerorca
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^^^^^ and yeah about the rocephin... although i am not very trusting it seems of my diagnosis, i am very trusting in my treatment course. i was given a regular 4 week round of flagyl, and as u know that is a cyst buster. the infusion department and my providers TOLD ME that rocephin chases lyme into its cystic form. but i don't know if u know anything about the mitotic cycle of many prokaryotic bacteria, but in order for bacteria to reproduce they have to let down defense mechanisms for cell division. so yeah the antibiotics may not be killing cystic Bb, but the Bb is definitely not reproducing while on Rocephin. my treatment was often pulsed with clindamycin in conjuction with Rocephin, so this was not rocephin monotherapy. many of the studies I have read about rocephin not being effective were studies performed with only rocephin and for short periods of time.

my experience with rocephin has been very mild in comparison with clindamycin and flagyl. and my lyme doc didn't not start me out on rocephin. it was oral doxy and cipro. and right now course of therapy is OVER with rocephin. I dont' do rocephin anymore. my lyme doc knows the limitations of rocephin.

[This message has been edited by lazerorca (edited 04 June 2004).]


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3greatkids
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O.K. Lazer, I know you have been sitting on those sweet river banks and catching some beautiful Carolina days. ME too .That is most likely how I got Lyme, skiing on the Tar and cooking out a nd acting like there aint no tommorrow!I could have cared less what was crawling on me or swimming beside me! I want you to get better.We are lucky to have a Dr. who believes in us when nobody in the med. community will.Or maybe they give us something to chew on to keep us quiet while they scratch their heads(wrong diagnosis),mine was Fibro,what a joke that was. Anyway, this recovery is hard, demanding on us,makes us contemplate about many things.Recovery is like a graph, you go up a bit, then down,up then down,but remember the down is not as low as before you started.I have been off my I.V. meds this week too. Just could not handle but so much life has to offer.I guess,it is time to go ,getting ready for a big horse race today,watch it and take your mind off this stupid,lame,sorry,horrible Lyme.You will get better! We are rooting for you!
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troutscout
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Lazer,

My Friend....

Come here, sit down, take my hands...no...both of them, please.

Ok...now let's take a DEEP breath...felt good didn't buddy?

Now...we are of the same breed you and I, so could you for one minute just listen to what I am saying...and, not what your doubts are telling you>

Great!

My friend I have sat here and seen many that are no longer posting here....because they are WELL go through EXACTLY the same thing you are....no, stop....look me in the eyes....both of them, please.

There you go...better.

Now, take that breath again.

Close your eyes, and dream as I do, of those beautiful prestine waters...the breeze on your face, and fish jumping after an airborne insect...awwwwwwwwwwwwwwwww.

Now...I seee that you are smiling again....good, me too.

Hey. you know what? I do that A lot...except, I am on a mmountain stream, or playing flag football again, running with my kids and laughing...oh, what a thrill it is!

Now...open your eyes and focus on me again.

Here's what I propose to you. You have Lyme. You also have something else. You are sick, very sick indeed..now, the ONLY way you will get better is if you stay the course my friend.

Buddy, this a marathon, and you are just hitting the 'wall' right now...that's all.

Now, next time you get infused,...or hesitate, and wait at the door....sit in the car, or lie in bed thinking you want to stop this...

Do me a favor...close your eyes and do what we just did, again...and, then carry on....open the door, drive to the infusion center, get out of bed....but most of all...

Have faith...in yourself, its a damned disease, its NOT you...and, we need YOU back...all the way...down to the waters edge....but, for real.

God Bless,

I LOve Your Spirit,

Trout

------------------
Now is the time in your life to find the "tiger" within.

ILDA (319)287-6116
-24 hour hotline
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info


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arg82
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I just have to say that that was a very moving post there Trout. I know it wasn't aimed at me but it struck a chord in me, too. I think we all go through these periods of doubt throughout treatment when things are going as well as we'd hoped, and even sometimes when they are. That visualization exercise is great. I do some form of it myself but not often enough. Thank you for reminding me (and everyone) to check in with ourselves when we are in doubt.

--Annie

------------------
To get where you need to be
You'll go through anything.
--Shawn Mullins


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Lazer'sMom
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Trout,

I thank you from the bottom of my heart for that post......you're a class act!!

L'sMom


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Piercethedrk
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This is going to be short, but I think this is what you need.
Don't freak out. You have lyme.
Ask for a PCR if you like, just know that the yield is terribly low. I had serum blood and urine samples sent to igenex and md labs. I got ONE positive on the urine sample I sent to MD labs. I think I was lucky.

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Ziggy
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Dear Lazer,
I don't write much here, I'm just so busy, but wanted to reply to a couple of things you said. I can relate to what you're saying and I've been down that road and many strange and different roads out of frustration and curiosity and determination.

I've been doing really well for about a year after (like you) being bit by many ticks, then going nearly 30 years without knowing why I've been so sick. But I can't tell you what worked for me, because it is beside the point right now and anyhow, everyone is different, and mostly because, I am not a doctor. I'm a volunteer director of an organization that helps people learn more about Lyme and co-infections.

Although we have created an organization and can receive donations, we don't receive (and wouldn't accept) money from drug or insurance companies, or anyone else, though individuals are welcome to contribute. The directors pay for everything and most of us are very poor and we are sincerely dedicated, so I hope you can believe my words.

Your mom said you had cat scratch fever. That is Bartonella. My son had cat scratch fever too, before any doctor tested for Lyme five years after Bartonella was discovered.

My son was taking abx for a year before his Lyme doctor knew about the prior diagnosis of cat scratch fever and so he has been taking medicine for Bartonella plus Lyme since then. I didn't hear from you or your mom whether you were taking medicine for the Bartonella (cat scratch fever). It is different medicine from the medicine for Lyme.

Bartonella can make you very sick and hang on for a while too. Search for Bartonella at our web site http://www.wildernetwork.org (there is a search box at the bottom of each page) and read more about it by Tincup who is an excellent researcher.

Tincup is a volunteer too, no one ever pays her although she may deserve it, she researches and reports out of the kindness of her heart, so you can believe what you read from her too. She also used to post on lymnet alot, and I mean ALOT!! (for free!!) So you can search any subject I mentioned in this post, plus Tincup here too.

You said you study alot and don't need links, so I am hoping you will search your fave site, mine is google, and learn about how other ticks, including lone star ticks can carry many different diseases including Lyme.

So, it's not just deer ticks (AKA seed ticks) that carry Lyme. I've read research where it is even found in dog ticks too, although, I've read other sites that deny it, maybe they didn't see the research.

Heck! i've even read research about Lyme detected in mosquitoes, fleas, lice and more! Dunno if you've ever been bitten by any of those critters, but with just a bit of research you will find that the deer tick isn't the only carrier of Lyme.

Lone star ticks, I've learned in my studies, are famous for transmitting rocky mountain spotted fever, and relapsing fever and other "Lyme-like" diseases. All the diseases any tick can transmit can make you feel horrible and you can get more than one disease from one bite.

Like others have already said, it takes a really long time, years for some, to feel better. Please hang in there. Dr. B's protocol is published online and suggests many complementary treatments in addition to antibiotics to help fight tick-borne infections. Like a strict diet and detox to help clear toxins from the disease(s).
(http://www.ilads.org/burrascano_1102.htm)

His wisdom works well with lots of illnesses, especially the tick-borne variety. The supplementry stuff is good advice (IMHO) for many kinds of illnesses. Just in case you're sick with something else. Do remember though, you've had many tick bites and ticks of all kinds can transmit many diseases.

I can't say if you have Lyme or anything else, but I know that Bowen ( http://www.wildernetwork.org/bowen.html ) takes pictures of any Lyme, Babesia and/or Ehrlichia they see in your blood and seeing the pictures helps some people.

Also, I don't know which bands showed positive on your test, but ILADS says " for patients not vaccinated for Lyme, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure." (http://www.ilads.org/guidelines_summary.htm)

I hope these words help some and I hope you find your answers, but more than anything I just hope you begin to feel better ASAP. You (and your mom) can write to me at WILDER Network. Just click the dragon at the bottom of any page at our web site and write to 'ziggy' in the subject. If you'd like to write to my son, just write to 'shadow' in the subject and we will be sure he receives the email.

'ziggy'

------------------

http://www.wildernetwork.org


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lazerorca
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I think on tuesday I am going to ask them to draw blood and run another round of tests. this is prolly unnecessary from my doc's point of view, but I feel that it is necessary for peace of mind. a strong positive would put things to rest for me. I know that it is unlikely, but maybe after months of antibiotic treatment, the Bb may have been drawn out and antibodies may have been produced. i did have specific bands, but i also know how lab testing goes.

I know I am not a professional, but i have taken over 300 hours of labs in college and i know how inaccurate yields and lab testing can be and so on. I have had very many lab samples go bad, and the professor will tell us "don't worry about it becuz it happens all of the time, just put why u got the result that u did." we have done what many would call very archaic PCR tests on e.coli and other bacteria. although e.coli is probably a bad example to use since e.coli is very easy to capture and culture while Bb is not, but people in my labs screwed up many gels and agar scrapes. even though we are probably using less sophisticated equipment and lab techniques that probably don't give the most accurate results, i do know that most of the errors in lab are caused by human error. i get false positives ALL OF THE TIME in my organic lab. I had one yesterday doing alkene testing on an unknown. got a positive for alkenes on an aromatic ring with no alkenes. there are many tests where cleaning agents used on the equipment such as acetone will yield positive or negative tests if these agents are not completely gone from the eqiupment.

but anyway, I have had LOTS of favorable results from lab. probably 90% of the time. I just want another positive test.


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dmcbrayer
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quote:
Originally posted by lazerorca:
I think on tuesday I am going to ask them to draw blood and run another round of tests. this is prolly unnecessary from my doc's point of view, but I feel that it is necessary for peace of mind. a strong positive would put things to rest for me.

Would a picture of the bacteria in your blood give you peace of mind?

If the answer is yes, then get tested by Bowen.

DMC


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HaplyCarlessdave
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I realize if you don't have the "smoking gun" of the tick bites with the rash, it might be hard to accept a lyme diagnoses.
I had the ticks and the rash, but I had the "standard treatment'- 6 weeks doxy at 200mg/day, and failed to get better. The treatment failure was partly due to too low a dose of abx and too short a treatment sequence but the co-infectuions Ehrlichia, and, especially, babesiosis, were definitely a big factor, too.
When I finally found a good doctor ("LLMD") and got the serious treatment, I was on super high doses of abx and other stuff (atovaquone and artimesia, for babesia, for one thing) for well over two years. For a long time it didn't seem like I was getting better, but today, here I am, off abx and doing just about everything I used to do. I hope you start seeing results soon!
Don't be impatient! These diseases are nasty. Do get tested for co-infectins by a good lab. Be sure that you are given another final sequence of tinidazole or metronidazole to kill the cystic forms of Bb (lyme bacteria) that could cause a relapse- the coinfections may have made it more resistant when you treated previously.
DaveS

[This message has been edited by HaplyCarlessdave (edited 10 June 2004).]


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lazerorca
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I have been tested for co-infections... they came back negative. but I know that these tests are inaccurate also
Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003  |  IP: Logged | Report this post to a Moderator
   

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