To give you a quick synopsis of my story, I've been ill for 5 years but was only diagnosed a year ago with lyme. So this disease wreacked 4 years of hell on my system. I saw improvement on IV Rocephin and Flagyl from last December- March but upon getting off Rocephin i quickly relapsed. Subsequent Rocephin doses weren't really that helpful and I sort of remained the same.

Then in late September my llmd put me on 5 days a week of Keter and 2 days of Flagyl. I repeat the process the second week and i take the third week off from medication.

Not only am I not feeling any better, I now have additional symptoms. Since starting the Ketek a month and a half ago some of my short term memory issues have come back and now I also feel some weakness in my arms and legs. I can still do things like walk a mile and lift a suitcase, but my shoulder joints feel kinda weak, making my arms feel like they're just dangling.

Then I read things on lyme websites like the following, which i read today. This is from www.familydoctor.org: <<
<>

Well if these nervous system problems are rare, why the hell am I having them?

As for co-infections, i've tested negative for ehrlicia in the past and a few months ago my doc ordered an IGG and IGN for babesia which was negative. Thus, I'm not being treated for co-infections at this time.

I'm very down about the way I'm feeling. It feels like I'm losing the battle and I don't know where to turn or what to do.

Just feel like venting.....and sharing.....please help.

Marc
 

secondly, what i pasted from that website was deleted....here's what it said:

"The symptoms of the nervous system disorder caused by late lyme disease may include trouble concentrating, loss of memory, muscle weakness, and tingling and numbness in the arms and legs. However, lyme disease rarely causes such nervous system problems."

I asked if it's so rare, why the hell am I suffering from everything listed there?

So frustrating.....
 

just about the time I think I'm doing good then wham I'm down for the count......simple things like house work and yard work are totally impossible anymore...

there are still so many questions to this very complicated disease......one thing I know for sure is how I mentally deal with it...

being a very vibrant, energetic, outgoing person seems to be the kind of people it centers on......so mentally I'm always praying and learning as much as I can about it......

educating myself and talking to others has helped me beyond belief.....I'm on the verge soon of going to the rocephin on iv......also having to quit my job after 30 years with no retirement......and going thru a divorce after 31 years.......

but prayer and my faith in God along with communicating with others with Lyme is what is keeping me going.......but I also have to admit there has been a huge change in my activites.......I used to feel guilty about resting and relaxing.....but now I do it because it's necessary to survive......

keep your head up and know there are others like you that want answers and desire to be healthy again.......let's pray for and support each other and never give up trying to get our lives back on track.......

------------------
Debbie V.
 

I got this in 1994...got diagnosed in 2000...treated for 2 years and in less than 3 weeks relapsed (it was BAD!) Still being treated and very impatient with my progress.
I had 9 months of feeling well after another year of treatment, relapsed again, and am in treatment again.

Tests for coinfections are as unreliable as tests for lyme. My greatest progress was made after I was treated for babesiosis.
If you have a coinfection, the lyme will not be resolved. Would your llmd consider treating you with malarone? or Mepron?
It would be interesting to see if you respond.

When lyme is in the CNS as it is for so many of us....nervous symptoms as you call them...are not rare at all. They are horrid. Whoever wrote that doesn't have a clue.

It sounds like the Ketek (I'm on it,too) may be stirring those bugs up and you are feeling some new symptoms as a result. Lousy as you feel, it is perhaps a very good sign!

We all get down as you are now. Hard to keep your spirits up when your life is in limbo. But I encourage you to think positive....and assure you that you will feel better. Hang in there. Patience and fortitude are required and then some.

Healing thoughts to you.

nan
 

I can relate to that whole "if it's rare why do i have it?" issue. I developed Bells Palsy just 3 days after my bulls eye rash showed up. My DR said "I'm surprised you got that so soon". ??? Don't be surprised...tell me WHY! LOL If I've learned nothing else from this experience (and this forum), I've learned that with Lyme, anything goes!

On a positive note, from what I understand of Herx reactions, it sounds like you may be having one. Here's some info I copied from an old post on herxing.

~~~~~~~~~~~~

Lyme Disease
What is a Herxheimer Reaction?
By Donna Herrell
Founder, Lyme Disease Information Resource

Overview:

The herxheimer reaction, nicknamed "herx", otherwise referred to as Jarisch-Herxheimer (J-H) is a phenomenon originally observed in the treatment of Syphilis, but later found in other illness [1].

In general terms, it is described as a temporary increase of symptoms when anti-syphilitic drugs (antibiotics) are administered.

What is known or speculated about Lyme disease herxheimers are based heavily on the reactions seen in Syphilis. [2-3] This is due to the fact both diseases are caused by a bacteria known as a spirochete, the former being Treponema pallidum, the latter Borrelia burgdoferi (B.b).

However, the herxheimer reactions in Lyme disease are not identical to those seen in Syphilis, especially in terms of timing, frequency and duration as noted below. [1-5]

In Lyme disease it is thought that the cause of herxheimers are the result of endotoxin release. [2,5] That is toxin(s) within the spirochete that are released as the B.b are killed or broken down. This may be a result of the toxin(s) itself or the body's immune response to such.

Symptoms:

As mentioned, the general description is a temporary increase in symptoms, but also included is the development of new ones.

More specifically the most common events include: increased joint or muscle pain, headaches, chills, fever (usually low grade), hypotension, uticaria (hives) and rash. [1-5] A multitude of other symptoms have been described.

Worth noting is that hives and rash are sometimes mistaken for an allergic reaction. [2] It is up to one's physician to determine this.

However, with close observation and proper treatment (see Treatment) may prevent unnecessary cessation of therapy.

In more severe cases of J-H, a reduction of the dosage or temporarily cessation of the treatment has been recommended [5].

Timing, Frequency and Duration:

This is individualistic and herxheimers can occur within days to weeks after the institution of antibiotic therapy.

In some patients they occur only once or twice (if at all) and with others continue throughout the course of treatment, usually lessening in severity.

They can occur and are more often described in cycles (example: every 4 weeks) and have been reported to last from days to weeks.

It can be very beneficial to document any exacerbation. Some physicians use this as a guideline for treatment. Further, it may help differentiate herxheimers from the normal symptoms or progression of Lyme disease.

Treatment:

Herxheimer reactions can be very difficult on patients and affect compliance with therapy so supportive measures should be sought or utilized to lessen discomfort if needed.

The use of aspirin, NSAIDs (non-steroidal anti-inflammatory drugs), pain medication, muscle relaxers, hot baths or others remedies can be appropriate. Of note, some have found Benadryl helpful even in the absence of rash or hives.

The good news is that the herxheimer is thought to indicate that the antibiotics are indeed working and that following each worsening may bring about more improvement.

Though the lack of a herxheimer reaction should not cause anxiety if symptoms are improving.

Other considerations:

Something often overlooked but can present with similar symptoms is Candida (yeast) infection.

Treatment with acidophilus and if needed prescription medications such as Nystatin or Diflucan can be utilized.

Sources of Information:

Lyme Disease 1991 - Patient/Physician Perspectives from the U.S. and Canada The Jarisch-Herxheimer Reaction James H. Katzel M.D.

Managing Lyme Disease 1996 Joseph J Burrascano M.D.
Principles and Practice of Infectious Diseases 4th Ed. Mandell, Douglas and Bennett
Seronegative chronic relapsing neuroborreliosis. Lawrence C, Lipton RB, Lowy FD, Coyle PK Eur Neurol 1995;35(2):113-117
The New Lyme Disease 1998 Joseph J Burrascano M.D.
See Jarisch-Herxheimer / Jarisch-Herxheimer-like Reactions
Lyme disease, Tick-borne Relapsing Fever and Allergy
Document and reference collection (in progress) November 15, 1999 http://www.x-l.net/Lyme/abstracts/herx/herx.collection.html

__________________________________________________________________________

This document is for informational purpose only and not written by a medical professional. This article may be copied for personal use. For republication in any format please contact the author at [email protected]

Copyright � 1997
Lyme Disease Information Resource http://www.x-l.net/Lyme/HERX.html

 

{{{{INTENSE}}}} Lyme symptoms that you've experienced in the past,

AND

New Lyme symptoms that you've never experienced before.

He also says, "It's the turtle that wins this race against Lyme Disease and NOT the Hare."

I'm not surprised by the relapse after Rocephin...seems for Rocephin to work, you'd have to take it for a very, very, very long time, and, then only during or at the end of Rocephin, you'll need a cyst buster antibiotic.

Also, you have been sick for quite awhile and it will take awhile for you to get to either a cure or a good long remission.

Hope that helps you to know that you are not alone...keep reading more posts.

If you've been given Tincup's Links for new LymeNet members, start there...the more you learn, then the better off you'll be...keep reading more posts.

Here's the link for new LymeNet members:

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Good wishes you way...

Rosemary

 

It sounds as though we suffer from similar symptoms. And from your treatment protocol, it sounds as though we might be seeing the same doctor.

I just finished IV Rocephin and Flagyl in August and started Ketek recently. I am also not feeling any better. In fact, I feel worse. Let's hope we're herxing. There isn't much we can do but stay the course.

Good luck,
Scott
 

Just because there is an article somewhere by someone who claims to know something about lyme doesnt make it true.

and I also wanted to mention that just because you test negative for a coinfection doesnt mean you dont have it.....

for instance i was told by my dr. that they have identified 11 strains of babesia that they dont even have a test for.... so if you have symptoms of any of them they should be treated.

The other thing I wanted to mention is that although many people can pulse without a problem... if I go 5 days on cefzil and flagyl and 2 off....

I get so much sicker for not get any antibotics those two days. A week and i wouldnt be able to get off the couch even with the pain meds im taking.

I understand how hard long term treatment can be... I have had lyme for 17 years but I was only diagnosed spring 00 and have been in treatment and disabled for 4 years...

Ive never heard of ketek..

Flagyl helped me alot... it goes after lyme and babesia It really has been one of the few orals that has helped me....

why is your dr only giving you the flagyl 2x a week?
also i was wondering what your dose was.
below 1000 a day i'd get sicker.

best wishes

Hope you've been able to get through all the posts posted as response to your post. You can just click that Post Reply button that is found at the top AND the bottom of this page you are reading....thanks,

I hope all is going well...I'd suggest you find DocDave's post that was on Medical, first page, yesterday.

He discussed or presented several reasons why some of us get better and some of us do not. Very informative post...it may even be still on the first page for it was a very good discussion. It's titled My Theory of chronic Lyme by docdave130

Let us know how ya doin, ok?

Rosemary

 

Rose, I didn't care for docdave's post that much. I read it, but didn't like it. I need to read things that are uplifting right now, not editorials that tell me I'm always going to feel the way I do now, at the tender age of 27.

I know he's saying in chronic lyme you may be left with symptoms of damage, but what about stopping the progression of the disease? Is that possible? If I can just stop it from progressing I can cope with any damage but if I can't I'll just continue to regress until I die.
 

I know how frustrating this is; I've been there.

You've done the hardest thing....gotten a diagnosis. Doesn't matter how long it took; a dx is half the battle.

Please realize Lyme heals at a snails pace; everyday you are one more inch in the right direction....keep it up! You can do it!

---Nancy

 

You will not only stop this disease from progressing, your health will improve and you will feel more and more like your "old" self. Have faith. The treatment can seem worse than the disease....but unless you really do have a coinfection...you are feeling rotten probably because the medicine is working!

Where did you get your tick bite?
 

There's no simple answer. We are dealing with an incredibly complex disease that affects each of us so differently, and as a result responds to treatment just as differently.

It is not uncommon for you to feel discouraged and cheated out of being a vibrant young adult. Those thoughts are very very normal.The important thing is that you seek out the care of a good llmd and keep trudging onward.

I know that you are looking for uplifting words and not editorials, so I will close with the fact that people DO get well and I am sure you will be one of them!!!!
cootiegirl
 

Keep hanging in there....
 

I know you dont have positive tests for them, but TRUST me that does not matter.

Would your doc just treat you according to symptoms of them?
 

I have bart, babs, lyme. I do not think I have erlichia, although I did test positive for it ONCE, but I was on enough to kill it and never tested positive again.