I've had lyme and friends for 12 years now - been on treatment for 5. The last 5 years I've been on Rocephin, (and MANY other atb's.) started at 50 mg and increased slowly to 2 g per day, which is what I've been on for the last 2 years roughly. I'm currently also on Zithromax 250 mg once a week.
My biggest problem is that my neuro symptoms get so much worse on the Zith. I understand that we have to treat the cyst forms, but I had to hold this week's dose, because my symptoms just would not abate.
I'm getting pretty discouraged, as this is how it's been through the whole course of things. Right now, I'm having bouts of vertigo, I feel just regular dizzy all the time, my balance is off just enough that I feel like I'm walking on a boat, and it makes me nauseated sometimes. My brain feels swollen and I can't think half the time. I get teary eyed one minute for no reason, and the next it's gone. Super sensitive to sound, people talking to me sometimes, etc.
I usually get a break for a few days, before I have to take the next Zith, but I'm not now.
I know I'm just rambling, but I'm so tired of this....I'm better than I was 5 years ago...I'm out of bed...but some days you just get tired of giving your self a pep talk. Or having your spouse give it....that's the worst ;-)
Anyway, I need a new brain, mine's broke. Anyone have any ideas on how to help it, or know what I'm talking about? Thanks.
Posted by Jamers (Member # 28016) on :
Did you treat Babesia and for how long?
Posted by chastain (Member # 34236) on :
Desertlily, I am so sorry for what you are experiencing. I know EXACTLY what you mean when you say you feel like you brain is broken. I used those very same words when talking to a good friend who has Lyme themselves a week or so ago.
I want you to know that I experience the hell of vertigo on a daily basis. It is probably my worst symptom. I also am crying very easily and often lately, so I know what that seemingly out of the blue hyperemotionality is like as well.
I wish I had words of comfort to offer and a promise that things will get better quickly. Instead the best I can offer you is my sincere sorrow for your suffering and a message that you are not alone in what you are experiencing. I wish you health and peace. Jess.
Posted by AuntyLynn (Member # 35938) on :
IV Rocephin? What was your longest continuous course?
Seems you have classic symptoms of neuro Lyme, but I wouldn't rule out co-infections. Have you ever been tested for any co-infections? Or have you ever treated for parasites?
I too, am sorry to learn of your terrible long suffering. Have you stayed with the same LLMD the whole time? Perhaps it would be helpful to see another diagnostician. Sometimes doctors can "get stuck" too. Hoping for a breakthrough for you - and soon!
Posted by Lymetoo (Member # 743) on :
Treatment for coinfections is HUGE. I hope you have a GREAT doctor.
I opened this because I want a new brain too!! But yours sounds way worse off than mine!
Hugs and love to you!
Posted by Carol in PA (Member # 5338) on :
Sensitivity to sound is a symptom of low magnesium.
People with Lyme are low in magnesium, as the Lyme bacteria use it up in our cells, and the liver needs it to detoxify poisons.
Are you taking supplemental magnesium? All of the enzyme processes in the cells need it, and when it's depleted it causes many symptoms. Anxiety, depression, headaches, insomnia, panic attacks, muscle twitching and spasms, bladder spasms, constipation, palpitations, sensitivity to light and sound, etc.
The infected cells thus want a chance to heal and buy time.
ADP + ribose = DNA repair.
PROVIDED a pathogen is not "stealing" ribose (5 carbon sugar) to make its own RNA -> DNA.
"An aberrant activation of cAMP-controlled genes is linked to the growth of some cancers."
Wikipedia.
Bb triggers bystander cell death (SY cells) in the brain.
Yes, I can link.
Posted by lymeboy (Member # 24769) on :
Has anyone used ATP fuel? Ive been considering buying it. It is supposed to be great for brain function and energy.
Posted by Marnie (Member # 773) on :
Many of our antibiotics inhibit bacterial DNA topoisomerase...which do this:
To replicate DNA must unwind - becoming circular, the two strands break apart, add amino acids on both strands, and each rewinds - simplified. From one double helix DNA -> two double helix DNA molecules.
But Bb can and does look to become resistant to the type II topoisomerase inhibitors.(Explaination further down.)
...inhibiting only bacterial topoisomerase IV (type II topoisomerase) and DNA gyrase (another type II) isn't sufficient to destroy Bb, IMO.
Need to take a hard look at Type I topoisomerases!
And combine both...inhibit Type I and Type II topoisomerases.
Berberine.
Type I topoisomerases cut one strand of double-stranded DNA, relax the strand, and reanneal the strands.
(Reanneal means the 2 strands join to become one.)
Type II topoisomerases cut both strands of the DNA helix simultaneously in order to manage DNA tangles and supercoils.
They use the ***hydrolysis of ATP***,
unlike type I topoisomerase.
To obtain energy to do cellular work, the cell hydrolizes the ATP, releasing the stored energy and
forming ADP and phosphate once again.
It would appear we need to cut Bb's DNA AND simultaneously prevent "reanneal" of the strands (recombine).
It would be helpful if he went a lot slower, but...
"One of the most common mechanisms by which bacteria acquire
resistance to fluoroquinolones
is by
spontaneously occurring mutations in chromosomal genes that alter the target enzymes -- DNA gyrase and topoisomerase IV or both.
The frequency with which these spontaneous mutations occurs may be in the range of 10-6.
The effect of mutations on the activity of an individual fluoroquinolone will vary depending on the number of mutations, the location of the mutations and which target enzyme is affected.
If a mutation occurs (either in the gyrA or gyrB gene) that alters DNA gyrase and results in a
reduced affinity of the fluoroquinolone antibiotic for this enzyme, the organism will become resistant.
All we're talking about is mutating/altering a PROTEIN.
In scleroderma, there is an antibody to topo I.
It is this:
Anti-Topoisomerase I (mouse IgG1 isotype).
What was needed to respond to Bb's OspB was IgG1 KAPPA.
The addition of the light chain (kappa) makes a HUGE difference.
Yes, there is a man-made form of IgG1K and it is very expensive and binds to IgE.(Some people with very high IgE have no allergic problems.)
"Magnesium-dependent functions in the synthesis, release, and activity of cells of the immune system have been reported from in vivo and in vitro studies.
Magnesium deficiency in animals is associated with impaired function of both humoral and cell-mediated immunity.
Production and activity, including cell adhesion, of granulocytes and mononuclear phagocytes are affected by the availability of magnesium.
Levels of immunoglobulin G (IgG) may be reduced,
and IgE increased during magnesium deficiency.
The latter observation suggests a role for magnesium in immediate hypersensitivity which is supported in some studies.
Complement activation by the alternative pathway, but perhaps also by the classical pathway, is magnesium-dependent.
Data indicate a role for magnesium in the proliferation and function of lymphocytes.
For example, magnesium is required for the adhesion-recognition phase of the cytolytic T lymphocyte (CTL) reaction.
Under some circumstances, magnesium may be anticarcinogenic, while under others, it may promote tumor growth.
In spite of this exception, magnesium is a vital nutrient for optimal immune function."
Mg restored the "health" of our OWN antibody (classic complement pathway) to Bb's OspB.
Most, but not all lyme patients have the first "allergic" (IgE) "rash" response to Bb. Mg low = IgE up (Mg is given for status asthmaticus.) Mg low = IgG levels down.
We needed sufficient Mg to make our antibody to Bb' OspB ...IgG1 KAPPA. Instead we made a damaged one and
the damaged original -> damaged copies.
"Late B Cell Depletion
with a Human Anti-Human CD20 IgG1k Monoclonal Antibody
Halts the Development of Experimental Autoimmune Encephalomyelitis in Marmosets"
That is MS (Experimental Autoimmune Encephalomyelitis)...halted by IgG1K antibody.
[ 07-26-2012, 01:49 PM: Message edited by: Marnie ]
Posted by undiagnosed22 (Member # 28152) on :
Desert lily, I'm so sorry you are feeling this way. I am not a doctor, but your treatment ( from my non professional opinion and only based on the treatment I have received) doesn't sound that aggressive. I am still treating -I have been with one of the top llmds, many say THE top, and I am on wayyyy more than that. I am no longer on iv,but when I was I did Rocephin, and 2-3other abx daily. I still have a ways to go with physical and Neuro sumptoms, but I am much better and definitely functioning and able to work full time. I am also simultaneously treating babs and Bart. I hope you find some relief soon, I feel so bad you are feeling this way.
Posted by desertlily (Member # 13894) on :
Thank you so much everyone for responding! I really appreciate the kind words of support. Unfortunately for all of you, it's nice to know that people understand how you feel! ;-)
To try and answer a few questions:
Babesia - I was treated for that first with Mepron and a tiny dose of Zith for about 4 months (back in 2007). I now test negative for it.
The reason I was started on so low of a dose of Rocephin and gradually worked up is because I herxed SO BAD at the beginning that we had to go slow and let the symptoms guide the progress. That's how I've done with all antibiotics, and I've been on many different ones. It's also why I only take the Zith once a week, otherwise my symptoms get out of control (apparently they seem to be doing that now, that's why I held the last dose).
Magnesium - I take almost a gram a day orally of a very good, readily absorbable type (can't remember which one right now). I have done IV mag in the past, to be honest, I haven't seen it make much difference either way. (IV vs. oral that is).
I do have a wonderful LLMD in CA (I don't think we're supposed to use names, so I won't), but I have considered someone in CO, just to get a pair of fresh eyes on it. I'm just not sure anymore.
Over the years, with all the different things I've tried, I'm starting to wonder if when you get to my age (52, been sick since 40) that some of the damage might be permanent. I'm almost afraid to keep pushing treatment, as I then reach a worse plateau.
The exception is that when I go off the Rocephin, I do better for a few days, then I go down hill big time. So that's why I knew I needed to be on some type of cyst buster....but what do you do when you don't tolerate that?
Anyway, again, thanks to all of you!!!
Posted by Pocono Lyme (Member # 5939) on :
I've been on that boat too. For years! Since around 2002. Both babesia treatment and bart treatment were necessary for me. Each had its own type of vertigo.
I think the clue for you is that you relapse so quickly. That would be a coinfection, not lyme. My vertigo did get worse with treatment before getting better.
I pretty much confined myself to bed or the couch as it wasn't safe for me to be upright. Hang in there and it's not too late.
Posted by BGearhead (Member # 30840) on :
Man..Magnesium helped me out...started twitching every day..all over...was driving me nuts. Started the magnesium and it has all but stopped. I learned it from a MS forum.
Posted by desertlily (Member # 13894) on :
manybites - do you have someone that is treating you, or are you doing all of this on your own?
I ask this because I feel like I need someone to help me with a plan, my brain is not clear enough to be able to research what I should be taking.
Also, I think one of my problems is the inflammation that kicks up when I herx, so I would guess detoxing is what is needed?
Could you explain that in a little more detail please? (The products you use and the amounts.)
Thanks!
Posted by Marnie (Member # 773) on :
OmegaBrite will help, not cure, but help.
It is UNIQUE and unlike all the other Omega 3 supplements.
I promise!
3 a day with a meal that has some fats (like having to take Mepron with something fatty).
Sorry, not cheap and only avail. on the internet.
There are some brain cells that are taking a hit because of the inflammation. Bystander effect.
Posted by Marnie (Member # 773) on :
"I was even suaciadial when MY Bart had exsploded and BABESIA came into the picture.beilive it or not my cd57 was hig 110 but I was highly neuro and FULLY POSITIVE in maximum in neuro lyme , again THAT IS NOT LYME BUT NEUROLYME .
Two diferent things."
Not quite...
You are recommending what (program) to RECOVER from neuro lyme?
Posted by AuntyLynn (Member # 35938) on :
manybites -
Do you know what geographical area you were in when you were bitten?
They think that garini is practically non-existent here in the States - but obviously, PLENTY of people have NeuroLyme!
Posted by Marnie (Member # 773) on :
A researcher JUST found the ***remaining protein markers*** for neuro lyme.
We were unable to "cleave" (chop apart) all of Bb's proteins due to a protein Bb picks up in the tick's saliva called p8 which
inhibits what is called the
lectin pathway.
Disaster! This is the FIRST pathway to presenting antigens (protein particles) to our immune system.
![[group hug]](graemlins/grouphug.gif)