We thought this was very unusual, especially since she was used to 2 grams for awhile and then 1 gram. Now, when we give it to her it's only 250 mg. and she has this reaction. We can't control the infusion, it infuses by gravity.
Posts: 252 | From Iowa | Registered: Mar 2006
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CaliforniaLyme
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Mike, my Herxing on Rocephin was SLEEP. WHen I went on Rocephin it knocked me out dead cold. I was ASLEEP 22 hours a day for most of that first 6 months. I am not joking. It was like narcolepsy, I was unable to stay awake, felt pulled down into sleep, felt drugged, felt UNABLE to stay awake/ And I got worse, or Herxed, with everything, agony increased, weakening inscreasd, I just got worse and worse until month 7-
David, it hink you may not see cases like this because you are East Coast and here people don't GET IV until they are almost on deathbeds!! Seriously!!! You have to be really bad here to get IV and back East I think they give it sooner!!!
Cal lyme
***DAVID!!
So I understand correctly,
** Ok!
You had no prior treatment of any sort with anitibiotcs, were on singular treatment with ceftriaxone for 6 months with no change in regime, continued to deline and at about the 6 month point saw quick improvments?
** Nope, not at all!!! I was bitten by tick, got rash where bitten, was tested, tested positive locally, diagnosed locally by PCP, seconded diagnosis by Rheumie who treated me with 1 month Doxy, got almost 100% but NOT quite, begged for 1 more month abx but was told "too dangerous" but was told now had Post-Lyme SYndrome and allowed to decline for ONE YEAR (follwing that one month) with no tx (and same doc said "too dangerous" begged me to go back on abx after that year! but they did nothign!), THEN finally found LLMD put on orals for ONE YEAR of progressive decline and non-responsiveness- THEN when I could no longer walk nor drive nor cook nor remember 2 year olds name (I DID remember she was MY daughter though, not her name, but knew she was my kid!) was put on IV but continued to decline until could no longer rise without assistance had to be helped into tub kept falling falling and horrible chorea and THEN in the 7th month I went by the 9th month to 99.9%!! Bless my LLMD!! Bless Rocephin!!!
What were the major syptoms that responded?
********Um, I stopped weakening. I had been diagnosed at that point with "progresssive mutli-system neurological disease triggered by post-Lyme syndrome" (may those doctors rot in hell). I stopped having : progressive weakening leading on my left side, fibromyalgia, CFS, incontinence, vomiting attacks, MCS, chorea, incipient dementia, head-to-toe spoltchy rash, malar rash on face, had been having progressive numbness beginning to creep upwards from feet and it had reached upper calves where I could stick pins without feeling it- the earthquake feelings, the rolling ship sensations, the falling, the SLOWNESS (I don't hear that from many people but I got slowed down, I really got SLOWED down- took me 10 minutes, 15 minutes, to cross room leaning on furniture and walls) had developed a shuffling walk, hands were swollen crabbed claws arthritic and numb where no pain, no range of normal motion- t same time, lost balance suddenly all time would fall because of that, the micrography, RLS, the slurring when I spoke, the choking when I ate, the TWITCHES, the little jerky twicthes, the whole limbs contracting twicthes, the big body jolt twitches, the burning spots almost completely, the joint pain almost completely- 104 recurrent fevers- floaters all gone, hearing better almost normal, vision back normal
What symptoms remained?
******Chills, palpitations, head stabbing pains, left eye burning spot, hands still a little stiff and joint pain in finger joints- a little fog- and fever of 101- (I had that for 4 years btw!) swollen face above and below eyes- up to 2-3 centimeters swollen outward I was a monster- , edema all over body, chest pains, sleep disorder- early awakening sleep disorder, MVP, vagus nerve disoder when drawing blood causing fainting within 5 minutes after, high bp, very high bp decreased hearing when around surround noises low noises- hard to differentiate/focus on sound
What was the dosage?
*********2 grams daily for 9months/
Did you change anything (drugs, food etc) during the 6 months?
******************Only one. I took Ledum for a couple of weeks, a whole bunch of it, desperately. OH- and when the choking and swallowing was screwed up majorly I only ate ice cream and soup for a few weeks, had to let it slide down my throat while tilting head- without swallowing- only way to get it down- horrible- But this is one reason I believe I have TBE virus, because of ALS Parkie symptoms and because I did take Ledum a couple of weeks before I turned!!! And the Russians found it inactivates TBE viruses-
(PS. Don't tell me of any co-infections yet, I would like to see what your pattern fits with before it is reveiled -if any).
***You've got to be able to guess re what coinfection was left!!! Jeez*)!*)!
Sorry for all the questions but I have never seen a similar situation so I am interested in getting all the details to add to my collection of histories. --------------------------------------------------------------------------------
*** MOST amazing thing Rocephin did- which surprised me and I didn't even notice- ex husband did when we were hiking and I jumped up on to a log and crossed a stream- my lifelong fear of heights has been gone ever since IV Rocephin!!!! GONE!!!!!!!!!!!!!!!!!!! It seemed natural to do that and has ever since- it was a visceral thing before- and it is GONE!!!!!!!!!!!!!!!!!! Makes me wonder how long I was infected before that RE infection>? Because when I was 21 they thought I had lupus and kept testing my ANA for 6 months- and then the lupus went away with abx for walking pnemonia!!!! Completely gone!!! SO I wonder- and because I got SO bad SO fast- u nlike others- I got so bad-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Cal lyme--that is quite a story and thanks for sharing it. It illustrates my point below.
I am uncomfortable with these absolutes that I have been reading in this thread regarding reaction to treatments and whether one has lyme or not.
It is possible that each individual reacts differently to the drugs used to treat lyme and also that different strains of the bacteria react to different drugs in different ways.
There are just too many variables to say, "it takes two weeks to have a lyme herx and if you herx prior to that it is not lyme that is being targeted" That is poppy cock! If we knew enough to be that sure about herx reactions we would be able to cure lyme--bing, bang, boom.
We don't know enough to throw these kinds of claims around- DAVID1097 wrote, "The 'cell wall deficent' form of Lyme. or encyted Lyme is benign during the cyst phase.
Where is the research to back that up?? I think that is a somewhat outdated view of the cystic form of borrelia. Geez, especially when we are talking about an ALS presentation of Lyme.
DAVID1097 also wrote, "You mention that one day on Flagyl causes problems. This is intersting in that Lyme does not behave like this. it take s a few days for a drug to kick in with Lyme"
How do you know for sure?? This is certainly not the case in the majority of lyme patients who take flagyl or tini---Many, Many feel the effects quickly.
Finally, Nimzovich76 wrote, "If IV rocephin didn't have a considerable effect even within days, then is time to look elsewhere, I gave I.V. Rocephin a month and didn't notice significant changes, that's when I stopped and went a different path."
So now which is it---herx too fast, it's not lyme your're treating, or do not herx in a few days so you're not on the right path. Can't have it both ways!
In my opinion, these statements are frivolous and irresponsible.
I am sorry Mike for your troubles--I certainly don't have the answers--I just can't stand when others write as if they do.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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david1097
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John,
On the IV, you can slow down the drip rate. the drug has a fairly long half life so even it is slowed to infuse over a few hours it is not that big a difference.
As far as the reduced dose goes, she may be weaker now than she was before, similalry, there may be changes in the blood flow pattern to the brain due to a number pf possible reasons, either of these could easily account for a hieghtened sensitivity to the drug. The symptoms you mention that seem to occur in reposnse to the drug infudion would, to me, be very scary and I would take great care in dealing with it.
What happens if you stop the IV for a few days? Lyme takes many many days or weeks to start to come back. This is why the popularity of the pulsed antibiotics. If something does come roaring back within a few days then you are unquestionably dealing with something other than lyme for those particular symptoms. (See Dr' B's presetnation for this point of view) There ar a lot of possibilites in this regard.
On a different note, were they any MRI's or brian studies? What did they show?
Posts: 1184 | From north america | Registered: Feb 2003
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david1097
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Just to clarify on this
People ask for suggestions, thats all I provide. If others provide suggestiosn I don't agree with, I don't say "that statement is wrong or irresponsible", I just provide an alternate suggestions and a reason why. I always try to explain why, thats why my posts are so long. What I don't particulalry like are suggestions that have no explaination. There are no absolutes in the field (except dead or not dead, but even this is debated) so that means everything must be in the grey zone. Knowing how to make sense of the greys and then make decisions on this interpratation is what I feel is important.
Based on this it appears that perhaps my exaplinations where lacking as to my suggestions. So here is a second attempt.
In terms of abx reponse, we are looking at a possible situation that involves many variables including possible multiple co-infections and someone who continues to decline while on intensitve anitbiotic treatment. The question shoud not be why isn't the lyme treatement working, it shoulfd be what else besides lyme could it be? Maybe it is lyme maybe it isn't but the bottom line is unless you consider other possibiltiies you will never find it.
So based on this concept what can be made of the drug response so far? First,ILADS and IDSA both agree that with coinfections the symptoms are much worse, worse infact than lyme and the other infection alone so given the fact that the poor person is bedridden and needs a ventilator I woudl bet that co-infections are involved.
So now how do you figure out what else is involved? Tests are not that good and may not exist so these are no good, all you have are the symptoms to go by as well as the respnse to the treatments thus far. For neuro symptoms there are literally 100's of possible causes so the symptoms unless they are verys specific won;t help you. So whats left?
So it thats the case,consider this; Lyme, again by ILADS account produces a herxhimer delayed by a few days. Other diseaes do not, for example; syphilis produces this reaction in a few hours. Bartonella also produces a herhiemer reaction and so do a number of diseases which are for the most part hidden from a vigourous immuue response. So lets consider the case of a person who:
is very sick with symptoms that could be caused by lyme and or co-infections,
does not have very strong evedence of lyme infection,
does not have the text book signs of lyme
and finally when that person is treated with anitbiotics, the person gets a herxhiemer reaction within a few hours. What does that person have?
Do they have lyme because they have a possible indication from blood tests or do they have something else that produces a more rapid herxhiemer and that may have weakly cross reacted with the lyme tests but for which was never tested for?
My vote is for the latter as it is more likely to be true than have an "atypical" herhimer from some sort of "atypical "lyme.
As a next step consider if this person did not respond to good broad spectrum antibiotics but reponded to a drug that is known to be good for say a non bacterial infection? Would this mean lyme or would it be a a non bacterial infection?
Again my vote is that it is not lyme but in fact non bacterial, especially since the herxheimer pattern did not match that for lyme.
I can continue but I think you get the idea.
Now on the cystic and CWD form. If this form can cause severe disease (as in this case) how is it possible that peopel that ultimately relapse after a few years after treatemtn get well at all prior to relapse. Not everyione has been given flaygl so one would reasoanbly assume that there are are sequestered "cystic" forms lurking. In fect, many many poeple just got ceftriaxone, recovered and years later got sick again. Presumably the reason they got sick was that the cystic form of the disease was not irradicated. Still they made a full recovery at least for a while? My guess is that the systes form does not produce much in the way of symptoms, that is until they emerge fromt hat form.
There are many intracellular diseases, all exhibit the interesting pattern that as long as they stay in intracellular hiding they do not cause any symptoms. This preseumably is because they do not produce endo toxins while in that state. Once they emerge from that state and are broken down by anitbodies or antibioticss, then all sort of toxic waste is left, these cause the symptoms... bad ones. I alrea read somewhere (if I recall correctly) that the motile lyme bacteria does not produce pyrogenic toxins. This woudl furhter support the concept that when the bacrteria is encapsualted in a cyst that it produses no effects. Fionally in some countriews where borrelia infections are more prevalent (some third world countries), the Dr's are taught that once infected by brroelia you are infected for life due to the cystic form. They also are taught that the only aim f treatment is to keep it in that form.
As a practicle example consider another spirocete, lepto spira. When ths infects horses, it produces no particuallry bad symptoms until it is killed by drugs or antibodies. At that point it causes a sort of optic neuritis. Lepto sprira can also stay sequested in a protected state (likely a p spheroid of some sourt) and while in that state also produces no symptoms. Im my opinion, it is reasonable to assume that lyme is similar. I say this because peopel can be infected for years, with no particuallry bad symptoms but once treated they get a herxhimer reaction and then get anothor one when they take flagyl. To me this tends to show that the bacteria is able to evade the immune system and thus produce minimal symptoms and when it is in the cystic state it produces even fewer symptoms. Its only when the lyme is killed either by the body, the antobiotic or by the flagyl do you get a severe reaction.
Based on this, given super severe symtoms in Johns case, I think it is quite reasonable to assume that the cystic form is not the cause of the severity of the problem. Maybe it might contribute but my guess is that the problem lies elswhere.
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david1097
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Cal lyme
In reading this, do I understand corerctly that the first round of antobiotics did create a positive response? If so would count this as the antibiotics working.
I was refering to antibiotics resulting in NO reposnse right from day one. I know for sure that once you have had orals, the effect of ceftriaxione is greatly reduced, likely because the orals did part of the job already, i Also know that once you replase it is mucgh harder to recover, even with IV so a longer course is needed.
In the case of johns niece, the problems appears that she never had any improvement from antibiotics at any time, even from time 0. It appears that it is not that she received previous treatment and relapsed, or recieved prior treatment and made some progress. She made no progress at all.
As far as the california cases, What I have said about antibiotics (ceftriaxone was mentioned as it is one of the strongest) is again not applicable as if they received prior treatmetn and either improved or slowed the deterioriation then obviously the antibiotics had a positive effect.
Do you know any one that upon startnig antibiotics had NO effect(no slowdown in progreesion and no improvement) in the short term but after 3 months had a step wise improvement? This is the situation I am saying I have never seen.
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lymemomtooo
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Mike I am just reading this but my first thought thru this was mold and I see someone, David, I think also suggested it.
Check out chronicneurotoxins.com or do a search for mold warriers. There should be some info on the site.
With mucous, etc, it just makes me think mold infection. Has anyone done a mold test on the home or heaven forbid, the ventilator? She may be constantly re-contaminated. Make sure someone looks for all types of possible moisture/leaks, etc.
It may be a big piece of the puzzle. Good luck. NO child or parent should have to go thru this Hell. lymemomtooo
ps. My daughter was also dropped by a Dr, without notice during a critical emergency situation.
Posts: 2360 | From SE PA | Registered: Mar 2004
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I believe my reading comp. skills are just fine.
I stand by my assessment-----stating that no response to IV Rochepin after a "few days" = not effective and not lyme is irresponsible.
Oh and I forgot, there are so many other options to treat a kid on a respirator with ALS symptoms. That's right they should pursue all those other options and NOT Lyme.
Thankfully, I think Mike is much smarter than that.
What exactly is your objective? Muddy the waters perhaps--Personally, I am sick of it.
Have a nice evening. Posts: 554 | From Naples, Italy | Registered: Jun 2006
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CaliforniaLyme
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Sojourner I agree- I found those disturbing too!
David, yes and NO. They initially got me almost well when all I had was joint pain, IMS, fibro and FMS. THEN I declined WAY WAY WAY worse than that. II was 1,000,000 times WORSE. And they did NOTHING for a year of orals and 6 months of IV. I was put on abx and they THEN did Zip, nada, NIL!!!! After having almost cured me!!!! We switched abx for a whole year and NOTHING!!! I just got WORSE and WORSE!!! I was on different orals and they did NOTHING!!!!!!! And then Rocephin- I waited- and wiated- I thought for sure by month 3- then 4!!!! I gave up.
OH big diff!!! At month 6 I had groshong put in- until then was shoulder line to heart picc- but then had groshong put in and i told that surgeon, "I am not going to get well, why am I doing this?" Tears were streaming down my face but I was not even aware I was crying. He said, "Everyone says that but your doctor is a miracle worker. People come in here and then- they get better!" 2 months later I called rather prematurely to ask him, "Doc Surgeon, can I jog with this i n?" I did not know it would take me over a year to get THAT strong again. IAnd he said, "I TOLD you so!" HE had faith in my doc when I no longer did. And my doc was right!!! I did get better!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
And that happens to others too- all the time! I see it. It is great to watch!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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p.s. I became aware I was crying because that surgeon began wiping my face off with a Kleenex for me while he was talking to me!!! He was a sweetie!!! ANd to both him and my doctor there was no doubt thsat I would get better- they had seen it before0- it was not new to them- and now after years int he TBD community it is old hat to me too- it does happen all the time- with time-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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David- BTW, my name is not John, it is Mike.
Sojourner- I agree with your assessment of the preconceived "absolutes" with the course of Lyme's and its co-infections. Just as there are numerous different clinical presentations, there are probably numerous different reactions to the medications. Everyone responds differently. I totally agree with you...well said.
Lymemomtooo- thanks for the suggestion. I am familiar with chronicneurotoxins.com and Dr. S. Mold Warriors. The mold was found in her blood quite some time ago and before she started on the vent. They moved out of their house while it was remediated. I'm told that IVIg's and simply getting out of the environment is the treatment. I don't believe the mold is the causative factor here, but I do believe it played a role. This girl is an identical twin, who also tested high for toxic mold in her blood. Why did two different children react so different to similar amounts of mold in there bodies? My theory is that either the borrelia, babesia, mycoplasma or whatever it is she has, altered her immune system enough to make her sick.
Which of course leads me back to the treatment failures using Rocephin. I don't believe Rocephin is the "cure-all" for neuroborreliosis, despite its many successes.
[ 14. March 2007, 10:33 PM: Message edited by: mikej2323 ]
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