posted
did 10 weeks rocephin and was doing SO well. that was 2 months ago. i have gone really down hill since.
i was changed to 6.0 gms amoxy 2 weeks ago and now am in worse shape than i have been in six months (when i was first dx'd). maybe even worse than then.
i talked to my docs today, both llmd's (in ny). one is ilads the other is on another panel, forgot the name. anyhow neither subscribed to the cyst form theory which i have read about here and in other forums.
i will probably go back on the rocephin, since that's what worked best for me. indefinite treatment.
i know, or have personally spoken to, 3 people who were cured with the help of long term iv rocephin treatment. i just hope i respond as well as i did last round, especially since we are paying out of pocket this time.
otherwise, like i am like the person who put up the "end of rope" topic. 27, m, and f***d up. did zhang's but no results. artemisin for six months, cat's claw, etc. start mepron tommorow when the pharmacy gets it in.
2 months ago i was back in the gym (though not ripping it up mind you) and socializing a bit. i even got out to see eric clapton at msg. things were looking up. now i am a mess again. i hope things will be better soon but if not i feel royally screwed.
one doc sent out a complete (no holds barred) co infection panel from igenex today for more data. we are also waiting on the results from a spinal tap i had last week (that sucked). hopefully that will yield some results too.
just want some fingers crossed for me. thanks beforehand for taking the time to read this and bearing the fruits of your compassion. be well...
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
i talked to my docs today, both llmd's (in ny). one is ilads the other is on another panel, forgot the name. anyhow neither subscribed to the cyst form theory which i have read about here and in other forums
I have papers from ILADS conference which go into major detail with scientific back up on the cyst form. So, Im not sure which ILADS doc you spoke with...but, if you read the published guidelines, they even refer to treatment for the cyst form.
I suspect you either: misunderstood arent really talking to a lyme doctor arent really a lymie yourself are a lymie who thinks its funny to play with peoples minds
either way, if one goes to a Lyme Literate Doctor who is ILADS affiliated, im fairly certian that you would NOT have had that response.
posted
woah... why so hostile. i'm dying over here and your saying i am not a lyme patient. seriously what's your beef?
anyhow i saw dr.C of ilads in westchester (as well as dr. L in westchester). dr c. said the theory was based on one test which showed that a spirochete in a lab curled up for a 24 hr period. (at least that was the way he described it in lay terms for me).
dr. L said he didn't think the flagyl was good for lyme and that tidinazole was too new.
i haven't read the medical/scientific papers and probably wouldn't draw a definitive conclusion even if i did because i have no science or medical training.
and it's not as if i ruled it out. that's why i asked the doc's about it, they said they disagreed with it not me.
now take a deep breath and relax. and think before you type next time. it's hurtful and inconsiderate.
[This message has been edited by mcpucho (edited 10 August 2004).]
[This message has been edited by mcpucho (edited 10 August 2004).]
You may have a strain of Babesia, and if so see my posts on Hepalin if the Zith and Mepron don't do the trick.
I also crashed after about 8 weeks of great response to Rocephin. Once I stopped taking the stuff I lost all the benefit until I restarted on claforan and then IV Zithromax.
Perhaps Flagyl or Tinidazole could help, if you have noncellwall forms of Bb.
Neil
[This message has been edited by Neil M Martin (edited 10 August 2004).]
Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
| IP: Logged |
posted
Sorry, I can't offer you much help as I'm going backwards myself.... but I just wanted to say welcome and sorry you were treated this way! Some people here believe that if you aren't as knowledgeable as them and ask/write something that they see as questionable (whether it be innocent or not) or don't agree with, that you are just here to stir something up or in other words a 'troll'. Pay no attention to these people! Keep reading and you will get support from SOME very caring and knowledgeable people.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am looking forward to seeing what the full works from Igenex testing shows.
Hopefully this will help you.
It does get discouraging. But, it appears you are doing all you can to battle this.
You may have lost a few battles, but my guess is that you will win the war.
Lish's MOm is usually very helpful. I guess she hadn't had her cup of coffee yet this am.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Check out this link. http://www.radio.cbc.ca/programs/ideas/shows/bacteria/bacteria.html http://www.ilads.org/burrascano_1102.htm#treatment3 There is evidence that metronidazole will kill the cystic form. This fits with the now well known clinical observations that metronidazole can be remarkably effective for many chronic Lyme patients. However, this medication apparently has no effect on intact spirochetes. Therefore, the trend now is to treat the chronically infected patient who has resistant disease by combining metronidazole with one or two other antibiotics to target all forms of Bb. Because there is laboratory evidence that tetracyclines may inhibit the effect of metronidazole, this class of medication may not be as useful as others in these two- and three-drug regimens. There have been some recent reports that Bb does not contain genes that would confer susceptibility to metronidazole. However, this clearly does not fit with in vitro and a large body of clinical data, which have demonstrated the usefulness of this agent in the Lyme patient. Perhaps we do not have all the genetic information needed to dismiss the use of this agent. Once again, real world experience is one step ahead of bench research. http://www.jemsekclinic.com/lyme3.php Documentation of infection with multiple Bb strains in the same human host has now been reported (2). This begs the question about the clinical implications for persistent Bb infections in a particular host over time. Furthermore, the Bb organism has an astounding ability to alter its molecular structure even as it passes through the gut of the tick vector (63), and in the host where it can ``morph'' into an L form (lacking a cell wall) or, more significantly, into a cystic form which is antigentically dissimilar from the spirochetal form (64) (see photos below). This process occurs in reverse when it is advantageous to Bb. Undoubtedly these are survival mechanisms developed by Bb. Whether all Bb strains have a like capacity to do this is not known, but strain variability in terms of propensity to develop the cyst form may theoretically explain some of the clinical differences observed in the treatment of individuals with persistent LD. http://columbia-lyme.org/flatp/treatment.html Published reports indicate that, even after antibiotic therapy, persistence of the spirochete Borrelia burgdorferi may be demonstrated by either culture or demonstration of Bb DNA by PCR analysis in animals and humans. The mechanisms of persistence and immune evasion are thought to include sequestration in intracellular or other immunologically privileged sites, antigenic variation, decreased expression of surface antigens in vivo, capture of the host-cell's own membrane forming a virtual immunoprotective cloak, and/or early down-regulation of the immune response. Much evidence now exists to demonstrate that Bb can lodge intracellularly in human endothelial cells, astrocytes, fibroblasts, and macrophages. Bb in vitro has been shown to enter B Lymphocytes and to exit drawing with it the outer surface membrane of the lymphocyte. Bb in vitro can modify its shape into potentially antibiotically-protected cyst-like forms. These findings suggest that failure to eradicate Bb completely by antibiotic therapy may be due to intracellular localization in vivo, the selection of resistant strains, or sequestration in sites (such as the central nervous system) where antibiotic penetration may be less adequate
ps lighten up a little I dont think lymeed or lishesmom were being hostile I hope the articals and links help you good luck
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
mcpucho
Unregistered
posted
sorry. didn't mean any animosity just was a bit insulted.
anyway.
thanks for the cyst form info. i'll keep it in mind for later on down the line. need to prop myself up a bit first.
ciao
p.s. thanks for the article links. the IDEAS paper posted by treecontrol was very indepth and interesting, to say the least.
from what i have deducted from these readings it seems very much that the jury is still out on cyst form spirochetes but that doesn't mean they don't exist. more studies, or a different interpretation of the studies with better accuracy, seem necessary. i'm all for that.
it seems, as pointed out by the dr.b's treatment outline (#3) that "Once again, real world experience is one step ahead of bench research." I'm a pragmatist, so results matter most, irrespective of lab findings.
hopefully this round of rocephin will get me going again. i will look into flagyl and tid when the time comes though.
i took flagyl when i first became sick, 15 months before lyme dx (2 years exactly now since first symptoms), and that is what "killed me". neuro symptoms began then. could have been a herx, could have been medical side effects, don't know. but now i a wary of flagyl to say the least.
and yes clapton rocked hard. he wah-wah'd a dope solo during "I shot the sherrif" and robert randolph and the family band opened which was a great treat too.
also... new to the board and appreciate the fast and informed feedback very much...
[This message has been edited by mcpucho (edited 11 August 2004).]
Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
MC, will Dr. C or L treat coinfections based on clinical symptoms irrespective of serology?
I've met 3 people who are in remission who used IV Rocephin exclusively. However, they all were bitten within 5 years of treatment. Many LLMDs add a cystbuster with the IV to help augment it's efficacy. Alternatively, some don't. You have to do what works for you within reason & safety.
Dude, Clapton at MSG, what a show! Glad to hear you were well enough to go. Lots of shows I'd love to see if I wasn't so Lymed out. Deep Purple, Thin Lizzy, Tesla etc...
DiffyQue
Frequent Contributor (1K+ posts)
Member # 3317
posted
MC,
Hang in there buddy; its gonna take 2-3 months to get through the rocephin herx and herx reaction from other treatments you've already had. Its a rough ride. Much of what your experiencing has to do with the body's reaction to bacterial die-off--killing and processing. It can be real scary at times. Search term: jarisch herxheimer reaction.
Reaction can manifest symptoms warranting--necessary, and un-necessary--medical consults across the entire board of medical specialties, and I mean the enitre board of medical specialties. Unlike with many other bacterial infections, this is how it is with lyme disease, and probably other Tick-borne infections. Its paradoxical to what one would expect.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
[QUOTE]Originally posted by mcpucho: sorry. didn't mean any animosity just was a bit insulted.
anyway.
thanks for the cyst form info. i'll keep it in mind for later on down the line. need to prop myself up a bit first.
ciao
p.s. thanks for the article links. the IDEAS paper posted by treecontrol was very indepth and interesting, to say the least.
from what i have deducted from these readings it seems very much that the jury is still out on cyst form spirochetes but that doesn't mean they don't exist. more studies, or a different interpretation of the studies with better accuracy, seem necessary. i'm all for that.
it seems, as pointed out by the dr.b's treatment outline (#3) that "Once again, real world experience is one step ahead of bench research." I'm a pragmatist, so results matter most, irrespective of lab findings.
hopefully this round of rocephin will get me going again. i will look into flagyl and tid when the time comes though.
i took flagyl when i first became sick, 15 months before lyme dx (2 years exactly now since first symptoms), and that is what "killed me". neuro symptoms began then. could have been a herx, could have been medical side effects, don't know. but now i a wary of flagyl to say the least.
also... new to the board and appreciate the fast and informed feedback very much...
treecontrol hahahaha thats funny Something else to keep in mind. [B]WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
Mpucho, I havent had my coffee yet this morning either --- so I will try to say this so I dont hurt anyone.
I have been around here for many years. In fact, most people one here now, with exception of TinCup, are newbies of different durations. During this time, we have had several come online, and blast the LLMD's and made comments contrary to what the LLMD's have already published or stated.
This usually happens about the time there is heavy legislative activity to advance studies on lyme disease or during the time that we expect to see many more lyme cases (august is a high time for new cases). These people (we call trolls) come in and deliberately try to prevent newcommers from seeing doctors by making them afraid. I have seen it over and over again.
Now, I AM NOT accusing you of this, but your opening sentence caught me off guard, and yes I did suspect it was possible you were a troll. Right now we are working on some major legislation in three states at this moment, and its August and this was a relatively new post (your number 3) which are all reasons to watch.
Please forgive me for including a choice of a wrong conclusion. It was not my intent to hurt you, just to weed out trouble if you were trouble, so others would not be mislead. AGain, I am so sorry.
posted
no worries lishs mom. i can understand your defensive mood i know this is such a high octane controversial disease. f***'in politics! we both overreacted.
i'll accept your apology only if you accept mine.
obviously we all need to work together, not apart, to tackle this.
that's why, from a friend of a friend (of a friend) who has lyme i was recommended to this board. i don't know what their posting name was or is. they have recovered or are in remission now.
posted
Hang in there! Keep learning about the disease. It has helped me feel like I have some control of what is going on. Things will get better.
Posts: 112 | Registered: Jun 2004
| IP: Logged |
mcpucho
Unregistered
posted
cling cling (sound of toasting)
IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
mc, If you have had Lyme a long time, like over a year, you might want to consider Bicillin and a macrolide (Biaxin, Zithromax) combination. I have to run but will just say that a number of other chronics, myself included, have done really well on it. Some people had tried everything else. If interested, search Bicillin on this site. I'll check back later if you have any questions. Good health, Ddavid
Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
mcpucho
Unregistered
posted
the last month i was on 500mg zith and pennicillin vk 2000 mg per day for 2 weeks and then 4000 mg per day for 2 weeks.
pen vk is the oral equivalent of bicillin. i asked doc about the shots and he said try the pen vk. may not be as effective as the intramuscular.
saw doc yesterday and he just called me again (we're personal) and he agreed to put me on another round of rocephin this week for an extended period, probably 3 months. insurance a go!
i think that's the plan right now, with biaxin 1000 mg a day and mepron which i started today.
that's what was working before (minus mepron which is new) so we are going that route again.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic