posted
My sister's LLMD has her on abx and plaquinil too. I was on IV rocephin about 2 years ago for 10 weeks for CNS lyme - but not plaquinil. Seemed to have killed all the CNS problems but I still have achey joints, muscles and neck pain that comes and goes. My doc said this was normal and I would probably have this for the rest of my life, so I just accepted that because it does hurt but is only incapcitating once every 2 months or so instead of every day like it used to be.
Does Rocephin kill cyst form too? If not do you think this could be lyme coming back? Or never left? Or something else? Would it be a good idea for me to get on plaquenil now just to be safe and to see what happens? I'm worried now that I may not have killed it all as I thought and there might still be cysts .
Posts: 24 | From Maryland | Registered: Aug 2007
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I am taking Flagyl right now for cyst form. And took tindamax in the past for cyst form.
What you did does not sound like it was quite enough to nock the lyme out of you if you say you still are suffering with some symptoms.
You might want to ask an LLMD about it, he might want to put you on cyst form, or some other oral abx to see if you can get rid of those lingering symptoms.
I am very glad to hear the the Rocephin has helped you with your lyme. I am on that right now (2 months now) waiting for my symptoms to start to fade.
Look into getting another opinian on the remaning symptoms and see what the LLMD has to say on the cyst and other abx.
I hope your health is ok, and that you are feeling well.
quote:Originally posted by Skyler: Rocephin is not effective with cyst form.
I am taking Flagyl right now for cyst form. And took tindamax in the past for cyst form.
What you did does not sound like it was quite enough to nock the lyme out of you if you say you still are suffering with some symptoms.
You might want to ask an LLMD about it, he might want to put you on cyst form, or some other oral abx to see if you can get rid of those lingering symptoms.
I am very glad to hear the the Rocephin has helped you with your lyme. I am on that right now (2 months now) waiting for my symptoms to start to fade.
Look into getting another opinian on the remaning symptoms and see what the LLMD has to say on the cyst and other abx.
I hope your health is ok, and that you are feeling well.
----- This is why I am confused. My LLMD from Stonybrook told me I had had sufficient ABX. But maybe she was only talking about the CNS part. She also told me that these lingering pain symptoms will probably always be there and come and go. (Yes, I am much better, but still get pain sometimes. Don't have new neuro symptoms though at all. Residual from damage, but no new) Then I read that Rocephin does not kill the cyst form, but plaquinil does. Of course, I do not know if it is in cyst form or not, and no tests can prove that, so I don't want to start taking meds again if I it would be a waste of time. However, when I learned about the plaquinil was used for cyst form, this concerned me. Any way, I guess I'll call my LLMD in NY. I have a feeling she is just going to repeat "you have received sufficient treatment"
Posts: 24 | From Maryland | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Honestly, your doctor does not sound like an LLMD. An LLMD treats until symptoms are gone for a couple months. Your doctor sounds like those other doctors who say we have to just live with the pain, that long term abx don't help.
I would say your Lyme was never completely gone. I don't know much about IV meds as I'm on all orals, but I know most of us around here are treated longer than 10 weeks.
I'm also on abx plus Plaquenil.
I'm not a doctor ... but if I were you, I'd find a new one.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dosen't sound like you have a Lyme Literate Doctor?!
My llmd put me on Plaquenil and an abx! Palq is a cyst buster...doesn't cross the BBB very well!
My doc also treats until symptoms are gone! I now have joint pain along with lingering neuro stuff! I would question 10 wks for CNS???? CNS lyme is typically a bugger to beat!
Maybe think about a different doc?
Posts: 158 | From PA | Registered: Oct 2006
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tailz
Unregistered
posted
I'm with the rest here - find a new doctor. If your symptoms are lingering, you still have Lyme - or it's possible one of the other infections is acting up now and then.
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
The concept of cyst formation is not univeraslly accepted, nor is the method of dealing with them agreed upon even by those that believe in them.
As to the plaquinil question. Plaquinil is actually a drug called hydroxychroloquine. It is a dervative of quinine and modifies the permiability of the cell membranes to allow better penetration of the antiobiotics. it is also of some use with malaria and likely babesia too.
Cysts have never been seen in tissue as far as I know, they have always been generated in the lab for every study that I have seen. It is known that the longer the organism stays in cyst form and more the number of times that it has gon into and out of that form, the weaker the organism is.
I, in my own opinion beieve that it is the intracellular version of the bacteria that is the hardest to deal with. Plaquinil will help with this form. In general intracellular bacteria are very very hard to irradicate and it takes very long treatment periods to get rid of some of them.
While there is no doubt that cysts can be produced, i suspect it may be more of a method of transmission or in vitro (ie testube) protection rather than an in body method of protection. The bacteria will enter cyst form even if placed in pure water. They exit cyst form when placed back in a nutrient rich enviroment such as blood. I can't believe that the addition of a dilute amount of antibiotic to the entire voume of the body can cause such a rapid and profound change. In any case if this did occur one would immediately expect that the things would come out of cyst form a few days after you stopped the antibiotics. More over, if cyst forms are present in the bod of those infected, the cycts would form if the infected persons blood isused to try to incubate a sample of the raw bacteria. I don' think this happens as far as i know..... maybe someone else has some info on this.
In summary, I would worry too much about cyst and "cyst busters" as part of treatment. I really think that the "cyst buster" is actually doing something other than busting cysts. For example, flagyl is a common drug for "busting cysts", it is also a very good drug for getting into the brain...far better than almost anything else.... I think it is more likely the latter that is occuring.
Your Dr will have to determine if the periodic symptoms you are seeing is refractory disease or residual autoimmune system damage. Both of these are possible after treatment. If things don't get worse over time it is more likely the second that you are dealing with.
Think of it this way, some people that break a bone periodically have pain at the break point even though the bone has mended... The same sort of thing can happen with lyme, it sometimes can sort of leave a scar in the immune system that comes back from time to time.
I am sure some people will not agree with me on the above items, but thats the way I see it and I have spent a lot of time and effort to try to see it clearly....however clouded that vision may be.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Gee David, I REALLY would love to hear your take on the Brorson's work on the cyst form of BB in the CNS of MS patients. And maybe of Lida Mattman's work, as well. I think you ignore some good work there. Why?
If I were a lyme patient who was only treated with Rocephin and has recurring symptoms, I would definitely worry about the "cyst" form.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Seek another opinion. Stonybrook is not known for its LLMD's. In fact, I recall others having problems with ducks there.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Since you asked.....
The reality of the situation is that it is not possible to totally irradicate the late stage disease.. Period.
So from a practical point of view, why worry about cysts. If someone does not get better then the drug regiment is rotated to try to find one that works. Many people have gotten better and not relapsed using rochephine alone, cysts or no cysts. I strongly believe that treatment failures are the resutl of co-existing infections, viral otherwise, not the presence or lack thereof of cysts.
The original question related to possible relapse and cysts. The answer is simple~ if the sytmoms come back and get worse, you have relapsed. If the sytoms do not progress, you are likely dealing with residual damage. If you relase you WILL know for sure. It is not something you have to worry about missing. This I Know for sure....
On the topic of cysts.....
If the orgnism makes it into the spinal fluid, It is pretty clear that it will revert to cyst form, or at least this is what is taught to medical students on the asian continent. The question is what is the signficance in terms of disease treatment. If one reads carefully the information on flagyl for example, it says that flagyl seems to INHIBIT cyst formation, not reverse it. This information that i have seen is either out of date or miss quoted in the various lymenet discussions. In addition, lets assume that cyst are in the CSF, they have no obvious means of propulsion and therfore would be assumed to be free floating. CSF flows through the brain at a pretty good rate and is reabsorbed lower in the spinal column. This would tend to indicate that the free floating cysts would be swept down to the base of the back, where they presumbaly would somehow accumulate or revert back to motile form via some mechanism. One would think that if there where a lot of cysts that the base of the spine would be a focus of infection.... I don't think this is the case. Even if the cysts had a tendency to stick to the wall of the spinal cord, this would be an infection nucleation point... It is not supported by clinical observations.
There are some other diseases were this form conversion does take place and does create a focus of infection for some animals... one example is leptospirosis and the eye (the eye is beleived to be a resorvoir site).
What about cyst forms in the blood?
It should one noted that cyst form should be readly visible under a microscope. The electron microscope pictures show that the cyst is almost as wide as the bacteria is long. One should be able to easily see this under a phase contrast scope. n addition, One would also expect that antibody based stains would not stick to the surface if the coating is a lipid. As a result I question the validity of the bowen/matman test that had been done in the past. If there wher a lot of these, then they could be filtered and centrifuged out... whya hasn't any one doen it?
What about cyst forms in the tissue? This, from what I have seen is an unknown. If someone did a biopsy and could show these I would be convinced but I don't understand how some revert into a cysts and others not, as well as how they would go into and out of cyst forms at will. Also where to they sit. They should also be culturable.
Cysts in the brain, perhaps but again where and how and why do they revert back, how many are there, are they lyme for sure and why would encysted form cause visible disease on an irregular basis. In the case of MS, MS flares up on much longer and more random cycles than does Lyme. The mechanism of action is quite different and markers are quite different. Certainly Lyme could be a co-resident factor in some cases but there is no compelling history that would suggest that it is the cause. The Infection origin of MS is a area that has been studied for over 5 decades. I personally believe it is a insect bourne disease (due to the global distribution and the post war history) but I don't think it is due to the lyme bacteria. Why do more women get MS then men, It certainly is not from being exposed to more ticks.
On the topic of MS, there are cases of MS being mis diagnosed Lyme. I think if you look at these cases most are the result of sloppy work by the Dr.
Cyst form reversion.....
There has been some speculation that it is the bacteria going into and out of cyst form that causes the regular flare up cycles. I think that a better explanation is gained by looking at some other hard to erradicate diseases (ie brucellosis). It will go into a dormant state when the conditions are not right for it. It will come out when the immune system, is supressed. When it comes out it creates symptoms. In the case of lyme I would suggest that it is the immune response coupled with the variability of the bacteria that causes the regular flare up cycles. This is exactly what happens with relapsing-remitting fever, another borriela family member.
In vitro studies show that cysts form within minutes of being exposed to an unfavourable enviroment. The conversion is complete with what appears to be 100% conversion. They can then revert to motile form but this takes over a week even in the most favourable conditions. What does not make sense to me is how ceftriaxone can casue only some to revert to cyst and kill the others over a 4 day period? I'm sorry but I remain unconvinced unless someone can provide even a remotely plausible sounding explanation. As far as I know, the cyst-ceftriaxone experiment was in vitro... this would come as no suprise in that water has the same effect.
Exactly what is cyst form....
There is also some ambiguity as to what is meant by cyst form. There is a true cyst, in which there appears to be some form of lipid layer around one or more bacteria. This is not a cell wall deficient form since it is similar in concept to the mco bacteria that casues TB, it has a protective layer around it. Then there is the tightly wound spheroid form that has been described, I rather suspect that this is what some are calling cell wall deficient. Many seem to confuse the description of these. I in fact have no idea which one people refer to when descibing cyst form.
Disclaimer....
This is all my own opinion, but I think it very importnt to ask some semi intellegent questions about the information that is being distributed. It seems to get distorted over time and then eventaully accepted as fact. Maybe it is ok as a tool to explain to a lay person what is going on but it should be stated as being that.
Complaints....
Ok I can be flamed now....
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I have no intention of flaming you-----that's an odd insinuation.
The fact is, you chose to respond on a thread where some poor person was treated with only 10 weeks of IV Rocephin and still has symptoms. I think this is an inappropriate thread for you to expound your ideas. There is a VERY real possibility that she was UNDERTREATED and certainly co-infections were not addressed.
You choose to have knowledge, yet ignore compelling arguments (with some sound science behind them)to use all the drugs in the current arsenal to combat a complex illness that we do not understand.
My view is to 1. treat long enough. 2. treat with everything that has been known to kill or disarm all forms of lyme (hey, we didn't even talk blebs!) 3. treat all known co-infections.
Is there a possibility that one could still relapse or have suffered permanent damage?? Yes. But how can one know until a thorough treatment has been undertaken?
4. I won't even touch your simplistic views on MS/Lyme--5 decades of research....what a joke.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
The simple fact is that even with treatment and complete remission, SOME symptoms MAY remain. READ the ilads information on treatment TALK to the Ilads professinal members, LISTEN to what they sat in thier presentations.NONE of them say that all the syntoms will go away. If the symptoms re-appear on regular basis then you you need to re-treat. if they appear ramdomly when a person is tired , overworked to otherwise compromized, it is not so likely that there is a compelling reason to continue agressive treatment.
I know MANY people that where treated with 4 to 10 weeks of IV and IM bicillin that are OK after many years. Sure they have residual issues but they never relapsed and never got worse.
My views may be simplistic but at least I think I use semi reasonable logic in analyszing this stuff to come up with an opinion. Some here quote stuff that is a regurgitation of supposed facts and sceintific research that is professed to be be fact and sugggest that sick people use this as background to question the Dr's treatment. I have talked to many a Lyme Dr and I can assure you that they do not appreciate some of the suggestions they get for those that are trying to self treat based on internet science. Many Lyne Dr's will however accept this, as they know that there is a lot not known about Lyme. Non lyme Dr's will not and this is part of the problem that is created. These other Dr's are increasing under the impression that all "chronic" Lyme patients are nut cases. A view that is supported by IDSA. In all honesty I can easuly see how that view can be propagated with some of the stuff that is around on the internet.
This situation affects everyone as people with lyme and think that they MAY have lyme are adversly affected since no Dr wants to deal with them.
The bottom line is that forget the IDSA/ILADS fight, our own house should be cleaned before we complain that some one elses is dirty.
Posts: 1184 | From north america | Registered: Feb 2003
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quote:Originally posted by david1097: The simple fact is that even with treatment and complete remission, SOME symptoms MAY remain. READ the ilads information on treatment TALK to the Ilads professinal members, LISTEN to what they sat in thier presentations.NONE of them say that all the syntoms will go away. If the symptoms re-appear on regular basis then you you need to re-treat. if they appear ramdomly when a person is tired , overworked to otherwise compromized, it is not so likely that there is a compelling reason to continue agressive treatment.
I know MANY people that where treated with 4 to 10 weeks of IV and IM bicillin that are OK after many years. Sure they have residual issues but they never relapsed and never got worse.
My views may be simplistic but at least I think I use semi reasonable logic in analyszing this stuff to come up with an opinion. Some here quote stuff that is a regurgitation of supposed facts and sceintific research that is professed to be be fact and sugggest that sick people use this as background to question the Dr's treatment. I have talked to many a Lyme Dr and I can assure you that they do not appreciate some of the suggestions they get for those that are trying to self treat based on internet science. Many Lyne Dr's will however accept this, as they know that there is a lot not known about Lyme. Non lyme Dr's will not and this is part of the problem that is created. These other Dr's are increasing under the impression that all "chronic" Lyme patients are nut cases. A view that is supported by IDSA. In all honesty I can easuly see how that view can be propagated with some of the stuff that is around on the internet.
This situation affects everyone as people with lyme and think that they MAY have lyme are adversly affected since no Dr wants to deal with them.
The bottom line is that forget the IDSA/ILADS fight, our own house should be cleaned before we complain that some one elses is dirty.
Thanks to all of you regarding your advice. FYI - all of my CNS symptoms are gone since the rocephin, so I do think it worked. I have residual CNS damage (because CNS leisions (scars) do not always heal completely) that will never go away, however, but it is slight.
The aches and pains in my neck come and go, but my Stonybrook doc said this is from residual damage also, and that it should not get worse. It has not gotten worse. If it does, then she said we will need to worry. It is 10000 times better than before rocephin and it has been 3 years since the 10 weeks of IV ABX. (By the way, I almost lost my house paying for the meds. Insurance refused.)
By the way, the doc at StonyBrook is a known expert in both CNS lyme and MS. She is an LLMD. She has done numerous studies on CNS lyme and lectures across the country. She knows all about the spirochetes being found in the brains of MS patients. She is not a duck.
However, just to be safe, I will go to another LLMD, closer to me, to make sure. I only asked about the cyst busters because my sister's LLMD has her on those too and I got scared, thinking that maybe I missed something. I will go to another LLMD however, just to be careful.
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