Topic: Anyone Tried Insulin Potentiation Therapy (IPT) treatments for Lyme?
springshowers
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posted
I have been talking to a cancer clinics in the area and found a couple who do IPT for Lyme and have quite a great sounding protocol.
I am considering it since I feel my IV treatments got cut short due to complications.
I made great progress in many ways on the IV protocol I did and have sustained that gain but feel I am risking loosing that gain if I do not go further. During thinking this over and researching for my family member who has cancer and is getting IPT I ended up talking to the IPT foundation who keeps a list of doctors. THey were very supportive and also help you set up donation pages (which I will have to do) I made my calls to doctors and clinics in my area from there.
Everything happens for reason. I believe.
I talked to a doctor on the phone who gave me a great protocol (after I gave them my records) that seems very solid and specific with 6 antibiotics (variety of anit bacterial fungal viral and such) and a slew of homeopathic and natural remedies too all through IV. They also give to their patients full use of the clinics detox modalities which is very attractive too.
They use IPT as the delivery of ABX and any treatment of choice and if you know anything about IPT then you know it is low dosing given after they prepare your body to accept the treatment.
The protocol is for 8 weeks and it only takes 1 day a week to do the treatment and then I can use the clinic for detox and other immune supports on other days.
If nothing else it is something to look at or look into if anyone is interested in new things...
I will not post the specific site but if you do any search on The name IPT (Insulin Potentiation Therapy) has recently been changed to IPTLD� (Insulin Potentiation Targeted Low Dose} you will get lots of information and there are lots of cancer clinics who do this sort of treatment and they are now talking about how it can work for other diseases as well.
Here is a quick blurb about IPT and how it is used and why it works..
Simply put, IPT consists of a pulse of hypoglycemia (low blood sugar) that improves the effectiveness of therapeutic drugs and supports health:
* IPT makes cell membranes more permeable, increasing the uptake of drugs into cells. * IPT can help transport drugs across the blood-brain barrier. * Insulin, in addition to its ability to help deliver higher-levels of the chemotherapy drugs into the cancer cells, also causes these cells to go into their growth phase where they actually become more vulnerable to the chemotherapy drugs. The cells are hit harder and at a time when they are most vulnerable to the assault, thus maximizing results. * A 1981 study conducted at George Washington University showed that the chemo drug, methotrexate, when used with insulin, increased the drug's cell-killing effect by a factor of 10,000. * Insulin assists debilitated cancer patients with appetite and metabolism, helping to mitigate the wasting - cachexia - that accompanies the disease and its therapy. * IPT also may change the blood chemistry for the better. Dr. Perez Garcia studied this effect during IPT treatments and spoke of changes in the "biological terrane" of the body making it less hospitable to disease. He felt these changes persisted long after the treatment was over. * IPT is believed to help detoxify. When the cell doors are open, things go in - and out. While IPT kills cancer cells, it flushes toxins into the circulation, enabling them to leave the body. This is why we pay special attention to supporting the liver during IPT. * IPT's innovative approach was developed in the 1920s as an alternative to treating syphilis with almost lethal doses of mercury and arsenic. IPT was first used for cancer in 1945.
[ 03-11-2010, 08:44 PM: Message edited by: springshowers ]
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posted
I have posted on this a couple of times in the past. Hubby had one IPT treatment with only 150 mg of IV Rocephin. The same day he also got a Hydrogen peroxide IV and IV Vitamin C.
That was probably one of the worst ways to spend over $1200 ever.
He ended up getting sicker for 3 or 4 days before he ended up in the ER and hospital. This treatment greatly exacerbated his seizure-like spells even though he was on Depakote at the time. He was put on IV Ativan following this experience and stayed on that for about 6 years before he switched to oral ativan.
As I said before, at the time he had had no antibiotics. Just the disastrous treatment with Dr J in Kansas City. But the IPT treatment made him far sicker even than the Borrelogen etc. He went from having seizure-like spells to having myoclonus also.
In between the two treatments hubby had nutrition IV's daily for a couple of months to recover. Then he had numerous IV Hydrogen peroxide treatments and about a dozen IV ozone treatments and 3 UVB treatments. Obviously none of those things did much of anything for his infectious load of lyme, babesia, bartonella or mycoplasma plus most likely ehrlichia and Borna virus and HHV-6, CMV and EBV.
The 2 patients hubby's doc also treated with IPT were teenagers who had arthritic type symptoms and had had extensive antibiotic treatment prior to the IPT.
So maybe, it would help if your infection load is low enough, but I don't have much confidence in this treatment.
It was almost a year later before hubby was treated with his first real antibiotic -- IV Rocephin. By that time his MRI report actually said the brain lesions could be caused by lyme disease. We wasted a lot of time even after he was diagnosed because the Dr J treatment and the IPT made him so sick we were afraid to try anything else.
And at that time we had no computer and really knew very little about lyme and just how serious these tickborne infections are.
So I would just be prepared for a very serious herx if you do do this. And then there is the even bigger question of what dose of antibiotic would help but not make you 100 times sicker than ever.
Bea Seibert
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springshowers
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THanks Bea
So I am a bit confused when you say that he had IPT but did not do any abx? What treatment was used for the ITP for him then?
YOu may have a point in saying that you have to have your load down somewhat or enough to handle it? Or you are sure you can detox well etc?
I am sure it is intensive..
I was told that they use up to 6 antibiotics of various kinds including anti fungal and anti viral etc at once...
Did he get any anti virals or other kinds of treatments in his IPT?
I was a bit confused on that part from your response.. SOrry he had such a rough time with it. I have followed for awhile reading your posts about your husband and he seems to have a special and rare kind of case in many ways. Meaning different than the more common stories or symptoms and responses to treatments etc that you hear... I hope you and he find something that works in the end to get rid of this horrible disease..
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Keebler
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- Run, run, run . . . fly. Avoid this.
Hypoglycemia is VERY Dangerous for the body. Scientists are finding out much more about the long-term damage of pulse of hypoglycemia attacks.
And that is just a start. IPT has been a disaster for many lyme patients who went to Italy and Atlanta for this. Sometimes, someone did well and that got all the headlines. But the disasters were just swept under the rug.
Again, hypoglycemia creates a terrible state in the body and, even just one episode, can leave lasting damage. -
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WildCondor
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Why are you bringing this up again? The doctors that used this ICHT/IPT illegally are all in prison and some of the patients are dead. Do a search online this, all the info is there.
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Keebler
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- Besides searching at Google and PubMed, past LymeNet threads can be searched here:
seekhelp
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It's so disappointing Bea to hear how bad your husband did at the Kansas clinic. It sounds like such a miracle for all the others like Gary. It sounds like most people they touch get cured/in remission.
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springshowers
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I think there is some confusion
IPT or IPTLD� (Insulin Potentiation Targeted Low Dose} is NOT the same as ICHT and what was posted above about doctors and Patients is not True in relation to IPT.
I think there is confusion here and we need to correct these posts ...
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springshowers
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Definition of ICHT
ICHT is an experimental treatment which involves raising the body temperature to kill spirochetes. Temperature treatment for spirochetal illnesses has it's roots in the old Malaria therapy for Syphilis. The old Malaria therapy had a death rate of 1/20, and a successful complete remission rate of 50%.
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springshowers
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IPT
IPT is insulin potentiation therapy, a non-diabetic use of the hormone insulin to dramatically improve effectiveness and delivery of standard medications
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Hubby had had no antibiotics prior to the one and only IPT treatment. During that treatment he received IV Rocephin -- I thought it was 150 mg but he thinks it was only 50 or 100 mg -- I would have to dig to find those notes.
Anyway, I think he had the tretment on a Monday or Tuesday and then on Friday he was doing so badly I took him back to the doc's office and they hooked him up to fluids I think -- he passed out and when they couldn't revive him the rescue squad came and took him to the ER from the doc's IV room.
He had his 3rd spinal tap during that hospitalization -- supposedly everything was normal.
When he got home he had a cough (new symptom) and he scared me his breathing was so noisy during sleep. He was diagnosed with sleep apnea shortly after this and the pulmonologist found the pulmonary nodules and bilateral hilar adenopathy. Had to do PET scans for 2 years to rule out cancer since the bronchoscopy only showed inflammation with unknown etiology.
Later another doc expressed the opinion that the IPT treatment might have driven the infection deeper into his tissues causing the lung issues. Not really sure, but these were definite new symptoms.
And yes, during the treatment you do become hypoglycemic.
Bea Seibert
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WildCondor
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The same doctors who illegally used ICHT and IPT in the USa and Europe used the treatment you are talking about and killed Lyme and Cancer patients. They used several marketing scams to bring in patients and run experiments on them and made a ton of $. They are in prison now. This is going to mislead patients reading your post into thinking it is a potential treatment for them. We do not need the definitions or for you to dredge this all up again, it is over and done, people died.
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Wild Condor -- IPT is a legal medical treatment in the U.S. It is NOT the same as ICHT. The doc hubby went to specialized in chronic fatigue and alternative cancer treatments -- unfortunately he was not lyme literate.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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WildCondor
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Yes I know they are 2 different things but they are often combined/marketed under the name IPT when in actuality that is not what the patients get. Instead they are experimented on and for a lot of money! I saw this stuff first hand and it is dangerous, shady and scary. Lyme patients have died from it, and doctors DO and have used it illegally! DO your own research, if you choose to ignore the warnings that is your prerogative. I'm through with this.
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springshowers
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Well gosh..
Ok Bea is correct it is a legal treatment and being used widely and it is saving my mothers life as we speak as she has been doing IPT for the past 6 months and is responding very well.
It is a real and feasable therapy and it IS being used to treat lyme and Cancer and other diseases.
There is nothing wrong with talking about this but "again" there are some who think they know what is "Right" and what is "Wrong" and the rest of this forum and board better follow along.
I take offense to be accused of trying to bring something up that will harm others.
You guys.. WC ANd Keeblern obviously do not even know what it is I am talking about.. and are assuming it is the same or even like something else.. I never even brought up.. You did! And its NOT
Sheesh.. Talk about being jumped all over...
Whatever .. people
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springshowers
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Here is a site for anyone interested to read further.
The benefits of this process would be to be able to use low doses of abx but it being much more efficient and therefore reduced problems with the toxicity of abx and how they can affect the whole body. So you need to do much less treatment such as 1x a week instead of every day and much lower doses.
It is my feeling that this is much safer than doing IV abx full force ongoing for months and months. I can tell you from experience of Month in a row of daily abx that i could feel the toxicity increasing and increasing and doctors get nervous about many of the potential side affects and damage that can happen to your organs.
I think that IPT is a great exciting alternative and I spoke directly to a doctor doing this treatment and was very impressed and even more hopeful.
This treatment is saving lives of cancer patients who need chemo but their bodies also would and could die from the chemo iteself as they are not strong enough to handle chemo. I am sure you have heard of many family and doctors who admit that it was the treatment that ended up killing them in the end. WEll now cancer patients have options and the treatment itself actually is better because of the direct process and the medicine goes to where it needs to be.
I say this is worth looking into and we can not keep being afriad after one word or side affect.
I bet this will become more of an option in the future as it is more accepted. I talked to another doctor who is going to be doing it along side a couple other lyme doctors. There has to be exclusive training for this procedure so some lyme doctors or clinics are looking for those who are already trained while they get training too in the future.
This is exciting and we should not shut the door on things that are not familiar or the Same old.
We are not where we need to be and people are not getting better enough. Those who do seem to relapse and this disease goes around and around. We got to keep digging and trying new things..
Has anyone else here ever heard or or tried this type of treatment? I am surprised nobody has but then again I am finding that this forum really is not a full or accurate sampling of lyme disease patients.
The more I am out there in clinics or talking to support groups off line and some other groups even online...etc I find a whole other world of people doing and saying many other things that this group. Its pretty interesting and also eye opening.
And again a reminder we need to keep our eyes and ears open to new things and not close doors.... ever..
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springshowers
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Well I am certain confused ..as there are long lists of doctors who are trained and certified to do IPT. I called and talked to just a handful and they are not hidden or hard to find and they mostly all treat cancer. I did find a couple who treat Lyme and or other diseases with the delievery technique of IPT and they are MD's and DO's and Certified and Practicing and this is not just weird behind the schenes quack practice.
Ithink that maybe something happened in the past that a few of you are stuck on and it has put a scar on you and you stamped it.
So maybe just maybe there are reasons it is being used still now and that people are doing well on it.
It is saving my family member who is to weak to handle chemo (it would most likely end her life) but needs chemo. And now she is getting the normal chemo drugs and not only smaller doses but directly to the cancer so that it does not affect the rest of her body.
And I wont let just a few here from the past put a bad mark on it...
Luckily for me I do not listen to the select few h
I am so thrilled about this treatment and the more I read up on it the more excited I am and the more I see how it works and understand it the more I see the potentials of it.
IPT can be a resource that just delivers the drugs and treatments in a manner that is much more affective and targeted and uses much less medication as a result.
IPT is an FDA approved technique. So I say keep an open mind and maybe this could help many of us get well who have struggled with finding the right treatment for us.
This is a legitmate treatment and doctors are performing this. Do your research and read up on this subject and see what you might find. Call doctors and clinics who are performing this. You will not have a hard time finding them.
I think it is much bigger to claim something is dangerous than to try to open up a discussion about a subject..
I have not yet found anything that shows that anyone has had any bad reaction to IPT treatments.
But If I do I will read it diligently and intelligently and see what the cause was. I know this is being done all the time all over the US and World and its growing.
I have done a lot of research on cancer treatments and options because of a family member who is very ill. And this is a very feasable and great option for chemo for cancer patients and it is helping tremendously and like I said saving lives. It is saving my family member right in front of my eyes. It is much more relavant in the cancer community so that is where you will find it mostly.
The clinics I have visited and talked to have primarily cancer patients but some others to. here and there and I am told they are using it for other types of diseases more and more..
.
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Abxnomore
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Hi Spring,
I'm glad to hear that IPT is helping your mother. Take the scare warnings with a grain of salt. IPT was, indeed, used by one doctor in the states quite a while back along with his so called illegal quack version of ICHT.
It was bad news but so was the doctor who was using it. He was using DNP illegally in the states and didn't have the proper knowledge or experience about how to use it. There were not many good out comes from that facility and many even became sicker. He also tried his quack therapy in Canada and Mexico with poor results. I did hear that one person went on to resume his normal life I but have no idea if all these years later that is still the case.
I'm not sure that the use of IPT performed by an inexperienced doctor with questionable ethics should color your ideas about this procedure and it's possible that improvements to the therapy have been made since then. I have no idea about how it affects Lyme patients, but in the case I refer to it was not good. As you mentioned, it is legally used largely for cancer patients and I am not familiar with the distinction between the two different types you mentioned. One type may well have better outcomes. You seem to do your research very well.
As far as the Italian ICHT, IPT was NEVER used in Italy as part of that protocol. From what I know one Lyme patient died in Italy and the cause of that death, which is discussed at length in the legal proceedings of the Bachnysky case, show that the cause of death was not due to the ICHT therapy nor DNP. In fact, the legal proceedings suggest that DNP does have medical merit.
Many people perpetuate misinformation about the entire Italy ICHT/DNP protocol based on rumor and dislike of that particular procedure and the doctor associated with it, rather than on experience or fact. All of the "so called" horrors have been posted on line by those who never took the procedure but seemed to have an ax to grind. The indictments, newspaper articles, etc.,....... all the negative stuff was posted on various sites but after the close of the trial, wherein it was stated that the cause of the death was not due to ICHT treatment or the use of DNP and the discussion of the medical merits of DNP, of course, were never posted.
So the information out there is clearly skewed in one direction. The information is all in the public record and can, of course, be posted just as all the negative stuff has been but never was. The same old misinformation is automatically posted based speculation and out dated information. It may behoove the naysayers to actually read the legal proceedings and post the truth about the therapy.
As far as your initial description of ICHT, a therapy that is no longer available but did cure a handful of patients who remain well until this day, remember that it heated the cells intracellularly by increasing the body's metabolic rate causing energy to convert to heat and killed the spirochete when it was exposed to a certain temperature over a certain period of time. That is quite different from heating the body by inducing a fever, which is a central nervous system response and very dangerous. I think you did make that distinction but it's an important one to repeat.
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Abxnomore
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Ping, in response to your post there were no feel good products given to the patients in Italy. It was DNP, ABX if they wanted it, ringer solution and saline, along with HBO.
The treatment was brutal. There was nothing "feel good" about it.
Many did feel good at first and then relapsed but the treatment did work for some who did it in Italy. There is no medical treatment that uniformly works for everyone, medicine doesn't work that way, and it was an experimental treatment.
People who took the treatment did post at the time of the benefits they received but as you know it became such a heated issue that those who said they were well were called liars and ultimately got disgusted and left the site.
Some were treated more than once but not all of those who were retreated became well. What evidence could one post to prove on line that they were well? Only what they posted and they were all verbally attacked.
People did not begin to die. That is not true. One lyme patient died almost a year after the treatment program began. As I stated above, the legal proceedings state that the death was not caused by the treatment or DNP. There was never more then one lyme death nor was there an increase in deaths.
Close to 30 people received the treatment as I understand it, some more than once, and one lyme patient died in the last session of all the treatments that were given.
There are patients who are well until this day. Of course, given that it was such a hot button topic there is no wonder why you don't hear from them. Even all these years later the facts are misstated and misunderstood.
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None of teh Cancer patient there doing this had any success. Many died shortly after.
I don't think it worked and I think it damaged me a bit.
They were gonna do the heating of my blood, but the guy before me who did it died on the table.
So, I didn't try and flew home.
The clinic was closed shortly afterwards.
My advice. NO!!!!!!
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springshowers
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THanks for the info Abx
I am still not sure why this thread ventured toward the ICHT and I can only assume it is because of what you said that there was some relationship years ago between doctors who did on or the other or both?
I have not seen anyone doing ICHT anymore in the US or out of it?
And the IPT I have seen all over the place and I did not think or associate the two.
I still dont.
They are two separate things.
And I do not get why everyone is stuck on the ICHT when that is not even what I posted about..
So. Well.
Too bad there is fear to post certain things and certain experiences.
I have not one red flag about IPT as of yet from my readings and talking to doctors in depth and my mothers doctor and the IPT foundation director and more.
Maybe I will.. I have 2nd face to face appointment to discuss it with a local doctor.
So who know.
I do not like closing doors on anything. And certainly not because of a few who have not given me any real reasons.
And if something happened in the past that everyone is all stuck on.. well.. I think abx said it well. Do the reading and research before you just jump to a conclusion.
You could be shutting off something that could be a good thing.
I think that this thread has become about ICHT...
And seems that IPT just gets clumped in together with it..
So.. Well .. for anyone who wants to know more or wants to hear about this.. I am sure you will do some research and reading.
My mother has not had any adverse side affects and she is gaining ground without the deadly affects chemo can have. I can guarantee if she did conventional chemo the way it is usually adminstered she would not be here today. She has a couple teams of doctors. The ones that do not do IPT said that they are astonished by how she has been doing and says to her "keep on dong what your doing". They know that the other route would not be giving her these sorts of results with the obvious non evidence of side affects. Its wonderful to see and I am so grateful to have found the clinic and the protocol..
Now hearing that some use it for Lyme .. and you can see why I would want to hear more. And I am watching first hand how my parent who is much older and more fragile is doing so well. Even if the chemo itself is not the answer (it is the same drugs).. Then she does not have suffer.. So far it is working and working well . As you know you have to switch drugs during cancer treatment and each drugs works for awhile and then you have to go to another. She is doing that and able to handle those treatments only because of IPT.
So sorry if I can not jump in and join the negativity.
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Abxnomore
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No one can talk about ICHT with out all the negativity and no one believes that people actually got cured from the Italian ICHT, when they did, albeit not many.
Very sad that most cannot sort out the good from the bad and then folks say that the ones who got well never come back to talk about it. Now you can see why.
The doc in Atlanta, who also did it in Mexico and Canada with very bad results because he didn't know what he was doing used IPT with ICHT.
That is what all the fuss is about and why it's lumped together. That was over nine years ago, they are both in jail as stated mainly for fraud, white collar crimes relating to defrauding investors and misrepresentation and various other charges that is a list a mile long.
You are right. IPT is a totally separate and distinct therapy from ICHT, which is no longer available anywhere in the world and was never legally available in the U.S.. The guy in Atlanta who claimed he was doing ICHT, only called it that. He was clueless about how to use DNP. He stole the idea, didn't develop it, thou the two had a business association at one point.
Too bad people can't be open minded and reconsider things a new. Good luck to you and I hope your mom continues to do well.
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Abxnomore
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It's amazing how twisted this has become.
IPT WAS NOT used in Italy. It's an entirely different treatment.
The death in Italy was not caused by the treatment or DNP. Go to pacer and read the legal proceedings from the case. Know your facts before you spread false information.
People should not speculate. How could any one know what caused the death unless they had access to the autopsy report, which no one here did or bothered to read the legal proceedings of the case which have only been available for about a year or so???
Over thirty people did ICHT in Italy, some more than once and there was only one very unfortunate lyme death. How does that give anyone the knowledge to say ICHT was a dangerous treatment when some were cured and the ones who relapsed survived the treatment without any problems while receiving it.
How many people die from lyme disease, sepsis and other problems related to medications. Lots.
Cancer deaths from ICHT cannot be grouped into the same category. There were deaths. That should not be a surprise.
The approach used on them was different than the one used for lyme patients and cannot be compared. It's an entirely different illness and most of those patients went there when they were in their final stages of life and the U.S. medical system had nothing left to offer them.
There were some cancer successes,too and others lived longer because of the ICHT treatment they received. That's in the legal proceedings too.
After all this time can't any one be objective?
Apparently not.
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springshowers
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yeah I guess not
yep you can read here above and just see how people do not even know what they are talking about or are stuck in the past decades.
sadly..
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Maybe this way is different. They out me in a controleld coma basically.
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springshowers
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Decades ago when it first came out they induced a hypgylcemic coma of sorts.
This is not how it is dong any longer and it now approved and legal and many doctors being trained to do this safely and efficiently.
It just got a bad reputation from certain doctors and from the first more drastic methods from my readings which no longer issues.
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springshowers
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Well.. if anyone wants to hear. I started the first of 8 treatments
The first one went very well and I could tell the different quite rapidly and its had to explain the feeling but if this is how it will continue I am hopeful after 8 weeks it will help me quite a lot.
IF anyone wants to know more let me know. The normal blood levels
Here is a site that explains it in simple terms of how it is administered and its history etc from the Manhattan Advanced Medicine Clinic.
Curious as to what antibiotic you are using with the IPT treatments -- is it one you have done before or a new one?
Also curious as to why you are concentrating on antibiotics when you have said Dr F has found a parasite in you which he thinks is the key as to why tickborne patients remain sick? Do you not agree with the assumptions made by Dr F?
It seems to me that most tickborne patients have to get rid of the babesia type parasites before they have real lasting progress with antibiotics for Lyme.
Just trying to understand what direction you are taking your treatments in and if there is a doc guiding your overall treatment or if you are simply seeing multiple docs and winging it so to speak.
Bea Seibert
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springshowers
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Hi
The docs I am seeing are on board with Dr Frys finding and considerations.
They are rotating various abx and use combinations based on my records and tests.
It is true it is hard to treat the Fry Bug but also they are asking me to stay on my oral regimen as well that Dr Fry has me on.
The first rotations is actually using Flagyl and a couple other abx too.... They feel helps with treating Fry Protozoan as well as other things. Then they use others that are anti viral and anti fungal and anti bacterial.
Because they can use such a low dose in this sort of treatment they also can give me many things in one treatment. So I may get two to four abx in one treatment.
Even so .. it is still as you know .. with all treatments.. not guaranteed as many treatments out there. Even the ones that have been around for a long time may or may not work on some people and have to be adjusted and changed etc.
This group of doctors put their heads together and came up with this protocol that they feel works best.
They are big on detox as well and have a large group of modalities they offer while you are a patient there
The reasons I switched from the other clinic was to try the IPT even though a doctor at the other clinic does it in his office I did interviews and choose this place for a list of various reasons...
So it really is just a continuing of my treatments as I got disrupted by a bout of flu in the winter and then a bout of sepsis and was hospitalized. Those items made me step back have to take a break ..
In the meantime my mother who is doing amazing on IPT started to send me all sorts of information and I got in touch with the ITP foundations and started to talk to doctors about IPT for lyme and I was amazed to find many doctors and a ton of support.
That all lead me to where I am and I just really felt it was something that I should try instead of continuing on longer with just IV abx.
I Not only have the Protozoan but I have Lyme many co infections and viral concerns. I do agree with Dr Fry and that the protozoan is a big key to why people remain sick. yes. But after getting the flu in 2008 I relapsed with lyme and many co infections. Even though I agree with him I did not want to just not do anything at all about all the other infections that I have.
I am working and talking always though to all doctors about how best to make sure to include treatments for the protozoan. Sadly as you know there is not one treatment that has been found yet to kill that bug.
My hopes are to get the loads down of ALL the infections I have and build my body and immune system up and my hopes are I get to that place where the body is able to keep things under control and symptoms at a minimum.
That is all I think we all can hope for if you ask me as I do not think there is a cure and nor do I think you eradicate things completely from our bodies.
Ia m getting closer and the last few months of IV treatments did me a ton of good. Ironically Flagyl was one of the things I responded most to. But I also responded to other things.
The other reason I am choosing this is that I have done Oral abx and treatments of many kinds for years and when I did IV it was incredible to me how different it was. I responded to them totally differently and it was working instead of not working and feeling worse or herxing all the time. I was given a new hope since starting IV and I feel my time with it was cut a bit short.
I will know in just a few weeks how I am responding and how I do. There is not just Abx that they give me at treatment time and it is a proprietary treatment blend that includes Abx of various kinds. If I told you the dosage you would think it could no way do me any good. But that is the whole premise of IPT if you read up on it.
I will let you guys know how it goes if you want in the next weeks.
That is all we can do is try. Various people have tried various things such as Gary who just went to the Hansa Center. That does not necessarily warrent the world "winging" it but then again that is what we all kinda are doing within certain parameters.
I know some think that IPT is out of the parameter but after my own research I disagree and there are many doctors out there who are doing this and agree that it is very helpful to many people with many ailments.
I myself and hopeful and I find it exciting to try something new. It is not like I am off doing my own thing all by myself. I am seeing great doctors and am under their care..
WE got to find something that works. And it does seem to come down to a variety of things that do not include just killing the bugs. WE got to build up our immune systems and also make sure our bodies can detox the toxins that we have built up over the years and the ones that the bugs are making and the ones that the treatments are producing too as they kill bugs.
Blessings to all.
I would hope that we would all support one another no matter what our treatment choices..
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runner21
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posted
Hi I have yet to read this whole thread but all i can say is RUN. this is not the answer for chronic lyme.
I was a patient at the atlanta clinic as well as Italy. I went from having a really normal metabolism to bearly being able to process sugar from insulin poteintiated therapy. It almost made me prediabetic. if anyone knows anything about this, and why this might happen please contact me.
It causes metabolic malfunction in the systme and it appears no one truly knows what the long term damage is.
Consider yourself VERY LUCKY for these people telling you to steer clear. if only i had known to do so as well...
Atlanta did ipt and later did do some hyperthermia. italy was mainly hyperthermia. both doctors are in jail..and their license revoked. Wild Condor is righton the money and she does know what she is talkinga bout.
Runner
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runner21
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posted
Also please remember lyme disease is not cancer. Most likely you are toxic spring,a nd no IV anx will cure that long term and only stress your elimination organs more.
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gwb
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posted
quote:Originally posted by seibertneurolyme: I have posted on this a couple of times in the past. Hubby had one IPT treatment with only 150 mg of IV Rocephin. The same day he also got a Hydrogen peroxide IV and IV Vitamin C.
That was probably one of the worst ways to spend over $1200 ever.
He ended up getting sicker for 3 or 4 days before he ended up in the ER and hospital. This treatment greatly exacerbated his seizure-like spells even though he was on Depakote at the time. He was put on IV Ativan following this experience and stayed on that for about 6 years before he switched to oral ativan.
As I said before, at the time he had had no antibiotics. Just the disastrous treatment with Dr J in Kansas City. But the IPT treatment made him far sicker even than the Borrelogen etc. He went from having seizure-like spells to having myoclonus also.
In between the two treatments hubby had nutrition IV's daily for a couple of months to recover. Then he had numerous IV Hydrogen peroxide treatments and about a dozen IV ozone treatments and 3 UVB treatments. Obviously none of those things did much of anything for his infectious load of lyme, babesia, bartonella or mycoplasma plus most likely ehrlichia and Borna virus and HHV-6, CMV and EBV.
The 2 patients hubby's doc also treated with IPT were teenagers who had arthritic type symptoms and had had extensive antibiotic treatment prior to the IPT.
So maybe, it would help if your infection load is low enough, but I don't have much confidence in this treatment.
It was almost a year later before hubby was treated with his first real antibiotic -- IV Rocephin. By that time his MRI report actually said the brain lesions could be caused by lyme disease. We wasted a lot of time even after he was diagnosed because the Dr J treatment and the IPT made him so sick we were afraid to try anything else.
And at that time we had no computer and really knew very little about lyme and just how serious these tickborne infections are.
So I would just be prepared for a very serious herx if you do do this. And then there is the even bigger question of what dose of antibiotic would help but not make you 100 times sicker than ever.
Bea Seibert
In fairness to Dr. J at the Hansa Center, IPT is not anything that he does at his center. Bea, it's unfortunate that your husband had a bad experience with IPT. It's also unfortunate that he had a bad experience at the Hansa Center several years ago, but in fairness to Dr. J, I think it needs to be made clear that Dr J does NOT treat people with IPT. It's important that no one get the impression that he practices this method of treatment because he doesn't.
I know you didn't say that Dr. J treated this way, but you have brought up on a couple of other occasions (on other threads) about your husband's bad experience at the HC. It really didn't seem to fit the topic here, so I'm not sure why you felt it needed to be brought up in this thread.
I think you've made it clear that you do not agree with Dr. J's protocol because of what happened to your husband. You have every right to do so, but since it didn't fit the topic of this thread, it didn't seem appropriate to me that it be brought up here.
Like seekhelp said, several people have done well on the Jernigan protocol and have gotten better using his remedies, treatments and therapies. If you do a search on Dr. Jernigan, or the Hansa Center, you will find very few people who have complained about his treatment protocol. Sure, you will find some who didn't get better, but for the most part, you will find many more who did get better--like I did.
Anyway, it isn't my intention to defend Dr. Jernigan, but seeing his name brought up on this thread in a negative way, on an unrelated topic, I think could be confusing to some who read your post. I felt this needed to be clarified so that no one gets the impression that Dr. Jernigan treats people with IPT because he doesn't.
By the way, for others who are reading this, I'm not making any judgment one way or the other about IPT treatments. I know nothing about this treatment protocol. I just wanted to clarify that this isn't something Dr. J does in his office.
Bea, how is your husband doing now? He's gone through so much suffering over the years. Seems like he's been through every protocol in the book. What protocol is he on now? I know I've told you this before, but I want to say again, your husband is truly blessed to have you at his side. All the research you've done for him and helping him with is treatments, you deserve a Gold Medal for it.
I can only imagine the toll it's taken on you at times. When I was real sick last year, and not sure I was going to live much longer, I felt really bad for my wife. She had to take a lot of time off work to care for me, including taking me to the ER, doctor appointments, etc. It pained me to see her taking on the heavy burden of taking care of me and worrying about me. She did it all without complaining and was always there for me.
I'm blessed to have a good wife who helped me get through those difficult times. Your husband is so very blessed to have good wife like you who's always there for him as well.
It's sad when I read about spouses who are not supportive of their wives/husbands who suffer with this disease. I never realized how many spouses aren't there to support their wives or husbands with this horrible illness until I read some of the comments on the General Support threads. It's truly sad that many of these people have no support from their loved ones like we do.
I hope and pray that your husband is doing better and beats this miserable disease. I pray too that the Lord give you strength and grace to continue support and care for your precious husband.
The reason I mentioned Dr J in my post was because I felt it was important that others who might be considering IPT treatment know what previous treatment hubby had had before he did that treatment. As I said before hubby had had no antibiotics prior to the IPT and the only herbs he had had were those from Dr J for the 6 or 8 weeks we were in Kansas.
I did say that I felt the treatment might possibly be ok for others who had had prior antibiotics or herbs -- but not for someone who had just been diagnosed and had received little treatment for Lyme and tickborne infections.
I posted a couple of weeks ago about hubby's new bartonella protocol and will be updating that thread later this week.
Spring,
Hope I didn't come across as too negative. I was just trying to understand where you were headed with your treatments and how the IPT fit into the overall picture. Thanks for the detailed explanation.
As I said in prior posts on this thread hubby got somewhere between 50 and 150 mg of IV Rocephin during his treatment. Have never heard of combining multiple antibiotics in one treatment. I just can't imagine very many people could tolerate that very well.
Bea Seibert
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springshowers
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posted
Gary I am glad you posted what you did because I feel the same way about all you said and about posters assuming things and clumping things together.
Also blaming.
You can not blame a treatment or call it bad or wrong just because it did not work or even if it caused problems for you.
WE are all different.
Dr. J has a clinic that I can not imagine anyone would have a bad reaction to. I do not believe for a moment that in the case of Beas husband that it was the treatment that was the problem. We have to look at the full picture and each case is individual.
THere are way too many people jumping to way too many conclusions based on either very Old outdated information or based on isolated events.
There have been people who have died on the operating table while getting by pass surgery and we do not just stop doing that surgery.
You have to come up with real evidence that the procedure is the cause of the problem. And I can bet that many die who may not have died just doing a surgery such as this. But the choose to do it and signed the release and was told of the risks.
Anyway.. Its good that people post their warnings or issues with a protocol or treatment. It aides in our own research. I just have to emphasis that you should do your own research and not just "believe" people here.
Do not believe me and do not believe any of the posters here or anywhere..
DO your own work.
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springshowers
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"Are there any dangers in IPT treatment? Unlike with conventional chemotherapy, there have been no reported deaths as a result of IPT. In brief, there is no danger. The worst side effect encountered is easily managed constipation. Unlike conventional chemotherapy, anemia and decreased platelet counts are unusual and usually not so severe as to require transfusions. "
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springshowers
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posted
Bea
I am not sure what you mean by saying that you do not think people could tolerate multiple abx.
Maybe you got some strange type of treatment or they did it wrong.
"IPT consists of an artificially generated pulse of hypoglycemia (low blood sugar) that apparently improves the effectiveness of drugs through several mechanisms. IPT makes cell membranes more permeable, and increases uptake of drugs into cells. It apparently makes tissues more permeable, too. It can help transport drugs across the blood-brain barrier. It may stimulate growth of blood vessels, and may stimulate and balance the immune system. "
"1/2 to 1/20 of the regular dose is given"
If you read that you might understand that not only are doses less but the uptake of the drug is different and it helps go to where it is needed most and leave the healthy cells alone.
So its easy to tolerate and easy to give various drugs even at once.
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This will be my final comment on this subject. I don't have the time or energy to argue. But I can't totally ignore your comments either.
As for the Dr J clinic -- sorry but we will have to agree to disagree. I am a strong believer in cause and effect -- the only things different hubby did in the 8 weeks in Kansas was to add the Borrelogen and Wobenzyme and to stop most of his supplements.
As I have said numerous times, if someone has a large bacterial load then they can have a very serious herx reaction. That is what I think happened to hubby -- but we were not warned about this and the doc did not know how to respond to this because he had very little experience with neurological Lyme at that time -- 2002.
As for the IPT -- hubby had the exact same procedure you did from what you have described. But he only did one antibiotic -- approx 100 mg of IV Rocephin -- normal dose is 2 grams or 2000 mg -- so the normal dose is 20 times higher.
I know very few people who are on 4 or 6 different IV antibiotics at once. That is what you are saying you are getting. And I still think the majority of tickborne patients would have serious problems handling that many different IV antibiotics -- even without the use of IPT to make them go to the brain or the nervous system.
And as someone else pointed out -- Lyme is not cancer. Physicians understand much more about how cancer cells function than they do about lyme and many of the other tickborne pathogens. SO just because it works for cancer doesn't say anything about how it will or will not work for tickborne infections.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Thank you. Thanks for taking the step to try something new you believe in and share the experience with us.
I'm exciting for the possibility of your recovery and the possibility of what could potentially be a successful method of treatment for Lyme and Co.
If it wasn't for people like you willing to objectively weigh the risks and rewards and take chances in life, progress would never happen for Lyme disease.
With respect to the others comments and concerns, everyone should be showing support for you in this time.
I look forward to hearing more about this.
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springshowers
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posted
Thank you Wolfed for your comments. It is very much appreciated in this time and I agree we need to support whatever choices we make to get well.
Bea First off you are quoting me wrong and I did not say 4 to 6 abx all at once. I said they are rotating about 6 and do about 2 or so at a time. I say "about" because it depends and they may add an antiviral or anitfungal to the mix and I call those abx. Maybe you dont. But including homeopathics and other natural things Yes I got at least 6 things put into my line at the time of the treatment when the blood sugar was at the correct level for this treatment.
Also your analogy of how the treatment works if off. I do not think you are visualizing or understanding it correctly. As well this comparison to cancer over and over does not mean anything to me. I know I do not have cancer. It is not used for just cancer. And the dosing and the way people "handle it" is not what you describe either. I think that maybe you may not understand the science of it or the way it works and how we ARE able to handle it because of how it works. Not the opposite....
And I totally disagree with you that you can gauge a doctor like Dr J based on your experience and based on the ideas you present of what supplements etc he was taking or not taking.
That logic will work for your husband only in evaluating what happened to him and only him and not anyone else nor is a reflection on the doctor himself.
It is one thing to share your experience to help others and it is a whole nothing thing to take your experience and put a large stamp on a doctor and use that to talk badly or warn others against that doctor.
Gary had a great experience and your husband did not. There will be such experiences that are on both sides of the fence. If so I then would look more into things and get bigger values of numbers of people who have gone and what the reports seem to be and not only that why.
Gary said he did that research and the majority have had good experiences.
I think that others can figure out that one persons experience is not a way to gauge a doctor or protocol. I do not know why I even keep repeating it but there are a few who feel that is what I should and others should do.
No thanks...
Blessings and Good Luck to you
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springshowers
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posted
PS
I asked the doctor I am seeing if IPT will make me herx a lot. He answer was NO and NOT at ALL and that i will just feel progressively better.
I have only done one treatment and so far he is right.
We will see. >Too soon to tell
But The statements above by Bea warning for big herxes and to feel so much worse and to not be able to handle it are all the OPPOSITE Of the theory of this treatment.
I have no clue where she is getting her information but I need to write for anyone reading them that it is not near close to my readings or my talks directly with doctors.
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Abxnomore
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posted
Spring I applaud your courage, research and ability to think out side the box and follow your own instincts.
You go girl!
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daisyrlb
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posted
There is a time to take a deep breath, take a step back, and see the truth for what it is--no one protocol is the answer for every person. Each person is so unique, affected very differently by Lyme and Company, and respond uniquely to the protocols out there. What works for one person, may not work for another person, and for some people, very unfortunately, nothing seems to help.
There is good news! Through the years much progress has been made in various Lyme protocols for which we can be thankful. Dr. B has revised his guidelines more than once, as has Dr. K, as has Dr. J--and probably every other Lyme-literate doctor in the US or around the world for that matter. (Consider this--Cancer is being treated very differently today, than it was even several years ago; the same is true of heart disease treatments, etc, etc).
Dr. J shares a very gracious dedication in his book that I think we can all appreciate as we journey together toward wellness:
"Dedicated to those doctors in the trenches who struggle to achieve lasting results in their Lyme patients; who fight a politically incorrect illness; who through sweat and tears fight stealth microbes; who struggle without any medical and insurance company agreement; who bravely reach beyond their conventional training for the betterment of their patients.
This book is also dedicatd to my patients, and the patients of other Lyme-literate doctors, who, in desperation at times, stick with us while we continue to learn how to deal with this most dastardly of illnesses."
I agree with those who share this sentiment--we all do well to support and encourage one another.
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springshowers
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posted
Thank you ABX and Daisy
Great words and ideas and thank you mostly for the ongoing encouragement and support.
Those are great words from Dr. J !! Thanks for posting that.
I hope it is read by many and a reminder of many concepts that sometimes are forgotten in this world of Lyme.
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runner21
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posted
spring the therapy was in 2003. No one i dont think got much better..and several got sicker. with metabolic issues on top of it, something you dont want with lyme.
in my experience the cookie cutter protocols do not work. i have been to so many conferences and listen to so many professionals..and i just can help but agree to this.
we all cant wear teh same jeans and its the same with protocols..there is alot into play with lyme. genetics, bacteria, how long you have been sick and environmental toxins.
maybe look into patricia kanes work, or dietrick klinghardt..but i wouldnt do this..
i do admire you for wanting to try, and seek out the answers, but and i think some people have told you no, run..and it has almost swayed you in the other direction, this happens sometimes with psychology, but i am warning you, do your research, talk to patients that have their life back, look at the consequences of this therapy.
the first law of medicine, do no harm. you follow the body where it is..it took me years to learn this..at quite a young age.
Bea, i am sorry people are disagreeing with you so strongly, but i can relate to whatyou are sharing,i was in the same boat and i wish I would have never ever engaged in this therapy.
Runner
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springshowers
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posted
Hi There Runner
What do you mean cookie cutter approach.
IPT is not a cookie cutter approach. It is just a delivery techique for the approach and medications your doctor and you agree on
So again I just do not follow the logic presented here. Things have changed since 2003 in this area.
And Hey it is not Psychologly that makes me go towards this. I had already been reading and doing research and already was swayed in the same direction I am before I posted. I just an not convinced by the posts to stop the path I choose.
Do not put me down so much as if I would just do the opposite of what is typed "just because" or that I am choosing the methods I am because I am "winging it"
I am feeling great even after the first treatment and am so very happy and more hopeful than I ever have been before.
Whatever reactions others had in the PAST were in the Past and I have a feeling , even though I can not say 100 percent for sure, that what you guys got is not exactly how they do it today. Even so.. whatever.
So. I am NOT having any of the described reactions or side affects or problems described here. I will let you know if that changes.
Instead I felt the medications as they entered my body during the treatment in a manner I can barley describe. Like they were on a mission and and knew where they needed to go..
I have heard of one woman who was cured of Lyme and Sclerderma in very few treatments.(not sure how to spell that) The case is written up in one of the ITP books out right now.
If this is how I will feel forward and if this builds or I continue to improve upward from here this will be the the single most outwardly and obvious treatment for me that is working and working very well.
Others I had to feel out and give time that feeling of maybe it is and maybe its not and we will see etc.. and over months yesh now I can see progress looking back.
This is much different already!
I have many improvements already and I will not assume anything at all at this point> I can only report as I go. Kinda like Gary did and it will be what it will be. If it fails I already am ok with that because all treatments are a "maybe"
I got to say people.. This one has given me so much hope and I can not wait for my 2nd treatment.!
This is a great thing so far...Please pray for me that it continues. Since this was such a closed topic this could be a new opening that could help many when all other things are not working for you or even prior to that.
I read in an article that a doctor recommends that you try IPT first before other things because within the first few treatments you will know whether you are going to respond or not.
Please keep an open mind everyone and please read all you can and try to really figure out the whole history and put the pieces together for yourself before ruling out this treatment option.
I agree .> Do no harm. THis treatment option is designed DESIGNED TO be more gentle on you than conventional methods of delivery.
You get better treatment with a lot less abx or whatever medication used. THey are using this for other disesases too where the patient is having problems with the medications themselves and is suffering because of them. This method saves the patient from those problems while giving a better and higher quality more targeted treatment.
This is exciting to me. As you can see. I was excited about it before I even tried it and now that I am responding well >. of course much more excited.
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springshowers
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posted
Well Tomorrow is my 2nd treatment!!
I am very excited because this week has been the best week I have had in a long time.
The two days after were not the greatest and the next 5 have been the kind you do not want to say anything because you need more time go to by before you celebrate it.
The ups and downs of this disease can do that to you.
But the last 5 days I can not even describe right now and will not try.. YET>
We will see.. but .so far VERY Good signs.
Hoping that each week will build on another. If so then this will be an amazing thing.
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springshowers
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posted
IS everyone leary or afraid of this treatment type?
I am only on week two but I am feeling better and better and amazed at how it is working. I am a difficult case! So if it is helping me I bet this could be the key to many of you.
I have done Normal IV abx that did take me a certain distance. It brought the loads down to a certain point but then stopped helping.
Or I was thinking I needed longer on them. And now this is an integrative treatment with low dose abx that are put in at a time when your blood sugars are low and the theory is that the cells that need the abx will be sucking up the blood sugars again the fastest and the most and that action (this is not exactly the medical way to describe it) but the medications hitch a ride on the fast train to those that need it most and skip by those who dont. So you get the most benefit with the least amount of toxic drug.
I have never felt anything like it!... The day of treatment is tiring and I come home and pass out and its just a long day and its not that pleasant overall to get poked and be hooked up for a few hours and when they bring your blood sugars down you do feel weaker and more tired for a few hours and that whole thing just takes a bit out of you.
But then I just feel better and better and more and more energy like I can not remember..
I would not shut your eyes or ears or the door on this option folks.
I am not trying to sell anything or sell it to you. I just see nobody really interested and that makes me wonder why?
There are many here I know that have tried many things and its not working...
I would at least read up or call someone to talk about it..
There are doctors lists on the IPT Elka Best Site.
Blessings everyone. I just feel it fair to share this too as good news.. just like bad news..
Its there for you.
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