Vanderbilt Protocol

[niecy]

I was just curious if anyone here has been put on the Vanderbilt Protocol? If you have, what kind of results did you experience. I have been put on this protocol, and am supposed to start tomorrow. It has one drug called Cuprimine 250mgs. The prescription said Penicillamine. I am allergic to Penicillin, and the doctor said that I could take this drug, however the pharmacist noted on the bottle "DOCTOR SAID OK TO TAKE WITH PENICILLIN ALLERGY". I am not sure about this drug for me. My main reason for the post is the Vanderbilt Protocol, and if any of you have used it and gotten good results. Thanks................Niecy

[2manyfibers]

Hey Niecy - I saw your question about penicillamine and penicillin and thought I would try to help a bit. Penicillimine is a metabolite of penicillin (which basically means it's derived from it and only specific molecules of the penicillin are used to create it) and it has no antibiotic properties although it does suppress the immune system as an antibiotic does. It is often used to treat rheumatoid arthritis. From what I could find people with an allergy to penicillin should use caution when taking penicillamine although it doesn't appear that people with an allergy to penicillin are always allergic to penicillamine. So I guess the bottom line would be to use caution with it if you do take it - watch for the symptoms of an allergic reaction with your first dose or two would be the best way to approach it I would guess. Hope this helps. Here's some specific information from the following website (and there is more information available there too - you can do an internet search on "penicillamine allergy" and find a good bit of information):

http://www.emedicinehealth.com/under...s/page8_em.htm

Side effects: Penicillamine must be used with caution in individuals who are allergic to penicillin or who have kidney impairment. Penicillamine may decrease blood cell counts. Common side effects include nausea, vomiting, stomach pain, and diarrhea. Sense of taste may be impaired. Contact a doctor if any of the following occur:


Wheezing or breathing troubles


Unexplained fever


Sore throat


Unusual bleeding or bruising


Vision changes


Rash


Itching

[niecy]

Thank you toomanyfibers!! I have a hard finding things, and that was a great help. I am very unsure about taking this medication, my allergy to penicillin is respritory, and they didn't give me anything to counteract it if I did have a reaction. I think I will give my doc a call and see if he can use something else in it's place. Thank you again for your help............xxxxxxxNiecy

DRUG
INTERACTIONS: Patients who are allergic to penicillin may (theoretically have a sensitivity to penicillamine), but this is not common. (Penicillamine can increase the requirement for vitamin B6 (pyridoxine) and supplementation is advised.) Penicillamine should not be taken by patients who are also taking gold (Myochrysine, Ridaura, Solganal), antimalarial (Plaquenil), phenylbutazone (Butazolidine), or cytotoxic drugs (Cytoxan, Imuran, Rheumatrex)( because of similar bone marrow and kidney risks).( Penicillamine can weaken the protein (collagen) that is used to form body tissues.) Therefore, it is advised to reduce the dose when surgery is considered and resume full dose after the wound has healed.

The effectiveness of penicillamine for treating arthritis in children has not been established.

PREGNANCY: Penicillamine should not be taken by pregnant women with rheumatoid arthritis. Women with rheumatoid arthritis in whom pregnancy is suspected should discontinue penicillamine.

SIDE EFFECTS: Penicillamine can cause rashes early in treatment which usually resolve within days of discontinuing the drug. A late rash, seen after 6 months of treatment, may take weeks to disappear. Rashes can be associated with itching, which can often be controlled by simply adding antihistamine medication. Rashes associated with fever and joint pain usually require discontinuing penicillamine. It can also cause loss of appetite, nausea, abdominal pain, and loss of the sense of taste.

Penicillamine can cause( bone marrow suppression )and (serious kidney disease). All patients who take penicillamine require regular blood and urine testing for monitoring.

Penicillamine has an( unusual risk of inducing immune-related diseases, such as systemic lupus erythematosus, polymyositis, Goodpasture's syndrome and myasthenia gravis.)

That's some pretty serious side effects!! Don't you think?

Originally Posted by 2manyfibers

Hey Niecy - I saw your question about penicillamine and penicillin and thought I would try to help a bit. Penicillimine is a metabolite of penicillin (which basically means it's derived from it and only specific molecules of the penicillin are used to create it) and it has no antibiotic properties although it does suppress the immune system as an antibiotic does. It is often used to treat rheumatoid arthritis. From what I could find people with an allergy to penicillin should use caution when taking penicillamine although it doesn't appear that people with an allergy to penicillin are always allergic to penicillamine. So I guess the bottom line would be to use caution with it if you do take it - watch for the symptoms of an allergic reaction with your first dose or two would be the best way to approach it I would guess. Hope this helps. Here's some specific information from the following website (and there is more information available there too - you can do an internet search on "penicillamine allergy" and find a good bit of information):

http://www.emedicinehealth.com/under...s/page8_em.htm

Side effects: Penicillamine must be used with caution in individuals who are allergic to penicillin or who have kidney impairment. Penicillamine may decrease blood cell counts. Common side effects include nausea, vomiting, stomach pain, and diarrhea. Sense of taste may be impaired. Contact a doctor if any of the following occur:


Wheezing or breathing troubles


Unexplained fever


Sore throat


Unusual bleeding or bruising


Vision changes


Rash


Itching

[Jason]

Hi Niecy,

My experience and other people's experience i have read about shows that the Vanderbilt protocol does work, some people it takes a long time, some people get better a lot quicker but everybodies different. If your underlying cause isn't some type of infection it obviously wont work. Penicillamine has been prescribed to you because you have an allergy to penicillin and penicillamine very rarely causes problems to people like yourself. If you are worried then you can get your doctor to prescribe you an epipen which contains epinephrine which is what they would use for you if you were to suffer anaphlaxis from the antibiotics. The side effects etc of the tablet, well i think you will find even your common headache tablet to have a list a whole heap of side effects that very rarely even occur. Even natural remedies have the potential to cause side effects. If you have a good doctor treating you, i would put trust into him knowing what to do otherwise there is no point in paying for his consultations.

It is interesting to note that some lyme coinfections can cause shortness of breath like babesia and bartonella and taking antimicrobials will essentuate this when you treat. Although swelling of the lips, mouth and throat is a definite anaphalxis and obviously needs immediate attention. Did your doctor do bloodwork to test what infections you may be carrying?

[niecy]

Jason, thank you so much. You are so right, why pay a doctor then not use the treatment?? (Unless you are being treated for DOP) You have made a great point, and that is what I am going to do. My sister told me today that she has two epipens that I can have. If I am likely to have a reaction, it would be in the first day or two, right? I have been reading alot of posts today, and Tara has one, made today, can't remember exactly what thread, but it is speaking about chylemidea pneumonia, and even gets into MS and CFS, and a few others. I read alot of the info that she posted, and the Vanderbilt Protocol is very close to some doctors treatments of MS, and cp. The doctor ordered several blood tests, but he didn't order the cp test, he said he was quite sure I had it, and is just going to treat me for it. I will know the test results probably on Monday. My problem is that if I have it, I want the diagnosis on my medical records. I have been misdiagnosed many times, as I am sure all of you have, and I want to have all my ducks in a row, so to speak. I am going to pick up the epipen from my sister tonight, and I am starting the Vanderbilt protocol tomorrow. The post that I was reading by Tara also strongly suggested several supplements, and or herbs, to go along with the protocol, to make it work the very best that it can. Jason, you said you knew people on the protocol, were they diagnosed with cp, or lyme, or morgellons? Does this protocol cover lyme disease treatment also?? I appreciate you taking the time to reply, maybe others will relate their experiences also, so I will know a little bit more about what to expect while on this treatment. I wonder if any of the drugs on this protocol will help my eyes??? Thanks again Niecy

Originally Posted by Jason

Hi Niecy,

My experience and other people's experience i have read about shows that the Vanderbilt protocol does work, some people it takes a long time, some people get better a lot quicker but everybodies different. If your underlying cause isn't some type of infection it obviously wont work. Penicillamine has been prescribed to you because you have an allergy to penicillin and penicillamine very rarely causes problems to people like yourself. If you are worried then you can get your doctor to prescribe you an epipen which contains epinephrine which is what they would use for you if you were to suffer anaphlaxis from the antibiotics. The side effects etc of the tablet, well i think you will find even your common headache tablet to have a list a whole heap of side effects that very rarely even occur. Even natural remedies have the potential to cause side effects. If you have a good doctor treating you, i would put trust into him knowing what to do otherwise there is no point in paying for his consultations.

It is interesting to note that some lyme coinfections can cause shortness of breath like babesia and bartonella and taking antimicrobials will essentuate this when you treat. Although swelling of the lips, mouth and throat is a definite anaphalxis and obviously needs immediate attention. Did your doctor do bloodwork to test what infections you may be carrying?

[niecy]

Jason, I am not medically educated in any kind of way, so I am not exactly sure about what this last statement means? Are you saying that if I have a coinfection from lymes the treatment can make me worse? I am sorry that I don't comprehend these things any better than I do. xxNiecy

Originally Posted by Jason

It is interesting to note that some lyme coinfections can cause shortness of breath like babesia and bartonella and taking antimicrobials will essentuate this when you treat. Although swelling of the lips, mouth and throat is a definite anaphalxis and obviously needs immediate attention. Did your doctor do bloodwork to test what infections you may be carrying?

[Jason]

Hi Niecy,

I will try my best to cover all your questions - If you have a reaction to pencillamine it will most likely be in the first couple of days like you said. If you can get your hands on the epipens that would provide a little more comfort. Maybe just take one or two tablets and give it a break for a week to check for any reactions if you want to be precautious but your doctor is always your first port of call especially LLMD's they have the experience in this.


The queries on Chlamydia Pneumonia - Doctors and researchers like Dr Stratton and Dr Weldon and many more now believe after much testing at Vanderbilt University that Chlamydia Pneumonia plays a large role in unexplained diseases like Multiple Sclerosis, Chronic Fatigue Syndrome, Fibromyalgia, Rosacea, Lupus and the list goes on. The Vanderbilt protocol address the 3 life forms that exist in Cpn infections and aren't too much unlike Lyme Disease itself (as Lyme Disease too has a Cryptic phase). The reason for the endless supplements is that the antibiotics will cause large herxheimer reactions due to massive die-off of bacterial infection. If you also have Lyme disease on top of Cpn than herxing can be extremely tough. Another reaction that can occur with killing Cpn is secondary porphyria (its all outlined on the Cpnhelp website) people on the site generally use charcoal and other drugs like Benzodiazapine Drugs (anti anxiety) and Plaquenil which are also anti porphyria drugs. The supplements (list provided in Cpn handbook) main purpose are to rebuild and regenerate damaged cells and also assist in the detoxing of the body for all toxins that are raised by the die off initiated (porphyria and endotoxins) with the antibiotics and also protect the vital organs of the body . Its just a way of assisting your body to get rid of all the wastes. It is amazing how effecient the use of all the supplements are, you do go through a lot less pain.

The people on Vanderbilt protocol range from people being diagnosed only with Cpn, to people infected with Lymes and Cpn to people how haven't been diagnosed and have previously been diagnosed with something like CFS or MS. Everybodies different and everybody reacts differently to the protocol. Sarah who features prominently on the Cpn discussion boards and is the wife of Dr Weldon had late stage MS which crippled her. And she went from being in a wheelchair to a normal operating human being by doing the Vanderbilt protocol, their are many amazing stories of recovery and also many people how have gotten better but still not there yet.
The treatment for Lyme disease is slightly different depending on what you are diagnosed with, from my understanding there are different treatments for Borrelia to Bartonella and from Bartonella to Babesia, so your doctor will treat you based on what he clinically diagnoses and also look at what your blood results have to say. Although i have heard pretty frequently that people treating Cpn normally are also knocking down lyme disease at the same time as the antibiotics and natural herbs used are fairly similar.

The eye question - Well personally i had great difficulty with my eyes and ears for that matter. And once i started treating for Lyme Disease and Cpn my eyes got better to the point today i would never have known i had trouble opening them. The only remaining symptom of my eye i have and it is continuing to lessen is a slight twitch in the top of my right eyelid and its nearly gone.

Shortness of Breath question - Babesia a coinfection of lyme disease is reknowned for air hunger the feeling you get when you feel like you cant get quite enough air in your lungs. Anxiety seems to appear as well. Once you start treating with the Vanderbilt protocol you will find the antibiotics will start killing the pathogen and a herx reaction can occur which simply means whilst your body is dealing with massive loads of toxins trying to be released from the body your symptoms normally feel 3 or 4 times (maybe more) worse they normally are. Which is why its very important to start slowly. I know when the medication i take is working because i get the deep muscle aches, feel tired and fatigued, the crawling releases from my body, twitching becomes more noticeably, dull headaches and the list goes on. I use to get the shortness of breath and anxiety but as time goes on my herxs get less and some symptoms disappear all together.

All i can say is if you have Cpn or Lyme its not a smooth road but it is the start of your recovery and it may take a while but the key is to be patient and positive. If you can exercise as well it helps greatly some lyme docs have mentioned the spirochete of borrelia and maybe other bacterias are susceptible to your higher body temps when you exercise, it definitely helps me.

Hope i haven't missed anything

Jason

[niecy]

Jason, you are so kind to share your knowledge. I only hope that you are not aggravated by my questions, which to you are probably pretty boring. You do seem to have a vast amount of knowledge, and another member on the forum told me that I should listen to what you say, they hold you in very high regard. I am actually getting excited about starting the protocol, but there's another bug now. I was looking at the list of meds, and how and when to take each one, and I noticed that the pharmacist had marked out the mg that the doctor had prescribed, which was on the Penicillimine, from 125mgs twice a day to 250mgs. Well of course I called my pharmacist, and he said he had spoken with the doctor, and told him that that drug doesn't come in 125mgs. So off to the net I go, because the pharm didn't know if the doctor meant to go ahead and take two a day, or just one.............I can't find the icons on the quick reply, I would choose the one where you are banging your head on the wall!! Thanks again for your time..............Niecy

Originally Posted by Jason

Hi Niecy,

I will try my best to cover all your questions - If you have a reaction to pencillamine it will most likely be in the first couple of days like you said. If you can get your hands on the epipens that would provide a little more comfort. Maybe just take one or two tablets and give it a break for a week to check for any reactions if you want to be precautious but your doctor is always your first port of call especially LLMD's they have the experience in this.


The queries on Chlamydia Pneumonia - Doctors and researchers like Dr Stratton and Dr Weldon and many more now believe after much testing at Vanderbilt University that Chlamydia Pneumonia plays a large role in unexplained diseases like Multiple Sclerosis, Chronic Fatigue Syndrome, Fibromyalgia, Rosacea, Lupus and the list goes on. The Vanderbilt protocol address the 3 life forms that exist in Cpn infections and aren't too much unlike Lyme Disease itself (as Lyme Disease too has a Cryptic phase). The reason for the endless supplements is that the antibiotics will cause large herxheimer reactions due to massive die-off of bacterial infection. If you also have Lyme disease on top of Cpn than herxing can be extremely tough. Another reaction that can occur with killing Cpn is secondary porphyria (its all outlined on the Cpnhelp website) people on the site generally use charcoal and other drugs like Benzodiazapine Drugs (anti anxiety) and Plaquenil which are also anti porphyria drugs. The supplements (list provided in Cpn handbook) main purpose are to rebuild and regenerate damaged cells and also assist in the detoxing of the body for all toxins that are raised by the die off initiated (porphyria and endotoxins) with the antibiotics and also protect the vital organs of the body . Its just a way of assisting your body to get rid of all the wastes. It is amazing how effecient the use of all the supplements are, you do go through a lot less pain.

The people on Vanderbilt protocol range from people being diagnosed only with Cpn, to people infected with Lymes and Cpn to people how haven't been diagnosed and have previously been diagnosed with something like CFS or MS. Everybodies different and everybody reacts differently to the protocol. Sarah who features prominently on the Cpn discussion boards and is the wife of Dr Weldon had late stage MS which crippled her. And she went from being in a wheelchair to a normal operating human being by doing the Vanderbilt protocol, their are many amazing stories of recovery and also many people how have gotten better but still not there yet.
The treatment for Lyme disease is slightly different depending on what you are diagnosed with, from my understanding there are different treatments for Borrelia to Bartonella and from Bartonella to Babesia, so your doctor will treat you based on what he clinically diagnoses and also look at what your blood results have to say. Although i have heard pretty frequently that people treating Cpn normally are also knocking down lyme disease at the same time as the antibiotics and natural herbs used are fairly similar.

The eye question - Well personally i had great difficulty with my eyes and ears for that matter. And once i started treating for Lyme Disease and Cpn my eyes got better to the point today i would never have known i had trouble opening them. The only remaining symptom of my eye i have and it is continuing to lessen is a slight twitch in the top of my right eyelid and its nearly gone.

Shortness of Breath question - Babesia a coinfection of lyme disease is reknowned for air hunger the feeling you get when you feel like you cant get quite enough air in your lungs. Anxiety seems to appear as well. Once you start treating with the Vanderbilt protocol you will find the antibiotics will start killing the pathogen and a herx reaction can occur which simply means whilst your body is dealing with massive loads of toxins trying to be released from the body your symptoms normally feel 3 or 4 times (maybe more) worse they normally are. Which is why its very important to start slowly. I know when the medication i take is working because i get the deep muscle aches, feel tired and fatigued, the crawling releases from my body, twitching becomes more noticeably, dull headaches and the list goes on. I use to get the shortness of breath and anxiety but as time goes on my herxs get less and some symptoms disappear all together.

All i can say is if you have Cpn or Lyme its not a smooth road but it is the start of your recovery and it may take a while but the key is to be patient and positive. If you can exercise as well it helps greatly some lyme docs have mentioned the spirochete of borrelia and maybe other bacterias are susceptible to your higher body temps when you exercise, it definitely helps me.

Hope i haven't missed anything

Jason

[Gator]

Hello Jason,

I am Gator. I mostly read the posts and learn. I have been sick for many years now. I was happy to read about the Vanderbilt Protocol.

I have been going through a tough time for the past few months matter of fact for two years.

I wanted to ask if you have heard of the MMS or Miracle Mineral Supplement. It seems it is something someone used in Africa to cure Aids, Malaria, other ailments and may help all of us.

I can't stay at the puter very long because of the EMFs, but I wanted to share this and maybe you or someone can find out more about it and post what you find and think.

Praying that a breakthrough for all of our healing will come soon,
Gator

[Jason]

Hi Niecy,

Never a problem when writing a post to try and explain something, i am more than happy to try and help. I have gained much help from many people in the past and thats how you end up getting ideas of how to help yourself. Your lucky you have a doctor smart enough to put you on the vanderbilt protocol and also take the time to do tests and also work from your symptoms to work out what the problem is. There's not many of them out there but once you do find one try your hardest to keep them because you will get better with there help. I know i have.

Gator,

I have heard of MMS but i think its different to what your saying, i can have a read on it for you and get back to you tomorrow if thats okay?


Jason