Topic: Anyone have Pyroluria with their Lyme (quiz inside), Could be causing your Anxiety
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
What is pyroluria?
Pyroluria is a genetic condition that causes anxiety, depression and withdrawal most often starting in late-teens and continuing throughout the person's life. It can be very severe or very mild and very much affected by levels of stress. It's onset usually occurs with a traumatic incident such as going away to college or to the army, parental divorce or death of a loved one. There may be severe depression, schizophrenia, alcoholism, autism, bipolar disorder (manic-depressive disorder) or on rare occasions, DID (dissociative identity disorder more commonly known as multiple personalities) in the family tree. All of these are different manifestations of pyroluria.
Pyroluria is a blood disorder. When the body produces hemoglobin, a constituent of red blood cells, there is a byproduct called kryptopyrroles. Normally harmless, in this group of people the kryptopyrroles multiply too rapidly and block receptor sites for B-6 (pyrodoxine) and zinc leading to a serious deficiency of these two nutrients. Among other things, B6 and zinc directly help maintain a healthy emotional state.
Though pyroluria was identified over 40 years ago, it has only been recognized as a medical condition for about 10 years and many mental health practitioners are not taught about it in school. People with pyroluria don't respond well to common anti-depressants such as SSRIs and are often suicidal. It's wide-spread and estimates as high as 20% of all psychiatric patients and 40% of people with schizophrenia have pyroluria. It seems to affect women more than men. And the sad truth is that most people with pyroluria go undiagnosed.
Do I Have Pyroluria?
Here's a questionnaire to help you determine if you or someone you care about has pyroluria.
1. Do you tend to skip breakfast or have morning nausea?
2. Do you tend to be anxious?
3. Do you have other members in your immediate or extended family with schizophrenia?
4. Are there members of your immediate or extended family who have committed suicide?
5. Do you have white spots on your nails?
6. Did you get a "stitch" in your side when you ran as a child?
7. Did you have moderate to severe acne as a teenager?
8. Do you have pain or creaking in your knees?
9. Do you have cold hands and feet?
10. Do you have stretch marks as an adolescent or adult even without a large weight gain or loss?
11. Are your teeth or were your teeth before orthodontic treatment crowded with teeth growing over teeth?
12. Did puberty start a little later for you than others?
13. Are you easily tired?
14. Do you tend toward apathy?
15. Do you have a tendency toward iron-deficiency anemia or test borderline?
16. Do you have eczema or psoriasis?
17. Do you have tingling sensations or even tremors in your arms or legs?
18. Do you tend to have paler skin than other family members?
19. Do you tend to get overwhelmed in stressful situations?
20. Do you have trouble remembering your dreams?
21. Are you now or have you been a vegetarian?
22. Are you now or have you before been an alcoholic?
23. Do you find yourself socially withdrawn and dependent fairly strongly on one person?
If you answer yes to 12 or more of these questions, then you may have pyroluria and should consider getting the lab test done.
Testing
Along with the emotional instability, pyroluria causes a multitude of physical problems. See the pyroluria quiz for these physical symptoms as they may help the person or her practitioner point to this diagnosis.
A more conclusive way to determine if you have pyroluria is a simple urine test which can be ordered with or without a doctor's prescription. While there are several labs that do this test, Bio Center Laboratory 1-800-494-7785 is especially well-known for its accuracy. In my experience, this test is more accurate in those who eat poorly and don't take B6 or zinc in any form including multi-vitamins. The lab recommends avoiding B6 and zinc for 7-10 days prior to taking the test, but I find that those who eat a nutritious diet still test borderline even though they see a dramatic improvement with treatment. This lab test runs about $45.00 + shipping.
Caution. Even if you think you have pyroluria, please do not start on the B6 and zinc without getting the test done. These are extremely high doses of B6 and may cause problems in those who are not pyroluric. Specifically, these large doses of zinc will lead to dizziness, nausea and anemia.
Treatment
Recovering and controlling the pyroluria is not just a matter of taking B6 and zinc. The deficiency of these two nutrients lead to many secondary deficiencies such as manganese that will also need to be addressed. The encouraging thing about pyroluria is that the typical patient sees a great improvement within 24-72 hours, though it may take 3-6 months to reach a consistently stable level. Because of the varying presentations and severities of pyroluria, each person does best with a treatment plan specifically tailored to him. In my practice, this includes not just B6 and zinc, but classical homeopathy, herbs and diet to address the condition more comprehensively. Having a practitioner monitor this plan treatment to recognize symptoms over or under-dosing is essential.
Part of the pyroluria picture is less-than-optimal digestive health. If the person has had pyroluria for long enough or it's particularly severe, he may not be able to absorb B6 and other nutrients that are necessary through pills. These people take massive amounts of pills daily and don't see an improvement. I routinely offer injections to start the treatment process or prescribe a high quality liquid form of active B6 for the patient to pick up at the local pharmacy. In addition, I help the patient improve the health of their intestines so they can eventually absorb B6 and zinc through pills.
While pyroluria is a life-long condition, it doesn't have to control the person. The young woman I discussed earlier is happily re-engaged in life. And while she never forgets taking her B6 and zinc, she no longer has depression or delusional thoughts. In fact, when I last saw her, I asked about the rocking in the dark. She looked at me quizzically and said "did I really do that?".
I don't know if I have this, but I did answer 12 yes's to the quiz, so I will try the B6 and Zinc and see what happens. I hear this is common in Lyme.
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Interesting. I have 18 or so symptoms..Hmmm.. So many possibilities in this health maze. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
You also want to take Oil of Evening Primrose with the treatment. Be sure to have binders on hand, you will move metals from this.
I started it a few days ago. I don't feel too bad, but oddly enough, I'm very upset emotionally over something that happened YEARS ago .... and the timing of this incident happens to coincide with the timing of my first Lyme flare.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
how are you feeling Parfait?
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
lymeparfait
Unregistered
posted
I feel like I am draining fluids that I have been retaining.
I also feel odd sensations in my legs at night, like deep muscle or bone pain.
My ND is on this as well, and she feels more forgetful on the protocol as she progresses with it. She finds that mercury can cause this reaction in some. This is expected to rectify itself when the treatment is done.
Treatment length is estimated for 6 months , with re-testing in 3 months.
IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I just took 500mg of B6
50mg of p-5-p and 50mg of Zinc
all on top of a light dinner of course.
Don't take Zinc on an empty stomach or you will pay with nausea and possibly abdominal cramping.
They say many get better in as few as 72 hours, so I will keep you all updated.
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Somewhat similar, regarding a problem with a blood/heme and specific deficient liver enzymes, people may also want to take a look at this thread. Porphyria can also cause extreme anxiety, depression and many of the same symptoms as a herx reaction.
``HPU belongs to the non-acute porphyrias. Multiple chemical sensitivity (MCS) has been linked to porphyrin metabolism problems. . . .''
Ah, hah! I see the connection now. HPU can be a type of "chronic porphyria"
Lymetwister: thanks for all the info. here.
-
[ 04-30-2009, 12:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Thanks for the links Keebler. Kind of funny because one of the things I was reading was that those with Pyroluria have difficulty taking SSRI and other Antidepressants.
I actually had this problem as Anxiety was one of my first Lyme symptoms and all of those meds made me sick to no end. I couldn't even tolerate pediatric dosages.
The NeuroPsychoPharmacologist I was working with at the time suggested I might have a Polymorphism or mutation of the Serotonin Transporter Gene. I thought he must be correct, but after reading this, it would appear it is more related the cytochrome P450 enzyme. Not 100% sure as nothing is 100% but this article touches on what I'm talking about.
I'd be curious who else had trouble with SSRI's or SNRI's or Tricyclic AD's, etc.
posted
Well, I started it four days ago when I still had a cold. Since I'm still getting over the cold, I don't know if I feel so fatigued from the cold or the treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
This treatment is potentially dangerous if not being followed by a doctor. It will not only impact copper levels over time, but will free up many metals in the body. Major acute metal toxicity symptoms develop for many. I have been on it about a month - it has not been easy. Lots of binders, Detoxamin, etc. all guided by ART and my doctor. Don't take it lightly. It may turn out to be great, but it can cause major crashes in some if not done right. Not a do-it-yourself protocol.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
Good point, Scott. I was just looking tonight to see if I could find someone in my area who does this or acknowledges this treatment, but to no avail. From what I've read it's going to be an alternative type doctor.
Also, from what I've read on it, it doesn't look like a temporary fix. It appears that if you have this condition you have it and it requires ongoing treatment. Do you know anything about that? That is why I'm concerned for finding someone local here to help me.
Thanks for your help.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
lymeparfait
Unregistered
posted
Six,
What is exactly in the Depyrrol?
I translated the product page, but there was not a list of ingredients to be found.
Candida converts sugars into ethanol. Unused alcohol converts into acetaldehyde. If you have adequate amounts of glutamine, selenium, niacin, folic acid, B6, B12, iron, and molybdenum, aldehydes continue to be metabolized into acetic acid, which can be excreted, or converted further into acetyl coenzyme A. If these nutrients are in poor supply, aldehydes begin collecting in the body's tissues. So when we are fully nourished, candida furnishes the body with a necessary part of the Krebs energy cycle necessary for the health and maintenance of all cells. When our digestion is unbalanced, we incompletely convert sugars into poisons and they stay poisons in our human system. When our digestion is balanced, or we give it what it needs in terms of supplements, a potential poison is transformed into a source of energy--aldehyde poison becomes acetyl coenzyme A!
Kryptopyrrole is an avid aldehyde-reacting agent that has been shown to combine irreversibly with pyridoxal phosphate. The resulting kryptopyrrole-pyridoxal complex binds voraciously with zinc, and the combined product is leached out with the urine. (I understand the compound is actually hydroxy-hemopyrrolenone and not kryptopyrrole. See Clinical Chemistry 24(11)2069-2070 1978). This condition, termed as pyrroluria (or malvaria), has been found to respond readily to zinc and vitamin B6 therapy. Thus, acetaldehyde induces a deficiency of Pyridoxal 5` Phosphate (P5P) the major coenzyme necessary to form virtually all major brain neurotransmitters. It is involved in all transamination reactions, whereby cells may convert many different amino acids into each other to satisfy their ever-shifting, amino-acid needs. P5P is necessary to convert essential fatty acids into their final-use forms, and to turn linoleic acid into the key, nerve-cell-regulating biochemical, Prostaglandin E1. P5P helps regulate magnesium entry into cells, and the ideal level of excitability of nerve cells is strongly dependent upon their magnesium level. P5P is also necessary to convert tryptophan to niacin and niacin/niacinamide into the active coenzyme form, NAD. Unfortunately, AH is known to strongly combine with the protein portion of P5P enzymes in a way that displaces the P5P portion of the molecule. This subjects P5P to an increased rate of destruction, and results in abnormally low blood and tissue levels of this coenzyme. If fighting candida, you must supplement P5P.
Depression, which can affect hyperactive and hypoactive children, and perceptual disturbances are often the first indications of pellagra. Like people with schizophrenia, affected children may hear voices. Foods may taste different to them. Letters appear upside down, and words slip around the page. Children may see objects or creatures among the shadows in the semi-dark. Usually, children are unable to describe these changes in their perceptions without help. Dr. Hoffer's ``ABC of Natural Nutrition for Children'' includes a hundred-question Perceptual Dysfunction Test that can be completed by young children with the help of a parent. The PD Test was adapted by Dr. Glen Green from the HofferOsmond Diagnostic Test (HOD), which Dr. Hoffer and Dr. Humphrey Osmond developed in 1960 to screen for schizophrenia. The HOD test can be used to evaluate mental health in children over 10 years old although Hoffer says that some children may have difficulty with some of the vocabulary. The HOD test is available as a computer program at [email protected].
In addition to these questionnaires, a urine test can identify krytopyrroluria (KP), a substance commonly found in the urine of schizophrenic patients. This substance causes a deficiency of B6 (pyridoxine) and zinc by latching onto these nutrients and removing them from the body via urine. Hoffer has noticed that children with positive KP results also respond to B3. While all of these tests and questionnaires may point to vitamin deficiency, the primary test is to give the child large doses of niacinamide (often starting with 1 gram twice daily). If the child's perceptual and behavioral problems are caused by a deficiency, Hoffer says that improvement will be noticed within months (or sooner).
Pyrroluria is a common feature of many behavior and emotional disorders. It is an inborn error of pyrrole chemistry that results in a dramatic deficiency of zinc, vitamin B6, and arachidonic acid. Common symptoms include explosive temper, emotional mood swings, poor short-term memory, and frequent infections. These patients are easily identified by their inability to tan, poor dream recall, abnormal fat distribution, and sensitivity to light and sound. The decisive laboratory test is analysis for kryptopyrroles in urine. Treatment centers on zinc and B6 supplements together with omega-6 essential fatty acids.
If your child has a low arachidonic acid (AA) on the membrane fatty acid test, I would get a urinary pyrrole test. We have good data from the Hormel Institute on consistently low AA levels in autistic children with elevated urinary pyrrole levels. At least a third of autistic and ADHD children have high pyrrole. When you see pyrroles elevated in a child, you know two things right away: 1) very high zinc requirement, 2) very high B6 (prefer P5P) requirement. The higher the pyrroles, the greater these two are needed. Zinc picolinate may be preferred to other zinc supplements for the lack of B6 may cause the formation of picolinate to be suboptimal. Manganese will be required to balance the zinc. This is such key information; I always get this urinary screen. Sixty percent of Down's kids have pyrroluria. I have all Pyrrolurics (low AA) on Evening Primrose Oil.--Dr. Woody McGinnis (compressed). Walsh finds biotin very useful in ``slender malabsorber group''
Pyrroluria or Hemopyrrollactam Uria (HPU): Pyrrole is a toxin that interferes with liver detoxification (blocks cytochrome p450) and with heme production. There may be a need for niacin because B6 is required to convert tryptophan into niacin. Many of the children with HPU have low levels of histamine, which may make them more sensitive to allergies. One source of the elevated hemopyrrollactam (pyrroles) is intestinal bacteria (Irvine and Wilson 1976). Sometimes, a form of the antibiotics tetracycline and kanamycin turn off the production of pyrrole.
Symptoms of HPU are: paleness of the skin, especially of the face (pallor), recurrent ear infections, colds, allergy's, hay fever, skin reactions, hyperreactivity, dermatografy, headache, migraine, easy bruising, anemia, inability to climb a rope, climbing rack, or flying rings, abdominal pain in the upper left side, convulsions, in summer the skin is yellowish or golden brown, a bad set of teeth, hypermobility of the joints, growing pains, especially of the knee (left), changes in handwriting, white marks on their nails (zinc deficiency), sensitivity to sunlight (probably B6 deficiency), loss of appetite, stretch marks on the skin, sweetish breath odor, constipation, but more often an excessive stool mucus with bloating and a light colored stool, and learning and behavioral problems. Some depression patients have a genetic pyrrole disorder. Many of these persons report benefits from Prozac, Paxil, Zoloft, or other serotonin-enhancing medications. However, similar benefits may be achieved by simply giving these patients sufficient amounts of B6 along with augmenting nutrients such as magnesium and zinc.
HPU belongs to the non-acute porphyrias. Multiple chemical sensitivity (MCS) has been linked to porphyrin metabolism problems. In porphyrias, there is elevated porphyrins in the urine. Hormones play a part in the porphyrias. Dr. Raymond Peat has observed improvements in people with porphryia when they were placed on thyroid and/or natural progesterone--a good reason to support the thyroid as urged herein. You can get a urinary screen for elevated pyrroles for $32 from BioCenter Laboratory in Wichita, 1 800-494-7785. Collect the urine with the child off all zinc and B6 supplementation for two days prior. Dr. K.
IP: Logged |
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
SIx, off topic, but I thought your health was 100% now sfter Bionic treatment. Do you stll have issues?
I get so confused on Lymenet. Scott F said his health is 90-95%. Everyone's doing every possible treatment on Earth. Maybe I just don't comprehend things well and am missing the big picture.
Is the point if you don't treat everything possible 100% of the time, we all relapse and this disease is unbeatable?
It just gets impossible tracking down conditions that alternative docs only believe in and you must find the correct lab willing to test (out-of-network for sure), the correct doctor willing to treat, and of course shunned by all typical docs. It's demoralizing after a long time. I just don't find docs who believe Dr. K's stuff much. but it's not like I talk to thousands.
BTW, doesn't high B-6 have toxicity risks like numbness and others?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Yes, it requires ongoing treatment. There is no "fix", but the dosages go down to maintenance after a few months.
People can expect to get every symptom of acute metal intoxication. Headaches, metal redistribution, toxic feeling, brain fog, etc. It can be quite rough if you don't know what you are doing and I would never attempt it without a doctor that knows how to treat heavy metals on hand.
People that just decide to try this on their own could make themselves much worse and just because you stop the supplements when you feel worse doesn't mean the symptoms will stop as I understand. Metal redistribution can be very serious and permanent or long-term. So caution is advised and I don't think doing this yourself at home is wise at all.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
Not quite 100%. I still have babesia, bartonella and parasites. Lyme still is showing as resolved. I feel 90% except that I catch every little bug (cold, flu, stomach flu) that goes around .... five since Christmas! So, I still spend a lot of time with illness, just no Lyme symptoms.
I tried this hoping it would help with the parasite problem. I can't seem to get the babesia and bartonella to let go yet, though the symptoms are very minor, so I thought maybe if I treated the parasites I could then treat those other two more successfully.
I do have days where I'm 100%. All the details are in my blog.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
I am doing very few treatments. I have continued to use the Bionic for coinfections. I still have insomnia bad enough that my husband sleeps in the other room. I also have air hunger. Some minor fatigue. An inability to fight off any minor virus.
So, I recently got muscle tested and this treatment showed effective. I have parasites, babs, and bart. A few heavy metals.
I am using this treatment, resveratrol, andrographis. I still take thyroid meds. I take some sleep herbs. I will start Humaworm 4 weeks into this. That's all I'm doing right now .... well, and fiber and binders .... some coffee enemas for detox.
I'll do the Bionic when I finish up with the Humaworm to hopefully take care of babs and bart.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
What is the danger in taking some B6, p-5-p, and Zinc.
This is what I read as the treatment for Pyroluria. If it works, than great. What is there to monitor. These are OTC supps. I could see if you were taking massive amounts, but 50mg of p-5-p and 50mg of Zinc daily isn't dangerous that I know of.
I'm only asking because I started doing this yesterday and rather than wait for the kit and spend the $45-$50, if my anxiety eases up, then I know I have it assuming I change nothing else, which I don't plan on doing.
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I already answered those questions. Read the thread.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
Scott, It sounded like this is the treatment you were referring to when you addressed the issue of copper levels and moving metals:
Zinc Picolinate 200 mg 2 x day Trace Minerals 5 /day (these must be taken together) Gamm Magnesium and Copper ampules 2 x day P5P 100 mg B6 Borage Oil Capsules 2/day
It is a different thing entirely to take just the B6, 50mg p5p, 50mg zinc. What is the danger in taking this?
Posts: 797 | From New York | Registered: Feb 2008
| IP: Logged |
posted
I can say that within the first few days of taking the combo, I DID taste metals. I have done chelating for well over one year, not counting the chelating I did back in 1991, so these metals were deeply embedded ones that were moving.
I believe Scott's concern is this moving of metals. If metals move to a less desirable place it can be trouble.
I also had a herx of sorts, for lack of a better term for it, of the emotions that were involved in the start of my illness back the first time I got sick from Lyme in 1982 (got bitten before that, but this was the first time I got sick), so something strong was going on in my body with this protocol.
Today I'm doing MUCH better.
I am taking just the ones you mention, but with a higher level of zinc and with oil of evening primrose.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I have read that when you start tasting metal, that is a sign that you Zinc levels are getting high and you should back down a bit. In other words drop your Zinc dose down a bit until the metal taste goes away.
I saw this in quite a few sites.
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
posted
My test came back a high positive. Just started treatment. My MD wrote and article on his website about it after going to a seminar with Dr K. If you are interested in the article,please pm me for his website addy. Here is also a very good book about it. Depression Free Naturally Joan Mathews Larson What Scott said about not doing this yourself is right on. Healing Blessings Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
posted
I started it when I was at the tail end of a cold, so I felt bad already. As the days have gone on, I have felt better and better as the cold is going away.
I had a little metal taste in my mouth for a while. Emotional stuff that used to bother me isn't. I don't feel any better or worse yet. Yesterday was one week for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I've been taking supplements x 3 days now with no problems.
B6 500mg p-5-p 50mg Zinc 50mg
So far, no problems and feeling a lift in my anxiety each day.
Again, I will watch for the metalic taste of the Zinc as I increase the dose. The only thing I still have is this crazy shaking when I wake up. It quickly goes away after I'm up and drink some hot tea with my Klonopin, which I've been on for years. Doesn't make sense and I will start a thread on this to see who else has this.
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
posted
I just fell out of bed, so I might be reading this incorrectly. The test for this does not specifically indicate a genetic abnormality, yes? Only the presence of the metabolites or absence thereof?
Thus, could the condition of being B6/Zinc etc... deficient be induced by lyme anyway, which is known to mess with all sorts of metabolically-linked phenomena.
I'm not saying nobody has this, but I'm wondering there would be a lot of "false positives", people who are dysregulated because of their illness, as opposed to having the genetic cause of pyroluria "proper"?
Posts: 690 | From East coast, USA | Registered: Jun 2006
| IP: Logged |
posted
Can you do this protocol with almalgams in? Anyone doing this protocol with amalgams in?
Thanks!
Posts: 861 | From USA | Registered: Dec 2008
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
It doesn't really matter much if the KPU is genetic or otherwise-induced. It ideally needs to be addressed when present. It can be induced by toxins, stress, infections, etc. but may also have a genetic component in some.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
Perhaps it makes no difference if it's genetic or infection induced .... but what I wonder if is those of us who might have it genetically are symptomatic of Lyme because of it???
I fit the genetic profile - china doll complexion (at least when I was young ), all sisters, psych problems in family, etc. Which came first? Lyme or Pyroluria? Is one because of the other? My only symptomatic child is also very pale, etc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I can understand ensuring its treatment, but I just don't want anyone to mistake their lyme symptoms as the genetic pyroluria, and stop treating their lyme. All of the symptoms can also be caused directly by lyme or other TBI, so I'm sure it will be confusing.
If anything, the lyme complex should teach us that everything has a cause - fibromyalgia and chronic fatigue are caused by something, for instance. Treat the symptoms, but unless you treat the underlying cause as well, its unhealthy.
I just don't want people to race off to treat something else that could very well be another symptom (In the non-genetic cases), instead of the cause itself, especially when the protocol is potentially dangerous.
Posts: 690 | From East coast, USA | Registered: Jun 2006
| IP: Logged |
posted
Blackstone, I don't think anyone is thinking this is instead of Lyme.
I have had a definite lowering of anxiety. I didn't realize I even had anxiety till it went away. I asked my husband if he thought I had anxiety issues, and he said yes, LOL. He also said he had noticed that they have been much better since starting this protocol.
I'm a bit fatigued, but other than that and some brain fog, I'm feeling good.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Dear Everyone, This really makes a lot of sense. I fit the profile. At least now I may finally have a medical explanation for why I can sit in the sun all day and barely get any color. My temper is explosive and always has been. This is a trait of my father's side of the family.
Being very emotional, the slightest thing can upset me for a long time. I have always been extremely sensitive. Pellagra is something I had so badly, I cannot tell you how many doctors I had to tell I was not pregnant. The sensitivities to perfumes, scented cleaners, and food are so much like morning-sickness sometimes it is difficult to explain to others why you cannot be around them. As a child, I had (and still have) numerous allergies.
Strawberries, tomatoes, food dyes, scented soaps, mold, pollen, feathers, ragweed, cottonwood, dog fur, rabbit fur, certain grasses and trees (including pine), dust, and dustmites are still troublesome. Asthma medication was used from ages 10 to 18. I was anemic at age 17, but it cleared up after stopping the heavy periods causing it. I had Bronchitis twice annually from birth until 18 years of age. Repeated courses of antibiotics had to be given often, so regularly taking between 2 and 4 courses per year was typical. Being sensitive to sounds and light is yet another thing I match up with on the list of symptoms for this condition.
I would rather wait and get a test done. It is not overly expensive. That is good. Self-treating can be dangerous. A friend of mine did that and ended up trapping metals in her kidneys and liver. I would feel safer having a doctor treat this, or any other condition requiring specified treatment. I will also be sure to keep P5P in mind, since I am having extreme difficulty in fighting off a massive overload of yeast.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
It's been a month....
Updates anyone?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Are most llmds familiar with this disorder, how to test, and treat it?
Or is there a particular type of specialist we have to use? Thanks.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
posted
Hi Tracy, I have been on it since 4/16/09.I am hopeful that this will be my big turn around.It is rough,but everything has been for me. My anxiety seems to be calming down. I can tell when metals and other toxins are being released do to yukky taste in my mouth.I am doing LOTS of sleeping,which is new for me and seems more normal. Sleep and rest is healing. I am seeing stress is a big part of this. I was really stressed by some thing and anxiety reared its head big time,as I seemed to dump the zink and others supps. Its all making sense when I look back.Stress, being exposed to toxins,having 18 mercury fillings taken out, chelating,killing lyme and co and many other neg experiences. And how ill I have gotten with all these things.Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
linky,
Pyroluria is a kind of chronic porphyria. But tests are not always possible.
Most doctors are not very knowledgeable about porphyria in general and you would want a specialist.
It takes a very special doctor to have the patience but, you might look for a liver specialist or find a doctor knowledgeable about the various kinds of PORPHRYIA from links here:
posted
Wow, finally something I'm pretty sure I DON'T have. Maybe 4 or 5 of the symptoms and almost none before I had Lyme. I guess I am blessed.
Posts: 462 | From Newnan, GA | Registered: Aug 2004
| IP: Logged |
posted
Hi Hobo, If I would have answered these questions 4 yrs ago,I would have answered no to most,but after I started lyme treatment as the months went on,there would be more and more yeses. Quite interesting.Glad you don't think you have it.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks for the updates. (Hi, Healing!)
Well, I answered yes to 14 of the questions, plus I have other symptoms associated with this that aren't mentioned in the test..... so, it's a possibility for me.
I researched the Bio Center Lab in Wichita..... here's a blurb about testing and link to the test page on their website... $50.00 plus the shipping.
quote:A more conclusive way to determine if you have pyroluria is a simple urine test which can be ordered with or without a doctor's prescription. While there are several labs that do this test, Bio Center Laboratory [in Wichita, KS] 1-800-494-7785 is especially well-known for its accuracy. In my experience, this test is more accurate in those who eat poorly and don't take B6 or zinc in any form including multi-vitamins. The lab recommends avoiding B6 and zinc for 7-10 days prior to taking the test, but I find that those who eat a nutritious diet still test borderline even though they see a dramatic improvement with treatment. This lab test runs about $45.00 + shipping.
Here's the page to order the test kit online from the lab - $50.00 plus shipping.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
I'm doing great on this protocol. I really feel it was the missing piece for me. I felt toxic for about two weeks. Then felt better, then had the immune system kick in and felt virusy for about three days.
Now I'm doing great. I feel good every day. I have little anxiety or other psych symptoms. It was huge for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
so, pyroluria is a genteic condition, not a symptom of Lyme. Just having Lyme lets all teh genetic time bombs come alive. I guess it weakens your already gentic weakness. My whole family had hiatal hernia probs, but I never had an issue with it till I took Flagyl. Ten years later and it's still one of my worst symptoms.
Posts: 462 | From Newnan, GA | Registered: Aug 2004
| IP: Logged |
posted
I don't think the Lyme makes it come alive .... IMO. I think it's more likely the other way around ... I think it can be what makes the system weak enough to let us get so sick. Why do some get bitten by ticks and never get ill? They are strong enough to fight it off.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Thanks for the HI,Tracy. From what I have read it can be genetic and maybe caused by stress, toxins,infections etc. I think with this coming out that peeps with chronic illness may have this,we will be learning more and more.I received Scotts great news letter yesterday betterhealthguy.com and he has lots of info on it. Six,its so good to hear you are doing so well. You seem to be the only one I know that is not having a hard time on this protocal.That is great.
[ 06-16-2009, 09:28 AM: Message edited by: Healing in Santa Cruz ]
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Keebler, I'm still kind of confused about Pyroluria and Porphyra, though you and others have tried to explain this in different posts.
I guess Pyroluria is a malfunction of mineral processing due to a deficiency, and Porphyra is a deficiency of certain liver enzyimes? Does that sound about right?
Now as to protocols to treat each problem, then I REALLY get confused.
Dr. K's KPU protocol - that's for Pyroluria? If so, what do you do for Porphyra?
Very sorry to be so dense about this... it just isn't sticking in my brain.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Keebler,
You are right, saw my llmd a few days ago and asked him about it and he said, 'never heard of it.'
My son, daughter and I all have lots of the symptoms. Thanks for the link!
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Porphyria is the bigger picture, as I understand it. KPU is a type of toxic porphyria. I'm too tired to look up if KPU is the same thing as Pyroluria, but pyroluria is a kind of chronic porphyria. And that is something most doctors really don't want to admit can exist.
From Wikipedia: " . . .According to Carl Pfeiffer, pyroluria is a form of schizophrenic porphyria, similar to acute intermittent porphyria where both pyrroles and porphyrins are excreted in the human urine to an excessive degree.[16] . . ." end excerpt.
--
I have a problem with just how quickly nearly any kind of porphryia can be called "schizophrenic" - and most doctors think only of the Madness of King George III, who had periods of madness due to porphyria.
However, the fact remains that porphyria can cause a wide range of symptoms, both physical and neurologicial (that can affect behavior or mood).
--
As for what to do for porphyria, that depends upon the type but, generally, Beta Carotene is the best thing. And avoiding certain drugs and food. NOT fasting is also important. One may need more carbs and yet, while sugar can sometimes literally save the life of a person with acute porphyria, it's a tricky task to figure out the balance of carbs to manage this.
This can be managed and, if just from too many toxins, can get better after treating infections. Infections can make porphyria worse but there's that double edged sword of finding meds that are easier on the liver - and using liver protection, too.
However, if you suspect this might be genetic, tests might be good for everyone in your family. They are not easy tests and not always accurate, either. But, if you have ever had blood relatives who had severe reactions to drugs, that is suspect for the genetic connection.
For some of us here, the toxins from lyme alone can cause the kind of toxic porphryria, or KPU, that Klinghardt discusses. His protocol seems good. However, I'm fairly shocked that he did not mention Beta Carotene or carbs for emergencies.
As for testing KPU with a urine test, if another kind of porphyria is involved, the urine test may be inadequate. Normally, blood, urine and stool are all tested with different measures.
=============
As for finding doctors who understand all this, good luck. The doctor who dx me about 14 years ago retired and there is no one who I know of my city who knows of this. My PCP reminds me now and then if I ask about a drug, so that is good. But he is not familiar enough to treat and I'm just too tired to do all the research I need to anymore. I just do the best I can with what I have.
You might find doctors by contacting the organizations in the thread below, although, it seems like Klinghardt's website (about neurotoxins) and articles come the closest on knowing about both lyme and at least the toxic kind of porphyria. His office may have doctors he refers.
posted
Not sure if anyone here has done the protocal for a year. I feel its a wait and see if it clears the Pyrroluria problem.Keebler maybe but I think she may be working on the other P problem. I hope others will chime in here, also on the other thread where you asked about symptoms people are having with the protocal.
[ 07-27-2009, 02:35 PM: Message edited by: Healing in Santa Cruz ]
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I am doing A.I.
Over time, I came to be taking all the supplements in the KPU protocol without knowing about KPU as a specific situation.
I don't dare discontinue B 6 and zinc for long enough to do the urine test!! B 6 helps head off seizures for me.
I am hopeful that A.I. will address the KPU situation.
I just finished Round 4 of A.I., and am ready to send off my next sample!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
lymeparfait
Unregistered
posted
Thanks Healing and Cass. Just finished round 4 as well.
WE will all be able to compare final notes and thoughts based on our own responses in a year or so I guess.
I'm expecting good things for all no matter which direction, AI or KPU or both!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic